Are Canadian patients told enough about side effects of LHRH agonist therapy?

According to a survey of 75 Canadian physicians, there is a degree of disagreement among these physicians about what they should tell their patients about the side effects known to be associated with the use of LHRH agonists as a form of androgen deprivation therapy (ADT).

Tran et al. surveyed a group of physicians that included urologists, radiation oncologists, and medical oncologists practicing at cancer centers and urology centers in British Columbia, Alberta, Ontario, and the Canadian Maritime Provinces.

Seventy-five (75) physicians actually completed the survey (but the paper’s abstract does not tell us how many physicians were invited to participate). They agreed that it was “essential or important” to warn patients about the possibility of

  • Osteoporosis
  • Erectile dysfunction
  • Hot flashes
  • Loss of libido
  • Loss of muscle mass

Less than 60 percent of the physicians agreed on the relevance of informing patients about the risks for

  • Depression
  • Diabetes
  • Elevated cholesterol levels
  • Anemia
  • Delayed or absent orgasm
  • Genital shrinkage

even though these are all regularly reported as side effects of LHRH agonist therapy.

Interestingly, the effects of ADT on mental acuity (e.g., the inability to multi-task or remember things with accuracy) was not mentioned in the abstract of this paper — although this is a side effect of ADT that is also commonly mentioned by patients (particularly those patients who are on long-term ADT).

20 Responses

  1. I’m wondering what choices patients do have if they do not do LHRH agonist therapy. What are their choices?

  2. Dear Jim:

    They can try antiandrogen monotherapy; they can try estrogen patch therapy; and they can use an LHRH antagonist (degarelix). They can also just not use anything until the onset of symptoms (although few people would actively recommend this, but it may be a good option for older men with a limited life expectancy).

  3. I was not told about the osteoporosis risk at all, but discovered it through conversations with specialists in another country. I acted quickly enough to stabilise its development in me, at least for now. I then managed to make sure that all men slated for ADT with an LHRH should be warned about the risk at the very start of treatment, so that they can take larger quantities of calcium and vitamin D. I learned some things about Swedish medical norms that I cannot report here. Suffice it to say that they were not kosher and that I set these right. Had I not done this, by violating some rules, I might not have known that I had osteoporosis until treatment was completed and I later got a fracture. If that happened, I might never have connected the fracture with the LHRH treatment of 3 years. I might well be the first patient who did all this. How many were unnecessarily disadvantaged?

  4. I think this study illustrates that the doctors who treat prostate cancer with androgen deprivation often do indeed take too lightly their duty to inform patients of potential side effects. I am not sure about the long-term consequences of my decision to abbreviate my course of ADT from 2 years to 1 year because of side effects which I found intolerable. However, I remember well the resentment I had toward the radiation oncologist who started that treatment because he acted as if an injection of an LHRH agonist was the equivalent of a “flu shot.”

  5. As the Sitemaster knows, this is a pet issue of mine.

    Doctors in the US do a lousy job of informing men about the side effects of hormone therapy. At UCSF, the chiefs of urology and radiation oncology both acknowledged this when I raised the issue, and encouraged us to write an educational piece. We generated a pamphlet that has been well received, and which I have recommended to many men beyond UCSF; it can be found if you click here.

    The pamphlet is currently being revised to include the newer medications, as well as a section on pain management, so check back in a couple of months for the revised edition.

    If you like what you read, please recommend it to other men who are on or considering androgen deprivation therapy (ADT, also known as “hormone” therapy); and, recommend it to your physicians so they can readily advise and provide it to their patients.

    UCSF is also about to start a weekly ADT clinic to help men cope with the side effects — another improvement for which I have been campaigning for some time. It particularly saddens me to see the study’s finding that less than 60% of the doctors find depression relevant. For many men wrestling with prostate cancer, the lack of testosterone exacerbates depression by impacting brain chemistry; men find themselves wrestling with “the black dog” for the first time in their lives and unable to identify what it is.

    Mike – I also want to thank and commend you for raising the issue of “lupron brain” – I too noticed the glaring omission. I would also point out to @elucidated1 that Degarelix has all the same side effects as other LHRH drugs save the initial flare in testosterone before it recedes. All the HT drugs have some degree of the side effects mentioned in the study as well as several more – read the UCSF pamphlet to learn more and find what you can do to mitigate them.

  6. I think the Canadians are to be commended for this (unscientific?) study, since it has opened up the confessional!!!

    My experience in UK is that my medics have told me about most of the side effects, bar the leupro-brain (“Lupron brain”) which I recognize applies to me since I was switched from one brand of LHRH to a different brand in August. In your word it causes me to be “ignorant” because I attached a comment to the wrong thread a few weeks back!

    I have a G(reat) SOH, though. I think.

    I will certainly try to look at Rick D’s link.

  7. The doctors need to tell their wives too. There are so many depressed wives of men on chemical castration. These couples need help!

  8. Rick, that was an outstanding post. And not only do doctors do a “lousy job of informing men about side effects of hormone therapy,” the same thing can be said for RALP, radiation, all of it. It happened to me. They seem to want patients to read up on everything themselves while avoiding any professional dignity/accountability. But some patients have no choice with hormone therapy when it comes to the perception of saving their life.

    Your point about the lack of addressing depression truly is the elephant in the room in the prostate cancer discussion and is one reason so many males keep in the shadows when it comes to telling anyone about their prostate cancer or treatment. The support for males is non-existent compared to women and breast cancer. Emotion seems to drive irrational decision making in the world of prostate cancer.

    Before I had HIFU, I interviewed dozens of patients and, in the first week of my research, I met a post-radiation patient who — in the first 5 minutes of our conversation — began crying on the phone. He felt he had no clue as to the gravity of his treatment until it was too late. That one conversation angered me. How could this have happened to this man? How many other prostate cancer patients are not well informed by their physician or are not capable of understanding the gravity of their choices? A lot.

    I am currently researching “emotion” in the world of prostate cancer and will have a post on my blog, soon. It is truly the elephant in the room.

  9. Thank you Clara W. We men need the support of our wives (or, to be politically correct, our partners) during this time, and having a wife in the room when decisions about treatment are made is a great way to give the urologist or oncologist a better perspective. It amazed me how motivated my urologist was after my second conference with him — when my wife was there. Our cancer touches everyone in our lives, wives more than any one else.

  10. In the UK we have a charity, Macmillan Cancer Support, which — among other things — publishes pamphlets with information like that linked to by Rick D, but I feel he has opened up quite a can o’ worms across the pond.

    Another contributor (MHHJ) refers to curtailing his therapy. The phrase “Primo, non nocere” seems very much in the back of the medical mind, faced with any cancer patient.

    By the way, what is Prostap (R) called in America? Even its own Patient Notes (a bit of guff included in the box of medicine, you probably have to be pretty assertive to get it from the expert who opens the box!) mention “mood swings”. Talk about a euphemism.

    (I’ve just redacted a long paragraph on the comparative merits of T4 prostate cancer vs cardiovascular accident as exit strategies.)

  11. Prostap or Prostap SR is just another branded form of the LHRH agonist leuprorelin or leuprolide acetate (available in the USA as Lupron and as Eligard). Prostap is not marketed in the USA (presumably because the European manufacturer has never submitted the product for approval by the U.S. Food and Drug Administration).

  12. Dear Sitemaster:

    I found out today that my text above was wrong. I spoke with an oncologist at the hospital, who told me what I did not know: that only those men with “risk factors” (e.g., smoking too much) get a bone mineral test for osteoporosis. My reply that one must get a test to be sure that one critical risk factor does not exist, namely a baseline bone mineral density that is confirmed osteoporosis or osteopenia, fell on deaf ears. This implies that some men are still being uninformed and that some men are probably not given a test that would surely reveal that risk factor if present. I did correct a medically wrong policy, but only by half.

  13. @George Berger –

    I was treated at both UCSF and Kaiser Permanente (HMO). In both places it is supposedly standard protocol to test for baseline bone density when placing a man on ADT for 12 months or longer. In my case that was very fortunate, since I turned out to be borderline osteoporitic before even starting on Lupron — you could have bowled me over with a feather when I found out, since I have always been an active endurance athlete.

    I changed my exercise habits, started supplementing with vitamin D (no calcium as my blood serum was already hypercalcemic), and also received three annual infusions of Zometa (zoledronic acid — a concentrated bisphosphonate). Over the past 6 years, and despite 27+ months of Lupron, my spine T-score has improved from -2.3 to -1.0!

  14. @Rick D. Yes, you are right. As you saw, this is what the Swedish oncologist should have done. Good for you that you got the right procedure. I know who instituted this shabby process here, and have taken the proper actions. Some other doctors here know I am right. The doctor’s name is now on the public record, and that’s good enough for me. The other doctors are not objecting.

  15. @Rick. About 1.5 weeks ago the osteoporosis issue was solved, to my full satisfaction. I submitted a formal complaint in which I explained how a new risk factor — the tendency to get osteoporosis right at start of ADT — arises. Not the illness itself, but a new increase in the risk of getting it. I cited the Canadian study reported here. My proposal was brought up at a staff meeting, after one important person described it as “obvious.” If all goes well, further discussions will be used to work out details of clinical procedure.

  16. Thanks for the update George – let us know what changes in clinical protocol are implemented. If nothing else, a man should obtain a baseline bone scan if considering hormone therapy for longer than 9 months.

  17. @Rick. The proposal here is that all men to be put on ADT for more than 6 months will get a baseline measurement. I think that will be accepted. Stay tuned.

  18. @Rick. Yesterday I got an official notice from the national insurance office that judges complaints. I was told that preventive treatment with calcium and vitamin D had been “delayed” (fördröjd, in Swedish) in my case. That is a diplomatic way of saying I was right. The next step is for this office to determine the amount of financial compensation I am entitled to. Fine, but as far as I am concerned the matter is closed. This gives official support to the change of policy that some doctors want.

  19. Congrats on your advocacy George — feels good, I suspect.

  20. Yes, it does. Thanks.

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