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.”
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.
Additional Perspective Via Nick O’Hara Smith
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!
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
