A recent article in the International Journal of Men’s Health argues that we need to be more honest with patients about the impact of “hormone therapy” in the treatment of prostate cancer. Unfortunately the full text of this article by Cushman et al. is not available on line, but the authors have provided a “Beyond the Abstract” commentary on the UroToday web site. (You need to register with the UroToday site to read this commentary, but access is free.)
Cushman and his colleagues make the following points:
- The use of language by physicians and their patients may significantly affect health care outcomes.
- The clinical effects of “hormone therapy” (i.e., androgen deprivation therapy or ADT) include medical “emasculation” through pharmacological castration, the effects of which can and do reduce the quality of life of the patients — and of their partners.
- When prescribing ADT, most urologists avoid the use of the term “castration” because of its (negative) social implications.
- Physicians may be doing this because they believe their patients may otherwise reject ADT.
- Patients — and their partners — tend to be better off when they are fully informed about how ADT works (and are given suggestions about how to manage the side effects).
It is certainly the case that words like “castration,” “impotence,” and others are “loaded” terms within Western society. It is also the case that replacing them with more politically “safe” phrases (e.g., erectile dysfunction, hormone therapy) doesn’t actually help the situation in any real way.
On the other hand, the argument that in Middle Eastern and Oriental societies the eunoch was often a man of great power and influence is not helpful to any man brought up based on modern Western traditions and value systems. It comes with a whole other set of “loaded” terminology and concepts.
It seems to The “New” Prostate Cancer Infolink that “honesty is the best policy” in dealing with any medical issue of this type. ADT is designed to lower a man’s testosterone levels. This has an almost inevitable effect on certain physical symbols of masculinity. One can choose to see this as “emasculation” or one can choose to see this as medical care for a serious clinical condition. How each individual deals with this issue is not going to be as simple as the language that is used in discussing it, because it will also depend on that patient’s self-construct of himself as an individual, developed over the prior 40 or more years. Some men — and their partners — will adapt to the situation with very little difficulty. For others it will be a major problem that may require all sorts of extensive help and understanding. There are certainly patients and partners for whom resolution of this change in circumstances has proven to be impossible.
While Cushman et al. seem to be very focused on the social “humiliation” associated with the language of castration and emasculation, The “New” Prostate Cancer InfoLink believes that that issue is less important than the clinical support that a patient and his partner may need as they start to understand and appreciate the implications of ADT and what can actually be done to help them in whatever ways they may need help.
We find it interesting that a vast range of ancillary medical services are available to support women who must undergo mastectomy and hormone treatment for breast cancer (starting with breast reconstruction surgery) and yet the comparable medical support for men who lose the external symbols of sexuality as a consequence of various treatments for prostate cancer are very limited.
Perhaps the real social problem here is not just the language around hormone therapy but the social need to understand and accept what real medical care implies for a man whose physical symbols of masculinity may be profoundly impacted by his treatment at almost any point along the prostate cancer treatment continuum. In our view, we have really not yet adapted to the realities of physical and emotional risk associated the modern management of prostate cancer — and the consequent fears commonly expressed by the majority of men (either openly or through the inability to even talk about the topic) are all too evident every day.
Filed under: Living with Prostate Cancer, Management, Treatment | Tagged: ADT, androgen deprivation, castration, emasculation, erectile function, language, masculinity |
THE "NEW" PROSTATE CANCER INFOLINK 
I find it really interesting that the focus of most of the ADT discussion is on sexual function. From my experience with ADT this may have the least impact on my quality of life. I guess ADT affects me to a greater degree but while on ADT I lose significant executive level decision-making ability, have impaired cognition, am unable to multi-task, and have short-term memory issues. In my case these impact my ability to continue with my career as a senior financial executive. I have been forced to give up my 30-year business career.
In addition, the physical impacts of fatigue, weight gain, and loss of stamina significantly decrease my ability to pursue my hobbies (triathlons and running). I been also been forced to give up my 25-year career of racing and competing in triathlons.
That a lot of loss.
I wonder how many others struggle with these types of issues.
There appears to be enormous variance in the impact of ADT on quality of life. There are certainly men for whom the only side effect is the sexual one. And then there are men like you for whom ADT leads to profound disruption of physical and cognitive function. We need a wider range of therapies for men traditionally treated with surgical or medical castration. We also need to take the side effects of ADT which you describe just as seriously as the sexual ones. In many ways they are just as emasculating.
My experience is very similar to Bill’s … My first 4-month Lupron treatment (after prostatectomy) left me nearly unable to function at work due to mental fogginess and mood issues. I was deeply depressed for about 2 months. I would have done nearly anything not to repeat that, but when my PSA started doubling every month or more I had no other options. Three years later, still on Lupron, I am able to function better at work but still have memory loss, weight gain, muscle loss, reduced stamina, and a minimal sex life, if you can call it that.
A new oncologist I’m working with suggests that I have an orchiectomy, which seems to not be discussed as an option any more. Are there any benefits to surgical castration over chemical? Do some of the side effects diminish when the pituitary gland is not under siege from the LHRH agonist? I don’t care for the idea of surgical castration, but now that I’m dealing with bone pain and neuropathy when other treatments aren’t effective, I’m beginning to think it won’t matter all that much whether my testicles are still there.
Euphemistic language is inherently intellectually insulting. No one deserves to be lied to — through omission or commission — when making informed choices about medical treatment options. It seems so hopeless based on editorials like Cushman’s et al.’s that the medical community will ever afford consumers any meaningful respect for their personal values, but for some folks, “quality of life” (a dismissive euphemism in and of itself) is more important than longevity. Most of us don’t live for the goal of making our physician’s, or our treatment option, or our state’s, or our country’s mortality rates look impressive.
Mike, it’s pretty edgy of you to even bring this up, so I don’t want to come down to hard on you, but your comparison to breast cancer is instructive. Most breast cancer “reconstruction” is for aesthetic purposes — it doesn’t restore sensation. It’s about making women more “normal” in their sexual appeal to men — not about maintaining women’s capacity for sexual function. So, it’s actually pretty pathetic and indicative of the belittling of women that that’s the one area you feel you can lift up as an example of where we’ve made “progress.”
The bottom line is, ADT is an unintentionally, but inevitably, cruel, cruel form of treatment. It makes people feel terrible and deprives them of life’s most intimate desires and experiences. When administered for reasons of politics and punishment it is considered a form of torture, and yet we’re supposed to act grateful when it’s used as “medicine.”
One goal should be to use it as sparingly as possible for men (and women in the case of hysterectomies, etc.) who are fully, explicitly aware of what they must sacrifice (and how permanent the sacrifice is) to access its other benefits.
The other goal should be to quit spending research dollars trying to justify cruel, high cost to QoL treatments and focus resources on focal therapies and other treatments that preserve a quality life, not just drag people’s tortured and miserable existence out as long as possible.
Damn, nobody gets this! It’s not the loss of the physical ability; I could solve that with an injection or the insertion of an appliance. It’s the loss of desire. Who the ___ am I now? Concededly, the man I was wouldn’t chase my wife around the bedroom seven nights a week, but this thing that I have become after ADT doesn’t want to chase her around the bedroom at all, ever. Do I still love my best friend and partner of 38 years? Yeah, maybe, sort of like I love my mom and my daughters. Am I trying to fake it for her? You bet. Do you think after 38 years I’m fooling her?
And that’s just the most obvious effect of ADT. The others are more subtle, harder to recognize and not easily described. For example, the man I used to be learned early on to control himself like a grown man should. He never did and never would burst into tears at the end of West Side Story. Where did that guy go? What else do I resond to inappropriately? You name it.
I was a trial lawyer by training, competitive as ____, who trusted his carefully trained instincts and made hundreds of decisions a day with easy confidence. Now, I too often mentally lock up, unable to decide things that used to be no-brainers. That competitive drive that for decades was my edge has gone with the wind. Needless to say, I haven’t appeared in a courtroom or filed a pleading since I elected longer living through chemistry.
For whatever it’s worth, I was told going in that the bad news about ADT is that you can’t get it up, and the good news is that you no longer want to. Sorry, but the only good news is that what you become doesn’t die right away. I am just not sure how anybody is going to help with that, but I do think it would be better if a man knew what he was getting (turning) into.
Kevin:
We do “get it.” What we need is an utterly different way to affect prostate cancer progression that does not disrupt the entire male endocrine system. That may or may not be possible. In theory it ought to be if one could blockade the androgen receptors only on prostate cancer cells. The problem with current hormone therapy is that it is designed to simply shut down all testosterone-based activity — which is comparable to putting an elephant to sleep by blowing its brain out!
“… which is comparable to putting an elephant to sleep by blowing its brain out!”
How could a treatment with those impacts possibly be considered an ethical treatment?
As a culture, we tried lobotomies, but decided the damage wasn’t worth the benefit. I hope I live to see the day that we can acknowledge the barbarism of this period for what it is.
Tracy — Point excellently made! When I read about all the side effects of ADT, I was shocked! Like you, I wondered why this was even considered medicine. If the same were given to sexual offenders, particularly child molesters, the Supreme Court would rule it cruel and unusual punishment. So why isn’t reasearch being done to find another method of controlling prostate cancer?
Dear Janice:
Oh please trust me when I tell you that such research is being done and has been being done for 20+ years. That doesn’t make it easy, but there has been enormous progress in just the past 3 years.
You need to compare the current situation to the period before there was modern ADT, when men died in agony from uncontrolled, extensive metastasis. Then one put the elephant to sleep by breaking its bones and just leaving it to die without the kindness of blowing its brain out.
This article is VERY timely. I am a Prostate Cancer Patient Advocate at UCSF, and for the past 2 years have been hammering on the docs that they need to do a better job preparing men embarking on hormone therapy — particularly if it is likely to extend beyond 12 months.
Both Peter Carroll and Mack Roach clearly get it and acknowledge the deficiency. I was asked to collaborate in preparing a new pamphlet along with the medical oncologists. I am also working to provide better support via symptom management.
Sadly, the medical oncologists have been very reluctant to work in a collaborative manner to prepare this document, degenerating into a stressful political fight that I hope to overcome, particularly the chief oncologist of the hospital, who formerly ran this department. He/they think they know best — but do a lousy job and find it hard to acknowledge that we, the patients, might bring a lot to the table.
Bottom line: There is a huge need to better prep men for hormone therapy … and we will succeed!
rd
Thank you, Rick! You shouldn’t be shy about identifying the medical oncologists who wish to fool men into making uninformed decisions about how very drastically their true selves, their core identity will be altered by this “treatment.”
Perhaps men don’t need to be “prepped” for ADT. Perhaps men need to be advised against it in all but the most extraordinary cases. Perhaps as an advocate you could start pushing the medical industry into treating men as whole humans with a brain, and a heart, and a body that has integrity and value worth preserving. At some point, prostate cancer treatment has to get beyond the idea that the totality of purpose of these men with prostate cancer is to give doctors a shot at vanquishing the cancer cells.
It seems to me that we have two simultaneous discussions.
The first is whether doctors explain the side effects of ADT sufficiently clearly and in language that patients can understand. I write “can understand” and not just “understand” because people have an amazing ability to misinterpret and hear only what they want to hear.
It seems that there is general agreement that such an explanation is extremely important and if doctors are not emotionally or otherwise capable of providing it, patients should be referred to other venues. I participate in a prostate cancer support group and we have many newly diagnosed men coming to our group and asking to hear from other patients about their experience. I must say that many patients either don’t experience such severe side effects, or don’t consider them to be as significant. Here comes into play the personal perspective of the patient, i.e. what does he want to hear? the opinion of those who suffer miserably, or that of those who live with the side effects?
The second discussion is whether, considering the side effects of ADT, it is a humane treatment or should it be banished?
Here again I can speak from my 2-year experience of listening to others. Some people are willing to go through seven different kinds of hell just to extend their lives by 6-8 months. Others consider their quality of life more important and prefer to ignore the possibility of extending life by a short period if this entails suffering and lacking of what we normally consider essential components of life. I think this is a very personal decision and it is not for us to decide.
Thank you Reuven. A very concise summary of a complex situation. And I entirely agree that this is a very personal decision.
My response to Tracy …
As an advocate, i believe my job is to help make men aware of the side effects of HT, particularly if they remain on it for more than 12 months. It is for each man to decide whether he wants to accept the therapy. As Reuven correctly points out, the side effects are different in every man; moreover, each man’s threshold differs.
Personally, I support HT. For many men it is effective in either curing (adjuvant) or staving off the cancer. it can defer bone metastasis and prevent the immense pain that comes with that. The side effects are considerable, and frankly should be presented in the same light as chemotherapy, albeit the side effects are slower in manifesting and long lasting.
If the cancer is recurring, then the “totality of purpose” is not to vanquish the cancer cells — we know that rarely happens with currently available treatments. I believe the purpose should be to extend life as far as possible whilst still maintaining good quality. What is good quality for one man may be unacceptable to another; hence my purpose as an advocate is to let each man know the ramifications of a proven and effective treatment so he can decide whether he can tolerate it and whether it suits his needs.
What I find unacceptable right now is the administration of HT without adequate disclosure to the patient so he can make an informed decision.
Having experienced nine consecutive 3-month Lupron Depot shots, I feel well qualified to speak on this issue.