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.
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!
Note that I do not actively monitor the TC-Cancer.com forum anymore, so if you have a question or comment, please do use the contact link at my website to get in touch, and I'm happy to talk people through the RPLND surgery or anything else!