Should we be calling “hormone therapy” for prostate cancer a spade?


When women and their doctors talk about “hormone therapy” they are most commonly referring to the (now) highly controversial issue of whether hormonal supplements (estrogen and progesterone) should be used at and after menopause to prevent the symptoms of menopause and/or later risks related to heart disease and osteoporesis.

By contrast, when men talk about “hormone therapy” with their doctors, they are most commonly referring to the application of agents that induce a chemical (medical) form of castration, i.e., the reduction of serum testosterone levels from a normal level of about 500 to 600 ng/ml down to below 50 ng/dl (and ideally below 20 ng/dl).

In other words, the term “hormone therapy” is used to mean two utterly different things in the two very different contexts. It is not exactly a surprise, however, to discover that an awful lot of people are under the impression that “hormone therapy” for men with prostate cancer is actually some form of hormone supplement, and do not understand that it is designed as a replacement for surgical castration (orchiectomy), i.e., a form of hormone deprivation. This includes many men who are actually receiving “hormone therapy” as treatment for prostate cancer … and their wives or partners.

A recent study by Rot et al. (and an associated “Beyond the abstract” commentary by Wassersug on the UroToday web site) argue that it is high time to reconsider the use of “hormone therapy” as an appropriate term in the treatment of prostate cancer.

In their paper, published in the European Journal of Cancer Care, Rot et al. report data from an on-line survey of 690 male and female cancer patients and non-patients. They show that:

  • “A large proportion” of those surveyed did not understand the terminology used to describe prostate cancer treatments.
  • Most did not appreciate that terms like “chemical castration,” “hormone therapy,” and “androgen deprivation” all mean the same thing.
  • Male respondents
    • Were more likely to agree to “hormonal therapy” than to “castration” as a treatment for prostate cancer
    • Felt more strongly than women about how androgen deprivation therapy (regardless of how it was described) affected masculinity
  • The men and the women had very different views about the impact of androgen deprivation.

They go on to conclude that if men with prostate cancer and their partners are to make well-informed decisions about treatment and to cope well with the side effects of androgen deprivation, their healthcare practitioners need to be offering accurate information using language that is unambiguous.

Wassersug expands on this issue in his commentary on the UroToday web site.

Now we all know how hard it is to change the habits of a lifetime. Rot, Wassersug, and their colleagues are probably correct; it would almost certainly be better if we stopped usen the term “hormone therapy” in talking about the treatment of prostate cancer and used the term “androgen deprivation therapy, which is a medical form of castration”. Getting everyone to do this, however, will be challenging.

Having said that, The “New” Prostate Cancer InfoLink is going to try to be more precise in the use of appropriate terminology in the future and only use the terms “hormone therapy” and “androgen deprivation” together with a clear explanation that these are medical forms of castration. Please feel free to tell us if we forget!

21 Responses

  1. I hope you will reconsider — not the goal, but the specific term you propose. The phrase “hormone therapy” may be misleading to some, but the term “castration” is vastly worse. Calling ADT “hormone therapy” may be calling a spade a tiller; but calling it “a form of medical castration” is like calling a spade a hand-held snake guillotine.

    So far as I can tell, the only people who use “castration” as a neutral term meaning “androgen ablation, however it may be accomplished” are prostate-cancer physicians and researchers. To everyone else, “castration” means a form of mutilation or torture — browse the results you get from Googling the word “castrate”.

    Indeed, many laypeople think that castration means “mutilation or removal of the genitals”. For example, even some professionally edited publications used phrases like “Lorena Bobbitt’s castration of her husband”.

    Words mean what their actual users think they mean, not what some small ivory-tower group claims they ought to mean. Physicians and researchers tried to repurpose the term “castration”, but they failed. Their inability to recognize their failure doesn’t change the fact, and I hope the InfoLink will not perpetuate the mistake.

    I am reminded of people who insist that because scientists once employed the words “moron”, “imbecile”, and “retarded” as clinical descriptions, they are not and cannot be insults. Such people are wrong; “moron” is indeed an insult, because the word is almost invariably used insultingly.

    Case in point: When a report in the European Journal of Cancer Care notes that a large proportion of those surveyed do not understand the terminology used to describe prostate cancer treatments, I don’t doubt them. But when the authors go on to say that “most do not appreciate that terms like chemical castration, hormone therapy, and androgen deprivation all mean the same thing”, the authors are wrong: Those three terms are not synonymous merely because the medical literature uses them interchangeably, and castration does not just mean just androgen deprivation and nothing more. Wishing or declaring a word to mean some new thing does not render it so.

    Just like etymology experts who say that the word “niggardly” is as racially inoffensive in 2012 as it was in 1912, medical mavens who think they are authorities on language are simply out of touch. And, in the case of the word “castration”, dangerously and offensively so.

    Let’s look again at the phrase “hormone therapy”: In the context of women’s health, it is shorthand for hormone replacement therapy. And in the context of men’s health, it is often shorthand for hormone deprivation therapy. The important words in both contexts are “therapy” (treatment that heals or mitigates an undesirable state that is not necessarily abnormal), and “hormone” (the body’s molecules for sex drive). As a two-word phrase, it does rather well. And the three-word phrase “hormone deprivation therapy” is better still.

    If the InfoLink wants a short-but-not-shorthand phrase that provides fuller information for laypeople, you can say “therapy to reduce male sex hormones to a near-zero level”.

    Or, if ADT is mentioned out of context for the first time in an article, here’s a sentence that might be appropriate:
    “ADT (androgen deprivation therapy), sometimes also called hormone deprivation therapy, reduces male sex hormones to a near-zero level, often with results similar to female menopause: hot flashes, reduction in energy and libido, increased risk of depression/obesity/heart disease, etc.”

    See how easy it is to provide an accurate neutral description without conjuring visions of genital mutilation?

  2. Several years ago, when writing a paper regarding androgen deprivation therapy, a physician friend assisting in editing that paper remarked that rather than using the term androgen deprivation or hormonal therapy, the more appropriate term should be “testosterone reduction therapy (TRT).”

    I have forwarded Richard Wassersug’s referenced paper to a handful of local urologists and medical oncologists encouraging them to explain to their patients why androgen deprivation medications are being prescribed, what each medication is expected to perform, the side effects that can be anticipated as the result of those medications, and remedies that might reduce or eliminate those side effects.

  3. It should be referred to in the vernacular of the patients, “chemical castration”. That hits the mind where it hurts.

  4. But Paul … The standard term for the failure of hormone therapy is “castration-resistant”. You have never complained about the use of that term.

  5. Chuck:

    Unfortunately, “testosterone reduction” therapy is an inaccurate term for the simple reason that the use of LHRH agonists and antagonists, not to mention the use of antiandrogens, is to mimimize levels of as many antiandrogens as possible (of which testosterone is just the most common).

  6. REVERSIBILITY OF ADT SEPARATES IT FROM CASTRATION

    Despite being much more expensive, ADT is far more popular in the US today than castration as a way to sharply reduce testosterone. My impression is the main reason ADT is preferred is that the effect is reversible for virtually all of us when therapy is stopped, as it is during intermittent therapy, provided we are not on it long term, especially if we are elderly. Most of us, including me, completely or substantially recover from all or most of the side effects of ADT during the vacation period of intermittent ADT. (My testosterone actually rose to over 1,000 for a while before settling down somewhat below that. The increase was probably due to the effect of finasteride, maintained during the vacation, which sharply curtailed conversion of testosterone into DHT.)

    Surgically castrated men now have the option of testosterone supplements to enable them to go on intermittent therapy, though that must be managed carefully, as must intermittent ADT that is all based on drugs.

    Whatever terms are used, it is important that scare language be avoided and that men and their partners considering ADT are empowered with accurate knowledge of the benefits and side effects.

  7. I’ve never had a problem with this, during the whole 3 year 7 month treatment I just completed. I was careful to always use “androgen deprivation therapy,” to correct others if they used “hormone [fill in],” and to call it “a form of chemical castration.” I insist on technical precision from my doctors, and feel quite strongly that others should be informed about this, as adequately as possible. If not, the old prejudices and stigmata will persist, and patients might well choose suboptimal treatments. I have the impression that more and more women speak openly and in greater detail about breast cancer, so why should men and their physicians be any different?

  8. I almost always refer to my treatment as chemical castration when explaining my treatment — mostly because that is exactly what it is, and to me I feel like I am castrated, so it works for me.

    Patients should be told they are getting chemically castrated when signing on to the treatment.

    Bill Manning

  9. You think I’ve never complained about the term “castration-resistant”? On the contrary! Believe me, I have given vociferous suggestions to the NIH, clinicaltrials.gov., medical journals, etc., about the term “castration-resistant”.

    But I try to complain effectively rather than just whinge, and so I didn’t/don’t complain to you about their language misuse. (Besides, employing the phrase “castration-resistant cancer” to an experienced patient base is nowhere as bad as saying “ADT is medical castration” to someone hearing about it for the first time.

    However, you are the de-facto stylebookkeeper for InfoLink terminology, and you proposed a change to your standard, which you own and control. I believe the exact change you proposed is a disastrously bad one. Therefore, I spoke up and told you so, while also proposing phrases/terms I think would be much better.

    There is no excuse whatsoever for anyone to use the term “medical castration” unless they are being intentionally vague (e.g., to protect patient privacy). The terms “surgical castration” and “orchiectomy” are precise and unambiguous for that procedure.

    If you must use the c-word in a synonym for androgen ablation, “chemical castration” is a better choice, and (pace commenter Greg) “pharmaceutical castration” is better still, as it prevents the even more hideous vision of testicles dissolved by acid.

  10. The women have got it right and the true meaning of “hormone therapy” is the use of steroid hormones in treating disease. So hormone therapy for women implies the use of estradiol for postmenopausal symptoms and for men implies the use of steroids such as dehydroepiandrosterone (DHEA) for the treatment of BPH and prostate cancer.

    The term used in prostate cancer should really be “hormone deprivation therapy” otherwise known as “androgen deprivation therapy” (ADT).

    In the true sense of hormone therapy, has anyone with prostate cancer ever responded to taking testosterone supplements?

  11. Euphemism prevents men from fully understanding what they will be subjected to, thus depriving them of the right to make a fully informed decision.

  12. I just discovered this thread and am impressed by the vigorous back and forth among those who want to hide the word “castration” and those who appreciate the honesty implicit in the term.

    I just want to remind folks of the broader theme and ethical concern that drove my colleagues and I to undertake the study in the first place. If patients don’t understand what the language means, they are denied their right to being informed in advance of consenting to treatment. Whatever one wishes to call it, the companion paper by my colleagues and I that is coming out in Urologic Oncology shows that patients are very poorly informed about the side effects of ADT and their management. Our paper shows that the simplistic label “hormonal therapy” doesn’t help inform patients about what they are consenting to. (Click here to see the abstract of this paper on the PubMed web site.)

    Richard Wassersug

  13. The “New” Prostate Cancer InfoLink has taken this opportunity to provide additional commentary on the paper by Walker et al. referenced by Dr. Wassersug.

  14. Thank you for your paper, Dr. Wassersug. As a long-term veteran of very successful triple ADT with disciplined efforts to minimize side effects, I believe your paper will be helpful to many new ADT patients. However, I continue to find emphasis on the term “castration” misleading for those who do not actually have an orchiectomy.

    For many of us on intermittent ADT, there are long periods — perhaps permanent after a single cycle of ADT — with full recovery from side effects. Moreover, regarding reduced erectile function and libido, expectation of recovery goes a long way toward easing the burden. A small but noticeable proportion of us, around 10%, apparently are virtually free of side effects. For many others, countermeasures very substantially reduce side effects that have the potential to be problems, which is noted in your abstract.

    Unfortunately, while adding something to understanding, emphasis on the word “castration” also conjurs up some depressing expectations that are not accurate. It is useful to mention castration, but it is probably more helpful to cushion it in language conveying that in some ways ADT is like castration but with important differences.

  15. Jim,

    Thank you for your comments.

    As you probably know I study androgen deprivation, not only in prostate cancer patients on ADT, but in other populations. I have published a fair bit on the language around androgen deprivation and could send you some of those papers, if you are interested. Probably the one with Cushman as the first author, titled the “Language of Emasculation: Implication for Cancer Patients” that came out in the International Journal of Men’s Health back in 2010 would be most relevant. If you send me a private e-mail I can send you a pdf. I would hope you would be willing to give that an objective read before you decide that the word “castration” should always be avoided for patients on chemical ADT.

    In terms of your own situation, I was surprised by your statement, “For many of us on intermittent ADT, there are long periods — perhaps permanent after a single cycle of ADT — with full recovery from side effects.” This would depend on the length of time you are on ADT. It has been in the medical literature for some time now that with a year or more of LHRH agonist treatment, the sertoli cells in the testes do not fully recover. So did you and all the others who reported full recovery actually have that checked? It is unusual for prostate cancer patients on LHRH agonists to check their sperm count, but you are saying that you have had fully recovery during off periods while on intermittent ADT. So did you actually do a sperm count? If so, how did you talk your physician into doing that test?

    Richard W.

  16. CLARIFYING “FULL RECOVERY” UNDER INTERMITTENT ADT

    Dr. Wassersug,

    I’m replying to your reply of August 23, 2012 at 8:59 pm to my immediately preceding post. First, thank you for responding.

    TIME ON ADT AND RECOVERY FROM SIDE EFFECTS. I too understand that recovery from ADT side effects is at increasingly greater risk as the time on an LHRH agonist increases. You mentioned literature indicating that risk increases after a year or more of ADT. My understanding, based mainly on comments from medical oncologists specializing in prostate cancer with extensive use of ADT, is that the risk generally is not substantial until about the 2-year point on an LHRH agonist, with men at age 70 or older incurring substantial risk beyond that point. (I was on ADT for 31 straight months during my first cycle, in my late 50s, and recovered very nicely, with “complete” recovery by the 6-month point. No doubt a very few patients, even younger ones, do not recover after shorter periods of ADT, but I believe the statement is valid as a general guide. Perhaps the literature you mention and the guideline I have conveyed are compatible.

    FULL RECOVERY, SERTOLI CELLS, SPERM COUNT. As for the “full recovery” I mentioned, I was speaking somewhat generally about the main concerns of men on ADT. I did not have sperm count checked after ADT, but during my latter 50s and now at age 69, that was of no concern to me or to my wife. We are delighted to be in the grandparent years, but have no interest in adding to the family. While sperm count is no doubt a concern for a small proportion of relatively young patients contemplating ADT for prostate cancer, I’m confident it is of no concern for the vast majority of us, because of our ages, having already done our parenting. To me, what strikes me as a real research finding about sperm count, though important, is as concerning as loss of a substantial amount of body hair, specifically for me on the legs, and some on the chest: yes, it happens, but it does not bother me a bit. I am confident the vast majority of us on ADT would share that view too. The information about sperm count is important, but for most of us it is simply a non-issue — not on our radar. (By the way, I have a decent amount of scalp hair thanks to finasteride and Avodart, hair that grew where I was previously bald. No Ronald Reagan look, but I’m satisfied. No, I’m not advocating ADT just for scalp hair growth, but that is a “side effect” that many of us welcome!)

    FULL RECOVERY — WHAT IT MEANS TO ME. I had previously stated ““For many of us on intermittent ADT, there are long periods — perhaps permanent after a single cycle of ADT — with full recovery from side effects.” I have been on triple ADT (Lupron, Casodex/bicalutamide, Proscar/finasteride or Avodart) three times since December 1999 intermittently as my sole therapy (plus supporting medication and lifestyle tactics including nutrition, exercise and stress reduction). My first cycle of ADT involved 31 months on an LHRH agonist; the second involved 19 months on the LHRH agonist, and the third was also 19 months. Following cessation of the standard period of Lupron effectiveness (i.e., 3 months after a 3-month shot) as the start of the off-therapy vacation period, I was on ADT vacation for 34 months, 21 months, and currently 26 months (though my PSA has risen to the point that I would have resumed ADT3 were I not preparing for radiation therapy, another story).

    TIME TO RECOVERY. Each time on ADT vacation, while I noticed some recovery shortly after the end of each ADT cycle, it took me about 3 months before recovery was substantial. It took about 6 months before recovery was virtually complete in all areas that I could sense (not counting bone density, for example). At that point, I felt good, as good as I had felt in my 50s in the years prior to my diagnosis, though I did notice some gradual decline after this third cycle ended, likely as not due to age, but I suspect with some contribution from the years of medication. During each ADT vacation, I maintained with Proscar/finasteride, substituting Avodart for the past year (to further lower DHT to <5, which happened). As those of us on finasteride as maintenance are aware, testosterone levels can be quite high. During my first ADT vacation period, for instance, my testosterone reached a high of 1,072 — well above the reference range, before settling at a still high level around the 800s. I enjoyed the benefits of substantial testosterone throughout all but the early months of that ADT vacation. I experienced about the same quality of life during my second ADT vacation, with testosterone averaging in the 600s, with some decline, as I have mentioned, during the third ADT vacation. I'm telling my own story here, but my experience is apparently typical for those of us maintained on triple ADT. A substantial proportion of patients do much better: they are able to totally dispense with ADT (and other therapy) after just one cycle, and the vast majority of them achieve full recovery from side effects, based on what I've heard and studied.

    COUNTERMEASURES: As you noted in your abstract, many men and their spouses are ignorant of countermeasures to help cope with the side effects of ADT. For over a decade now I have closely followed available expert advice on countermeasures, especially while on blockade. As one striking example, I put to the test advice that resistance exercise would enable ADT patients to actually build muscle while on ADT despite a castrate level of testosterone (<20, but actually 21 for me during my second blockade during which my PSA sunk to <0.01). It worked, and my gym logs proved to me that, with effort, sound workouts, and patience, I could actually add modestly to muscle mass and strength, while avoiding weakness, decrease in energy, and fatigue. I'm convinced, based on my own experience and on communicating with other ADT patients, that countermeasures offer a good prospect for at least some if not major relief from all the side effects of ADT, including decrease in bone density, decrease in libido (not dramatic, but noticeable relief), hot flashes/sweats, muscle mass, energy, anemia avoidance/minimization, gynecomastia (apparently much less if any if LHRH agonist plus an antiandrogen are employed instead of just an antiandrogen), decrease in bone density, mood lability, cognitive effects (usually fairly minor if noticeable at all), bone and joint pain, and heart/cholesterol issues, to name some of the main concerns.

    ADT IS NOT "EMASCULATION". I'm convinced it is not helpful to suggest to men that ADT is emasculating. We are still men, shaving every day and maintaining our deep voices. We are still capable of affection with our spouses. With countermeasures, we can still have much of our physical capability, including strength and energy, and we can operate with at least most of our usual mental capacity. Using the word "emasculation" scares some men away from what is often their best shot at effective therapy. Much the same goes for the word "castration." I do agree it is useful to use that word in the proper context, with perspective provided, but "castration" can become a scare word if used without appreciation of the audience. Do you see that too?

  17. I would consider myself to be one of the world experts on ADT (androgen deprivation therapy) having:

    1. Been a student of Huggins at the University of Chicago.
    2. Worked with Labrie starting in 1983 using LHRH agonist + anti-androgen therapy.
    3. Treated well over 2,000 men with ADT of various forms.
    4. Pioneered in the use of IAD (intermittent androgen deprivation).
    5. Published in the peer-reviewed literature.
    6. Been elected into the AUA (American Urological Association) and ASTRO (American Society for Therapeutic Radiology and Oncology) as well as ASCO (American Society of Clinical Oncology).

    With that said, my thoughts are that the term “castration” is not appropriate since it connotes a mechanical (i.e., a surgical) form of therapy. “Testosterone reduction therapy” (TRT) is not a good term since, as pointed out by J Waldenfels, the current approaches and even past approaches to ADT involve more than testosterone reduction. Moreso, TRT is a common acronym for testosterone replacement therapy — the opposite of what we are generally talking about.

    The term “testosterone inactivating pharmaceuticals” (TIP) also misses the boat in not dealing with dihydrotestosterone (DHT), or even the adrenal precursors DHEA and androstenedione, which can be affected by drugs prior to the testosterone stage.

    Moving to terms used to describe types of prostate cancer, there is also room for improvement:

    The term “androgen independent prostate cancer” (AIPC), which is something I used to use, is also not appropriate because virtually all prostate cancer remains sensitive to stimulation by androgens.

    The term castration-resistant prostate cancer (CRPC) is also inappropriate for two reasons. It brings back the word “castration” and also again forgets that virtually all prostate cancer has its growth driven by androgens.

    Overall, until someone comes up with a better term than ADT (androgen deprivation therapy), I believe this is the best of the current terms.

    Some comments on other issues mentioned in the preceding comments.

    Testosterone recovery in those men on ADT usually occurs if the duration of continuous ADT does not exceed 2 years and if the man is < 72 years of age. The majority of men do recover testosterone production by about 6 months but the definition of "recovery" is on the weak side, being 150 ng/dl or more. In reality the recovery should include total, free, and bioavailable testosterone levels. No one to my knowledge has written about that.

    For men with prostate cancer, < 2%, if that, are concerned about sperm counts. They are more concerned about testosterone levels in the context of resolving the many issues of health covered by the term “androgen deprivation syndrome” (ADS) — a term I coined many years ago after seeing cognitive dysfunction, anemia of androgen deprivation (AAD), bone loss, muscle loss, etc.

    The approach to IAD varies with the MDs take on what should be done. That is a topic for another discussion.

    In general, neither finasteride (Proscar) nor dutasteride (Avodart) elevates testosterone levels very much. In those on IAD, it is the rebound effect that occurs once testosterone recovery occurs that can cause the initial "return to puberty" spike. Those men often have nipple sensitivity and not uncommonly gynecomastia due to high levels of testosterone → estrogen via up-regulation of aromatase enzymes. An aromatase inhibitor like Arimidex or Aromasin can be used to resolve such problems.

    The entire issue of ADS and the methods used to resolve it were presented (by me) at a prostate cancer conference at the University of Washington as far back as 1997 — 15 years ago (“New Dimensions in the Diagnosis, Evaluation & Treatment of Prostate Cancer,” September 6-7, 1997,
    University of Washington). Since that time, billion dollar industries have evolved dealing with key issues such as bone loss, but not a lot has been done insofar as many of the other side effects of ADT that can be dramatically reduced or eliminated.

    Reading the post by Waldenfels, it is reassuring that a lot of the efforts made in talks, medical publications, and forums has been time well spent. I just wish more of my colleagues would at least listen with an open mind and "try it". There is nothing like being in the trenches of patient care for 30 years.

    Stephen B. Strum, MD, FACP 
    Board Certified: Internal Medicine, Medical Oncology
    Member: ASCO since 1973, FACP since 1979, AUA since 1998, ASTRO since 2002
    Member: International Strategic Cancer Alliance (ISCA) since 2010

    PS: just left AUA and ASTRO with my retirement in January. They should reduce the annual dues for retirees.

  18. Jim,

    I trust you are aware that I not only study the psychology of androgen deprivation, but that I am a prostate cancer patient myself and have been on various forms of ADT for more than a dozen years. As such, I agree with all that you say about countermeasures. Where we still disagree is about the language around prostate cancer treatments.

    Your statement in the last paragraph, where you equate emasculation with losing one’s deep voices, suggest that your understanding of the impact of androgen deprivation on post-pubescent males does not match with the biological reality. I think you should read my relevant papers on the language before you dig your heels in on to the topic. Please e-mail me privately and I’ll send you the papers.

    I’d be happy to also send you some peer-reviewer medical references which challenge your belief in a full recovery of all functions after, say, 30 months on LHRH agonists. That said, you may be exceptional. But you don’t present objective data (e.g., on sertoli cells, bone density, cognitive function, etc.) to support your point. However, I notice that you now put the expression “full recovery” into quotes. Am I to interpret the quotes to mean that your recovery during an off period subjectively feels like full recovery, although you acknowledge that it is not based on objective measures of recovery?

    Richard W.

  19. Dr. Strum and I are on the same page. In the full paper that inspired this growing thread, my co-authors and I explicitly arrive at the same conclusion he does when he states,”Overall, until someone comes up with a better term than ADT (androgen deprivation therapy) I believe this is the best of the current terms.”

    It should be clear that our paper explores rather than endorsed the terminology and understanding that people have for expressions like “chemical castration” and “hormonal therapy”. In the end we acknowledge exactly that issues that are expressed in this long thread. Like Dr. Strum my co-authors and I similarly encourage calling ADT just that.

    If others have strong opinions on the topic that they want to relay to me, they can contact me individually. I am more comfortable corresponding with individuals individually, and with the public publicly through peer-reviewed literature rather than in blog commentaries.

    Richard W.

  20. Dr. Wassersug and others interested in ADT and masculinization,

    I am replying to your response to me of August 24, 2012 at 6:48 pm. Thanks again for your participation in this discussion. I hope I can find time to look at your papers, especially regarding estrogen as I may soon be relying on that to protect bone density during another round of ADT in preparation for radiation. However, regarding your reservations about ADT, my strong impression is that a large proportion of patients on well-done ADT with support and countermeasures will have a much better quality of life than you (and many others in the field) may be visualizing. I am glad that Dr. Strum has weighed in with his special and long experience, much of it with intermittent triple ADT. Some of what follows is personal, and of course, anecdotal, but it does document what is possible, and I believe my experience is fairly typical of what an empowered patient can achieve with well done intermittent blockade.

    APPRECIATION OF ASPECTS OF ANDROGEN DEPRIVATION “SYNDROME.” You were concerned that my mentioning maintaining “a deep voice”, etc., reflected under-appreciation of the significant impact of ADT on masculinization. Actually, it is the first time in 12 years I have referred to maintaining a deep voice, and perhaps to shaving too, but I just intended those references as proxies for all the significant indicators connected with testosterone in men. I too fully agree that sharply reducing testosterone puts many important functions at risk of substantial decline, and I intended to indicate that by the mention of different side effects in the “Countermeasures” paragraph below. Those are the same side effects for which I experienced “full recovery,” at least to the extent that I was well satisfied.

    MY SUCCESS IS PROBABLY NOT EXCEPIONAL. I doubt that my success is so exceptional for those who are serious about well-done ADT, support, and countermeasures. While I know I have done better in handling and recovering from side effects than some fellow patients who have been on ADT, I am aware from their informal comments in the survivor community, as well as some formally and informally published medical evidence, that I have not done as well as others. My familiarity is mostly with those on intermittent or one-time triple ADT (at least initially as sole treatment) that is maintained with finasteride or Avodart and supported with other drugs — such as estrogen or a bisphosphonate (or denosumab), at least during the ADT phase for bone density.

    OBJECTIVE EVIDENCE. You asked about the objective evidence behind my comments. My case is well characterized, as I have had PSA tests about every 3 months, typically along with a Complete Blood Count and Comprehensive Metabolic Panel, plus periodic lipids, testosterone, DHT, 25-hydroxy vitamin D, occasional special markers, DEXA scans, and special scans. I have also maintained a personal log including weight, physical activity, etc., for more than a dozen years.

    SPECIFIC PERSONAL RESULTS.

    Muscle mass. My upper body muscle mass decreased during the first round (31 months), when I was not aware of the need for regular resistance exercise. Lower body muscle mass was and has always been fine due to regular aerobic exercise. (For example, I can easily racewalk a mile in 13 minutes — 4.6 m.p.h., deliberately not going faster in order to sleep well at night; I’m gradually increasing speed.) I recovered upper body mass during the first off-therapy period. During the second ADT period of 19 months, my gym records reflect substantial gains in strength (over the somewhat depressed level) when I added resistance work (to a previous aerobic program) about midway through the cycle. During my third ADT cycle, my upper body strength actually continued to increase, though slowly and with a lot of work required, from the level achieved during the previous off-therapy period during which testosterone was ample. I understand from experts that many of us are likely capable of that.

    Bone density. At osteopenia level per first DEXA scan in 2000, 9 months after starting ADT, with at least one vertebra in osteoporosis range through the first cycle of ADT. By the last DEXA in March 2010, no results were in the osteoporosis range and my average density was normal. However, recent other scans have indicated some osteoarthritis and arteriol calcification, which suggests the DEXA result may be overestimating bone density. I plan to have a quantitative CT scan to check this.

    Hot flashes and sweats. I experience both and have logged them during my third cycle through the point of disappearance. For me, though minimal during the third cycle, they totally disappeared by the sixth month for all three cycles. (I throw empty socks from the head of my bed to the floor at night each time I wake due to a flash or sweat so I can keep track. Guess I’m a scientist at heart.)

    Libido/EF. Memory is quite clear as a source of data about this. I am in the vast majority who experience very substantial declines while on ADT, though countermeasures help. I am delighted to have experienced what seemed to be virtualy full recovery during my first two cycles. This included phsyical recovery. Recovery of libido and EF during the third cycle was significiantly lower. While I suspect the cumulative time on ADT played a role this last time, as well as the switch to Avodart and use of low-dose Thalomid again to extend my off-therapy period, isn’t it reasonable that age also played a role?

    Metabolic syndrome/other health. This has not been a problem for me, based on a multitude of tests, though I have gained substantial weight on each cycle. I am now in the ideal weight range, though I am working off some remaining abdominal weight. I am clearly not diabetic. My lipids are excellent (July 2009 is typical for ADT cycle: cholesterol 198, HDL 87, ratio 2.3, trigs 49. My blood pressure is around 120/70 or lower at age 69, and my pulse is typically in the 50s to 60s. I am energetic and physically strong.

    Anemia. Not for me, based on many tests.

    Gynecomastia. Slight to moderate, confirmed by scan, very likely a consequence of ADT.

    Cognitive effects. I believe I experienced some impact during periods on the LHRH agonist (which I would class as minor), but I was able to do well in a mentally challenging job (substantial research, qualitative and quantitative analysis, creativity, interpersonal relationships, negotiating, mentoring, speaking, etc.) during my first cycle of blockade, prior to retirement. I have been successfully involved in a lot of mental activity since retirement. However, I’m convinced there is a wide range of impact across patients, though the studies I’ve seen have not documented substantial average impact.

    Joint/bone pain. I typically experience what I would term soreness, rather than pain, during the beginning portions of each cycle on blockade.

    Mood lability, emotionality. I did not experience this.

    Moderation of aggressiveness. While I, like most of us I think, strive to be a gentleman who is in control of his aggressiveness, I have been an interested observer of the impact of decreased testosterone on my own aggressiveness when on ADT. In fact, I take care when coming off blockade that I do not drive aggressively; that takes some conscious effort and continuing adjustment to increasing testosterone, as I can sense an urge to be an overly assertive driver, such as in pulling out with less than ideal margin and being less tolerant of others’ mistakes — subtle stuff. When on blockade, I am aware of being more patient and understanding. However, that more mellow mood did not stop me from assertively initiating/pursuing a successful campaign for a change that potentially saved hundreds of thousands of dollars against entrenched opposition from three levels of upper management during my first cycle of ADT. It is very important that potential ADT patients understand that they have a good chance of keeping the personal characteristics and advantages that have enabled them to enjoy success on the job. In some ways, that increase in patience and understanding during ADT should be regarded as an additional important relationship asset. Wives often appreciate that.

    Dr. Wassersug, if you have kept with me through this, please know that I appreciate your work that looks at the downsides of ADT. I hope my account may illuminate the success that some of us are able to achieve on ADT despite the downside risks.

  21. OK folks … I think this is turning into a series of personal conversations at this point rather than having anything to do with the original topic, so I am shutting down further comment on this particular thread. I would suggest that those who wish to keep talking do so by direct e-mail. I am more than willing to facilitate e-mail communication if individuals wish to keep talking. I know all of your e-mail addresses and I can be reached at mike @ pcainternational.org

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