"Collateral" ADT

OK - If I thought it would be difficult to talk about having prostate cancer, this one is even more difficult for me.

As I "hint" in my signature, I was diagnosed as symptomatic hypogonadal some years ago. For the past 3 1/2 years I've been using Testim gel for hormone replacement with very good results. Symptoms are gone, I feel really good. Until my PCa diagnosis, I was sure I was in great health - especially for my age.

But now, I hear from my uro that once PCa is detected, hormone replacement therapy is contra-indicated. So, I imagine that as soon as I make a treatment decision, he will direct me to stop the hormone replacement. I asked him if he would prescribe ADT for a hypothetical patient who had my exact pathology but was not hypogonadal, and he said "I guess not." But he didn't change his stance that my HRT should stop. I know that there are some studies now being done to refute the "common practice" of HRT cessation, but he apparently doesn't accept the findings yet. So, I'm likely to be forced back into my previous status of being symptomatic hypogonadal. I actually fear this more than I fear the diagnosis or treatment of the cancer.

I've searched this site to some degree about SE's of ADT, as I expect that my SE's will likely be similar. I know the ones I experienced in the past - loss of libido (yeah - what's that?), mood swings, hot flashes, night sweats, changes in hair growth (I'm not balding, so no upside here), depression, crying for no reason, loss of cognitive function. . . I was kind of a wreck. Now I feel that I'm being railroaded back down that train wreck path. The fact that makes it worse for me to look ahead at this probability is that it is likely to exist for life, not for just a set time period. It becomes especially murky for me because I am not considering surgery - too many other medical issues for me to feel confident about the outcome. (Sorry for venting, but I'm sure you understand where I'm coming from.)

Anyway, for all of you who have experienced ADT, how did you cope with the SE's? Where did you turn for help? I expect my uro to only be slightly helpful. He spoke about all the wondrous things that can be done for ED, but what if you simply don't GAF about that because your body doesn't know sex exists? (I was there, too.)

I've tried my usual self-talk therapy (learned that many years ago), and I do believe that I can manage to deal with the physical changes, to a degree. I know, again from experience, that I will have many of the body composition effects like weight gain, loss of muscle mass, loss of energy, aches and pains, etc. I understand that my choice there is to either live a potentially shorter lifespan as I feel now, or to live a likely much longer lifespan but feel and look my age. I can make that decision and accept the outcome. I know that I can probably delay the worst of it by spending more time in the gym (almost an hour a day now, though. Time?), but the SE's will come to be.

I'm most concerned about the emotional/cognitive issues that I experienced in the past. I was a nasty SOB much of the time, and I couldn't help myself. I was not the person I am now, and people sensed it. I was making mistakes in my work - and I can't tolerate that.

I'm really sorry to be burdening all of you with this sort of issue. It obviously is related to PCa, but is not likely to be an issue of survival or disease control for me. It is just that I'm at a loss to know where in my care team to seek help, or what sort of help I might find to try to manage my QOL when the articles I've found (here and other sources) only say that the doctor should make "appropriate referrals" for patients experiencing these symptoms. I can't seem to find any guidance as to what can actually be done, and thus far I've only seen and heard "lip service" to the impact these SE's have on patient QOL.

As one of the TV commercials of decades ago noted. . . "A mind is a terrible thing to waste."

I'm Scared.

JNF - I am not sure if I will approach castrate levels just by withholding T, but since my serum T level was below 200 prior to replacement and since I've been on replacement for 3 1/2 years, I really doubt that I will get any higher than that, and quite possibly lower - at least for a good period of time. I actually experienced all of the symptoms I mentioned in my post at the time I started T replacement. I can only believe that they will return - like so many other medical issues, this won't get better with time. At one point I had to stop the T for a couple of days due to another procedure, and mentally it was a "crash and burn" for me.

I guess I'm just having a bit of a pity party/meltdown today. I know I'll get through this, but after experiencing what my body and mind are like with very low T, I greatly fear the return to those days - and even my trusted uro isn't offering anything more than "I'm sorry it is this way for you." When I asked him about using clomid/HCG to try to jump-start my internals, he didn't respond. I hope that only meant that he would wait to discuss even that with whomever I choose to treat my PCa. Maybe he was thinking that they might prescribe ADT, making the T a moot point. I don't expect that, though, just based upon my pathology report. I guess I will just have to wait and have the complete discussion whenever I am told to stop the T. Until then, it is just my mind running away again.

I'm in this for the long haul, but I truly hate not being in control. This is going to be interesting.

After finishing ADT, my testosterone has been bouncing around in the 200 range and it took its sweet time getting there. While I wouldn't mind if it were higher, there's a world of difference between how I feel now and when my T was at castrate level.

As I understand it, from a PC perspective it doesn't make much difference if your T is 100 or 400. Once it's over a certain level, it's "on" and it doesn't make a difference how "on" it is. (As usual, I'll wait for the smarter guys to come here and confirm that with some real data.)

That said, it does seem reasonable that they may want to stop the T supplements during treatment, but I'd be surprised if they went full ADT on you if you weren't high risk. Not a doctor, so I'm just surmising. I do believe there are guys here that have resume T supplements once successfully completing treatments.

Paxton
Having hypogonadism , I was on TRP for 10 years before I was Dx with PCa. But I was and am high risk, so ADT was called for. You are low to mid risk so ADT may not be necessary. I'm no expert but I see no way that your T level can reach castrate level (<50) once you stop HRT which you will need to once Dx with PCa.
If you end up needing ADT see my signature for the meds I'm taking to reduce SEs and mention them to your Urologist. They mitigate hot flashes, bone loss and breast enlargement. In addition, I have found that intensive resistance training 3x per week really helps with strength loss and fatigue. The biggest remaining problem I face is weight gain at the belly. Proper diet addresses that if you stick to it. So ADT does not have to be a nightmare if treated properly.
Good luck!
Bob

ISU and Paxton
The estradiol patch changed twice weekly pretty much eliminates hot flashes and night sweats! No need for fans or cold water!
Bob

Paxton - I read your question to us a few days ago - guess it stuck with me a bit. I wonder if the denial of hormone replacement for PCa patients is based on any more than the knowledge that castration often delays progression. Has low but above castrate level testosterone been shown to improve outcome of primary therapies? Anyone know that?

Best -
Wilderness

I suggest that you consider that ADT is very strong system altering treatment. It carries significant side effects and long term risks. Nobody wants to use it unless it is necessary. It should only be used for initial high risk dx and when initial treatments fail. I am sure the reason that Pax's docs haven't prescribed ADT is that it is unwarranted and based on the initial dx appears to be an example of over-treatment that we all want to avoid.

Regarding the "on-off" aspect of testosterone, ADT, and PCa. Most all PCa requires T as a growth fuel. Remove the T and most PCa will go dormant and some will die. Bring back the T and the dormant cells are likely to awaken and start dividing and mutating and causing trouble. Start another round of ADT to remove the T and the cycle begins again. When some of the cells further mutate and evolve to understand this cycle they learn how to produce their own T and become castrate resistant. This can happen to men who use ADT (chemical castration) and orchiectomy (physical castration).

How much T is needed to fuel the PCa? Generally most believe you have to get T under 50 to be effective in slowing down the {PCa. Many docs like to get under 20. So when a man returns to even less than the acceptable range for T he could be providing a lot of fuel to the PCa. I haven't studied the issue, but assume that very few mature men have castrate levels of T naturally.

Before all treatment began, my T started at about 400. Under ADT2 (Lupron and Casodex), my T level ran less than 10. Significant fatigue, hot flashes, all that good stuff.

The ADT2 treatment stopped in March 2016 after 3 years. Two months later, my T was back up to 132. The next quarterly check is due this week, so we'll see where we are. I'm hoping still undetectable PSA with significantly higher T, but I still have a lot of hot flashes for some reason. PSA has remained undetectable since Aug 2013 at the end of radiation therapy. I won't worry (I tell myself anyway) unless and until the PSA goes back over 2.0. I'm expecting that not to happen!

But I don't think there will ever be T supplement in my future. My body's going to do what it can do to create it naturally, but with a very high risk case I doubt they'll take a chance of adding any T to the situation. Could be like throwing gasoline on smoldering embers... though if the threshold concept is valid I should already be up into a range that could fuel PCa. So much unclear with this crazy disease.

Paxton,

When you started this thread you expected you would find the subject difficult to talk about. As I am reading through it I get the impression that it was difficult for you, but not in the way you probably expected. Complaining about the effects of low testosterone -- physical, sexual, cognitive, emotional -- and our fears at having our testosterone taken away, is oddly easy here. That's one of the nearly-unique advantages of this venue -- it gives us a place to complain about stuff we simply can't talk about anywhere else. So that's the part I'll bet you found easier than expected. The harder-than-expected part has been getting the other guys to understand what you mean by "collateral ADT".

I get it. By withholding your T supplement your doctors will be allowing you to experience the side effects of a treatment (androgen deprivation) that would not be justified if they proposed to employ it to treat your low-intermediate risk cancer, and like I said, I get it... but there is one slight flaw that has entered your thinking.

When you said...
... "I guess I 'just' have to convince myself that an altered life is better than none at all." ...

... you seemed to be assuming that you would be getting the cancer-fighting goodness of ADT with your "collateral" version. But you're not. At least, if the emerging "Saturation Theory" of the relationship between PCa and T is right, you're not. In order to be effective in suppressing castrate-sensitive prostate cancer you need to drive T levels below 50 ng/dl (ideally below 20) and, while it is possible, I suppose, it doesn't seem likely that your unsupplemented T values will finally level out that low. So you can expect the side effects with, arguably, no disease-control benefit at all.

If we break T levels into three ranges -- castrate, hypogonadial, and normal -- it looks like this:

castrate: Cancer cells and patient are suppressed and miserable. (advantage: disease control)
hypogonadial: Patient still miserable but cancer cells can grow normally. (advantage: none)
normal: Cancer cells grow normally (no faster than hypo) but patient feels better. (advantage: quality of life)

You've picked a sort of an unfortunate time for a hypogonadial man to be diagnosed with prostate cancer. Medical science seems to be turning a corner on testosterone for men with prostate cancer. All of the recent evidence seems to indicate that we'll make it around the corner successfully and that most of the restrictions on T supplementation for men with all but the highest-risk cancers can be dropped. But the science is still new and conservative doctors are letting their bolder colleagues take the lead.

Assuming that you don't want to spend the rest of your life in that middle category -- the hypogonadial range where the saturation theory suggests neither an advantage in disease control nor in quality of life -- there are a few things that it occurs to me you might try:

Discuss the research with your doctor. The idea here is not to educate your doctor about medical research but to convince him that you have enough understanding of the risks to allow you to help him make decisions about your care. Here are a few studies that talk about the recent reassessments: Shifting the paradigm of testosterone and prostate cancer: the saturation model and the limits of androgen-dependent growth (Morgentaler, Traish 2009), A new era of testosterone and prostate cancer: from physiology to clinical implications (Khera, Crawford, Morales, Salonia , Morgentaler 2014), and Current State of Practice Regarding Testosterone Supplementation Therapy in Men with Prostate Cancer (Kovac, Pan, Lipshultz, Lamb 2015). The last one -- Current State of Practice... -- is a nice full-text review.

Shop for doctors. Like I said, this is a fairly sharp turn for medical science and not all doctors are ready to attempt it. There are doctors out there who will consider it but you may have to shop around for a doctor who isn't afraid if the tires squeek while he power-drifts around the turn.

Put yourself in a different category. If you look at the review study I linked above (last link) you will see that it breaks down the data into three categories: men on Active Surveillance, men who have had radiation, and men who have had surgery. I have the impression that it is easier to convince one's doctors to consider T supplementation if one's PSA behaves after treatment than it is to convince a doctor to supplement during AS. If you feel strongly about not wanting to remain permanently hypogonadial, this might be something to talk to your doctors about as you are making your AS/treatment option decisions.

Paxton, good topic. You are not alone. I also understand your perspective. At 5 years post RALP with undetectable PSA, I have been getting supplemental T for a while. Dosage is not yet balanced to consistently stay above Peter's 'middle group.' Bouncing in and out of the middle is not a fun cycle to experience. The time frame to work out dosage seems glacial even though I have a couple doctors working with me.

Peter, thanks for a very well worded post and the links. After RALP and subsequent recovery, there is no need to settle now for a compromised quality of life when the science is pointing to no benefit.

Explorer

Paxton,

There are some drugs that help with the brain-fog and the moodiness that comes with low testosterone. Discussing them is, technically, borrowing trouble for you at this point but since you have some experience with hypogonadism they may be worth mentioning as things to consider if the problems you anticipate (and remember) do once again present themselves.

Antidepressants seem to help with the brain-fog a bit. While I was on ADT I was on two of them -- fluoxitine (Prozac) and bupropion (Wellbutrin) -- and they did help, although Prozac has its own problems and the bupropion was added to try to offset them. If you want to read some of my endless complaining about ADT, Prozac, etc., from 3 1/2 years ago you could check out ADT4 - Prozac Giveth and Prozac Taketh Away.

Modafinil (Provigil) also helps with the brain fog -- a lot, actually -- but it is quite expensive in some marketing areas. It is a generic drug but the last time I checked it was still simply too expensive in the US to consider for regular use.

And, of course, if you don't belong to a gym you should join one. Exercise does help although it is not as rewarding, obviously, without testosterone as with it.