High psa. Scheduled for psma pet ct. ... - Advanced Prostate...

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High psa. Scheduled for psma pet ct. urologist

pj1121 profile image
15 Replies

just discovered I have very high PSA 250. Feel excellent. Only minor urological issues and dry ejaculation. Scheduled for PSMA in 10 days.

have not spoken to an oncologist yet. My urologist wants me to start Lupron and bicalutamide before psma scan.

will this cut off any future avenues of treatment and does anyone have experience or opinions?

Thanks

Pj

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pj1121
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15 Replies
6357axbz profile image
6357axbz

I would see an oncologist at a cancer center of excellence before following a urologists advice. I started out with a urologist and he screwed up big time. Quite a few others here have had bad experiences with urologists. Think about it. Why would a urologist, who is not a cancer specialist, not recommend to you a PCa specialist?

pj1121 profile image
pj1121 in reply to 6357axbz

I am scheduled to see an oncologist after my psma scan. My question is - should I take the urologist advice to take lupron before my psma scan and oncologist appointment. Could lupron possibly interfere with a different treatment the oncologist would prefer?

Thanks

Pj

6357axbz profile image
6357axbz in reply to pj1121

I’m not a doctor. If it were me I’d wait on the lupron, get the PSMA scan and see your oncologist if that appt is not far off. 10 days shouldn’t make a difference.

dhccpa profile image
dhccpa in reply to pj1121

I don't know, but I suspect your concern is well founded. It couldn't hurt to see an oncologist. Just make sure he has all your records.

Epalaver profile image
Epalaver in reply to pj1121

I can’t speak to your particular situation but I can give you my experience. The radiation and lupron treatments have been unsatisfactory. The cancer returned shortly after treatment and the lupron has had very negative side effects. The the worst side effect has been a drastic loss of muscle mass, weakness, and fatigue. I have also had hot flashes on an hourly basis since beginning the lupron and the hot flashes and muscle loss us continued unabated for 2 years after stopping treatment. My recommendation is that before starting any treatment, carefully research the standard and non-standard options available. There is a tremendous amount of information available now on alternative treatments that are effective and have fewer side effects. Jane Mclleland ,”How to Starve Cancer” is a good place to start. Don’t wait to do your own research until it is too late like I did. .I was diagnosed with Prostate cancer in 2017 and received radiation treatment in Nov & Dec of that year. Approximately 12 months later my PSA began to rise and a biopsy showed the cancer active. I when on Lupron or equivalent for 18 months. PSA dropped to 0. However, if I had it to do over again I would not have had the radiation or the Lupron. Besides incompetent and/or indifferent urologists that I had, and competent oncologists they all suffer from narrow mindedness and diagnostic straight jackets caused by something called “standard of care”. The traditional medical profession and medical facilities only allow doctors to proscribe treatment sanctioned or supported by the medical establishment and usually heavily subsidized by drug companies. In the case of most cancers the doctors will only consider treatment that in layman terms comes down to cut, poison, or radiate. Any other approach is is outside of “standard of care’ and doctors generally will not even discuss them out of fear or prejudice. Metabolic and alternative treatments are usually not even considered.

addicted2cycling profile image
addicted2cycling in reply to pj1121

Wondering if I have missed your post because I haven't seen any BIOPSY RESULTS???? Have you had a biopsy????

Seasid profile image
Seasid in reply to pj1121

You should first perform a biopsy of your prostate and only then start lupron as lupron would alter the results of the prostate biopsy. That was how it was explained to me by my urologist.

Seasid profile image
Seasid in reply to Seasid

Plus you should start early chemotherapy after about 6 to 8 weeks staring ADT (lupron) otherwise it is either not effective or too toxic if you don't wait with the chemotherapy long enough and you are not deeply castrated.

Therefore you should start chemotherapy only after you are deeply castrated and that is about 6 to 8 weeks after starting ADT but don't wait much longer as the chemotherapy is most effective on rapidly dividing cancer cells.

dhccpa profile image
dhccpa in reply to 6357axbz

It's very common for urologists to jealously "hold on" to the patient until they've done the max they can do. I also had that experience with a urologist before I jumped ship on him.

SteveTheJ profile image
SteveTheJ in reply to 6357axbz

FWIW, I didn't have a bad experience with a urologist but I wondered, why would I see a urologist for cancer care? A urologist spends time thinking about a lot of different diseases while an oncologist can specialize in just one. Any input from a competent medical professional is good IMHO but for cancer, see a medical oncologist.

Tall_Allen profile image
Tall_Allen

I think it is important to get a bone scan/CT in addition to a PSMA PET/CT. It's only because the trials that were done to determine next steps were based on bone scan/CTs. You should be able to get a bone scan/CT within a week, so there is no danger of metastases shrinking.

MJCA profile image
MJCA

I am replying to this message after your later message. Lupron and Casodex are the first meds most of us are prescribed after being diagnosed with PC. Yes, 250 is quite high. It would be best in your best interest to take both meds. Neither Lupron nor Casodex impair your ability to access other treatments. In fact, the next “line” of treatment is when your body does not respond to Lupron; that’s when a patient is classified as Castration Resistant - not the best moniker. Ironically they will still keeping you on Lupron. This time around, I am nearing 7 years on Lupron. Please let us know what you choose to do.

SallyJones profile image
SallyJones

I don't think it would interfere with a different treatment and if the oncologist wanted a different treatment, then he or she would just not follow up with another shot. I would most definitely see an oncologist. Your urologist is pursing treatment ASAP for your benefit. You will probably need to see both MDs. Hope this helps and good luck!

lcfcpolo profile image
lcfcpolo

MJCA is spot on, as is tall allen. Definitely push for the bone scan/CT first. Assuming it shows metastatic and spread, what your urologist has recommended is then the standard of care. Once starting this you should transfer to a medical oncologist. I'm not aware of this stopping any future treatments. Most of us in here I think have been down this route. Good luck my friend.

nextphase profile image
nextphase

I have been on lupron for two years now. They did start me out with bicalumide and lupron for about six months. My psa started to rise so my OC team took me off the bicalumide. My psa so far for the last six months has been undetected. I'm scheduled for the next shot in June. I feel good work out as much as possible and now 15 years out. Good luck to you we are all in this together. Praying for all.

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