Testosterone issue.: I had a follow up... - Advanced Prostate...

Advanced Prostate Cancer

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Testosterone issue.

Blueribbon63 profile image
11 Replies

I had a follow up visit with my PCP last month. Of course he knows about my advanced PC. He ordered a round of lab blood exams, as always. About a week later, I got a call from his office to tell me PCP is is concerned about low testosterone count<50 and wants to repeat lab exam, they told me come early in the morning and fasting. so I did and got the new results which are even lower <3 I am on a Lupron every 3 months injection. My MO couldn't be happier with those testosterone count readings. PCP on the other hand is very concerned and, due to SE's fatigue, weight gain, flash sweat, no libido. He's looking for a way to improve my QOL. I see him again next week and do not what to expect. Getting my testosterone count so low is celebrated with MO. Not so much with PCP. By the way PSA is on the rising even though Testosterone is at it's lower.

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Blueribbon63 profile image
Blueribbon63
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11 Replies

Your testosterone should be near zero. Time to go back on a secondary ADT.

maley2711 profile image
maley2711

Does your PCP claim to know anything about PCa and treatments? hopefully not..otherwise I'd look for someone else?

Cooolone profile image
Cooolone

What qualifications and training has your PCP had in regard to Oncology? What if any qualifications and training has he/she had in Androgen Therapy?

Maybe ask those questions before worrying about your PCP's concerns over your blood work. Obviously, the Lupron is doing it's job, which is to provide castrate levels of Testosterone without surgery using drugs. It is by design and as noted <50 is a good thing and lets you know the drugs are working.

Mixing apples and oranges is never a good thing, let alone if your PCP isn't humble enough to admit this is outside his/her wheelhouse! There's nothing wrong with asking those questions, ie, qualifications and training, experience, etc., let alone if the doctor believes they will second guess an Oncologist who is trained in the specific area of Cancer Care!

Just sayin'

;)

Best Regards

London441 profile image
London441

If you have to explain to your PCP the purpose and action of Lupron that is unfortunate.

If you like him/her enough just tell them to look it up and get back to you with their big concerns. Otherwise get out of there.

tsim profile image
tsim

Guy's a clown, dump him

VHRguy profile image
VHRguy

I have a similar, rather funny story. My PCP was only peripherally involved in my prostate cancer diagnosis and start of treatment. When I came back to see him a few months after I started Lupron, they did a blood draw.

I got a call from the PCP's office a few days later, the PA saying that my testosterone level was very low. I said "Great!". She said, "I don't think you understand, it's really, really low. The doctor wants to see you soon!". I laughed, and explained what was going on. I'm not sure she really understood even then.

It actually kind of blew my mind at first when my urologist told me about ADT. It sounded barbaric; I didn't even know it was a "thing"!

addicted2cycling profile image
addicted2cycling in reply toVHRguy

VHRguy wrote -- " .... It actually kind of blew my mind at first when my urologist told me about ADT. It sounded barbaric; I didn't even know it was a "thing"! "

I went with the old fashion way to lower *T* -- surgical castration. Made my bicycling way more enjoyable. 👍👍😁

VHRguy profile image
VHRguy in reply toaddicted2cycling

I have done the same! We're well outside the mainstream. With permanent T suppression being my next option, that seemed like the most rational way.

How have you done with it? I find it surprisingly comfortable the "boys" are never a problem anymore!

addicted2cycling profile image
addicted2cycling in reply toVHRguy

As levels dropped with finally hitting T<2.5ng/dL I had the muscle decline, the flashes, the feelings of me not being me(weird right) BUT NEVER brain fog, loss of concentration or mood swings or weight gain because of continuing my exercise and healthy diet.

ONE HUGE DIFFERENCE allowing me to be where I am right now without having gone with RP surgery or radiation or chemo almost 9 years from a GL10 diagnosis and treatment is that I went WAY outside the box with an experimental protocol treatment that included an experimental immunotherapy injection and *T* injections in an on - off - on - off - on .... (BAT like sequencing). I'm currently ON with another injection on Wednesday bringing *T* levels up and will see what blood tests reveal in 2 weeks from Friday to see if I remain ON or have to go to OFF.

Don't mind playing CRAPS with my life since my 73 years have been good and my eventual demise possibly sooner rather than later is not feared.

VHRguy profile image
VHRguy in reply toaddicted2cycling

Very good! Mine was a G9, 5+4. Similar survivability stats to G10. There aren't a lot of cases like that in studies, so it's hard to find good data for us. Rarely enough in a cohort to allow any statistical conclusions, but sometimes they note a sub-study outcome that may at least be indicative.

I'm over 4 years out from recurrence (had IGRT and 3 years of ADT as primary), castrated and on estradiol just about 4 years ago. Does your doctor make any allowance for the lower-than-normal PSA output of the type 5 cells composing your G10? Years ago I saw a study showing the higher Gleason grade cells put out less and less PSA, with type 5 producing little. My fairly high volume case only had a PSA of 5.2 at diagnosis. As a result, I had a lower threshold in mind for declaring recurrence.

addicted2cycling profile image
addicted2cycling in reply toVHRguy

At dx my PSA was 14+. Dr. cryoablated the crap out of the existing GL10 tumor in the right half then treated the remaining lower GL in the half with IRE focal months later. Had a minor GL 6 and GL7 recurrence in left half 3 years after initial IRE so hit them again and holding steady. Since left half is still producing PSA any statistical numbers are meaningless for me, as I mentioned I'm *way outside the box for treatment* and in a world apart from others.

Read years ago that only 5 guys of every 100 diagnosed World Wide are GL10 so not a large number to study.

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