We men are primed to expect. We expect to be healthy, fertile, strong and pretty much invulnerable. We can do crazy things, dally with danger and head for the extreme with that same expectation that all will be well.
That was me in 1988 when suddenly I found a tiny lump on my right testicle. Four weeks later, I lost both of my precious testicles, (thankfully a very rare occurrence).
Such was my education that I knew nothing of Testicular Cancer and even less about hormones. I was not alone in my ignorance but I was alone with nobody to talk with who understood. Support was non-existent. It was a very dark place.
Testosterone replacement was casually mentioned as a future treatment as I left hospital. During the following few days testosterone drained from my body and my mind began to lose control. The fear of cancer returning became large in my mind and I shrank away from social scenes because friends and new acquaintances didn’t want to hear about my problems.
I liken the period spent without hormones in my body to a lady’s pre-menstrual tension, because hot flushes and a change of personality accompanied my every day. Rage was never far away as I grappled to find myself in a world that didn’t understand. It came to a head with a failed suicide attempt three months after I left hospital because my hormone doctor decided I could happily last a month on a two-week injection. He was wrong.
He finally agreed to give me pellet implants every three months courtesy of minor surgery. At last I felt the day to day stability of mind I’d been searching for since the operation.
I dutifully attended every cancer check-up sure that this next scan would reveal the cancer had returned despite adjuvant full torso radiotherapy.
I felt the urge to write, but lacked the head space to do so. I tried endlessly to interest a publisher, but unsurprisingly none jumped on my story. My writing was almost incoherent. Nevertheless, I decided it was what I had to do and made loose plans to abandon my comfortable life and find somewhere to write.
I left the UK and my business in September 1992 and lurched from location to location in search of that headspace.
First stop was Antigua for 9 fruitless months. Then Ireland for another six months as the World Wide Web became public. Ultimately I landed in Canada where in 1995 I found that headspace and wrote my first website in the early part of 1996. I called it “The Making of a Eunuch.” (www.tmoae.com)
Writing it was cathartic though I little realized I just wanted the world to know what I’d endured.
I scoured the web every day looking for other Testicular Cancer related websites, but mine was the only one I could find, until late in 1996 when I happened upon the Testicular Cancer Resource Centre at tcrc.acor.org.
I joined of course and immediately found others in the same boat as me and a camaraderie that I’d long since lost.
Those early days taught me the value of the Internet in bringing communication between patients wherever they were in the world. Moreover, because this was pre-social media the emails allowed us to express ourselves without the potential embarrassment of revealing vulnerability face to face.
It was that participation that allowed me to recover fully from the shock of losing both testicles thanks to the kindred spirits I found. However, there was ignorance about the importance of our hormones and my constant rants on the subject caused complaints to the site’s Editor Doug Bank.
I left Canada in 2002 and returned to the UK convinced my rants were well-substantiated, but there was precious little research to back me up. That handicap was eliminated by Dr Brandon Hayes-Lattin an American subscriber to the TCRC who’d witnessed my ranting about hormones and realised I would benefit from reading the new American Testosterone deficiency (Hypogonadism) guidelines.
Those guidelines were a game-changer and once I understood them, I set about writing my Testosterone deficiency website aimed at the UK. There was nothing like it here after all.
In it, I’d concluded that it was far from normal for men’s hormone levels to decline naturally with age.
Much to my amazement, I received a letter in early 2005 requesting permission to archive the website in the British Library for future researchers. I knew the website differed substantially from the UK stance on hormones but was otherwise baffled.
In 2011, the UK guidelines, broadly similar to its US counterpart were issued, but still there was a presumption that when losing one testicle the other would make up for the loss of testosterone production among testicular cancer doctors.
Gradually that position has changed so that now, many men in the UK and elsewhere, have their testosterone level routinely checked when they are diagnosed with testicular cancer. It is far from universal, but a change is happening.
This for me is the most important element of our recovery from testicular cancer. When chemotherapy is given, our hormones are adversely affected and may not recover. Even without any follow-up treatment our hormones can and often do reduce to a level that renders us incapable of full recovery because of the adverse effect on cognitive function and emotions.
It is a fact that our reproductive system is pre-supposed to work and that there are no checks on its function in the early years. Often delayed puberty is ignored as mine was.
The irony is that there is a check that can be carried out on boys and girls very early in life, as identified by Grumbach’s 2005 article(1) about early life diagnosis of pituitary gland malfunction.
Grumbach identifies the “window of opportunity” to detect Pituitary based signalling problems with LH and FSH that stop the testicles and ovaries (whichever applies) from doing their job. In boys it is between 6 and nine months old but the girls’ window is larger up to two years old. This “rehearsal” of the reproduction system accentuates the boy/girl differences.
It occurs to me that if the Pituitary signalling is OK and the systems aren’t producing Oestrogen in girls or Testosterone in boys as they should, an indication of ovular or Testicular issues is indicated.
Who knows what the role of insufficient Testosterone at that early age has in TC genesis, or Oestrogen in Ovarian cancer?
The experts apparently don’t, as this “window” is pretty much ignored.
It does not escape attention that pursuing routine testing of our reproductive systems at that age could very well lead to a reversal or at least a slowing down of the increasing numbers of infertility and perhaps provide pathways to finding genetic malfunctions which cause TC.
We can’t escape the rigours of TC and its effects on our psyche but we can do a much better job of identifying those boys at risk, thus limiting the post TC effects.
Forewarned is forearmed.
Grumbach MM (2005) A window of opportunity: the diagnosis of gonadotropin deficiency in the male infant. J Clin Endocrinol Metab 90: 3122–3127