I miss my testosterone, but it was killing me

Since I participated in the Lupron hatefest (which I honestly enjoyed ) I thought I'd post a little more about my experience with ADT and also encourage those who are facing this treatment and may be really anxious or afraid of it like I was.

I was considering calling this thread "I love Lupron" but NO WAY! That's not true really. Love is much too strong of a word. So instead, I just thought about how I really miss my testosterone. We all know what testosterone does for men so I don't need to go into the details. But once I found out that it was killing me, my attitude changed a lot. Fortunately, I had the kind of prostate cancer which most people have, the kind that's "hormone sensitive" meaning it depends a great deal on this androgen to survive. If it's the kind that isn't hormone sensitive, your treatment options become significantly reduced. In that case, it becomes much less treatable like a lot of other cancers. So those of us with hormone sensitive prostate cancer are lucky we have this kind of cancer. I know, it's hard to feel lucky when you have cancer. I had to roll my eyes when my oncologist told me "You have the best kind of cancer you can have!" Wow! I was thrilled! Thank you!

But the truth is, my oncologist was right. When I first went into her office, I hadn't started treatment yet and was in a lot of pain, barely able to walk. I remember how devastated I was.

Just days before I had sat down with my primary care doctor who gave me the "bad news". I had never seen a bone scan, but I knew right away that mine was really bad. My entire skeleton was lit up like a christmas tree. I knew my cancer was really advanced and I probably wasn't going to live much longer. My primary care doctor didn't know what to say other than "It's going to be hard but we'll get through it. blah, blah blah". I was completely devastated.

So when I got see my oncologist, I figured I'd be told even more bad news. I was really shocked when she told me that despite my grim prognosis and PSA of 400, I had a very high probability of a good recovery and a lot of my bone metastases would actually heal. The reason: I could start on ADT Lupron right away. The likelihood was that my response would be fast. As a lot of us already know, ADT therapy is the foundation of treatment for hormone sensitive metastatic prostate cancer, accounting for a large amount of the overall survival time for those of us unfortunate enough to advanced PCa. It's really the only reason we can talk in terms of years and not months of additional life expectancy.

So while I can't say I love Lupron, I am so grateful that it is available. And yes I miss the testosterone, I miss being interested in sex. But then, unless you're Ted Bundy, dead people don't make good sex partners.

Thanks.

It's great that your husband has no symptoms. Do everything you can to keep it that way for as long as possible.

Right now, I don't have any symptoms either and I can't even explain how grateful I am. I always compare my side effects to the cancer and so far nothing is even close to being as bad as the cancer.

Before Lupron there was castration which acted just as fast, is more effective and much cheaper than Lupron. The only benefit Lupron offers is that it can be used as a temporary adjunct to make other curative treatments more effective..After two or three years on Lupron, the effect of the drug starts to become permanent, especially in men over 60..Even today, in many countries, Lupron is just too expensive to treat metastasized prostate cancer so the primary treatment becomes physical castration..In the States, anymore, the only time an
orchiectomy is performed is when a PC patient fails to respond to the Lupron treatment....

Thanks Starfinder for pointing out the obvious in this thread and the Lupron hatefest (which is a very good thread). Ironically, sometimes we need to be hit over the head with the obvious. It is easy to lose the big picture while worrying about the details, even though the side effects of ADT are some pretty dammed big details. I had even considered the option of forgoing ADT and letting the cancer run it's course, but it didn't get much traction for me. I'm sure there have been people who have refused/stopped ADT, but I suspect that it doesn't happen often, though I have no data to back up that statement. Assuming that few people stop ADT treatment, that in itself is strong evidence that the treatment is worth the side effects. Starfinder's observations have been very helpful for me.

Nevertheless, major concerns remain as I move closer to spending the rest of my life on ADT. Those concerns are greater than the concerns I experienced prior to surgery, radiation, and the diagnosis of cancer itself. A lot of this concern has to do with my lifelong struggle with a mental health issue that has its own brand of fatigue and brain fog. I feel like like the ADT may amplify the symptoms I already have. I do have an alternative scenario I prefer to entertain. My hope is that I am already accustomed to feeling crappy, so maybe the side effects of ADT will be nothing out of the ordinary. In any case, I suspect I will carry on as best I can, like we all do.