Second cancer = prostate
Hi everyone. New to these discussions. Not sure where to post this but since prostate cancer is my current focus, I’ll start here.
I remain clear of GIST 10 years after having a soft tissue sarcoma removed from my duodenum. Clear margins, all good so far on that front.
Above said, I covered my recent MRI results with my urologist this week and have 3 lesions with PI-RAD of 4 (high likelihood of clinically significant cancer), all around 10 - 13mm. MRI was ordered due to increasing PSA (6.2, not dramatically high but of concern) and trouble voiding/weak stream.
I’m scheduled for fusion biopsy on 12/1 for 15+ cores and my Dr says to expect a finding of cancer, although nothing appears to be outside of prostate - and no observable impact to vesicles or nerve bundles.
My bigger concern is my prior history - I know that GIST and progression to prostate is extremely rare, but I want to ensure someone is looking at the ‘whole picture’ of my cancer(s) and not just the specific instance currently in their sights. Colonoscopies routinely result in sessile serrated polyp removal and I have some observations such as cystic structures in liver and mediastinum which have enlarged to a minor degree but don’t raise alarms in my results. I experience a returned and regular level of general ‘discomfort’ in my abdomen which was my chief complaint resulting in my GIST being detected.
My prior oncologist was world class in my book, but unfortunately he has moved back to Israel and the others in his practice have also moved on, and I’ve not not had the care of a oncologist for 5+ years now. I keep up with my CTs and endoscopies and my GP and GI docs are familiar with my history, but I sense a loss in the level of expertise that I previously benefitted from. My grandfather and his daughter, my aunt, both passed from carcinomatosis and my inner voice says there’s more going on with me than is being actively identified. On lab side, the only real outlier is plasma epinephrine levels are way high but adrenal glands look ok on scan - can’t get an endocrinologist appt until April.
Any thoughts on whether it’s time to head to a regional center of excellence vs the thought of just picking an oncologist with a reasonable rep locally? How to best ID a Dr with a solid track record (x out of y stars in Healthgrades doesn’t do it for me)? Anyone with seconds cancer experience that has any lessons learned that they care to share? Is my current care of leveraging specialists vs oncologist sufficient and maybe I’m just being too worrisome in the eyes of a normal person?
Thanks in advance. I wish you all the best.
Comments
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Well, your lost of confidence in your GP, the situation regarding your family carcinomatosis history and the worrisome regarding the MRI results could be behind the surge in epinephrine levels. That could be a normal body reaction due to stress.
Typicaly you would experience a raising in blood pressure and mental confusion. Also an increase in blood sugar. In one word; "freaking out".
Surely the MRI findings and the high PSA could mean trouble. But the "voiding/weak stream" issue could also mean hyperplasia.
Let's wait for the biopsy results and proceed coordinatly from there.
I wonder your age.
Welcome to the board.
Congratulations on the GIST remission.
Best wishes,
VG
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All I can add is that there is a relatively new kind of prostate biopsy that is well worth considering because it lowers the chance of infection. It's called a transperineal biopsy:
Mayo Clinic Minute: Prostate biopsy technique reduces infection risk - Mayo Clinic News Network
Most urologists will do it 'the old fashioned way' but you should quiz your urologist whether (s)he is able to do it that way. Whatever, the areas identified by MRI should be probed more definitively.
PS: prostate biopsies are usually done by urologists, not oncologists.
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Hi Old Salt -
Thanks for your post. I’ve heard of the procedure you mentioned and will look into it. Agreed on biopsy being done by urologist, my earlier reference was more re: over-arching cancer care but I’ll limit my ongoing posts in this group to prostate. Thanks for taking the time to provide the link!
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