Please please please think carefully before doing ADT

[PrettyUnhappyGuy]

I was just told by two different doctors that, due to an issue with my testicles and how they've reacted to ADT, there is a good chance (25-50%) I will NEVER recover testosterone after ADT . This was in NO WAY communicated to me before I agreed to have this treatment in addition to radiation. I specifically asked the side effects and was told "hot flashes and tiredness." Had I known that this was a possibility, I would have declined ADT.

My soul literally feels crushed right now. I expected to be able to recover some semblance of sexuality, not to mention the cardiac damage, insulin risks, bone damage, crippling depression, insomnia, etc. How do MAJOR cancer centers get away with not informing patients of this information.

I was starting to see a light at the end of the tunnel but now I just want to jump in front of a subway train (don't worry, I'll wait until December 31 and see if any T returns or not).

If your doctor suggests ADT for you and you're not metastatic, PLEASE think long and hard before agreeing to it.

[JetBoy]

I am so, so sorry to hear this. It's terrible when you realize something has happened to you and you never received warning. I agree with you that the medical community should be required to review an entire list of all likely negative outcomes and the co-morbidities that can cause even more physical harm.

Before you get too down in the dumps, I would recommend you talk to another oncologist who specializes in ADT and see if there is an alternate assessment. For some reason I find that oncologists often vary widely in their opinions and what they focus on. So it might be worth seeking additional, medically informed insights.

I also want to really support you as you attempt to balance the quality vs. quantity of life equation. How you value the quality of your life over longevity is entirely your choice to make and it may be the most important consideration.

Sending love and support your way. It sounds like you're experiencing grief and anger - both are entirely valid. Please take good care of yourself.

[PrettyUnhappyGuy in reply to JetBoy]

Thank you! I will get another opinion but am still very angry and depressed that they start these treatments on men without telling us what might happen. From the research I've seen, 25% of men on short term ADT *without* the complications I've had don't recover. That's a big deal and it's borderline criminal that it isn't mentioned. It's not even mentioned on the web sites pushing the drugs--just a bunch of happy guys living their oh-so-great lives. Even for guys whose T comes back they don't tell them it could take 18 months or more.

[EdinBmore]

You've got good reason to be "unhappy." I think "rage" might be a better word. For whatever it's worth - and you can search and find numerous descriptions here of the SEs of ADT - my docs did not describe how I might react to ADT. And, my reading about it was nothing compared to my experience. I had many, many SEs which were devastating to me; apparently, low T for me is disastrous. Wt. gain, manboobs, joint pain, major depression and an emotional roller coaster, hot flashes, bone crushing fatigue, and so on. My docs seemed to "poo-poo" the severity of my symptoms; basically, it'll pass and you'll get over it. But, in the meantime...And, I do not think docs are taught anything about how gay men are different than straight men. Perhaps, it's their own "issues" with sexual orientation...who knows?

Yes, get second opinions! Consider counseling - individual and group - with someone who knows about sexuality and being gay.

I had 9 mos of Lupron (3 three mo injections) and I was miserable for over a yr. My T, which was low pre-treatment (250) finally recovered after 18 mos and has actually increased a bit (325ish).

Btw, keep the blood flowing in your penis. Even if your sex drive is less than zero, force yourself to get erections, masturbate, watch porn, use toys - whatever works for you.

Where am I now - 7 yrs later? Wt and boobs remain despite personal trainer. Joint discomfort continues. Sex drive has returned. Woo-hoo! Emotions are more stable. PSA has remained 0.02-0.04. Good news there. Oh, btw, also had IMRT and brachyboost.

Good luck to you.

EdinBaltimore

[Tall_Allen]

The numbers they are telling you are screwy.

93% of patients had full recovery to baseline levels within a year of ending ADT, after using ADT for 9 months. You are only using it for 6 months.

ncbi.nlm.nih.gov/pmc/articl...

[PrettyUnhappyGuy in reply to Tall_Allen]

These numbers are much more reassuring than the ones I found: smsna.org/patients/news/aft...

[Tall_Allen in reply to PrettyUnhappyGuy]

Not that different, although the men in the study you cited (below) were on ADT for about twice as long.. Even so, after 2 years, total T was greater than 300 ng/dl in 3 of 4 men, and better T recovery was found in men who had higher baseline T levels, ADT for 6 months or less, and younger age.

"307 men with a mean age of 65 ± 8 years were included. Mean duration of ADT was 17 ± 25 months, and median follow-up was 31 ± 35 months. Mean TT values were 379 ng/dL at baseline and 321 ng/dL at >24 months. At 24 months after cessation of ADT, 8% of men remained at castrate level, 76% returned to TT >300 ng/dL, and 51% had returned BTB. Lower baseline T levels (TT 6 months were associated with a lower likelihood of recovery to normal TT at 24 months. Age >65 years and receiving ADT for >6 months were significantly associated with a slower T recovery."

academic.oup.com/jsm/articl...

[Palaguy]

I know exactly what you are going through. The oncologist that I had at the time was (shall I say) straight forward, opinionated, and unsympathetic. He told me told me "At my age (58) ADT and radiation therapy are my best options." I was a year in before I realized ADT drugs were in the same class as chemical castration drugs. The depression was overwhelming, and the prescribed anti-depressants made it 10 times worse. The male brain also needs testosterone. I've been on the treatment for 5 years, sex is just a way past memory, but I have a husband of 34 years who has held me through every breakdown.

I have already beaten bone cancer in my spine and I'm thankful for that.

I've been off treatment for 8-months but will probably go back on after the first of the year because the numbers are going up again.

[PrettyUnhappyGuy in reply to Palaguy]

Thanks Palaguy, how long did it take you to realize depression drugs were making it worse. I recently started on them because had a lot of suicidal ideation and was starting to plan my demise so it looks like an accident (insurance for my nieces and nephews won't pay on s*icid*). It's been two weeks so far and I can't feel whether they're doing anything one way or the other--I'm just as miserable as I was before, but not worse (is it possible to get worse?).

I, too, was never told these drugs cause castration and just that I would have some hot flashes and tiredness. Nothing about depression, loss of orgasm, ED, my hair falling out (except on my head), insomnia, crying jags, etc. You are lucky to have an understanding husband!

If I have to continue feeling this way it's zero quality of life and just not worth it to me.

[Palaguy]

I'm sorry you are going through this. Just remember, YOU can stop taking anything that is causing you physical or mental harm, I did and I let my doctors know.

Within a couple of weeks of being on Casodex and Lupron is when my depression began. it took me just a few days to figure out what was wrong and being a man, I thought that together with my husband I could handle it. Wrong! The longer I went the more depressed and angrier I became and I couldn't give anyone a reason. When I tried, no one understood (it's in your head) WELL F***KEN DUH!

I was prescribed Trazadone and for three weeks I was happy as a gay man on a shopping spree! then I crashed, The Trazadone now intensified depression. A song on the radio made me break down, I'd have to park my car because I was crying so bad I couldn't drive. I'd sit on the floor at home in a ball crying and I couldn't tell my husband why.

I never had thoughts of self-harm, but I knew I was losing control. After 4 months on ADT pills and 2 months on the Trazadone, I stopped them both and called my doctor (at home) and told him "Never again".

I will probably be on and off the Lupron the rest of my life or until it is no longer effective.

[PrettyUnhappyGuy in reply to Palaguy]

Wow, sorry to hear that. Yeah, I've had multiple freak outs while on ADT and they're very random. Most times they're just crying jags but a few times they've been angry rants which is REALLY unlike me. I'm almost done and have a testosterone test in early December which will be the "moment of truth." I'm not expecting it to have fully come back, of course, but if there's ZERO movement at all it will be very bad sign. My current level is 0 so if I even get to 30 or 40 I'll take it as a win.