Anyone with a PSA in the 11's or close?

Posted by thig350 @thig350, Dec 9 8:12pm

So, for background, 57 years old, recently had two PSA tests, first was 11,9, second a month later 11.7. No symptoms aside from occasional slow to start urine stream if I don't hit the bathroom for an extended period of time. No blood in any fluids. No pain.

GP refers me to a Urologist. Urologist schedules me for an MRI and ultrasound guided biopsy in January of 2026. Pretty much consensus between my GP and Urologist has been if I have PC it could have already spread due to my PSA level and get my affairs in order but stay positive as there are things they can do. Not the most uplifting but ok, going from getting ready for the holidays to getting my affairs in order. Cool. And now the waiting begins until mid-January. Even better...

I've been researching a lot and noted that there wasn't much out there specific to my PSA levels and probable outcomes beyond anything between PSA 10 - 20 is increased risk of PC and above 50 is getting dicey relative to spread.

So, anyone on here with a PSA in the 11's or close who could share what their journey has been? I get that its case by case/the individual but would appreciate some perspective from similar PSA type folks.

Thanks!

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Profile picture for drewlevine @drewlevine

@vircet Do you know why @vircet your was labelled unfavourable 3+4 and not favourable? Mine has also been labelled that but don’t have a clear sense why. I have cancer in about 50-55% of right prostate and none on the left side. The cancer on right side was evaluated to be 90-94% grade 3. However, my PSA at last measurement was 15.3. I’m interested in hearing what other people know. Thanks

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@drewlevine
Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

Your PSA is relatively high for 3+4, That could also be a factor.

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Profile picture for jeff Marchi @jeffmarc

@drewlevine
Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

Your PSA is relatively high for 3+4, That could also be a factor.

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@jeffmarc Thank-you Jeff. The biopsy report says all the cancer analyzed was of the acinar adenocarcinoma type which I understand is the least aggressive type at 3+4. A confounding factor could be that this spring I developed some sort of autoinflammatory condition that was revealed in bloodwork I had (currently being treated with prednisone). Oh and the thing that I forgot to mention was that a PSMA pet scan showed a possible one metastasis (right iliac bone) near where I had right hip surgery in the spring. But it rated it an equivocal 3 so perhaps that's why I got the unfavourable status as well. Studies I've looked at suggest that the majority of equivocal 3 findings by PSMA scan are benign and that's what I'm hoping for here. I will put a post up at another time about the treatment I've chosen because I would like other peoples thoughts on it.

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Profile picture for vircet @vircet

@drewlevine I looked again at my biopsy final diagnosis (tissues collected on 24 Jan 2025). I wanted to give you a more accurate answer, better than just saying I trusted my urologist and radiation oncologist's diagnosis of unfavorable intermediate. Although I didn't do this level of analysis (underlining in red in the attached jpeg) prior to your question, I now fully agree, without a doubt, that I was unfavorable, due to: (a) More than half (8/14) of the sample tissues were malignant, and (b) the percentages were all high. I believe that either of these two (a or b, alone) was enough to make me unfavorable. I wasn't happy with the doctors' assessment, and I wanted to argue so that I could avoid ADT, but I decided that they knew better than I did.
How many tissue samples were there in your biopsy? How many cores were positive for malignancy?

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@vircet Thanks Vir. My second biopsy was performed after an MRI showed two new lesions of concern. The area targeted was the right prostate with 10 samples of which 7 were positive for cancer and 5 of the seven had significantly high percentages of cancer (right anterior). PSMA scan I had 6 months later showed that the cancer was still concentrated in that right anterior section with none being noted on the left side. Still my PSA is above 10 and I have 3+4 grade so that alone probably puts me in the unfavourable category which does indicate ADT. I've decided not to use ADT for now although was advised to do so by the oncology team. I've gone the radiation alone route and have one more treatment left. I did think about it a lot and realise there maybe more risk this way in terms of cancer but am mostly comfortable with my decision.

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Profile picture for drewlevine @drewlevine

@vircet Thanks Vir. My second biopsy was performed after an MRI showed two new lesions of concern. The area targeted was the right prostate with 10 samples of which 7 were positive for cancer and 5 of the seven had significantly high percentages of cancer (right anterior). PSMA scan I had 6 months later showed that the cancer was still concentrated in that right anterior section with none being noted on the left side. Still my PSA is above 10 and I have 3+4 grade so that alone probably puts me in the unfavourable category which does indicate ADT. I've decided not to use ADT for now although was advised to do so by the oncology team. I've gone the radiation alone route and have one more treatment left. I did think about it a lot and realise there maybe more risk this way in terms of cancer but am mostly comfortable with my decision.

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@drewlevine That's the important thing, Drew: be comfortable that you have made the decision that's right for you. Not one size fits all. Best regards,

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Profile picture for vircet @vircet

@drewlevine That's the important thing, Drew: be comfortable that you have made the decision that's right for you. Not one size fits all. Best regards,

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@vircet Thank-you!

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I'll share my husband's journey since February of this year, he's 56 now.
He went to Primary Doctor was frequent peeing at night and some ED (but we also had a lot of stress in the family the year before)
His PSA came back almost 300! Cancer for sure!! It prompted a CT scan of his pelvis a few days later and that showed it outside the prostate!
Then appointment with urologist who said it's advanced cancer, so stage 4! and referred to oncologist and said he'll most likely prescribe ADT for chemical castration!
He also scheduled a biopsy a few days later and Gleason scores (two numbers together) came back mostly 8 and 9s, which means BAD cancer cells!
The waiting for oncologist seemed agonizingly long!
Once we saw him we were bombarded with doctors, radiologists, nurses, patient help etc.
He scheduled a PSMA PET scan and said most likely my husband should start ADT.
The PET scan results were BAD! He lit up like a Christmas tree!! Black dots everywhere!! Lungs, lymph nodes, spine, pelvis, bones etc.
My husband really struggled with the thought of being chemically castrated! That's his manhood! Meanwhile I said if I had breast cancer or something like that I'd cut them off or get other surgery for US, for the family!
He VERY reluctantly went back and got a FIRMAGON shot (mostly Lupron is used but it can make testosterone flare up at first, so in very advanced cancers they use Firmagon first, then switch to Lupron later)
In the meantime my husband was taking any sort of supplements out there and it resulted in him wrecking his liver! which then prompted an ultrasound of that area and everything was fine and a liver specialist told him to quit everything, which he did (some of them he never told ANY doctors about!)
Once the liver was normal again they prescribed Zytiga and Prednisone which is 4 pills and prednisone.
The side effects have been tolerable I think, he has hot flashes and doesn't sleep well (I'm late 40s so we can have night sweats and hot flashes and be moody together!!) and of course no sex drive! But I told him early that I'd rather have no sex life and a husband that's alive than a dead husband and still no sex life!
Over the summer he also reluctantly did chemo, and side effects were tiredness and hair loss, it's coming back now but almost all white!!
We did try two "happy pills" once recently and he said there was no emotion with it, it was all mechanical! so....
He was supposed to switch to Lupron but doesn't like the side effects listed online so he keeps doing monthly Firmagon injections and he's in pain in the stomach for a day or two but that's about it.
He eats right and exercises at least 5 days a week and the doctors are saying he's doing EXTREMELY well! (a "B" of a pharmacy lady said he'd be dead by now if he didn't do the treatment!)
he recently had another PSMA PET scan and there were only two or three tiny dots left (organs you can't tell on the scan we saw, just the description, but it's been a great improvement!)
I'm hopeful but still with stage 4 only 30% make it 3-5 years, so who knows.
Mentally it sucks! only these last few weeks have I caught myself at night realizing I didn't think about being a widow all day!
We keep praying and focus on TODAY and family time together with our 4 kids!
Hang in there!

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IS good to hear things are getting better.
It seems life it put on hold for several years while all this happens.
I've been through 2 stage 4 cancers and hoping for a better future.
Damage has been done. see my profile if you'd like.

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After complaining to my GP about frequent nocturnal urination, my recommended blood test indicated a psa of 11.5. Then came...
A 12 core biopsy
MRI
Pet Scan
Surgery
Salvage radiation
14 months of Lupron
I've been undetectable since my first Lupron injection. My oncology team told me this cancer wouldn't kill me, even though I had regional spread to a pelvic lymph node. In fact, my oncologist feels I might be cured.

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