I’m pleased to see that the new American Urological Association Guidelines on the Diagnosis and Treatment of Early Stage Testicular Cancer have finally been published, and it was a great honor to be a small part of this!
Unlike the National Comprehensive Cancer Network NCCN Guidelines for Testicular Cancer which covers all stages and treatments, this new AUA guideline is focused specifically on earlier stage patients up to and including Stage IIB.
As stated in its purpose, “A priority for those patients with low-stage disease is limiting the burden of therapy and treatment-related toxicity without compromising cancer control. Thus, surveillance has assumed an increasing role among those with cancer clinically confined to the testis. Likewise, paradigms for management have undergone substantial changes in recent years as evidence regarding risk stratification, recurrence, survival, and treatment-related toxicity has emerged.”
And with that, these AUA guidelines for earlier stage Testicular Cancer patients were born, at the Johns Hopkins University Evidence-based Practice Center in Baltimore, MD.
Why Early Stage Specific Guidelines Matter
As a Stage IIB patient diagnosed back in 2011, I ended up having to go through the wringer for treatments, and suffered quite a bit in the aftermath from chemotherapy induced peripheral neuropathy pain (CIPN), and from chronic fatigue and pain issues, among other things. I had nightmares about everything I had been through for years, and suffered from PTSD symptoms at times, and other mental health issues as well. To this day, I still experience regular physical - but tolerable - pain that can be attributed to my cancer treatments 8 years ago, which is why I’ve always tried my best to help educate the testicular cancer community about the potential ramifications of treatments, and that the focus shouldn’t just be on getting cured, but to also minimize the potential burden of treatments. These chemotherapy drugs are a miracle and why I’m still here to write this, but they’re no joke as far as potential long-term effects to our bodies and quality of life. We only have one body to make it through our entire lives, and testicular cancer tends to strike younger men who will have to live with whatever permanent effects there might be from treatments for much longer than the typical cancer patient who is diagnosed much later in life. This is why it’s so important to focus not just on achieving a cure, but doing so with as little collateral damage as possible “without compromising cancer control.”
As I wrote in my blog about the RPLND surgery, if I had done that surgery first as the primary treatment, and then followed up with chemotherapy afterwards, I likely wouldn’t have suffered a loss of fertility from the RPLND surgery, because it’s a far easier surgery to do prior to any chemotherapy (which makes preserving the ejaculatory nerves much easier), but I also likely only would have needed half of the chemotherapy and probably wouldn’t have suffered nearly as much of the neuropathy pain and chronic fatigue issues that I did for years. These things have all had non-trivial impacts on my quality of life after cancer in addition to my fertility, and all of that matters to the earlier stage testicular cancer patients who will have numerous decades of life still in front of them in the vast majority of cases.
Presentations by both Dr. Phil Pierorazio and Dr. Lawrence Einhorn at the first Testicular Cancer Summit back in 2017, gave me hope that things were headed in the right directions as far as managing testicular cancer treatments and the patient population. Both “Dr P” and “Dr E” and other amazing doctors present proved through both their words and the compassion the displayed, that they truly understood the lives of their patients and their challenges after cancer. These AUA guidelines for earlier stage testicular cancer patients are a perfect embodiment of their visions laid out for the future of testicular cancer management.
The AUA Testicular Cancer guidelines were authored and then reviewed by dozens of doctors and testicular cancer experts both internally and externally to the AUA. It was a great honor to be one of just three non-MD reviewers of these guidelines, along with my friend and fellow survivor Mike Craycraft from the Testicular Cancer Society, and Sam Gledhill, who runs the Global Testicular Cancer Programs for Movember Foundation. Admittedly, much of what’s in these guidelines were well above my pay grade, but serving as a non-medical external reviewer was an invaluable opportunity to provide patient and survivor community feedback on various issues to the world’s foremost experts on testicular cancer, to which I took full advantage. Just having my name on the same page as Dr. Lawrence Einhorn, the father of the cure for testicular cancer, is a huge honor, and a nice way to cap off my years of advocacy work in the testicular cancer community.
The AUA early stage Testicular Cancer guidelines are written more for medical professionals and are not exactly patient friendly to read, but there’s a wealth of information present in them. For a more patient friendly guide to testicular cancer, check out the National Cancer institute’s guide to testicular cancer (linked below), where they also have a more advanced medical professional version linked as well. The latest NCCN Guidelines for Testicular Cancer are another must read if you’re really serious about understanding testicular cancer treatment paths through all stages, and are available online for free after registration at the NCCN website.
I’m not very active on social media and support groups these days due mostly to a lack of time, but am always happy to talk to anyone about anything related to testicular cancer through my contact link, which will go straight to my phone. Whether you’ve just been diagnosed with testicular cancer and are trying to understand different treatment options, or you’re struggling with life after cancer, I’m always available for the testicular cancer community, even if I haven’t been very visible as of late. Definitely drop me a line! I’m always here.
Thanks again to the AUA Team for the opportunity to serve as an external reviewer of these guidelines.