Low T: Had surgery in Jan. to remove my... - Advanced Prostate...

Advanced Prostate Cancer

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Low T

WaltL profile image
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Had surgery in Jan. to remove my prostate I am 65, have low T is anyone experiencing this and what can be done.

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WaltL
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Darryl profile image
DarrylPartner

What are you actually experiencing that makes you concerned about low T?

WaltL profile image
WaltL in reply to Darryl

Darryl, ED, low energy I have asked my doctor about going on a testosterone replacement and have not gotten an answer from him. I have read where using a replacement is fine? I had a Gleason 6 score, if I had to do it over again I would have done active surveillance.

CERICWIN profile image
CERICWIN

What medications did the doctor prescribe? Frequently, along with the prostatectomy, a patient is given ADT---androgen deprivation therapy---to prevent metastases and kill off any stray cancer cells.

At this particular point, it's probably good that you have low testosterone. Testosterone is fuel for prostate cancer until the patient becomes "castration resistant," meaning that the cancer cells finally adapt to the lack of testosterone and continue to grow and spread without it. (this is a very simplistic explanation).

Did you have a testosterone level with your blood tests, or are you experiencing symptoms that just seem to indicate low testosterone?

CERICWIN

WaltL profile image
WaltL in reply to CERICWIN

CERICWIN, No Meds, my PC was Non Aggressive it did not spread and was contained to one side of my prostate, I had a blood test that confirmed the Low T.

pjoshea13 profile image
pjoshea13

Walt,

With a GS=3+3 & early treatment, I disagree with Eric when he writes "Testosterone is fuel for prostate cancer." A lot of doctors still subscribe to that view, but Dr. Morgentaler is starting to change that thinking.

One reason I chose my integrative medicine doctor was that he was OK with my use of androstenedione (an otc supplement that was banned when 12 year old baseball players started using it). My doctor subsequently prescribed 4mg AndroDerm patches.

You will find it difficult, no doubt, to find a sympathetic doctor, but don't give up.

Also, some who treat hypogonadism are only interested in getting a man to the 350 ng/dL level. This is too low. I think that T should be at least twice that.

Some papers:

[1] ncbi.nlm.nih.gov/pubmed/267...

"In this article, we review and summarize the existing literature surrounding the use of testosterone therapy in men with prostate cancer. Historically, testosterone was contraindicated in men with a history of prostate cancer. We show that this contraindication is unfounded and, with careful monitoring, its use is safe in that regard."

[2] ncbi.nlm.nih.gov/pubmed/257...

"The relationship between recurrent prostate cancer risk and testosterone replacement therapy (TRT) for hypogonadal men is explored."

"There is insufficient evidence to withhold TRT in certain populations of men with a history of prostate cancer."

[3] ncbi.nlm.nih.gov/pubmed/244...

"In this population-based observational study of testosterone replacement therapy in men with a history of prostate cancer, treatment was not associated with increased overall or cancer-specific mortality. These findings suggest testosterone replacement therapy may be considered in men with a history of prostate cancer ..."

[4] ncbi.nlm.nih.gov/pubmed/233...

"Testosterone replacement therapy in men with prostate cancer is controversial, with concern that testosterone can stimulate cancer growth. We evaluated the safety and efficacy of testosterone in hypogonadal men with prostate cancer treated with radical prostatectomy."

"... testosterone therapy is effective and, while followed by an increase in prostate specific antigen, does not appear to increase cancer recurrence rates, even in men with high risk prostate cancer."

Good luck, -Patrick

WaltL profile image
WaltL in reply to pjoshea13

Patrick, Thank you so much for your reply it was very informative I will be sure to discuss this with my Dr., again thanks

CERICWIN profile image
CERICWIN in reply to pjoshea13

Patrick, I respectfully disagree with you. If testosterone is not fuel for prostate cancer, how can it be explained that my own Stage Iv, PSA 744, Stage IV with bone and lymph mets, partially blocking both ureters and bladder outlet was shrunk very quickly after beginning Androgen Deprivation Therapy?

Obviously, the testosterone was making my prostate cancer grow out of control, and that cannot be denied.

Testosterone blocking drugs for prostate cancer have a very long and successful record in slowing the progression of the cancer---how can that be denied?

I know of individuals who've had success with testosterone-blockers for more than a decade.

There is a lot of quackery regarding prostate cancer, but I was so confident that the testosterone is causing growth that I underwent a bilateral orchiectomy because my own T-level wasn't within the therapeutic level.

I have also charted my testosterone levels on a graph, along with the PSA and lower T-levels almost always corresponded with reduction in the PSA.

Testosterone may not be your enemy, but it most certainly is mine---until my prostate cancer becomes 100% castrate-resistant.

Eric

pjoshea13 profile image
pjoshea13 in reply to CERICWIN

Eric,

There are a number of studies that looked at T levels at diagnosis. Several things are consistently reported:

(i) cases have lower T than matched controls

(ii) cases contain significant numbers of men below or around the hypogonadal cut-off of 350 ng/dL

(iii) cases with the lowest T have the worst prognosis.

Dr. Patrick Walsh, in an old study, found that T levels rise within 12 months of RP. That the cancer itself causes a reduction in T.

On the other hand, T is necessary for PCa growth. But there isn't anything in the literature that points to T as the cause of PCa. With advanced PCa, we are forced to treat androgen as though it were the prime mover.

Walt was eligible for active surveillance [AS]. Has anyone on AS ever been tested & told that their T was dangerously high? Of course not.

Twenty years ago, there was a rush to get men on ADT, even though failure in 18-24 months was common & there were few treatment options after that. There is absolutely no survival advantage in rushing into ADT. How come? If T is the fuel?

My personal belief is that:

(a) low T is permissive of growth; normal-high T opposes growth in those who have never received hormonal therapy.

(b) with ADT comes changes to the androgen receptor that mostly make T dangerous.

Some studies:

[1] "Among clinicopathological parameters, the lowest-quartile group of serum testosterone level was a significant predictor of poor cancer-specific survival and overall survival as well as survival from castration resistance."

[2] "Multivariate analysis identified positive finding at DRE and low serum testosterone level as significant predictors of a high Gleason score at prostate biopsy."

[3] "Our data suggest that only low {bioavailable testosterone} and {free testosterone} levels ... were linked with high-grade PCa."

[4] "A total of 154 men were included in the {active surveillance } cohort, of whom 54 (35%) progressed to active treatment. Men who had disease reclassification had significantly lower free testosterone levels than those who were not reclassified (0.75 vs 1.02 ng/dL ...). Men with free testosterone levels <0.45 ng/dL had a higher rate of disease reclassification than patients with free testosterone levels ≥0.45 ... Free testosterone levels <0.45 ng/dL were associated with a several-fold increase in the risk of disease reclassification (OR 4.3 ...). "

-Patrick

[1] ncbi.nlm.nih.gov/pubmed/266...

[2] ncbi.nlm.nih.gov/pubmed/265...

[3] ncbi.nlm.nih.gov/pubmed/255...

[4] ncbi.nlm.nih.gov/pubmed/248...

CERICWIN profile image
CERICWIN

When I was diagnosed, my testosterone level was 500. My uro said that it was a very good T-level for a man my age (64 at the time). The hormone therapy immediately lowered my testosterone level and shrank prostate and lymph glands---I came very close to having my ureters completely blocked. If I hadn't been put on the Firmagon and bicalutamide, I would have had complete blockage, and possible kidney damage or worse.......

Thousands of men have had success in controlling the progress of the cancer by the testosterone-blocking drugs, so with that, how can anyone possibly say that testosterone doesn't fuel prostate cancer? There is usually some point, though, at which the prostate cancer becomes "castrate resistant," and the testosterone deprivation is no longer effective in controlling the cancer. These factors have been proven time after time.

Low testosterone obviously did not cause my prostate cancer.

CERICWIN

in reply to CERICWIN

Last year I was given a prescription for a cream to boost my low T. I recall the doctor saying that if my prostate were to be inclined toward cancer that this supplmentation would be like throwing gasoline on a fire. That stuck with me . I didn't see any great and wonderful improvement taking the low T treatment. After a month and a half I decided that the benefit was no where near the risk and stopped applying the cream. A year later ... I have prostate cancer. Glad I chucked the low T treatment.

BigRich profile image
BigRich

" There is absolutely no survival advantage in rushing into ADT." I agree, the doctors wanted to put me on ADT in September 2002, but I resisted. I needed to go on ADT in October, 20015.

in reply to BigRich

I haven't had surgery or radiation yet; cancer diagnosed only a month ago. My doctor wants to put me on ADT (eligard) prior to the radiation treatment he recommends. I'm not keen on taking that 6 month shot he wants to give.

CERICWIN profile image
CERICWIN in reply to

I suggest that you ask your doctor about beginning on Firmagon. Firmagon doesn't have the characteristic "testosterone flare" that Lupron has, and it is only available in one-month injections. The injections can be a littlepainful, but some ice on the injection site can help reduce the pain immediately. Then you can be switched to Lupron, which is also available in one-month injections.

I dislike the longer-term injections because if you find the side effects to be too unpleasant, you're not locked into a full three or six month injection.

You can certainly tell your doctor that you don't feel comfortable with a six-month injection. It's YOUR body and your decision, after all.

I'm not giving medical advice, I'm just giving information to present to your doctor.

CERICWIN

in reply to CERICWIN

Thanks Cericwin. I like the idea of getting a two month rather than six month shot of eligard/lupron. I've heard of Firmagon in reading Katz' book. I will look into that further, including interactions with the heart meds I am on for atrial fibrillation.

CERICWIN profile image
CERICWIN in reply to

There is another way of reducing testosterone, which is kind of drastic; a bilateral orchiectomy. I had my testicles removed on November 18, 2015 and prosthetics implanted.

The Firmagon and Lupron failed to reduce my testosterone level to the therapeutic level of twenty or less, so my uro and medonc suggested this course, and I agreed---the most difficult decision of my life. The Journal of the American Medical Association had an article about six months ago about the advantages of surgical castration over Lupron---fewer cardiovascular complications and also less risk of "skeletal incidents:" (fractures)

My uro is amazed that, after more than three years of hormone treatments and seven months after castration that I still have some libido and some erectile reflex. My case is very atypical, though.

As I told my urologist, "I wouldn't mind too much if I had to be castrated because, after all, they're no longer functional, just decorative." It gave him a really good laugh.

But it was very important to me psychologically to have the prosthetics implanted, as it would have depressed me to look down and see an empty scrotum every day, and too embarrassing to have others see me that way---even though it's only medical people who see my genitals these days.

And the orchiectomy allowed me to stop the Lupron, although I remain on Xtandi, which gives me more than the usual side effects that oher guys experience, but at least it appears to be slowing the progression of the cancer.

Eric

BigRich profile image
BigRich

ADT LIght is 150 mg. of Bicalutimide, daily. Very light radiation to the breasts before taking the drug; so that, your breasts don,t grow. I am not a medical doctor; therefore, discuss this with you physician. Your doctor recommends six months ADT before radiation, he is correct on the lenght of time before your treatment. Taking this before your radiation, should improve your outcome.

Good Luck,

Rich

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