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my prostate cancer

woolcotton profile image
19 Replies

Diagnosed in November 2022. Favorable intermediate with Gleason 6 & Gleason 7 (3+4), with 4 less than 5%, and low Decipher score. On AS. 13 months later, one year MRI showed “concerning” images, with irregular capsule (visible), and extra capsular extension probable (interpretation from radiologist). Tumor supposedly doubled in size. Biopsy results showed 6 Gleasons, all 6s, on both sides of the prostate, out of 12 samples. No 7 to be found. Decipher low risk. My urologist was very concerned about the MRI, maybe not as concerned after biopsy, and after Decipher results, mentioning AS as an option again. In the meantime, I saw a radiation oncologist that the urologist suggested, and a second RO that I liked from a year ago, and they both had very opposite views. One wants to treat it with HDBT and 5 rounds of Cyberknife, the other would do MRI guided radiation, but doesn’t think it needs treatment yet. One saying to treat it before it’s too late, the other saying AS is fine. I will see my urologist in a few days from now. He is a surgeon, at what I consider a top place in NYC. PSA has gone from 8.8 to 6.9 ( with 4K back in October of 22), to 5.06 to 5.25 to 4.85 to 5.08 as of a week ago. (The last one done not even 2 months after this last biopsy, but as part of a genetics research that I was asked to do). I consider this confusing, since on paper it looks ok, but not on imaging. I was told a year ago that I would have to treat it down the road, but I wasn’t expecting these results so fast, and possibly treating it.6s supposedly don’t spread. It seems like a guessing game at this point, and no one seems to come up with an answer about the irregularity to the capsule, other than maybe scar tissue from previous biopsy. I may be the case that went off. Anyone with similar story? Thank you and sorry for the long story.

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19 Replies
Granolaberry profile image
Granolaberry

I am glad I just treated mine. I was on AS for two years and low decipher. Had MRI and biopsy in January that showed small about of 3+4. I just had surgery and I am glad! post surgery pathology showed Intraductal which could have gotten worse.

woolcotton profile image
woolcotton in reply to Granolaberry

Thank you. Glad that surgery worked out for you. It seems that surgery is the only way to really know what’s happening.

woolcotton profile image
woolcotton in reply to Granolaberry

Forgot to ask about possible side effects. If you had any.

Tall_Allen profile image
Tall_Allen

Remember that MRI only shows suspicion of cancer, not actual cancer. Some benign prostate conditions look suspicious on MRI. AS is still a viable option for you. Next year, you should have another MR-targeted biopsy. When you do, you may want to ask the urologist to take a core through the capsule where it seems to be bulging:

prostatecancer.news/2020/04...

woolcotton profile image
woolcotton in reply to Tall_Allen

thank you for your response and the info. I did ask before the biopsy about sampling the capsule, and he mentioned that he tries to get as close as possible. I will see him next week with many questions. Thanks again.

allie2020 profile image
allie2020

My thought is that you could have another 4K Score test, it's been 17 months. Mine came back at 32 and after RP, I had 3+4, not a lot of 4. I had two PIRADS 4 lesions on my MRI. I had 3 cores out of 12 that were 3+4 on my biopsy. I'm glad I had my surgery when I did in 2018. But, every case is so different. The MRI makes it confusing but it cannot diagnose cancer. I was talking with a retired doctor friend yesterday at the gym and he said, "the majority of things in medicine are not black or white but grey."

JRLDH profile image
JRLDH

That's the thing with this cancer. The biopsies aren't exhaustive so one time you get 3+4, the next time the needle is somewhere else in your prostate and it's 3+3.

Treatment is likely to have pretty significant side effects that hit at the core what it means to be a man so over-treating an indolent 3+3 is not attractive. But is it really just a 3+3? If it was a 4 before, it very most likely didn't regress by itself.

There's also a legal concern. My urologist made sure to include language that I have a serious cancer, even though mine is just 3+3 in one core, and that death is a possible outcome if I go on Active Surveillance, in case oops, there was more aggressive cancer that they didn't find and it spreads.

With serial MRIs that show progression, I'm pretty sure a healthcare provider is going to be antsy suggesting doing nothing because if that spreads and you are going into cancer whack-a-mole, they don't want to be held responsible.

It's a cancer so it has the potential to wreak total havoc.

maley2711 profile image
maley2711 in reply to JRLDH

Uh, death is a certain outcome for all of us, and no guarantee on any treatment either. Please look at 2 nomograms you can find for prostate cancer on the Memorial Sloan Ketting website....Google. The 1st monogram shows "cure "probability results for your pre-RP diagnostic data, and the 2nd is a life expectancy nomogram for men with same diagnostic data who chose to wait and watch.....no initial treatment.

My guess is that the results might surprise you...or not?

woolcotton profile image
woolcotton in reply to maley2711

Thank you. Will look at it.

woolcotton profile image
woolcotton in reply to JRLDH

That is true, and there are also the ones with their interests first. But I have been lucky to find some honest ones that suggested treatment, if I wanted it, that was not their specialty. Still hard to decide on treatment when the day comes. Thanks for monograms. Will look at them.

RJAMSG profile image
RJAMSG

I think the T3 MRI can make a big difference, my MRI was a T1 (not as strong) and it had me at PIRAD 1 with no suspicious anything. 4K was suspicious and PSA’s running on the 4-5 range. Biopsy at Johns Hopkins showed 4+3, surgery changed it to 3+4 with 10-20% pattern 4 but high decipher, so go figure

woolcotton profile image
woolcotton in reply to RJAMSG

Thank you for this

PTvsPC profile image
PTvsPC

My case is VERY similar to the OP. I was diagnosed with 3+3 back in 2017. 5 years later, after an MRI guided biopsy, it was upgraded to 3+4. Epstein gave a second opinion on the slides and said the 4 is less than 5%. I asked him how much less than 5% and the reply was that it doesn't matter - it's essentially negligible. He said in my situation, a strong case could be made for continued AS as long as I watch it carefully and there are no sudden changes. I'm 59 and I don't think I want a quality of life change at this point.

I've had several friends/colleagues who did the "right" thing - various treatments with follow-up radiation, etc. They have all passed. I'm not in-love with the chances of recurrence after RP or other treatments.

I've also made some major life changes which may or may not be helping in terms of cancer. They include switching to a 100% plant-based diet, rigorous exercise, lower stress, etc. There's no way to make a study out of just my situation since I can't be my own control, but I will say that my overall health has improved substantially.

My original urologist initially wanted me to have treatment (when it was 3+3). His opinion was that it will kill me in 20 years and do I want to die at age 72? He suggested that since I was young, I would be able to recover from RP fairly well and I'd be cured. I wasn't convinced of the "cure" promise considering the chances of recurrence. Mortality rates for men in my situation with treatment vs AS over 5, 10 and 15 years is nearly identical as of my last research session. For me, when I factor in the quality of life, my lifestyle changes and the emergence of new treatments coming down the pike, it's been a no-brainer for me to wait/watch. If I see the cancer growing, I'll change my opinion on a dime, however.

woolcotton profile image
woolcotton in reply to PTvsPC

You sound like me. Same changes, although I considered myself healthy before all of this, I went harder with it. Whatever little pains I had once in a while, are gone. The thought of side effects makes not want to do something, because is the cure real? So many people I know with issues post treatment. I have been lucky with doctors, except for a few that had their interests before mine, that have been honest as

woolcotton profile image
woolcotton in reply to PTvsPC

As far as what to do if I wanted treatment. My surgical oncologist suggested, for my case, Brachytherapy over surgery because of the possible side effects from surgery. I guess, when big changes come, then we’ll see. Like you, I’m happy with this quality of life. Thanks for taking the time.

PTvsPC profile image
PTvsPC

You're welcome. Just stay diligent with it. We'll all keep an eye on new treatments that show promise.

Don717 profile image
Don717

Fair amount of 3+3 with that percentage of pattern 4, low decipher?....I wouldn't hesitate to kick the can down the road a bit. Keep and eye on PSA's every 6 months and MRI's every year. Good luck to ya!

woolcotton profile image
woolcotton in reply to Don717

Yes, I plan to keep doing what I’m doing, and checking for changes. Looking at your PC, can I ask where you had your surgery? I have family members and friends dealing with issues 1-2 years after surgery. Thanks for responding also.

Don717 profile image
Don717 in reply to woolcotton

UPMC Harrisburg PA, Dr Christopher Moyer. I'm very pleased with my results. The hospital was excellent as well!!

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