Something I don't understand (RE: declining HT)

OK, HT sounds pretty bad. I read the list of side effects and want to cry. In fact, we know every medication has a long list of side effects. In many cases, the user doesn't get any such effects. But HT is different. We are pretty much guaranteed a wide assortment of side effects at varying intensities. So, I admit this treatment could be quite miserable. I guess at best it isn't too bad.

But I know some folks have written about forever foregoing HT. I know Sonny has talked about it as have many others. But here's what I don't understand. If you decide no HT, won't the PC get you for sure? It would seem to me succombing to PC is a miserable way to go. The HT side effects would be preferable.

What am I missing?

Mel

Mel,
I know a few men that have been on HT for well over 10 years and are leading very normal lives. They have no libido, but that's the worst side affect, I don't see any difference in not wanting sex and not being able to have any except in the first one you don't miss it. A good oncologist can use meds to reduce or eliminate the other side affects. During off periods the libido returns in most cases and the patient is normal in all respects. I would not look forward to HT, but neither do I dread it. You can have errections with Viagra but most just don't care. If begun early enough it will buy a patient an extra 10 to 15 years of decent quality life. Not bad considering the alternative.
JT

I agree with John T and Dave. Other than libido the side effects of HT can be controlled. In my experience the things that are most important to look out for are anemia and bone density loss. I had problems with both but now have them under control. Lack of energy can be a problem if you allow it to be, but it can be countered with aerobic and strength training, and you will be more fit as a result. I go the gym two or three times a week, and cycle for 10-15 miles three or four times a week and feel pretty good. As for ED, I have been on HT for over a year and can get an erection, but most of the time just don't have any interest in doing so, and frankly I would rather be defined by my writings and art work than a hard penis. With Gleason 9 I have to accept that there is a good chance that I will be on HT off and on for the rest of my life, but I don't intend to allow that to stop me from being who I am.

San Carlos

Mel,

I am coming off of a two year stint on Lupron. Last shot was in January and most of the side effects have diminished. As noted by others there is no interest in sex and since I do not, apparently, have the capability either it is just not that important. I look at how much of my day was spent actually having sex vs. thinking about sex. I believe we think about it more than we do it.  There is a whole lot more going on in my life than sex. By the way, I do not feel that I have been emascualted in any way. Still just as full of macho BS as the next guy.

To me the decision comes down to live a bit longer without the disease or let go or, worse yet, suffer the quality of life issues that advanced PCa creates. The HT has not hindered my life in any fashion other than the sex and chances are good that the radiation put an end to that anyway. I would classify the SE's as a nuisance more than a hinderance. Your last two observations in the second paragraph sum it up pretty well.

Don

I dont get this, some time I get a readout of my stats, some time I dont. If it aint broke, why did we fix It and break it. Things like that are more frustrating than the PCA

Logoslidat, us Gleason 9 guys have a different schedule when it comes to our meeting with The Grim Reaper..Our best chance is success with primary treatment..

If you do a quick reply, your history will be included. If you click the "post reply" button, you get to include it or not, along with other formatting choices..

Fairwind, I'm not sure your comment that PC will get you either way is accurate. Not saying it won't get us, but it is not an absolute.

The Grim Reaper as you put it, is an absolute, that is for sure.

I forgot to mention bone loss and osteoporosis. While on HT I was also on Fosamax to help reduce this SE. For some a really nasty side effect is caused by the drugs to prevent bone loss ~ Necrosis of the Jaw. For patients on sodium alendronate for more than 5 years this side effect can cause exposure of the dead jaw bone and such. Zometa will accelerate this process as well.

Anyone on HT for more than 5 years will undoubtedly experience level one or two osteoporosis without medications to prevent it.

Libido is not important when you consider these things combined. A good oncologist will tell you that libido is the least of your worries.

Compiler...Mel...it is still a good therapy. You just have to prepare yourself for it and you can manage it. I have been there and I am doing great right now. I will do it again if my cancer returns. But I have real expectations...

Tony

Post Edited (TC-LasVegas) : 9/17/2010 11:14:30 PM (GMT-6)

I didn't think so. But it is possible that fatigue which I also forgot to mention helped. It is well known that we lose muscle mass, too. Once the body loses testosterone our bodies start to behave like women's metabolisms. This I believe means if we maintain our dietary appetite we are predestined to gain weight.

Tony

BB_Fan I usually agree with things you mention(and I am a Fan) but on the 25-30 years thing after failing RP or SRT or whatever leads to a failure thus BCR (recurrence). I seriously doubt you will find patients living that long, do you have examples at yananow, abstracts, known cases? I don't remember seeing evidence like that and other sources are saying much shorter duration....however this varies alot depending upon the severity of the cancer and its factors (type of PCa, ploidy, volume, gleason grades etc.).

The only case I know of with described known mets and longevity is Dr. Fred Lee at year 25 and counting, treated 27 yrs. ago. Another case we may know of on the net is a man at year 17 in fighting his PCa that has been a long term fight, he is in serious danger at this moment, also he has done mulitple protocols and way beyond what some other patients would have tried in fighting this. He deserves our salute as a providing information/discussion to make a road map for others and is one of the ultimate warriors in PCa, if we had a Hall of Fame he and a few other significant pioneers of the last decade come to my mind, some of them I have talked with. Sounds strange but if you get into this section of the brotherhood....we have our survivor's like almost living legendary types and they are growing in numbers and in sharing the wisdom and findings, also pointing out the flaws and options some can consider to continue their fight. Sometimes more valuable to a patient than a docs opinion (go figure). Collective findings from numbers of hrpca, actually has some valuable lessons to be gleaned and shared.

Here is Dr. Walsh's findings generalities on known Mets patients and hormone therapies (how long? page 371 in his book)
Varies from man to man but like a bell curve:
10% of men w/bone mets lived less than 6 months (this is badland to the max.)
10% live longer than 10 years. (this is the good side of bad news)
80% fall in the middle and of those 50% live 3 years or less and 25% are alive after 5 years!

You can look at abstracts like Bolla studies and all kinds of them, they use patients in differing categories....the durations are interesting to read and compare. Might give you an incite as to how many lived 3-5-8 yrs. out and such. I hope your thoughts are correct.

One other quick opinion, I don't understand how the guys who are so adamantly against HT can be so without at least trying it first so they have an informed opinion on the topic.  HT will affect everybody a little differently but it  can be stopped at any time so I would think you would give it a shot and if the side effects are so terrible that you couldn't take it anymore you could just say stop.  There would be a period of time for the HT to get out of your body but you would know it was comming to an end soon.

None of your body parts is going to fall off in the meantime.

My guess is that most of the guys who claim to not be willing to try it will change their minds when push comes to shove.

David

Zufus, my post was unclear. The point that I was trying to make is that the situation is very different for someone in the 40 to early 60 year group with a high grade PCa. If they are not cured by RP or RT they are at a high risk of dying of PCa and need consider HT sooner rather than later. If combining HT will SRT has a chance for bringing one into long term remission, you have to go for it. Using HT as a delaying tactic only when necessary probably won't allow you to outlive your PCa.

From the other David to the other David:

I understand the personal choice deal but it sounds like most guys biggest objection is to the side effects but if you don't at least try it you won't know what the side effects are that are specific to you.  The point I guess that I struggle with for the guys who simply refuse to consider it is that they can stop at any time if it becomes to tough. 

David