Diagnosed: May 2021 age 53 otherwise no health issues. Only symptom was increased urination that progressed to painful urination and inability to fully empty bladder.
Highest PSA was 5. MRI showed Mets to pelvic lymph, seminal vessels, and pelvic bone. Gleason 4+3 (80% of samples) 4+5 for 10%.
CT abdomen/pelvis and chest, and full body bone scan. (Results were consistent with MRI.
Started triplet therapy June 2021, 6 chemo treatments and continued with Lupron every 3 months and Nubequa 2x daily. Scans (Ct and bone) immediately after chemo ended were great, showed mets resolved and bone scan showed no new lesions and pelvic lesion sclerotic and smaller. PSA < 0.03. No pain and feeling great (despite ADT fatigue) resumed working out 5x week.
Fast forward to December 2023: all had been relatively stable except PSA over last year (checked every 3 months when Lupron given) creeping up by 0.01 each time, last one 11/23 was 0.06. No symptoms until this December had one incident of bloody urine out of the blue, no pain or other symptoms. Called MO and had PSA, urine, testosterone etc… labs done. PSA showed increase to 0.1. We realize this is extremely low but understand my PSA was not a good indicator of extent of my cancer from beginning.
Scans done (CT and Bone Scan): showed increased size of prostate with mass. Everything else was unremarkable.
Visit with MO yesterday: referral to Rad onc and Urology onc for consults to discuss TURP followed by radiation. She mentioned they may want PSMA CT or PSMA MRI for baseline and to see if it picks up activity the other scans may not have. Due to low PSA she stated it may not yield new info.
Asking if this all sounds reasonable and if we should ask about another treatment possibilities.
we want to be aggressive and keep this beast contained but also preserve quality of life which is great right now (considering).
What can we expect side effects of TURP and radiation? I know they will review once we have our visit, just wanted “real life” experience vs the textbook answers if you have had this done.
Thanks for your thoughts and suggestions!
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Yes, that is what we heard form our MO. I have seen many types of radiation treatments, not sure what they will suggest. We do not know anything at all about radiation and the potential side effects or long term damage potential. Will start to research all that now! If you have any suggestions where to start or what to look into we would love a starting place. Thanks for all your contributions to the page - so helpful.
"my PSA was not a good indicator of extent of my cancer from beginning."
I was/am in that same boat, and a couple of others I've around here have it mentioned it as well. My PSA never went over 1.0 before they discovered the cancer visually while prepping for a TURP. Similar symptoms to yours including total obstruction of the urethra.
In my case all the scoping, catheters, and TURP caused the PSA to spike up to 9.0 from the trauma; that's normal according to my URO, and fits in with the "don't do exercise or ride a bike two days before PSA test ad it might cause false highs" advice.
I did Triplet Therapy starting last January and ending in May. PSA was 0.944 at start of chemo, and dropped to 0.014 after chemo in May. But it tripled to 0.038 in August, and again to 0.124 in October, and another doubling to 0.224 on November 28, and last one on January 1 was 0.28.
Up to the 0.124 MO was saying "yeah it's going quickly, but these are still low numbers." I always have to remind the care team that PSA for me was alway low and not a good indicator. I think you should remind every doctor you ever see that you were the same way.
Agree, we totally have to be on the medical staff to remember everyone is NOT the same and following PSA numbers is not the only thing to consider! We consistently remind our team about the low PSA at diagnosis and how it is not indicative of cancer activity.
Glad to hear TURP was scheduled for you and caught the cancer sooner vs later! Best of luck with your next treatment - What will you be doing?
Sad to say the TURP didn’t catch it early. By then it had already spread to my bladder neck, seminal vesicles, nuerovascular bundle, a pelvic lymph node, pubic ramus bone, sacrum, scattered small mets through the rest of the pelvis, and multiple mets in 3 lumbar spine bones.
Totally understand, what I meant is without the plan for TURP it may have continued to go unnoticed for much longer - I too was not caught early by definition of spread - seminal vesicles, lymph and bone... but if not for the urinary symptoms and push (DEMAND) for MRI I would still be told not to worry as my PSA was only 4 something and I was too young for prostate cancer, I was told it was infection or BPH. MRI showed differently! We must all be our own best advocates for what we know is not right with out body.
Why wasn't the G9 area radiated? Before the chemo? Actually why wasn't IG/IMRT done on the entire range of cancer before chemo? I realize you need systemic treatment, but wouldn't it make sense to try to kill or injure as much of the cancer as possible using radiation before trying to poison it?
And the reason for the TURP is? The urinary constriction? Along with getting some of the tumor out?
What am I missing here..? I'm just confused since the treatment being outlined isn't one I've seen before. Is it a "standard of care" treatment? Or is it "hit it with all we've got ASAP" sort of Dr. Kwon treatment?
At diagnosis we were told by MO "triplet therapy" was new standard of care at that time (June 2021). Basically it was explained that its best to "cast the net" wide and kill off the cancer mets then suppress new growth with ADT/2nd Gen ADT (Lupron/Nubeqa) for as long as we can... now 2.5 years later, seeing activity only within prostate gives us a new direction for treatment. Because of urinary frequency and tumor seen in prostate they now are offering referral to Urology-Onc and Rad-Onc for what our MO believes will be TURP to decrease bulk of tumor and improve urinary issues. Then after recovery radiate prostate to prevent further activity.
We are waiting for referral appointments, we don't have details yet. As for "Dr. Kwon treatment" - we have tried to get a 2nd opinion with him and were told because current scans are not metastatic, he isn't taking new patients unless they are currently metastatic.
Current scans - CT and Bone Scan only showed growth in prostate. We hope to get a PSMA scan, MO is letting Uro and Rad onc decide which type PSMA CT or PSMA MRI to order. Want to be sure we are treating all areas of activity and not just playing "wack-a-mole" blindly.
Current treatment is at Fred Hutch Cancer Research Center in Seattle - Our MO is specialized in prostate cancer and has been great. We do feel they are using outdated scans (CT and bone) and have repeatedly asked why we never have had a PET scan (Axiom, Choline, PSMA... anything), she said CT/Bone Scan are standard of care - Not what we are reading with all the discussion boards - feels like Fred Hutch is pretty conservative.
Will update after visits to share what is discussed.
I had a TURP. Aug 2021. 1 day in the hospital with cather 1 day after. A little blood and burning for 2 days. After that I have peed like a 20 year old and still do. Gleason 9. PSA at dx 106. 7 months later I did 44 treatments of IMRT. PSA 3 months later .01I wish you well.
Wow - so good to hear TURP might be what gets the flow going again!
Can you tell me about IMRT - we are new to all of the radiation terms and just beginning to research, there appears to be many types of radiation and we do not know yet (have not met with Rad onc) what type they will suggest.
TURP was a miracle to me. I struggled for many months before everything shutdown. 3 months with a cather. Don't wait to long like I did if your going to do it. I have slight kidney damage from thinking it will go away. IMRT was the only path I could take. It did not spread to LNs as per my PSMA scan. They did the whole pelvic area because of my high Gleason. 4 days of diarrhea during the whole thing for me. No SE effects other than that.
Your RO will steer you down the right path. I took a couple Months to think about it while TURP was healing. You must wait 2 months before radiation.
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