Did you choose active surveillance? Why was it a good choice?
Biopsy showed 3 + 4 MRI showed pirad 2 bone scan CAT scan no metastasism nothing found. psma pet scan radiologists said nothing found. but oncologist says he saw a very small spot. Only concern was half of the cores showed 3 + 4 out of 12 but he said it does not show the percentage of four?? Not sure I understand this part. Told me I could do active surveillance or cyber knife or brachytherapy. I think I am going to go with active surveillance my Medicare plan I can change next year to an advantage will cover more of the cost I have original Medicare now. Can I get some opinions on active surveillance being a good choice? Thank you in advance
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Biopsies are only partial results. They may hit all cancerous spots during it or they may miss a bad spot somewhere. You might ask for a Decipher test, which analyzes the tissue samples to see if it's worse than the biopsy is revealing.
I was also 3+4 and recommended for active surveillance util the Decipher said it was 0.68 - meaning high risk, then I immediately went from active surveillance to treatment. And I had fewer 3+4 cores than you.
The fact that half of your cores, that they sampled, had a 3+4 means you need to do something. Active surveillance is not for you when you have that many positives. You could go a couple of months on active surveillance, but your cancer will almost definitely get worse, waiting frequently results in a higher Gleason scores and a more aggressive cancer.
You want to get a decipher score? Talk to your doctor and tell him that’s what you’d like to get. That will give you another idea about how aggressive your cancer could be and how quickly it could metastasize. That would be a major factor in any decision to go on active surveillance.
Get a second opinion on that PSMA pet scan. You don’t want to just have one doctor’s opinion saying there may be something on the test that the other doctor didn’t see. PSMA pet tests are hard to read so you want an Expert looking at your pet scan.
The treatments the doctor recommended could be good options, You need to speak to a radiation oncologist about those choices, There are other treatments that don’t require radiation, the other options to look into are HIFU, cryotherapy, and TULSA-PRO, they are three non-radiation options.
I have been to two urologist and two oncologist first urologist I went to for a year I just didn't like him so I changed second urologist said I can do active surveillance. Two oncologist I went to. First one never had all the results at that time I saw him he suggested I get the psma PET scan because of the other scans showed nothing. second oncologist . He said I can go on active surveillance yesterday till next year October November without any problem. Reiterated that he felt there was very little grade 4 involved. But he suggested to rethink that in October decipher score is 0.41 which is low but almost intermediate intermediate I believe is 0.45 and below is considered low.
I agree with jeffmarc. Rather than active surveillance , I would be doing all the testing you can to at least have a better educated path forward. I take you dont have a supplement plan with your medicare? My plan F picks up everything. Make sure switching to an advantage plan is good idea. Mayo Phoenix will not take advantage plans.
It's not really the Medicare I can afford to pay the 20%. That was the doctor's suggestion since he didn't think it was aggressive I could wait to open enrollment next year. The true issue is probably I'm not excited about side effects. I know that all the scans MRI PET scan CAT scan and bone scan are all negative. I know the biopsy only showed half my prostate was affected. And my PSA is 4.5 I'm in my late 60s and decipher score is 0.41 which is low. My main concern is side effects. Of course I would take the side effects to the alternative but at the same time if it's not showing up on any scans it's not aggressive at 3 + 4 I wouldn't think? Especially if they can't see it to even treat they'd have to wipe out the whole gland at this point because they can't see it when all they've really know is this on the right side and can't be seen on scans. But maybe I'm thinking wron why not just watch it. With PSA test every 5 6 months and a biopsy. But I do know that at some point I'll have to end up treating it. Most likely.
Considering you already have a Gleason 3+4 a 6 month PSA test may not be appropriate. You should probably get three months tests because with half your cores positive it could grow a lot faster than you would hope.
Urologists are not really the specialist in prostate cancer, They do the surgeries and the Initial diagnosis, but it is difficult to completely trust them for advice. If you want to a center of excellence where they have multiple doctors reviewing your situation, you might get different answers. Finding a Genito urinary oncologist, the ones that specialize in prostate cancer, might tell you recommendations that are quite different. One of the doctors in a recent Ancan.org Meeting talked about how his urologist told him he was just fine, as his PSA was rising. By the time the doctor finally had him get a biopsy his cancer had spread a lot. You may not have a lot of 4’a but you have a lot of cores with cancer, That is a factor that should be considered.
You could have one of those other treatments I mentioned, you might want to look into that.
Once you have a fair amount of 4, think about Tulsa Pro, as 4 won't go away and it might stay dormant or might not.
My experience
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/
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Tulsa where to get
https://tulsaprocedure.com/find-a-tulsa-pro-center/
https://tulsaprocedure.com/
If wondering about Tulsa Pro from a science point of view, here is a basic Tulsa science overview article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9231661/
Conclusions:
“As an alternative to conventional treatments, TULSA is safe and effective for prostate tissue ablation in men with primary PCa. There is also evidence that TULSA delivers effective relief of urinary symptoms while treating PCa in a single, low-morbidity procedure. The likelihood of freedom from additional treatment or potency preservation is associated with the planned ablation fraction.”
Personally I would have no problem waiting if PSA and decipher is low and nothing visible on MRI (assuming latest machine). Quarterly psa tests and a yearly MRI is probably what I would do and in fact did do something similar.
Your PET scan is also clear, right? There are a lot of treatment choices out there and the longer you can wait, the more there will be.
I agree with all comments. Being in your late 60's, sounds like you are healthy otherwise, there are very reasonable chances are that you'll need to deal with the prostate cancer eventually. Based on your inputs, I would encourage you to give yourself some breathing room but also some intentional thought process about the side effects of the the various treatment methods, and in doing so, also embrace the uncertainty of each treatment method.
Yes I appreciate that I am in good health beside my prostate cancer. But I would never just ignore it I would go in for PSA test probably more often than I should I would make appointments see what happens next year my PSA starts going up before hand. Especially if they detected anything on any kind of scan most likely they would look at an MRI again. Thank you