Why You Shouldn't Be Afraid of the RPLND Surgery for Testicular Cancer

The retroperitoneal lymph node dissection surgery (RPLND) is a really gruesome and highly invasive surgery for some testicular cancer patients. It can be used as a primary form of treatment for some Stage I and Stage II patients that have been diagnosed with nonseminomatous germ cell tumors (NSGCT), and can also be used as a secondary form of treatment for the post-chemotherapy management of residual masses.

The surgery involves a long incision from the sternum to a few inches below the navel, and then one side at a time, the patient’s innards are scooped out and folded onto the other side, while the retroperitoneal lymph nodes that testicular cancer tends to spread through are removed. The average surgery time runs about 6-8 hours for a full open bilateral RPLND surgery, and the inpatient hospital stay ranges anywhere from a few days to a week or more depending on the center this is performed at. The full recovery time where you'll need to limit physical activity to heal is 4-6 weeks, but you’ll feel it for longer than that! The surgery is horrifying to many newly diagnosed testicular cancer patients and caregivers when they first read about it.

Many will gravitate towards chemotherapy thinking that it’s “easier”, but I’m here to tell you not to be afraid of the RPLND surgery. It might actually be the better option for some.

Chemotherapy Isn't Easier

First off, there’s nothing “easy” about chemotherapy and being sick as a dog for months on end. Is that really easy? The RPLND isn’t any fun either, but as miserable as the surgery and my weeklong hospital stay was, everybody muscles their way through it, and looking back at this six years ago, it was a blink of an eye compared to months of misery on chemotherapy. It’s true that I was in quite a bit of pain from the surgery for a while, but guess what? I was also in quite a bit of pain for even longer because of the chemotherapy! Some of the effects from chemotherapy are delayed and not felt immediately, and I ended up developing terrible chemotherapy induced peripheral neuropathy symptoms such as shooting nerve pain, chronic muscle fatigue and weakness issues, along with persistent numbness in my feet, and loss of sensitivity in my hands and even my skin as a whole. It took many of these symptoms years to go away, but some have remained even to this day and are fully permanent (and annoying) side-effects.

One should never underestimate the potential for long-term effects of chemotherapy. In comparison, I have zero long-term side effects from the RPLND surgery, besides the loss of fertility. This surgery is far more difficult if done in a post chemotherapy setting due to how sticky our innards can become after, and fertility can almost always be preserved if done prior to chemotherapy and at a high volume center. My ejaculatory nerve was said to be spared by one of the world's very best RPLND surgeons, but I still suffered a complete loss of fertility despite that.

Chemotherapy Has The Better Chance At A Single Therapy Cure, But Is That What's Best For the Patient?

Major institutions have favored chemotherapy for patients over the RPLND surgery because chemotherapy typically has the best chance of a single therapy cure, but this isn’t necessarily what’s best for the patient. In my case, arguably no. With my diagnosis of a Stage IIB NSGCT testicular cancer, I could have done the RPLND surgery first, but never even asked because I was too afraid of it. I jumped right into EPx4 chemotherapy, thinking it was easier. It wasn’t. Had I done the RPLND surgery first, my fertility most certainly would have been preserved, and with surgical removal doing most of the heavy lifting of ridding my body of cancerous cells, I likely would have only needed 2 clean-up round of that EP chemotherapy rather than the full-bore 4 rounds, which would have affected my body significantly less.

For young adult cancer patients, the longer view needs to be seen. We have the potential to live for many decades after our cancer fights, and thus we’ll also have to live with whatever long-term and permanent side effects develop from treatments for quite a long time. In short, my body would probably be in much better shape today and have far less dysfunction had I done the RPLND surgery first, as it probably would have allowed me to do less of that chemotherapy later. At the time, I just had no appreciation for how much chemotherapy could affect our bodies long term, but I do now.

Lower Recurrence Rates with the RPLND SUrgery

The RPLND, when done as part of primary treatments, also reduces the overall risk of recurrence, and of late-recurrences of the disease. For patients that have already been through primary chemotherapy but have residual lymph node masses > 1cm, I say don’t leave it to chance. Even if tumor markers are negative, and there was no teratoma in the initial pathology, about 1 in 10 times they’ll still find something, either active cancer or teratoma. Any active cancer that still remains after the hard-hitting chemotherapy treatments is extremely dangerous cancer to deal with, and much better surgically removed at the time of primary treatments, rather than allowing it the chance to spread and the potential for having to face the even more toxic salvage and/or high-dose chemotherapy regimens later.

Peace of Mind Matters

Not written in any literature, but there's also a huge potential peace of mind benefit to doing the RPLND surgery, knowing that you left nothing to chance, and did everything that you could possibly do. I had to think of not just what was best for me, but for my family and my two young children. I didn't want to put them through this hell again, and so if there was even one stupid little cancer cell left in my body after chemotherapy, I wanted it gone via the RPLND. I developed PTSD in my years after cancer, and at times when I was so afraid, knowing I had done the RPLND surgery and left nothing to chance, was about the only frayed thread of sanity that I had left.

I’m glad that I did the surgery, and with the wisdom of many years of cancer survivorship behind me now, I’m here to say not only to not be afraid of this surgery, but that it might actually be the better option up front than chemotherapy in some cases. Talk with your doctors, talk with other testicular cancer survivors, explore all options, and get second opinions with experts at high-volume centers for testicular cancer. It's not just your life that's on the line, but your potential quality of life that needs to be protected, too. I feel blessed every day to be here, but my quality of life is less than what it could have been. Don't be afraid to ask the questions and challenged the preconceived notions that I didn't.

StevePake.com

UPDATE SEPTEMBER 2017: I see that this blog is getting a lot of hits, so figured I would link to some old information. Before I had a website, I "blogged" much of the active fight portion of my testicular cancer journey, including my RPLND surgery adventure, at the TC-Cancer.com web forum. Click the button above to go to a big thread there where most of my pre-website cancer journey is linked, or you can just go directly to my RPLND thread. I also had a fun little time with a lymphocele complication after the RPLND surgery that you can read about also!

If you have a question or comment, please do use the contact link at my website to get in touch. This is the very best and most reliable way to reach me, I typically respond to cancer related inquiries within 24 hours if not sooner, and I'm more than happy to talk people through the RPLND surgery or anything else!

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April is Testicular Cancer Awareness Month

April is Testicular Cancer Awareness Month, and as a 9 year survivor of this disease, I can tell you a few things about testicular cancer.

The first is that contrary to what people might expect, testicular cancer is actually the #1 form of cancer in men ages 15-44 internationally, yet almost no one talks about the disease. It’s sad and frustrating that 20 years after the founding of a very famous organization in yellow by a now very infamous testicular cancer survivor, that we still have to struggle so hard for any sort of public awareness about this disease. Testicular cancer in young men is about as common as breast cancer is in young women, yet no one ever talks about testicular cancer! In the U.S. alone, someone is diagnosed with testicular cancer every hour, and someone dies of this disease every day.

With an overall cure rate of over 90%, testicular cancer is a highly curable cancer, but it should never be considered an easy or a “good” cancer. Testicular cancer tends to be a pretty fast growing and aggressive form of cancer, and must be hit equally aggressively in order to get that cure. Orchiectomy alone, removal of the stricken testicle, can be enough to cure many Stage I patients, but the primary chemotherapy protocols and surgeries that are commonly used to treat people with metastatic disease are pretty rough, and can leave many additional physical and mental marks on people.

Regardless of the stage of the disease at diagnosis, testicular cancer is not an easy cancer to get through simply because of the younger men that it tends to strike. My 33 year-old self was unaccustomed to ever having anything more than the flu, and still believed that I was invincible and going to live forever. This loss of innocence and suddenly feeling so vulnerable at the prime of my life shattered my confidence. Mental health issues such as anxiety and depression are common, and posttraumatic stress to varying degrees is certainly not unheard of, either. Another thing that young men aren’t typically accustomed to doing, is asking for help when they need it. The rarity of young adult cancers can tend to leave survivors feeling very isolated and lost, which is why finding support from the young adult cancer community is essential. Regardless of gender or cancer type, young adults tend to face so many of the same inner struggles after a cancer fight. No one needs to fight alone.

There are a few risk factors for testicular cancer that include an undescended testicle, a family history of the disease, and being Caucasian, but most testicular cancer diagnoses simply come down to bad luck. Signs and symptoms include a painless lump or any change in size or any irregularity in the testicles. Pain or discomfort in the testicles, or any pressure sensitivity is certainly a potential sign, along with a dull ache or a sense of pressure in the lower back, abdomen, or groin. More advanced signs include significant weight loss, back or chest pain and coughing or difficulty breathing, and enlarged lymph nodes in the abdomen or neck.

Because testicular cancer isn’t preventable, monthly testicular self-exams are recommended for all men, and boys starting at 13. There are some groups out there that say not to bother, given that testicular cancer is so curable at any stage. This is terrible advice. Don’t listen to it. Just because a cancer has a high overall cure rate, doesn’t mean you should ignore any signs or symptoms until you have very advanced stage disease. I was lucky in that I actually had pain in my testicle that clued me in that something wasn’t right, and a thorough self-exam found the solid mass. Not everybody does, and that painless lump can quickly turn into a very dangerous advanced stage cancer in just a matter of months. Poor risk testicular cancer has a 50/50 cure rate, no better than a coin toss! Why leave your life up to a coin toss?

Believe me when I say that if you’re going to develop testicular cancer, you’re much better off catching it an early stage rather than late, as you’ll avoid significant trauma to both mind and body if you’re able to avoid some of the harsh treatments and surgeries that are used to cure metastatic testicular cancer.

There’s nothing to lose with a regular feel down below, and it could save your life.

StevePake.com

Testicular Cancer Awareness Month Articles by Steve Pake

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Cancer Is Not Just Rogue Cells - And Not Just Inside the Patient

A few words for World Cancer Day 2017.

As I approach six years of cancer survivorship, never has it been more clear to me that cancer is not just a disease of our physical bodies, but a disease of our minds and souls as well. Thus, the argument that many make, is that cancer is not just a matter of eradicating the rogue cells from one's body, but of curing the entire patient. To rid a patient of the physical disease, but to ignore the residual emotional and spiritual disease, does not a cure make.

In these six years after cancer, there's much more that I've had to overcome than a bit of testicular carcinoma. The chemotherapy did a number on my body, and I've had to overcome chronic fatigue because of chemotherapy induced peripheral neuropathy, but those were the easy parts. My anxiety was overwhelming at times, and I constantly feared that my cancer would come back. Some friends of mine didn't make it, and on several occasions, I thought for sure that my cancer had returned, and that I was next. I fell into depressions several times, and suffered from posttraumatic stress. I struggled emotionally for years, and even four years out from cancer, I couldn't stop being afraid.

Irregular hormonal levels for several years didn't help, either. Doctors of testicular cancer patients all seem to believe that because men have two testicles, that the other will "pick up the slack" and that we'll be able to keep flying along as normal, like a twin-engine aircraft. We survivors know otherwise, that it's not necessarily true, not nearly that simple, and that there's actually no evidence out there to support such assumptions, as no studies have ever been done! Because our testosterone levels might still test in an impossibly wide "normal" range, we're sent packing. Meanwhile, our moods, energy levels, and mojo can be flailing around all over the skies from 30,000 feet down to treetop level and back again, barely able to stay in the air at times. While having to contend with so many post-cancer fears, we're also having to contend with non-compliant bodies, and doctors that don't understand our problems. Life after cancer can be so cruel and unfair.

Loved ones and caregivers suffer right along with us, and should not be overlooked anymore, either. Where there is love, there's transference of emotion, transference of anxiety, and transference of cancer as a disease of our minds. Yes, caregivers suffer from the disease called cancer as well, and for them, it tends to be a more silent battle. They need to be strong and the pillar of support for the ones doing the physical fighting, but feel the same fears and anxieties as the actual patient does. Caregivers are fighting cancer as a disease of their minds, too, and deserve equal consideration for care. Don't just ask how the cancer patient is doing - ask how their caregivers are doing as well. It's entirely possible that no one has ever asked, while they're crumbling inside in the same way as the patient.

Survivorship care has come a long way in six years, but there's still much to this fight that's not well understood in medical professional circles, and so the drive to share in our journeys and our many struggles after cancer continues.

StevePake.com

Originally written for World Cancer Day at the Cancer Knowledge Network

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Negotiating Surveillance and Long-Term Follow-up for Testicular Cancer

The National Comprehensive Cancer Network (NCCN) Guidelines are the bible by which Testicular Cancer patients are treated and managed. The follow-up care recommendations within these guidelines only goes out to 5 years, and even within those 5 years, there's been some significant adjustments to the recommendations over time. It's entirely possible that if you were diagnosed with testicular cancer within the past few years, that you might be able to make some adjustments to your follow-up schedules in favor of fewer scans or appointments, but what do you do after that? It's up to you and can go on a case-by-case basis. Here are some answers.

Changes to NCCN Follow-Up Recommendations Within Years 1-5

The NCCN Guidelines are literally the most important guide for any cancer fighter or survivor to have, and the bible by which doctors should be treating their patients.

First off, there have been many, many changes to the NCCN follow-up recommendations since I was diagnosed with testicular cancer in 2011, and the latest testicular cancer guidelines (2-2017 as of this writing) states that "further study is required to define optimal follow-up durations." In other words, they just don't have the evidence to know what the best answer is here. What is too much and what's too little? Scan frequency has gone down quite a bit to minimize the risk of secondary malignancies from radiation exposure, especially from CT scans, but they don't have the evidence to know where the sweet spot is, thus making these follow-up schedules very much open to debate and negotiation. Yes, your follow-up schedules for testicular cancer are negotiable.

In my case, for Stage II non-seminoma good risk disease treated with both primary chemotherapy and the RPLND surgery, the changes to the follow-up recommendations have been significant. At the time of my diagnosis in 2011, the NCCN guidelines called for as many as 20 scans (chest x-rays) and follow-up appointments over 5 years. I was seen at Memorial Sloan Kettering Cancer Center (MSKCC) in New York who went above and beyond the guidelines, and I had a total of 27 chest x-rays over the years, with 18 of those coming in the first two years alone. Given I had the RPLND surgery, only one CT scan was needed 4 months post-op, and otherwise just chest x-rays for me. 

As of 2017, how many scans are recommended by the NCCN guidelines for someone like me now?

SEVEN.

Just 7, with 8th and 9th scans in Years 3 and 4 being optional, and no scans at all in Year 5. Granted, I'd still need a total of about 16 office visits, but that's still a whole lot less stressful than twenty-freaking-seven. When I first saw how significantly the NCCN follow-up recommendations had changed and how many fewer scans they were recommending these days, I about fell out of my chair, and then needed to go sulk in a corner for awhile. This is really great news, as it shows that, yes, treatments for testicular cancer really are highly effective and completely curative most of the time, and that there really isn't a whole lot to be afraid of, despite the unavoidable and unimaginable amounts of worrying that it brings patients. Most people are just fine after treatments. Thanks to our collective piles of chest x-rays and CT scans that have never shown anything for most over the years, testicular cancer survivors will have far fewer scans to worry about after treatments today, and that's a very good thing.

Making Mid-Course Surveillance Schedule adjustments

A part of me regrets not questioning so many scans, especially now that not even a third of those scans are required today, but that's water under the bridge at this point. It wasn't easy, to put it mildly, but I got through them all. If you were diagnosed with testicular cancer a few years ago, there's a chance that you might still be on a more scan-heavy schedule. If so, you might be able to modernize your follow-up schedule after review with your doctors. Here's what you can do:

1. Download the latest NCCN guidelines by registering for free at the NCCN website. Navigate to the Guidelines section, then to Cancer by Site, and then Testicular Cancer to get to them. Find the follow-up table that's relevant for your cancer about midway through the document based on type (seminoma or non-seminoma), and then stage, treatment path, and level of treatment received, and pay close attention to the super-scripted notes. Review what the current follow-up recommendations are now, against what you're actually doing. It might be quite different.
    
2. Review With Your Doctor. With how many scans they've pulled from the follow-up schedules in recent years, chances are you might not need nearly as many now, or perhaps you could just do chest x-rays for scans and skip any further CT scans at this point, followed by the usual history and physical, and blood tumor marker checks? No more CT scans, wouldn't that be nice? If you look very closely in the guidelines you'll also see that scrotal ultrasounds are now mentioned as well. Sound like something worth doing? It was for me, and I'll get to that below.
    
3. Do What's Best For You, with Your Doctor's Blessing. Whether you're at the point of cutting yourself free from oncology care if you so choose, or are making mid-course corrections between 1-5 years out, do what's right for you, so long as your doctors are on-board with your plan. There's both "scanxiety" from the follow-up appointments, but also anxiety from not having them. I don't know of a single person that actually enjoys getting CT scans done, but some might have more anxiety without them. Be true to yourself and your needs. If you're struggling, it can be worth it to make adjustments, and still meet the standards for care.

Of course, now that I've made it through 5 years and twenty-seven freaking scans, I have the moment of revelation that maybe I should have asked more questions than I did, but most of these scans were in the first two years, and before the NCCN started pulling back on the number of scans required. What's done is done, and I'm happy to have exited my 5 years of active surveillance. 

How To Make Your Post 5 Year Follow-Up Plan

So, what to do after 5 years? Here's what I did.

You're the patient, you're the boss. You can do whatever you want to do after 5 years. If you feel like you're ready, you can opt to be formally discharged from oncology care, or if not, you can continue to be seen at whatever interval you're comfortable with. Your doctor will be more than happy to keep seeing you. It's up to you, and there's no right or wrong answer. The correct answer is whatever you're comfortable doing, with considerations for any specifics of your case, and that your doctors are on-board with.

For me, with good risk disease, primary chemotherapy and the RPLND which most people in my risk classification tend to skip, I just needed to be cut free. If I'd only had 7 to 9 scans and a dozen and change office visits over the years as opposed to 27 of them, maybe I'd still want annual follow-ups with my oncologist. Maybe I'd still want annual follow-ups had I skipped the RPLND, and I'm quite certain I'd still want them were I in a higher risk group. Instead, I've found myself totally and completely burned out emotionally from so many oncology office visits, and I just didn't want to have to keep going if there was no compelling reason to do so. I love my oncologist and he's a great guy, and my favorite oncology nurse (hello Trish!) has become a friend for life type with me, but I just needed to walk out of that office for once without another appointment scheduled. I really needed that like nothing else, otherwise everything would just keep perpetuating in my mind. I needed the closure of not having to go back, and so we developed a plan that supported that.

The first condition for my formal discharge from oncology care, both from my wife and from my oncologist, was the insistence that I have an annual physical exam done by my primary care every year. No problem there, and cancer survivors especially should have these done annually as it is. Next up, scans or no scans? For my stage of disease and level of treatments, one is more likely to see a false positive from a chest x-ray at this point than disease recurrence, and so I opted out of any more chest x-rays. I think 27 has been more than enough. Although my tumor markers (bHCG and AFP) had always been negative and resulting blood work not that useful, I elected to continue doing these. You're having blood work done at an annual physical anyways, so why not throw it in? Continuing with these tests are useful for catching a potential second primary testicular carcinoma that might have a slightly different signature, and that could be positive for these markers.

Testicular Ultrasounds. This is something that I'd highly recommend doing for every testicular cancer survivor out there at least annually. Testicular ultrasounds weren't in the NCCN guidelines when I was diagnosed with testicular cancer back in 2011 other than for initial workup, but they're included now for follow-up care as well, for obvious reasons. As with the above, testicular cancer survivors are at elevated risk for developing testicular cancer again on the other side versus the general population. If anything was ever going to catch this early, and give a heads-up that something is going on before there were symptoms or other signs, a testicular ultrasound is what could do it, and so this was a no-brainer thing to do. 

Do a full hormone panel. It's not mentioned anywhere in NCCN, and not something that oncologists ever really pay much attention to, but get a full hormone panel done. Despite what doctors say about the other testicle "picking up the slack", there is literally no information out there to support that, and we survivors know very well that this isn't necessarily true. It's a given that we're far more likely to face hormonal issues as we age due to only having a single testicle. Almost nothing is known about male hormones, and we're pretty much on our own here. The more data points we have on ourselves, the easier it will be in the future to know what's going on, if and when hormonal issues do develop.

Why a full hormone panel and not just a testosterone level check? Some long-term testicular cancer survivors who are symptomatic of hypogonadism are finding not that their testosterone levels are too low, but rather that their estrogen levels are too high, and have had some success in being treated with estrogen inhibitors, rather than testosterone replacement therapies. Please note that this is all highly experimental reports from individuals within the testicular cancer community, and not from official studies, of which there are none to go on. The point is, just start collecting as much hormonal data about yourselves as you can now, as it will potentially be very useful later. 

STICK WITH YOUR PLAN

Honor yourself, the doctors and nurses that helped you through your cancer treatments, and your family and friends that have been there for you as well, by sticking with whatever your agreed upon plan is. After the hell that so many of our bodies have been through fighting cancer, and the significant emotional investments made by so many supporting us, we owe it to ourselves to do everything we possibly can to maintain the best possible health for ourselves going forward. A big part of that is having an annual physical done, and should be a part of every cancer surveillance exit plan. 

I'm happy to say that I just had my annual physical, and that it went very well. My cholesterol, HDL/LDL levels and ratio were all good, as was my blood pressure and fasting glucose levels. A few things that have been messed up since fighting cancer are still messed up, but stable. My creatinine levels have been 1.4-1.6 since cancer (normal was around 1.0 before), due to some damage to my left kidney sustained from chemotherapy, and then a complication from the RPLND surgery didn't help it out at all. My platelet levels also run low at around 100, which is due to some permanent bone marrow damage also due to chemotherapy. None of that has changed in years, and it's good to know that. 

One thing in my CBC report has tracked a bit high, but that's always correlated with my weight, and I've vowed this year to finally lose every last "cancer pound" I'd ever gained. Before cancer, I was around 240-250 pounds, which was considered to be a good weight for me considering my significant height of 6'3", and my large frame. Because of how chemotherapy, steroids, and surgeries had all affected me while fighting cancer, I ballooned all the way up to 300 pounds as I exited MSKCC in New York after my RPLND surgery. Due to chronic post-cancer fatigue from chemotherapy induced peripheral neuropathy, I could never exercise hard enough in my first few years after cancer to burn that off. My weight has floated around 270 pounds for the past few years, but running helped me to get beyond my fatigue issues, and there's no excuse anymore.

I refuse to turn 40 later this year in anything other than the best shape of my life. When we Scorpios commit to something, we're either all-in 110% or don't bother, and so I'm all in with a gym membership and regular exercise, a strict diet and paleo foods, and all that. This will happen. Turning 40 will be the start of a new era and decade for me, and this baggage from cancer, including the residual flab on my sides, is not going to be a part of that.

---

At the time I walked out of my oncologist's office for hopefully the last time ever back in June of 2016 (knocking on wood), I wasn't able to really feel or appreciate that moment at the time due to so many other things going on in our lives. As I'm typing this now, over a half year later, I'm finally feeling that emotional release and tears of joy from this for the first time, and the relief of such an enormous burden in my life having been lifted.

I just couldn't accept having to keep seeing an oncologist every year for the rest of my life. I've finally made it. I know how quickly things can change, and am going to keep living my life exactly how I've learned to LIVE it after cancer, but this is done now.

I'm finally free, and I can't wait to see so many friends and connections I've made in the testicular cancer community finally reach this huge milestone, too.

StevePake.com

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Testosterone Challenges after Testicular Cancer

Before I was diagnosed with testicular cancer at the age of 33, I had always been a very regular person. I had regular amounts of energy and enthusiasm for life, regular amounts of optimism about most everything, and there had never been a single depressive “bone” in my body. I felt confident and secure, had very regular moods which were all good, and very regular amounts of libido, too! My cancer diagnosis blindsided me, and shook my foundations to their core. How could you not feel depressed and anxious while you’re afraid for your life, and fighting like hell just to live at all?

I wasn’t the same person after cancer

I wasn’t the same person after cancer. My confidence had been shattered, my optimism faded, and my moods were all over the place. I wasn’t the predictable “rock” that my wife had known, and suddenly I became a very irregular person, the exact opposite of what I had been before. I had “times of the month” where I just felt completely out of it. I struggled with mood swings that went from euphoric highs and feeling on top of the world, to incredibly depressive lows. Some of this comes with the territory of being a cancer survivor, but I knew there was more to it than that. Most of the depressive phases would last merely a few days to maybe a week at the most, but then there was the time that I just felt completely out of it for over a month! I had absolutely no energy at all, and was completely lethargic and depressed. I felt directionless mentally, my libido was non-existent, and I just felt like a lump of asexual nothingness.

I’m a very lucky man to be married to such an incredibly beautiful woman. My wife and I have always been a very physically affectionate couple, and that has never changed even twenty years and two kids later, but this did it. Suddenly, I felt absolutely nothing for her. I had no interest, felt no love or attraction, and didn’t even understand why we were together! I didn’t recognize myself anymore, and my wife didn’t recognize me either. She had been used to getting regular physical attention from me in the form of simple caressing and playful squeezes whenever we’d pass each other, and more, but became very self-conscious and wondered if I didn’t love her or find her attractive anymore when all of that attention dropped off of a cliff! Forget about ‘scanxiety’ and cancer recurrence scares, which make you fear for your life. Not feeling anything for the love of my life was even more terrifying, because it made life not worth living for me anymore. This was a completely foreign life experience to me, and the most terrifying thing I’d felt throughout my entire cancer journey. I felt like Superman when he lost his powers – helpless, directionless, powerless – unable to do anything, and not even love my wife!

It’s Hormones, Stupid! What’s Normal??

I had no idea what the hell was going on with me, but one morning while in the midst of this, I woke up realizing that I didn’t need to shave. Even some body hair had seemingly thinned a bit, and it became obvious that my body was gasping for testosterone! It was my hormones talking, or rather, not talking! I went to see an endocrinologist in short order and did some blood work, which confirmed my self-diagnosed hypogonadism, aka “low-testosterone”. Normal free testosterone levels in men range from about 270 to 1070 ng/dl, and I tested out at 178. My testosterone levels had fallen through the floor, so the obvious question was, do I go on testosterone replacement therapy (TRT) or not?

The million dollar question that every testicular cancer survivor experiencing low testosterone-related issues is, of course, what were our normal levels to begin with? Unfortunately, almost nothing is known about the true nature of testosterone levels in men, which includes testicular cancer survivors. Even at the time of a testicular cancer diagnosis, the opportunity to get a clear snapshot of an individual’s natural testosterone levels are already lost, as the testosterone production of the cancer-stricken testicle could already have been compromised. Furthermore, testosterone levels in men can vary by month, by day, by time of day, mood, stress levels, and many other factors. Thus, getting a good idea of what “normal” testosterone levels are in even healthy men is by no means a trivial task. Was my normal testosterone level in the 200’s, and thus my recorded level of 178 ng/dl just a minor slump, or was my normal more like 1000, and my body was in a low-testosterone death spiral? There’s simply no way to know. After a testicular cancer diagnosis, most medical professionals will tell testicular cancer survivors that the other testicle will “pick up the slack”, but we’re not exactly like twin-engined aircraft that can keep flying almost as normal if a single engine fails. There might be a lot of peaks and valleys, but for how long? Will our natural testosterone levels recover to the point that we can maintain the same altitude as before, or will we be stuck near the ground? Nobody really knows, and there are long-term risks either way as far as whether to go on some form of TRT or not.

Key Things to Know About TRT

• The major risk bullet points for hypogonadism and not going on TRT are decreased bone strength and osteoporosis, along with a potential increased risk of developing Alzheimer’s disease.

• On the other hand, going on TRT ends up actually doing harm to our body’s natural ability to produce testosterone on its own, and can also decrease fertility. Once one is on TRT, you’ll likely be on it for life! 

• TRT can also promote cancerous and non-cancerous growth in the prostate gland, and testicular cancer survivors already have an increased risk of developing prostate cancer as compared to the general population.

Some Advice From Guys That Have Been There And Done That

So, what guidance do testicular cancer survivors have in navigating these hormonal pitfalls? Right now, none. A big part of the problem is that testicular cancer is so curable, that very little research is done to look into the challenges that survivors face in the aftermath. Perhaps this is a good problem to have with such a highly curable cancer, but problems are problems, and ignoring them never makes them go away. 

Meeting Scott Petinga at the Minnesota State Fair, 2016

Minnesota businessman and testicular cancer survivor, Scott Petinga, is trying to change that. Petinga has suffered terribly from post-cancer hormonal challenges for over a decade now, but has never been able to find the answers he’s needed.  Petinga took matters into his own hands, and founded not one but two non-profit organizations, The Center for Advocacy for Cancer of the Testes International (CACTI), and the TH!NK DIFFERENT Foundation, which he’s bankrolled with his own money, to finally support formal research into the very questions and dilemmas that testicular cancer survivors face. In the meantime, all we can do is make the best educated guesses for ourselves that we can, and hope for the best.

Every single testicular cancer survivor and their caregivers should be aware of the possibility of low or irregular testosterone levels after cancer, and that no, the other testicle might not necessarily ‘pick up the slack,’ as is commonly believed. It isn’t that simple. Every medical professional should also be aware of this possibility with testicular cancer survivors, especially if they’re symptomatic of hypogonadism.

Scott’s advice is to “most importantly, prior to your orchiectomy request that the Urologist perform a full hormone panel as a baseline. Once fully recovered a second panel will be used to conduct a variance analysis and based on the results you’ll be able to supplement effectively.”

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Image via Ron’s Facebook

Ron Bye, a testicular cancer survivor of over 40 years, additionally suggests that “it is very important, when considering TRT, to truly understand the full complement of hormones and their relationships between them. High E2 (estrogen) can have the same symptoms as low T and often have that inverse relationship. If the issue is high E2, simply adding testosterone will often only increase E2 by converting the excess T to E2 with aromatase enzymes. Before starting TRT always get a full hormone panel!”

It’s A Personal Choice

As for myself, despite my miserable predicament at the time, I simply had no desire to go on potentially lifelong and expensive testosterone replacement therapy while only in my mid-30’s. My wife agreed, and with her support and understanding, I decided to forego TRT in the hopes that my body would right itself on its own. Around this same time, I just happened to start a daily program of vigorous exercise. Regular exercise is well known to keep people’s hormonal levels up, and this just happened to do the trick for me. Whenever I felt one of these hormonal slumps coming on, I made sure to get out for a run as soon as possible, and go as hard as I could. Without fail, I’d always feel much better the next day. Regular exercise has become a way of life for me after cancer; it has helped me to once again be that “regular” guy that I used to be, and so much more, going on 4 years now.

There might very well come a time when I’ll need TRT in some form, but I’m hoping to make it at least a decade or two out from my diagnosis before I get there. It’s hoped by myself and many other testicular cancer survivors, that the research being funded by Petinga’s non-profits will eventually bear fruit, and that we’ll have better information from which to make decisions regarding our hormones in the future.

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Additional Perspective Via Nick O’Hara Smith

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Image via Nick’s Facebook

This is a copy and paste of Nick O’Hara Smith’s very insightful and helpful comment below, but I wanted to make sure to incorporate it into the body of the blog itself so that it wouldn’t be missed. Nick broke so much new ground in this area over all of his years for all of us to benefit from today. Nick very sadly passed away from other causes in late-2018.

“I'm really glad exercise has been able to help you stay off Testosterone therapy. Nobody I know other than body builders wants to be on it.

I've been on "no choice" Testosterone therapy for close to 29 years because I lost both testicles. In truth, relying on a lifelong medication to enable mental, physical and irregular sexual stability sucks. It is not a given that ED and sexual stamina are cured by Testosterone therapy.

However, it is such an important hormone for us men, because it is fundamental to our overall health. Prolonged low levels affects practically every system in the body, from cerebral to heart, skin, blood, vessels and bone.

However, just because a testicle is lost and your Testosterone is low, it doesn't necessarily mean you have to take Testosterone for the rest of your life as you've found. Sometimes though exercise doesn't do it.

The need to take Testosterone or not really depends on the origin of the problem, whether it is testicular failure, or a failure of the system that demands testosterone from the testicles.

That system is controlled by the Pituitary gland which sends signaling hormones LH and FSH high, thereby requesting the testicles produce Testosterone. Sometimes the system is muted by confounding sources which, when corrected can allow normal production to resume.

In such cases where a testicle is lost, it is possible to induce signaling requesting the remaining testicle to make up for the loss of the other one using Clomiphene Citrate.

Sometimes that is all it takes. In some cases however, I have seen a combination of Testosterone therapy and Clomiphene Citrate together prescribed to ensure fertility is preserved. That particular treatment is exclusive to the USA experts in such matters so far as I can tell. The drug Androxal (Enclomiphene Citrate) is currently under trial and going through the FDA mill in the hopes of getting it to market to help those with Pituitary originating Testosterone problems.

Elsewhere in the world, Testosterone therapy is the only medication approved for treatment with the consequential loss of fertility when the remaining testicle shuts down its production. An unedifying prospect to say the least for any man.

The dangers of ignoring this problem are many, but it is largely ignored in the male population worldwide.
Doctors generally tend to be as ill-informed and dismissive as the average person in the street. However there are broadly similar guidelines covering most countries now, which I constantly advise patients to print, read and give to their doctor.

I find it ironic that something so fundamental to male health and fertility remains in the hinterland while male fertility world wide drops like a stone. One day man will wake up!”

Thanks so much Nick and God bless!

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One final word

If you’re struggling with both testosterone levels AND you also want to maintain your fertility or explore fertility options, please do take a trip out to see Dr Ajay K Nangia at the University of Kansas. He truly gets the testicular cancer patient population and their challenges, and there’s no finer expert in fertility for testicular cancer survivors than Dr. Nangia. Many of us had the pleasure of meeting and interacting with Dr Nangia at the Testicular Cancer Summit in 2017, and he’s also appeared at a few of the follow-on events as well.

I hope that within my lifetime the testicular cancer patient population will have far more definitive guidance and options for the management of our hormones after cancer!

StevePake.com

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Post-Cancer Fatigue and the Importance of Exercise

By far, the biggest physical challenge I've faced after cancer, is that of chronic fatigue. After months of being poisoned almost to death by harsh chemotherapy drugs, irradiated trying to nuke cancer cells out of existence, or having our bodies ripped apart and then sewn back together, our bodies are just plain tired. They take a beating fighting cancer, there’s tremendous amounts of healing and rebuilding that needs to be done, and all of that requires a lot more rest. I went from being just fine on 6-7 hours of sleep per night before cancer, to needing at least 9-10 hours after. Anything less, and I would struggle badly throughout the day. My stamina also plummeted, and I had to very carefully balance the amount of physical activity in a given day, or else I'd simply run out of gas. This wasn’t an easy thing to manage while trying to live the best life that I could after cancer, while keeping up with my busy family of four!

A year or two after my cancer fight, and long after the pain from surgeries and various complications had finally subsided, I took notice of another type of fatigue. I realized that I had continuous low-grade aching and burning throughout my body that I never felt before cancer, and that it never really went away. Everybody thought I looked great, my hair and color had returned, and I had managed to lose a bit of the weight that I had picked up, but only I could feel this low-grade aching and burning in every single muscle in my body, and my continual struggle for energy despite the years that had passed. I never felt like I had anything more than a half tank of gas for the whole day, no matter how well rested I was. My body felt like it had aged at least 30 years, and I was formally diagnosed with chemotherapy-induced peripheral neuropathy by my GP. My oncologists told me that my neuropathy symptoms had improved to as good as they would get by this time, and that there was little hope for further improvement. I refused to accept that, and went to see my "other doctor." 

My wife just happens to be a neurologist. She commonly sees older patients who might have had cancer a few times, some of whom have neuropathy problems so bad that they can't even stand or walk anymore. I was horrified. My wife encourages her patients to exercise, as that encourages nervous system regrowth and repair, but it’s a slow process that can take a long time. Few of her patients comply. I did. 

For the next few years, I dedicated myself to a near daily program of exercise. I walked, or ran, or did whatever I could do on a given day. I gave up going out to lunch with my co-workers, as lunch was the only time I could truly exercise and push myself. It took everything that I had to get going in the mornings, and I was too exhausted from my day to exercise during the evenings. Progress, if you could call it that, was slow. It seemed like I was going nowhere, but I was happy for whatever incremental gains in strength and stamina that I could pickup. I'd wanted to give up so many times, but exercise always made me feel better, and there was no way in hell that I was going to spend the rest of my life feeling like an old man. I was a determined Scorpio on a mission.

Some tips. Our bodies have been through complete hell fighting cancer. Listen to what they’re telling you, and give them the rest that they need. Respect their limits, but keep pushing for more. Be patient, but persistent. Never give up, never lose hope, and find the support that you need, especially from other cancer survivors who know exactly what you're facing. Never underestimate the resiliency of our bodies to heal and recover. Our bodies are amazing, but need prodding and encouragement! Give that to them. Most of all, never stop believing in yourself. 

I could never run more than a few blocks without having to go down to a walk, until one day I could. Then I could never run a full 5K in better than 30 minutes, until one day I was able to do it! Then, I couldn't do that consistently, until I could. I never could have imagined a time when I'd be able to exercise hard 5 days per week and feel fully charged each day, until today that I do! This progression has taken years, and not months as it might have for normal people, and might not have ever happened had I stopped believing in myself and quit!

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April 1st, 2015 was the first time I was finally able to run a 5K in under 30 minutes, after over two years of pounding the pavement. I was so happy that I cried, as it represented the heavy chains of post-cancer fatigue coming undone, and physical freedom and energy that I hadn't had in years.

Five years after my cancer diagnosis and after so much hard work pounding the pavement and hitting the gym, I finally feel 30 years younger, and have all of the energy that I need again. I've been so happy at some of these milestones that I've cried, just being able to do something simple like jog behind my kids learning to ride their bikes, after a busy full day. I can see clearly now how my body has slowly but surely been coming back to me after all of these years. I couldn't be happier, finally having my rightful youthful energy back again, and having my confidence back knowing that I can do whatever I set my mind to. Never give up, and never stop believing in yourself. Cancer knocks all of us down, but keep getting back up.

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All charged up from a workout at our local gym on a beautiful Sunday morning in the Spring of 2016, and ready for the day!

StevePake.com

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The Truth About Testicular Cancer Markers, and Detection with Pregnancy Tests

It seems like every few months, a story pops up somewhere where somebody managed to detect their testicular cancer with a pregnancy test. Yes, it's true! This can be done. In a strange coincidence of nature, the hormone called beta human chorionic gonadotropin, or HCG for short, which is emitted from the cells that form the placenta when a woman is pregnant and is what the pregnancy test looks for, can also be emitted by some types of testicular cancer. Since HCG should never be elevated in men except for in a few rare and very specific situations, a positive pregnancy test result in a man is almost a sure sign of testicular cancer! 

The latest story on this is that of Byron Geldard, from Huntingdon, Cambridgeshire in the UK, first reported in the Daily Mail, and then The Telegraph, Liftbump, and other UK based media outlets. The problem with many of these stories is that an incomplete truth, or even dangerous misinformation can often emerge. In Geldard's story, the Daily Mail had it correct and quoted Dr Danish Mazhar, Consultant Medical Oncologist at Cambridge University Hospitals, who said: "The pregnancy hormone (HCG) is often (but not always) produced by testicular tumours," meaning that a simple pregnancy test is not a foolproof test for testicular cancer. Other types of testicular cancer tumors produce another type of marker called alpha-fetaprotein, or AFP, which the pregnancy test won't detect. A third type is an enzyme called lactate dehydrogenase, or LDH, which is not reliable enough to be used as a primary indicator for testicular cancer, but is commonly used as a secondary one to gauge the extent of disease. Guess what? The pregnancy test doesn't look at this either, and it's also possible to have testicular cancer that doesn't give off any markers at all.

Which types of markers the various types of testicular cancer may or may not give off are known and very well understood. There are two main types of testicular cancers, which are called seminomas and non-seminomas. Seminomas are very simple, and 95% of the time are the classical seminomas. Non-seminomas are a bit more complicated, and are divided into embryonal carcinoma, choriocarcinoma, yolk sac, and teratomas.

Seminoma can occasionally give off HCG, but never AFP. 

For non-seminomas:

Embryonal Carcinoma can give off HCG and/or AFP, but might not give off either.

Choriocarcinoma always gives off HCG.

Yolk Sac almost always elevates AFP, but in rare cases might not.

Teratomas do not give off either type of marker. 

With the exception of seminomas, testicular cancer tumors are rarely a pure type. Non-seminomas are commonly mixed with another non-seminoma type of the cancer, or a seminoma, to form a mixed germ cell tumor. Information like this is good to keep handy because of the fact that testicular cancer is still considered a relatively rare cancer, which means there are a lot of oncologists out there that just aren't that familiar with the disease. If your pathology report says 100% pure seminoma, but your lab results are showing elevated AFP, it's a sign that something might have been missed in your pathology and that you need to get a second opinion! 

As you can see, properly detecting and diagnosing testicular cancer is a bit more complicated than just taking a pregnancy test. There's only one sub-type of testicular cancer that a pregnancy test will detect every single time, and that's choricarcinoma, but which tends to be more rare. It's a crap shoot with all of the other sub-types, as only some "can" emit the HCG marker, and others won't do so at all. Reader beware! Any article or story you see discussing how testicular cancer was detected with a pregnancy test that only talks about HCG, but makes no mention of AFP, or the possibility of no markers at all, are not giving you a complete set of information. And any story that suggests or implies the reliability of a pregnancy test for diagnosing testicular cancer without mentioning other required tests, is dead flat wrong, and very dangerous misinformation. If you suspect testicular cancer, don't 'Net MD' yourself into thinking you're okay if you take a pregnancy test and it turns out negative, because a pregnancy test hardly represents a proper work up for a patient that could have testicular cancer. 

If you suspect testicular cancer and take a pregnancy test, 
a negative result can NOT, by itself, rule out testicular cancer. 
 

My personal pathology was 90% embryonal carcinoma and 10% yolk sac mixed germ cell tumor, but my cancer emit neither HCG nor AFP!  My LDH was slightly elevated, but considering I was injured at the time (from doing something incredibly stupid, I might add), it could have just as easily been elevated from that as it could have from cancer. We'll never know. With my primary HCG and AFP markers always having been negative, the only way to track my cancer during treatments and on surveillance has been radiologically. I still get blood draws and tumor marker checks at every surveillance appointment for HCG, AFP, and LDH, but they're more useful for potentially catching a second testicular cancer (knocks on wood) that might just happen to elevate one of the markers, than it is for tracking my previous cancer that never emit any. Had I depended on a pregnancy test to tell me if the ache in my right testicle was cancer or not, and then brushed off a negative result for a few months until more severe symptoms appeared, I might not be here today! Luckily, I was smarter than that, and you should be too.

I spoke to Michael Muriett, Testicular Cancer Awareness Foundation Vice President and Director of Education, who had the following to say. "We walk a very dangerous line when information like this is published in mainstream, and even more so in Social Media. The impression is given to these men that there is a quick and easy solution. Publishing stories like this without the additional, medical based, factual information in regards to tumor types, cancer marker levels, and how they can be effected can give a false sense of security to people. The best, and wisest route to take will always be consultation with a doctor, cancer screening from that doctor or a hospital, and promoting things like the monthly TSE for early detection."

Although neither the Daily Mail or The Telegraph mentioned the AFP marker, they both did a reasonably good job, assuming one read the entire article, of making it pretty clear that a pregnancy test isn't a foolproof test for testicular cancer, but can be used as a diagnostic tool. Things went terribly wrong at LiftBump however, where the author, 'Katie', with no contact information posted, completely misquoted the Trust spokeswoman mentioned in The Telegraph piece. The LiftBump piece said, "A spokeswoman for the Trust told the Telegraph that a pregnancy test can be used to diagnose, or rule out, testicular cancer, because the disease produces the same hCG hormone that is produced by a developing placenta." Wrong. They never said that. It can produce the HCG hormone, but might not, and the spokeswoman clearly stated in The Telegraph, and even quoted in LiftBump that, "if [a pregnancy test] is negative, it just means that further tests are needed." Yet somehow, LiftBump managed to add into the spokeswoman's statement that a pregnancy test could be used to "rule out" testicular cancer. That is absolutely dead flat wrong. It can not, and this is incredibly confusing, misleading, and dangerous misinformation that has now been shared 24,000 times over on Facebook, with 415,000 views as of 10PM Eastern on March 12th, 2015. Unbelievable. And yes, the LiftBump piece being shared on social media is how I personally first saw this story.

As always, know the signs and symptoms of testicular cancer, and keep doing monthly self-exams. If you detect a mass or have other signs and symptoms, feel free to take a pregnancy test, but please do the proper thing and get to a doctor immediately regardless of what any pregnancy test might say. They simply are not a reliable diagnostic tool for detecting testicular cancer by themselves. Properly working up a patient suspicious for testicular cancer requires the care of a doctor, and for other tests to be run. Even Snopes says so.

StevePake.com

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Doctors Say, Keep Checking Your Nuts

In February 2015, Steven Petrow published an article in the Washington Post titled "Guys, here’s why it’s not worth testing yourself for a ‘lump’ down there", coming out against testicular self-exams (TSE) after having previously been supportive of them. His article responded to a "Today" show segment which aired late in 2014 featuring David Samadi, who is Chairman of Urology and Chief of Robotic Surgery at Lenox Hill Hospital, and is also a Fox News Medical Correspondent. On the "Today" show episode, Samadi gave testicular exams to anchors Willie Geist and Carson Daly on live television. What's surprising about the article is not just that such a view against testicular self-exams exists, but because Mr. Petrow himself is a twenty years and change survivor of advanced stage testicular cancer. I applaud and congratulate Mr. Petrow on reaching such a milestone. It's something that we cancer survivors take great pride in and stories like his are inspiring to so many of us, but I could not disagree more with his recommendation against TSE. Petrow thinks that it's "smarter" now to keep his hands to himself, but is it really? 

Why Is there Even a Debate?

The original source of the recommendations against doing testicular self-exams comes not from Petrow, but rather from the US Preventive Services Task Force (USPSTF). The USPSTF recommended against testicular self-exams back in 2012, citing "moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits". In his article, Petrow spoke with Kenny Lin, assistant professor of family medicine at Georgetown University Medical Center, who agreed. Lin said that even if self-exams were effective, that they'd have "little if any bearing on outcomes for those who are diagnosed." Lin went on to say that he thought the "Today" show episode was "a stunt cloaked as a health message." Petrow went through a brief discussion of benefits vs harm, but couldn't seem to find any benefits at all for the TSE. Much of the rest of the piece then focused on psychological biases as to why doctors (and patients) would still want such screenings despite there being "no benefits". Well, maybe they're looking at things the wrong way.

Problems with the Recommendation Against TSEs

One of the biggest problems with Petrow's article is the fact that no matter which type of cancer he was discussing, there was no mention whatsoever of cancer survivorship quality of life, or the overall wellness of a patient after cancer. He only looked at "surviving" cancer from the singular perspective of the net final outcome - whether the patient lived or died in the end. Because the "final outcome" isn't likely to change, don't bother with screenings or self-exams, goes this line of logic. If you get cancer, just go get chemotherapy or radiation, or whatever it is that you need, and get cured. As I wrote in my own lengthy blog post on this exact topic in June of 2014 titled, "The Value of Testicular Self-Exams and Early Detection from the Survivorship Perspective" this is a woefully incomplete, and dare I say even irresponsible perspective. We're so much more than just a binary "1" or "0" on someone's spreadsheet on whether we're alive or dead. We're very much analog creatures, and cancer survivorship itself is a million shades of gray.

Petrow stated in the article that he went through 4 rounds of chemotherapy and two surgeries to get cured, but didn't mention what, if any, long-term or possibly permanent side-effects he might have suffered as a result of this. As I wrote in my own blog last year, the potential for long-term health risks and permanent side effects when going through treatments for cancer are not to be underestimated. I've suffered a complete loss of fertility, for starters. Not having much if any feeling in my left foot is more minor and something that I've gotten used to over time, but more severe is the fact that I also suffer from chemo-induced peripheral neuropathy. I deal with chronic muscle fatigue issues to varying degrees every single day, and continue to have nerve pain issues that have never really gone away completely. Even after my cancer fight was over, I still had to keep fighting because one of my kidneys nearly failed due to a complication from the RPLND surgery that I went through. It took another year after my cancer fight, and tons of painful diagnostic procedures and stents to finally nurse my body and my kidney back to health. Even more troubling are the increased risks of developing a secondary cancer just from having been exposed to chemotherapy agents and/or radiation treatments. Patients who are exposed to either chemotherapy or radiation therapy have a two-fold increased risk of developing a secondary cancer compared to the general population, and a three-fold increased risk if a patient has been exposed to both types of treatments, according to studies. Mental health is also at stake. After fighting so hard, my mind eventually caught up with all that I and my body had been through, and I fell into a depression and suffered from post-traumatic stress for a year.

Testicular cancer tends to hit younger men, like myself, who have so much of their lives in front of them. They're going to have to live with these potential long-term side-effects of treatments for quite a long time, which is why it's so important to detect testicular cancer as early as possible. The earliest possible detection of cancer helps to minimize the amount of treatment needed, the potential trauma to both mind and body, and helps to maximize quality of life after cancer. It's important to be a "1" on that spreadsheet and to survive, but we can't take our eye completely off of the ball when it comes to the impact on quality of life that cancer treatments can have. Why would you not want to detect a cancer as early as you can via something as simple as awareness of the disease itself, and a virtually zero cost TSE? Is it really in the best interests of the general population to have people darn near on their death beds before being properly diagnosed? It doesn't make sense. Especially with testicular cancer, a rapidly advancing cancer, a pain or mass detected in the testicle via a TSE might be the only sign of testicular cancer one has before its had the opportunity to completely overrun one's body. This is why testicular cancer is sometimes referred to as the silent killer!

What Some Experts Really Think

One really needs to understand what's behind these USPSTF recommendations against many types of screenings. A trip across the Beltway and up the Baltimore-Washington Parkway from Georgetown, is The Johns Hopkins University in Baltimore. Philip M. Pierorazio is an Assistant Professor of Urology and Oncology at the Brady Urological Institute there, and Director of the Division of Testis Cancer (Pierorazio is also a member of the TCAF board of directors). Pierorazio weighed in on the USPSTF recommendations on his own blog in a piece titled "Testicular Self-Exam: Why There Is Nothing Wrong with a Regular Feel".  He writes,

"It has to be conceded that there is no evidence that TSE is effective for the diagnosis of testicular cancer or helps find men at an earlier stage of disease. However, lack of evidence does not mean that TSE is not effective – it means that no study has effectively investigated the role of TSE in an at-risk population." Dr. Phil Pierorazio

In his summary, Pierorazio respectfully disagreed with the USPSTF recommendations, stating that the recommendations are themselves based on very little existing evidence. "While the cure rate of testicular cancer is wonderful, the burden of the disease is greatly under-appreciated. Even if a free, painless self-examination leads to an unnecessary doctor's visit, saving one man from advanced disease is well worth the "risks and costs" of TSE.", concluded Pierorazio. In case you didn't follow, the issue is simply that there just hasn't been a formal study done to prove the effectiveness of TSE. It doesn't mean that they don't work or aren't effective. It just hasn't been proven that they're effective via a study. Thus, in the absence of a formal study either proving or disproving effectiveness, the USPSTF recommendation to "discourage the use" of the TSE is based on very little evidence as well! 

I had a chance to speak with David Samadi personally on Petrow's article, and that "Today" show segment. Samadi shared the sentiments of Pierorazio and myself but in a slightly more vocal manner, stating that he felt the USPSTF recommendations against the TSE and screenings for other types of cancers were "a terrible mistake". While some of these screenings might not be perfect, he and others believe they're still effective tools that can change the final outcomes for patients, and that it's always better to catch a cancer at an earlier stage to minimize the treatments needed to cure a patient. I shared my personal story with Samadi, and that I had missed being able to pickup on my symptoms of testicular cancer for a few months. If only I had been more aware of the disease and how to do a proper TSE, I potentially could have caught my cancer at an earlier stage, and spared my body and my mind from the harsh treatments that were needed for me to get that cure. Samadi's response? "Exactly." Samadi went on to say in a statement.

"Given how common testicular cancer is in young men, we should be urging them to perform monthly self-exams. Young women are encouraged to perform monthly self-breast exams. Why shouldn’t men? Early detection begins with the patient. If he is aware of the risk factors, he will care about prevention. Self-exams are a no cost prevention method and if something is discovered, a simple ultrasound can tell us what’s happening." - Dr. David Samadi

I agree with that this is a double-standard, and had mentioned it myself. Women are encouraged to get to know the shape and feel of their breasts, but men are supposed to keep their hands off of their balls? 

There's no finer authority on testicular cancer anywhere in the world than Lawrence Einhorn, a Distinguished Professor of Medicine and Lance Armstrong Professor of Medicine at the Indiana University. "Einhorn" is a household name in the oncology world, and a man who needs no introduction. Einhorn's work at Indiana University 40 years ago experimenting with the Cisplatin drug is what turned testicular cancer from a death sentence into the greatest success story in modern oncology, having been compared with walking on the moon! Einhorn's work has literally saved the lives of hundreds of thousands of men with testicular cancer, my own included. I reached out to Dr. Einhorn and asked if he could weigh in on the USPSTF recommendations against the TSE, asking if "men should really be discouraged from doing testicular self-exams?" Einhorn's response? "Not really." He went on to express skepticism on the effectiveness of a national policy for TSEs, citing the low overall incidence rate of testicular cancer, but he couldn't have been more clear on the importance of knowledge and awareness of the disease.

"Men should be aware there is cancer that can start in the testis and the presence of pain or a feeling of firmness in the testis should not be ignored", stated Dr. Einhorn.  

I don't think there's a finer endorsement to be had on the topic of testicular cancer awareness and the TSE than from Dr. Einhorn. Men need to be educated and aware of the possibility of testicular cancer, and how to properly feel for any abnormalities via a TSE!

Move Forward With Education & Awareness, Not Backwards with FUD

The solution to the potential downsides of TSEs, such as the cost of false positives and fear and anxiety, is not to forego TSEs altogether, but rather to help minimize them with education and awareness. This is precisely what organizations like The Testicular Cancer Awareness Foundation are all about. We teach people about the signs and symptoms of testicular cancer, which will help men of all ages to understand what to look out for. Knowledge of how to do a proper testicular self-exam will help to familiarize them with their own anatomy, and establish the difference between normal and abnormal. Knowing all of this can help to minimize unnecessary office visits and expense, and cut down on stress and anxiety.

As for the true costs when an office visit is needed, Pierorazio weighed in on this in his blog also, citing a University of Kansas Medical Center study. The cost to treat an advanced stage testicular cancer with both chemotherapy and the RPLND surgery is equivalent to hundreds of office visits to look at a worrisome TSE. When cancer is detected (and actual masses that are detected in the testicle are almost always cancerous), the costs to treat earlier stage cancer enabled by awareness of the disease and TSEs, is a mere fraction of the costs to treat advanced stage testicular cancer.  A mass can't always be detected in the testicle by self-exam in testicular cancer patients (a proper study on the TSE would help to better understand this), but in my case I did, and I wished I had given it a proper feel a few months earlier when it would have been at an earlier stage. Instead, my cancer advanced for several months to the point that I had to be treated with both chemotherapy and the RPLND surgery, and at great cost both in terms of the dollars required, and the impact to my body. A few ultrasounds that turn out negative are a drop in the bucket.

The "Cost" of Getting to a Doctor Too Late When It's Cancer

If there's one thing that I think most all of us could agree with Petrow on wholeheartedly, it's the fact that many men, and especially young men and boys, can be just plain shy or too embarrassed to talk about potential issues with their bodies when they notice them. In Petrow's article, he shared the story of one of his own doctors, who developed a case of hemorrhoids. Even his doctor was embarrassed, and delayed getting it checked out. Samadi would agree with the reluctance of men to go see doctors as well, and says it's not men but rather women who end up being the ones who finally get men into his office. "If you want a job done right, you give it to a woman,” said Samadi in a Forbes article. "Women are the most proactive healthcare champions in the family and are the driving force in men’s health. Time and again, it’s women who make the final push for their husbands, fathers, and brothers to come see me.” But we're talking about cancer screenings here, not hemorrhoids. The consequences of not getting to the doctor on time for what could potentially be cancer can be deadly.  

In a call for comments on this topic on a testicular cancer support group, there were no shortage of comments from those who had lost loved ones, or those whose quality of life had been impacted. If only they could have picked up on the cancer sooner with either more awareness about the disease or with self-exams, maybe their loved ones might still be here, or their quality of life might not have suffered as much. In one post, Melia Elliot shared the tragic story of her son, Ben. As Ben grew into puberty he had noticed that one testicle grew larger than the other. Ben 'Googled' that this could be normal, and then never said a word to anybody. When other symptoms started to appear, a sign of very advanced stage testicular cancer, he was unfortunately misdiagnosed for nearly two months by doctors in their hometown of Joplin, MO, even after an ER visit and two follow-ups. It wasn't until Ben became paralyzed from the chest down that doctors finally realized that he had testicular cancer! Not trusting the doctors in Joplin to care for her son, she got Ben up to Kansas City where Peter Van Veldhuizen, who is a Professor of Internal Medicine and Director of the Hematology/Oncology Division at The University of Kansas Medical Center, started Ben on BEPx4 chemotherapy for advanced stage disease.

It turns out that I had conversed with Melia personally during this time via one of the Testicular Cancer support forums on the web. It sounded like the BEPx4 might not have been working, and I recommended that she get her son under Einhorn's care at Indiana University STAT. Ben's case sounded so dire that I insisted that she call Einhorn's office that day, and that it couldn't even wait until tomorrow. Too many mistakes had already been made prior to Ben's diagnosis, and too much time had already been lost. She made the call to Einhorn's office immediately, and Ben was rushed to get started on high-dose chemotherapy with stem-cell transplant under Van Veldhuizen's care and with Einhorn's guidance. Melia stated to me in a comment that the quality of care between Van Veldhuizen and Einhorn was exemplary, but it was just too late. Ben fought a hard and courageous battle, but died tragically 10 months from his diagnosis.

Testicular cancer is curable, but it's also a killer! Someone dies of the disease every day, and on that day it was Ben. Early detection remains the key, and knowledge and awareness about testicular cancer is so important, especially with teenage boys!

Guys, Keep Checking Your Nuts

Pierorazio's statement bears repeating. "lack of evidence does not mean that TSE is not effective – it means that no study has effectively investigated the role of TSE in an at-risk population." The recommendations by the USPSTF are themselves based on very little existing evidence. When prominent doctors with expertise specifically in testicular cancer continue to believe in the TSE despite what the USPSTF has said, I think the message is pretty clear. 

All of us in the Testicular Cancer advocacy world know what the true "cost" is when you're too late. For Melia Elliot and her son Ben, the price was far too great. Samadi sums things up well in his bottom line. "Encouraging men to be more aware and preventive when it comes to common cancers could be the only chance we have to save their lives.” Women especially know just how stubborn men can be. Along with Dr. Samadi, we encourage women to be proactive and get involved in men's health issues. Take the #SamadiChallenge for Testicular Cancer and make sure that the men in your lives including your children are aware of men's health issues that could affect them, encourage them to perform self-exams, and seek the care of a doctor immediately if they notice something abnormal. And most of all... 

Keep checking your nuts!

The doctors who really know Testicular Cancer say to.

StevePake.com

Special thanks to Melia Elliot for her willingness to share the story of her son, Ben. Ben passed away on August 22, 2014.

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The Value of Testicular Self-Exams and Early Detection from the Survivorship Perspective

There’s been some debate in recent years about the true value and effectiveness of certain types of cancer screenings. This is, of course, a perfectly reasonable thing to be doing both in the name of advancing medical science, and especially in an environment where there's so much downward pressure on the costs of healthcare. One of the types of cancer screenings that has been discussed are for testicular exams, and it's been surprising to so many of us in the testicular cancer community to hear that screenings for testicular cancer have actually come back as not recommended or not worth it by some prominent organizations. Consumer Reports magazine even gave the testicular cancer screening one of their infamous little solid black dots, as if it were bad for you and something to avoid! The rationale is that because testicular cancer has such a high cure rate even in advanced stages, that overall survival rates don’t budge significantly whether the cancer is detected early or late. Furthermore, not everybody who is diagnosed with testicular cancer will be able to detect any irregularities in their testicles, which can make it a bit of a hit or miss type of test. So don't worry about testicular exams, some say. If you’re diagnosed with testicular cancer, just go get chemotherapy or radiation treatment or surgery or whatever it is that you need, and get cured. 

All of this is perfectly fine and rational from a business and financial analyst perspective, but is completely cold and missing the human cancer survivor perspective on this. We're so much more than just a binary "1" or "0" on someone's spreadsheet on whether we're alive or dead. We're very much analog creatures, and cancer survivorship itself is a million shades of gray. And I have to say, I personally was just a little bit taken aback and offended by the nonchalant manner in which I saw Dr. John Santa, Director of Consumer Reports Health Ratings Center, describing how curable testicular cancer was at any stage, to not worry about self-exams or screening, and to just go get chemo if you're diagnosed with testicular cancer on the Dr. Oz show last year. It made for good TV, and I could sense some pride in Dr. Santa's voice and body language when talking about how curable testicular cancer is these days, as TC is indeed one of the great victories in modern medicine. But it's still a real disease and a real cancer that kills real people. Somebody is diagnosed with testicular cancer every hour in the U.S., and someone dies of it everyday. A cancer warrior brother of mine who had been diagnosed with testicular cancer around the same time as me just happened to be in hospice care and living his last days as this particular Dr. Oz show had aired. To his credit, Dr. Oz defended the practice of testicular self-exams and said he still thought they were a good idea to do, but it was as if I had been punched in the stomach to hear how curable testicular cancer was "at any stage" as my friend was dying of it. And don't believe for a minute that chemotherapy is some sort of miracle pill, and that life will go on just as it had before when it's all done, as that's hardly the case for so many. 

My chemo cocktail, Etoposide and Cisplatin for my first round of EPx4, March 2011. Yum yum!!

Testicular cancer is a pretty fast and aggressive type of cancer that can quickly overrun your entire body, but can also be cured completely if it's hit hard and fast. Chemotherapy protocols for testicular cancer are no joke. I'm now casually recalling the movie 'Star Trek IV - The Voyage Home' when Doctor McCoy gives the ailing patient in that San Francisco hospital a pill that miraculously fixed their failing kidneys. I wish it was, but it ain't like that!! The drugs of Cisplatin,Etoposide, and especially Bleomycin that many of us are familiar with are all very serious drugs. There are numerous warning labels right on the bags, and oncology nursing staff handle them with masks on under vented hoods for good reason! They certainly do an awesome job of killing cancer, but they're really not kidding when you read the datasheets for these drugs and look at the potential side-effects that can become long-term or permanent issues. Anybody facing chemotherapy after a testicular cancer diagnosis would be well advised to look at the potential side-effects and risk factors of these drugs, and evaluate them against your personal and family medical history with your oncologist. I did EPx4, and I can personally check the boxes for kidney damage, nerve damage and peripheral neuropathy, and muscle fatigue among other things, along with fertility loss from my RPLND surgery. There's increased risk of developing leukemia with the EPx4 protocol, as well. Potential risks with Bleomycin for the more mainstream BEPx3 protocol are blood vessel damage and Raynaud's, increased risk of heart disease, and potentially nasty effects to your lungs. It's rare, but there are cases of people having beaten testicular cancer, only to end up dying from complications due to Bleomycin. It's not uncommon to hear about cases for people with advanced stage disease who started with BEPx4, but ended up doing BEPx3 + EPx1 either due to complications from Bleomycin (drop in lung function, other severe side effects), or due to getting a good response and just to spare them from the additional Bleo exposure. These drugs are no joke!

In my case, I might have been able to avoid much of what I went through if only I were more aware of Testicular Cancer. I started having strange pains in my right testicle two months prior to my diagnosis, but passed it off until the pain finally got so bad that I couldn't even sleep at night. I had not even considered the possibility that this could have been cancer when symptoms were first noticed, because I simply wasn't aware of the disease. Had I checked myself into my primary care provider earlier, I might have been able to catch my cancer at Stage I rather than Stage II, and avoided much of the physical trauma to my body in the process of fighting cancer. And for others, it could mean the difference between life and death! I personally have fought off depression and have had PTSD flashback episodes from my chemotherapy experience that have played back in my head like the trailer for some horror flick, and the same for my RPLND experience. It's not just physical trauma that our bodies experience while going through our treatments, but emotional trauma as well. I certainly could do without such terrible memories of this hell that I've been through. 

About the only thing that was more fun than any of this stuff was the Magnesium Citrate that I had to take before the RPLND surgery for "bowel cleansing". It didn't just cleanse my bowels before surgery, but during and for long after as well! It was the gift that kept on giving, but at least the effects were temporary. The havoc wreaked and damage done by the chemotherapy drugs can stick with you forever!

This stuff gave me diarrhea every 2 hours for 36 hours straight, AFTER my RPLND surgery. They thought it was Clostridium difficile aka "C. diff" but nope, just this stuff continuing to work its "magic". 

It's by far the most important thing to simply survive cancer and to be a "1" on that spreadsheet as opposed to a "0", and it's certainly important to find the most cost-effective ways of treating and fighting cancer as well in order to extend our limited resources to as many people as possible. But early detection is also important for minimizing impact to quality of life after your fight with cancer and during cancer survivorship. Harsh treatments that weren't needed because a cancer was caught early can't traumatize your body. They can't traumatize your mind. They can't leave you with permanent and lasting side-effects. And they can't rob you of your fertility. If you manage to catch testicular cancer at Stage I and are able to just do surveillance, it doesn't mean that you won't still struggle because I know people who have. We all do in some way. But the less you have to go through to get that cure, the better off you're going to be down the road both physically and mentally. Cancer isn't just about curing the disease, but curing the person and the soul within as well. My cancer fight was a brutal 5 month affair that spanned from February through June 2011, but it wasn't until December of 2013, nearly two and a half years after my treatments ended, until my soul was finally cured of cancer too. As TCAF Founder Kim Jones put it, what comes after your cancer fight really is a "fight for survivorship". 

I've made peace with all that my body has been through, and have accepted and know how to manage the various bodily dysfunction and limitations that I have after my caner fight, including having accepted the loss of my fertility. And I've made all of the significant mental adjustments that I've needed to make as far as my approach to life and my attitude as well, but none of this could ever be considered easy. I want the next me and the next you to have a much easier time with this, and spreading awareness about testicular cancer and how to do proper self-exams is exactly the way to go about achieving that. We can't prevent testicular cancer, and what exactly causes it is not even understood yet. So no matter which way you look at things, the earliest possible detection of testicular cancer when it does develop remains the key. It gives you the best possible shot at beating the disease, it minimizes the cost of treatment, and helps to minimize impact to quality of life during survivorship. A testicular self-exam takes less than a minute and is something that should be done at every annual physical, and can and should be done via self-exam once per month. The cost is practically zero. This knowledge and practice is the first line of defense against the most common form of cancer among men aged 15-35, and is hardly something that should be avoided. There's nothing to lose by spreading Awareness about Testicular Cancer and encouraging the practice of Self-Exams. It's a Win-Win-Win. 

What I wish had been hanging in my shower in December of 2010, when I first noticed symptoms but ignored them.

StevePake.com

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Steve Pake's Top 10 Guide to Surviving a Young Adult Cancer

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To mark the end of Testicular Cancer Awareness Month this month, and as a late way to honor Young Adult Cancer Awareness Week which was also in April, I'm pleased to be able to share with you all a young adult cancer survival guide that I've written.  

Especially for Young Adults aged 15-39 and faced with a cancer diagnosis, there are so many unique challenges that we face compared to other age ranges. It’s not just our lives that we fear for at a time when we’re supposed to be invincible, but the fear of so many of our hopes and dreams that we’ve had for our lives slipping away right before us. As young adults, we’ve come so far and worked so hard in life, and are finally on the verge of being able to live if not already enjoying so many of these dreams. But in one fell swoop, a cancer diagnosis threatens to destroy and take all of that away from us. It’s so unfair, and we feel so crushed and cheated having to set all that we’ve worked so hard and made so many sacrifices for aside, just for a chance to even live at all. A cancer diagnosis is truly the ultimate betrayal. It’s our own bodies cheating on us with death at a time when we were counting on it the most, and all of the confidence and security we had about life vanishes in an instant. It’s beyond devastating, and it hurts so bad to be betrayed by our own bodies in such a terrible way at a key time in our lives.

Being struck with a cancer diagnosis and fight is challenging enough as it is. But if in mid-2011, right out of my brutal 5-month long fight against testicular cancer, someone with a crystal ball had told me that the mental and emotional challenges I would face in the coming years as a cancer survivor would exceed the physical challenges I had just faced fighting the cancer itself, I’d have given them some pretty funny looks, told them that they were crazy, and shaken my head with looks of disbelief and confusion and walked away. Because what could possibly be worse than the hell that I had just been through, right? Right? But today I know just how true such a statement would have been, because it’s exactly what happened to me, and it’s exactly how I feel today long after. I still can’t believe it myself, but I know it’s true. I had heard some stories, and I had even read Lance Armstrong’s book before my treatments started, but didn’t think any of the challenges of survivorship would apply to me. I was naieve and so very wrong, and know painfully now that the challenges of cancer survivorship should never be underestimated.

My cancer ordeal and the new challenges that I faced in life as a cancer survivor forced me to go through a personal evolution of self, and brought about the need to fundamentally change and restructure my approach to life and way of living in order to accommodate this new reality of mine. For the first time in my life I was truly scared, was afraid of living in my own skin, and was ill-prepared to deal with the anxiety and emotional rollercoaster that is “scanxiety”, as we go for follow-up appointments month after month, praying that our cancer doesn’t come back. I know what it feels like to have finally gotten your life back, only to fear losing it all over again from a terrifying recurrence scare that I experienced. I know what it feels like to have lost all hope, and feeling like you’re next, just waiting for the moment for more bad news to come, and that you’re going to be taken from the family that you love so much again. I know what a very deep depression feels like because I’ve been there. And I wish I didn’t know a thing about PTSD, which is single-handedly the worst thing I’ve ever experienced in my life, but I know all about that too. Rest assured that the real thing is far worse than any portrayal that you’ve seen in the movies. Your mind simply loses track of what’s real and what isn’t, and so many of your fears from the past find their way to the present, with little ability to distinguish between the two. And it potentially doesn’t stop… for weeks. It’s been over 3 years since my cancer diagnosis and over 6 months since any PTSD episodes, but the whole of this experience from diagnosis through today has hurt me so badly and deeply inside that I can still evoke tears on the spot, as I recall such painful episodes in my life as I write this.

My cancer survivorship experience spurned a personal evolution that finally began, way too late at the beginning of 2013, nearly two years after my initial cancer diagnosis. I knew that my entire approach to life needed to change, and that I was going to have to shake things up. Everything and everyone in my life was given scrutiny, including the person staring right back at me in the mirror. I was tired of cancer hurting me and my family, and set off to do whatever it would take to beat these terrible demons off for good, and for me to feel whole again. It took a full year to complete this evolution and it involved a lot more pain and trial and error, because I didn't know or understand what my needs were anymore. I needed to find out and re-discover my new self, whatever that may be. Towards the end of 2013 I was at last able to declare victory, and since the beginning of 2014 I’ve finally developed the emotional strength to begin looking back on all of this. After 4 months of reflection and more than a few tears and bottles of wine, I’m proud to finally be able to share with the world today my recipe for success. All of my secrets, my biggest lessons learned, everything that’s kept me going, and what’s really worked for me over the past few years as a young adult cancer survivor who has struggled to find my way in this new life of mine. 

1. Remove All Toxic Elements from Your Life

First and foremost, remove all toxic elements from your life. Fears, uncertainty, and doubts about cancer managed to fill every corner and crevice of my mind to the point that it broke me as a person.  When you’re so overwhelmed with negative thoughts, you literally become crowded out and can lose the ability to feel anything good at all, such as the love and laughter of your family. I slowly learned how to deal with and overcome all of this through the steps in this guide, but it came at a price. Having to focus inward so strongly has left the new me with neither the energy, nor the patience, to deal with much in the way of external toxicities. The news and its daily death count, who’s killing whom in the various wars that always seem to be raging around the planet, and the nasty blood-boiling political debates of the day have all needed to be switched off.  Trust me, you don’t need it and can get by just fine without it. And if Rome really is burning, you’ll manage to hear about it through word of mouth or at the office water cooler anyway. No need to be bombarded with such news 24/7. Focus on the good in your life and the world, and stay away from dark places and sources of negative energy.

2. Remove Toxic People from your Life

Similarly, if you’ve had people in your life that have repeatedly crossed lines with you, that have gone treading where they shouldn’t, or have rubbed you the wrong way one too many times, it’s high time to let them go too. Cancer is going to be playing enough head-games with you as it is, so the last thing you need in your life are actual people that are doing this to you too. True friends don’t do this. Let them go. God will not only bring much better people into your life when you do, but will reward you two-fold if you can forgive those that have hurt you, especially in such difficult times. I regret the few times that I’ve had to push people out of my life in these past few years as a cancer survivor, but it’s hard to imagine life without having met those that God brought into my life afterwards. These people have added so much to my life, helped to fill voids that I didn’t even realize existed, and I love, cherish, and appreciate these people so much. Make sure that your heart is in the right place, cut ties as gently as you can, and forgive those that have wronged you when you’re able and move on. Have faith that God will take care of you.

3. Find People that you Feel Safe Around and that Help you Feel Good

As someone who has suffered from post-traumatic stress disorder from my cancer, I’ve had to completely restructure my social life and social circles all based around how “safe” I feel around people. To this day, I still struggle to even begin to explain what exactly it is about some people in their ability to help me feel better, safer, more protected, or more understood in my life. Perhaps it’s some sort of deeper connection or understanding, or a common thread between souls, but these people are out there, and these are the ones you should try to develop closer ties and deeper friendships with, and spend more of your time with. These people are the gifts that God will bring to you, if you can manage to do the above and remove from your life those that have been toxic to you. Even if you’ve been hurt and are afraid to reach out, trust what your instincts are telling you about some people. The new or deeper friendships that I’ve developed with “safe-zone” people in my post-PTSD world have meant the world to me, helped me to heal, and helped me to feel safe and whole in my own skin again. Don't waste your time with people that bring out feelings of uneasiness in you and make you feel unsafe. They're no good for you.

4. Stay Engaged with Life and Enjoy Each Day

A history of cancer in our lives takes so much away from us. It changes our reality forever with an entirely new set of life circumstances. Memories of the brutality of our treatments haunt us, all while the future becomes so uncertain and terrifying. We worry if our cancer might come back, or if we’ll even have a future at all. All we really have left is the day and the moment before us, and nobody can take that away from us. Carpe Diem! Learn to live in the moment, and to enjoy and cherish each one that comes. Don’t let a day pass where you haven’t done something for yourself, anything that you know will put a smile on your face to give you some enjoyment in life.  Take the long way home because you like the drive better, go out to lunch with friends, or sneak out of work early to go for a run or for some private time with your significant other before your kids come home from school. After you’ve fully enjoyed today, make plans for tomorrow, and fill your calendar with fun things to do for the days, weekends, and months ahead. Keep your calendar full, and your mind engaged on enjoying the days and the life that you have before you, right here and now. Enjoy today first. Worry about tomorrow when it comes.

5. Take Back Control, Don’t Be Afraid to Do Your Own Thing

Among the many things that we lose as cancer fighters and survivors is the sense of control that we thought we had over our lives. It’s a helpless feeling as we shuttle from one doctor and one treatment to another just fighting to live, which is another traumatic life experience all by itself. Both at the time of our diagnosis, and during survivorship if we have a scare or fear our cancer might be back, it's not just our lives that we're fearing for once again, but that sinking feeling of being taken prisoner and our lives once again being held hostage by cancer, and the fear of losing all of the freedom and control that we had over our lives. It's a truly helpless and humiliating feeling to suddenly feel dependent on so many others at a time when we're supposed to be fully independent, and realizing just how little control we have. During survivorship, it’s all too easy to be caught up in the plans and schedules of others. Don’t be afraid to break with the group and make your own plans, or to do your own thing, in your own time, and on your own terms. It’s a very healthy exercise that will help you to gain a sense of getting some of that perceived control and independence back. Especially if you’re struggling emotionally or are trying to stay one step ahead of depression or PTSD as I have, every bit of control you can gain over your external environment is important. There are times when I couldn't even ride in a car with someone else, because I just felt like I needed to have that extra bit of control in my life, to drive my own car, at my own speed, and to have the ability to come and go at a time of my choosing and no one else's. When I've been hurting so terribly inside dealing with the after effects of post-traumatic stress, little things like this helped me to gain back some sense of control, and slowly my world was able to expand again. Enjoy your friends and the plans of others, but don’t be afraid to do your own thing and live life on your own terms as often as you need. 

6. Find Healthy and Productive Outlets for your Stress and Anxiety

Cancer truly is about the worst kind of betrayal you can face in life, which is why it’s not just a suggestion but a requirement that you find healthy and productive outlets for the stress that you’re likely to experience as a cancer survivor. Writing in my private journal has been a great way to vent away painful feelings, or to help understand confusing emotions. I’ve unlocked a lot of secrets about what makes me tick through writing in my journal, which in turn has helped me to understand what I need in my life and how to take care of myself better. When I’ve been anxious or afraid, executing my exercise routine has been a great way to bleed that energy off. I commonly run a 5K over lunch, which also serves as my private “me” time where I’m free to just meditate, or try to sort out whatever is on my mind. When I’ve been angry I’ve gone to the local shooting range with paper cancer targets in hand, and it’s strangely satisfying rapidly unloading a pistol or better yet a shotgun into those stupid cancerous cells. When I’ve been too afraid to be alone and my wife has been tied up with work or other things, I’ve made plans to spend time with some of those friends that I’ve felt very safe around, and it’s always been a great time. I never used to drink, but I’ve become a bit of a wine connoisseur, and can tell people a bit about different types of wines. I’ve never been on anti-depressants as it just wasn’t the right choice for me, but a nice glass of wine as needed has always helped to calm my nerves, ease my pain, and help take the edge off of things for me. And hobbies are a truly wonderful thing, along with the friends that come with them. I have photography buddies, car buddies, shooting buddies, among others. There’s always a circle of friends out there that I can engage with on my hobbies, and this has always helped to keep my mind out of the dark places.

7. Accept your Limitations, and Listen to what your Post-Cancer Body is Telling You

Your body is never going to be the same again after fighting cancer. Chemotherapy regimens are extremely toxic and can leave lasting damage, and highly invasive surgeries have their own risks that can permanently alter the landscape of your body as well, even when performed by the world’s best surgeons. Cancer itself means that a part of our bodies went terribly wrong and likely had to be removed in part if not in full. There’s excess capacity and redundancy built into our bodies in many cases, and we can go on living, but it absolutely doesn’t mean that our bodies will go back to normal. There’s likely to be some if not a lot of dysfunction as our bodies struggle to adjust, and our hormones and other levels fluctuate around, not to mention the chronic pain issues that so many of us experience too. What happens when a twin-engine aircraft loses an engine? Are pilots trained to keep flying it and get it on the ground safely? Yes. Is it business as usual? Heck no! Cancer means that our bodies just lost something permanently, and you’re going to have to learn how to keep yourself airborne without that, for the rest of your life. 

It took me a pretty long time to let go of the fact that I didn’t have the body that I once did. I pushed myself trying to do the things that I could do before and thought that I still ought to be able to do, but just kept failing. I became more and more frustrated with myself, my body kept breaking down, and my mood sank. I had been crashing and burning hard. Once I let go of my expectations for my old body, started listening to what my new post-cancer body was telling me, and the more I learned to respect what its new needs were, the better my life became. You’re never going to be able to learn what your new post-cancer body can and can’t do until you fully let go of what it was capable of before. It’s going to take some time, and it might even take years as it has with me, but once you fully know your body again and what exactly it needs and when, you’ll feel empowered and your quality of life will improve. I’ve let go of my frustration and disappointment at what my body can’t do and the various dysfunction that I have to deal with, and have just learned to become appreciative of what it can. I can't reach the altitudes that I used to and have to be extra careful in crosswinds these days, but I’m in the air and know how to keep myself there now, and dammit I’m proud of that!

8. Don’t Try to Forget – Stay Engaged with the Cancer Community

It’s all too common advice from friends, family, and even medical professionals to tell you to “just try to forget this and move on”. They’re all crazy. It’s tough enough to forget a supposed friend who stabbed you in the back, and it’s also tough to forget a failed romantic relationship or marriage especially if there was cheating. So how on earth can we be expected to “just forget” the ultimate betrayal or our own bodies? Maybe someday you’ll be able to make peace with and forgive your body, and hopefully this guide will help you a bit, but you’ll never be able to forget that you had cancer. It’s been far too painful for me to forget, because reminders of this terror inevitably find their way to me, which then brought this terrible history back in a sudden and uncontrolled way. The most helpful advice I’ve ever received during my cancer survivorship was from my dearest mentor, who suggested the completely counter-intuitive approach of NOT forgetting. Rather, embrace it. Do some good with it. 

My mentor had been writing articles for an association magazine for her own cancer, which she asked me to proof read and which I found to be inspiring. Numerous cancer survivor friends of mine participate in LIVESTRONG events across the country, which had also inspired me. And there are plenty of support groups and organizations that you can join to help others through their own battles. Staying engaged with the cancer community and outreach groups is also a way of holding onto that warrior instinct that you had when you were fighting your own cancer, and gives you additional strength when you're feeling weak. And when your own cancer demons really come knocking hard, it's your friends in the cancer community that will know and understand what you're feeling the best. It's good to surround yourself with people like these. We all help to support each other in the cancer community, and even those that have done so much to inspire and support others need support themselves at times.

There’s not a day that goes by when I’m not thinking about cancer at some point, my experiences and what I’ve learned through my cancer journey, trying to help someone else going through their own cancer fight, or the ways in which I could help others in the world facing cancer with my own knowledge. Becoming a Young Adult Cancer Survivor is the last thing I ever thought would happen to me. But it’s the life that I’ve been given, and just as my mentor has, I’ve not just accepted it but embraced it as best I know how. I don’t want to think about cancer everyday, but it’s the very best way forward for me. Staying engaged with the cancer community is a way to give back to this community and other people in need, and a way to do some good with this terrible knowledge that I possess.  

9. Love and Support your Supporters and Caregivers

As hard as it is to be the one fighting cancer and then having to heal both physically and mentally, don’t underestimate just how much pain it causes those that love you to be along for this terrible ride in the passenger seat. Fighting cancer is a deeply traumatizing experience not just for the person fighting, but for anybody emotionally involved in their lives. It tears them apart inside too. Cancer survivorship is a time of healing for all involved parties. Take time out of your lives for your loved ones. Go on some nice trips and getaways together and really enjoy each other. Let no moment go to waste. You all know how short and precious life can be. Live it up! If not now, when? You’ll never forget what you’ve been through, but the new wonderful memories you’ll make together with those closest to you, will go a long way towards helping you heal. 

I’m especially grateful to my wife, my family, closest friends, my cancer mentors, and spiritual guides and confidantes for their active support, and have let them know just what a difference they’ve made. I wouldn’t have made it to where I am today without their love, support, and friendships. And there are some that have just been exactly the right people, the right souls in my life, at exactly the right time, without even being aware of the difference they had been making in my life. Just the presence of their persona was able to have such an effect on me. It’s a very powerful feeling to know that you’ve helped to make such a wonderful difference in the life of another, especially just by being yourself. Share the gift of this knowledge with these people and let them know. I guarantee you that they’ll be honored and filled with joy.

10. It's Okay for Young Adults to Cry Too

The bottom line is that all of this just plain hurts. It's okay to cry, and don't let anybody tell you different. I've been so distressed and spooked, haunted, afraid for my life, afraid for my family, and so tired of being afraid of so much during these past few years as a cancer survivor, that I cried everyday for an entire month at one point. It's the body's way of relieving extreme stress, anxiety, and tension. It's beyond terrible to hold so much pain inside of you as I had been. I was completely wrecked inside and needed to release it all in whatever way I could, with whatever outlet I had. Most people probably don't know or understand what it's like to carry so much pain that you could cry everyday for a month, sometimes numerous times per day. The potential for emotional distress and mental-health issues for Young Adult cancer survivors is right up there with parents that have lost children, losing a significant other, or soldiers returning from war suffering from PTSD. I wish I could say this has been a lot easier, and I hope to never feel pain like this ever again in my life, but it really can be this bad. But you must release this pain. When you're at your lowest and darkest point, you can't begin to resume life as a more fully functional human being again until you do so. This 6-foot 3-inch large-framed bruiser of a guy that many have thought surely must have played [American] football or whom must have been in Army Special Forces is telling you that it's okay to curl up on the couch and cry it out. It's okay. Go for it. Just let it fly, and you'll feel better after you do.  

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Despite all of the challenges that I’ve faced in my life as a result of cancer, I know that I’m also truly blessed in so many ways. Many young adult cancer survivors find dating and relationships to be so awkward. How and when do you tell a love interest about your cancer history, and will they be accepting of that or not? Cancer becomes yet another layer for potential rejection in something that’s already difficult. What a blessing it’s been then, to have the true love of a soulmate by my side all these years. My wife and I will celebrate our 10 year wedding anniversary this year, and will have been together for 18 years total. I’m married to an angel, and my wife is truly God’s greatest gift to me in so many ways. I wake up every morning feeling like a blessed man with my wife by my side. She makes all that’s been so wrong, so right.

Like all too many young adult cancer survivors, I’ve suffered a complete loss of fertility as a result of my cancer treatments as well, which I'm revealing in public here for the first time. And with that loss, any hopes of my wife and I having more children together were gone with it. What a blessing it’s been then, to have the two awesome children that we had in the years just prior to my cancer diagnosis.  We had maybe wanted a third at some point, but this is an impossibility now. I’ve shed tears over this, but we’ve made our peace with the situation. We both love the two children that we have so dearly. They’re our lives and our everything, and literally irreplaceable. For all too many young adult cancer survivors though, the dream of ever experiencing the joy of a family and children of their own at all are fraught with challenges, and for some the dream is lost for good. It can become yet another layer of devastation in the life of young adult cancer survivors.

And what a great gift it’s been for me to both work in an environment where my needs and challenges as a cancer survivor have been so well understood from the top on down, and to have such a wonderful network of friends and supporters that have helped me along at every step of the way, almost like a relay team of angels. Not everybody is so lucky to have the supportive work environment that I’ve had, nor the network of support that I’ve had in my personal life, and the lack of either can cause very big problems for cancer survivors, too.

So perhaps a final lesson that can be learned as a result of the sum of my experiences as a young adult cancer survivor, is to appreciate the blessings that you do have in your life. Life doesn’t always turn out how we expect it to, and we don’t always get what we want. When you’ve reached rock bottom and have lost all hope, and feel as though you have nothing left as I had, simply appreciate the air that fills your lungs. For as long as you keep breathing life is going to go on. And as sure as the sun rises every morning, God’s blessings will be coming too. Have faith, and be open and ready for these blessings. Lastly, always know that you’re never alone in this. There are more and more young adult cancer survivors just like me around everyday. We understand because we’ve been through it all ourselves, and we’re ready, willing, and able to help. This is pure hell. Don’t be ashamed. If you’re sitting in the dark alone and afraid, reach out to us, and we’ll help guide you back to the light.

God bless,
StevePake.com
April 30th, 2014

Dedicated to all of the wonderful people that have been a part of my life in the past few years, and especially in 2013 when I had been struggling so badly. Thanks for making a difference in my life.

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