To T or not To T, that is the question.

My uro wants to start me on some treatment for low T. My results are 347 with a Free Testosterone of 7.4. He says with nearly 3 years of being in the zero club it should be safe. I'm rather skeptical myself, but have the low T symptoms. I'm at a loss. Any opinions or advice?

My PCa journey actually started when I went in for T therapy. T tested between 180 and 230. For some reason uro didn't test PSA when therapy was started, so at the 6 month checkup I first found out my PSA was 4.8. The T was life-changing and getting back on it after the PCa was treated was a big factor in choosing surgery.

Anyway, I'm at 6 weeks post-surgery and looking forward to going back on the T again, maybe as soon as 3 months if I get a zero on the PSA test.

And I got the same information about saturation--my tumors were doing very, very well with T around 200 and the additional T, according to several doctors I talked to, had no effect on the cancer. In fact, there seems to be some evidence that PCa in guys with low T may progress to higher grades more rapidly--maybe because it learns to live with little or no T and can more easily live outside the prostate.

lowandslow.

Azsunshine2012 is correct about the saturation but one small clarification. The studies have shown that saturation occurs when your Testosterone is at 70. That isn't much when average levels are between 600-800.

You ask a great question. I am a G9, lymph node positive, radical RPPA in 2010, had low T for years prior to diagnosis. My natural T levels pre-surgery were 60-80, but did Lupron and Cassodex all year last year along with eight weeks of daily IMRT/IGRT.

I was sick and tired on having essentially no T in my system for over four and a half years. So I began the discussion with UO specialists in a few states to get their input. I found there is the old school (absolutely do not restart T replacement ever after being diagnosed) to the new school who are fairly comfortable with trying it out. The new school say that if you use a gel that you apply daily, it only takes two weeks once you stop application for your T levels to drop back down to your natural level. For me, that meant in the range of 60-80 which meant that saturation had occurred and if that is the case, why not start with T replacement treatment.

Again, I am a G9 and 54 years old. I was tired of being exhausted, no drive, affected my outlook on life, etc. so I decided why not give it a try and see what happens. My RO, UO and MO all were in agreement because they recognized it was a quality of health issue for me. The only condition was the experiment would be for 90 days and I would need to have my PSA checked, which I do quarterly any way. So I started back in October and had my PSA checked at the first of this month and by some miracle, I am still non-detectable. My T level had jumped to 365 and I feel better so we are upping the number of pumps per day to see if they can get me to 600 or higher.

I feel so much better, have so much more energy, enough so to begin exercising again which is wonderful to burn off stress and improvement in my sleep. In the old days, for men with advanced metastatic cancer, they gave them T to help them feel better. The theory was, why not help the man feel better while he is still alive?

It really comes down to a personal choice. Are you frustrated with the SEs of chemical castration? Are you willing to gamble for 90 days? Do you need improvement in your quality of life? If you have a partner, do they by into the experiment understanding the risks?

Again, if saturation occurs at 70, which isn't much, why not try it out? I know that many will say how absolutely crazy of an idea this is. I narrowed down to the fact that I couldn't stand the Lupron/Cassodex brain impact, I was so frustrated with no T for over four plus years and I wanted to see how I feel with the T replacement.

I can tell you that I feel so much better with just three months of replacement therapy. It was nice that the recent PSA test came back as non-detectable. When the PSA results show a rise, I will have to make a decision as to what I am going to do. Stop the T replacement or continue it and have the QOL improvement while I am alive.

Again, it comes down to a very personal choice.

Good luck with your research, deliberation, and decision. I would encourage you to discuss this with your oncology team and get their input. I was surprised that when I mentioned QOL to my team, they all got it and bought into the trial because again, after two weeks of stopping application, the T levels drop. At that point, one can rush back in and get another wonderful Lupron injection and commence taking Cassodex, or not.

Best wishes for a life time of feeling great and being non-detectable with this horrific disease.

My urologist and surgeon have agreed that a zero at six months is good enough for them and I'll be back on T. And, I'm counting down the days, to be honest.

I can't wait to feel as good as I felt on supplemental T.

There are a few things you need to check -
1) sleep apnea (I snore bad) -- it may cause T to drop
2) pituitary gland (I had 2 MRI)

I used to get the 3 month injections; but I guess thats a bit much so close to an RRP. However, I use TestoGEL and they work OK.

I used to lift weighs and will get back to it soon. Exercises involving large muscle group (squats) helps; isolated arm curls aren't so good for me.

Endos are conservative, so I had my endo and urologist agree that T replacement is a good things, 3 months out of RRP (with PSA < .01)

mspt98,

Supplemental T absolutely shuts down your natural production. Most of the gels out there are not only expensive, but they also only get your levels up to a mid-range level, if that. In the past, when I've been on T, I did my own injections. Taking it every 3-4 days, with divided doses, creates a much smoother ride. Doing injections every 2-3 weeks at the doctor is expensive and allows for too much of a roller coaster ride. Self-injection is not that hard after you get used to it. My endo wanted my T levels in the 900-1000 range, well, at least until my PCA diagnosis.

I have also used some anti-E meds at times to keep the estradiol levels in check, and HCG or Clomid can be used to help your body to still try to produce some T on its own.

I am 7 years post opt and have been using Androgel under the arm Testosterone for a year and have no seen hardly any improvement in my low libido.  When I started, I had a T level of 220.  After 6 months I was at 450.  Last week my T came in at 390.  I lift weights and since starting T I have seen a little added muscle growth and I slight bit of more energy, but my lidido is still zero.  I was very lucky to have no ED from my surgery and can get rock solid erections with just a little manual stimulation, but I just don't have any more desires for sex.  I can look at nake women 24 - 7 and, but  I just don't feel any desires like I use to before my surgery.  For me, T thearpy just isn't doing anything. 

NY sooner- If you are looking for libido, 390-450, just won't do it. I was 585 before before I started T and could go 2 weeks without wanting it. As I said in my previous post I now stay over 1000, and stay pretty horny. Maybe (and Ive heard this the gel won't do it). Try injections or as I do Bio identical pellets. Regards Inkhorn

I agree on the aromatization, which is why a low-dose anti-E drug can be valuable. I have used arimidex and tamoxifen for that reason (one blocks conversion, the other decreases sensitivity), and while it's easy to use too much arimidex (I tend to use a quarter tab twice a week while on T), they can be valuable to fight moobs and other side effects you don't want. Hair loss can be an issue as well if you convert too much T to DHT and you are sensitive to DHT. Shampoos with ketoconazole can allegedly help there.

As for libido, I think that as you get to the 900-1000 range, the other hormones don't matter too much, as long as estradiol is under control. I could quote a line from Dennis Hopper (who lost his life to prostate cancer) from Blue Velvet. When my T levels are in the 1000 range, his quote that he'll "**** anything that moves" comes to mind. Hopefully that reference to the movie quote doesn't violate any posting rules. But, at higher levels, it has been huge on the libido side for me.

So, maybe it's best that I have to wait 5 more months and join the zero PSA club before I can resume. I'd hate to be that horny right now with no functionality going on downstairs.

Yes, I saw that, I don't have heart disease like the men in the study, but I do have hypertension. It's a possible risk for sure but I think a normal if low T level is safer than hypogonadism. I'll settle for a T level of 300-400.

Gibson00......I only take Arimidex, small amounts, 3 times a week as a dissovable lozenge (flavored) under my tongue.--Easy. No other counter drugs for testosterone. As for injections, yes, injecting more frequently maintains the level w/o peaks and valleys. I inject twice a week, and have been doing so as a delivery system for about 2 1/2 years. (after 6 months of experimenting with creams and gels)........no side effects whatsoever with intramuscular injections. I inject in my quadricep, and alternate legs with injections.

Arnie

For what it is worth, my boyfriend was getting testosterone shots prior to diagnosis and then abruptly stopped when he found out about the PCa. Anyway, he thought he needed it... sluggish, no motivation etc. But 16 months after surgery he has more energy now then he did when was on the replacement therapy. He and I both workout pretty hard 5 days a week (he is 66 and I am 46) and this workout routine has naturally given him the energy and focus he felt he was missing before. He thought he needed the therapy, when in actuality a change in lifestyle was enough. He has always worked out, but the last few years, he was not as diligent as he is now. It's a new habit, that has served him well. Not saying it is for everybody, but if you can work through the initial sluggishness and stick with the program, it may be able to be fixed naturally.

The other benefit is weight loss. This has dramatically helped his incontinence. Urologist believes that the weight loss has lessened his abdominal pressure against the sphincter, creating less leakage. Can't say for sure, but it all clicked at the same time.

Net/Net - no downside to a healthy, active lifestyle. You may be able to avoid the T replacement... especially after the bad press recently about it's link to heart issues. Everybody has an opinion about T replacement (good/bad etc) but my opinion is that there is a reason why this happens with age... same for women with estrogen after menopause. Replacement there was eventually linked to higher incidence of breast cancer. Controversial comment maybe, but don't screw with nature. There is a natural order and balance of things. No short cuts. Live a clean, healthy, active life and you'll get what you need naturally.

P.S. we are not crazy vegan health nuts.... we enjoy a burger and a beer now and then. All is moderation and balance.