Connect
New diagnosis at 50
Well, I got the news... About 4 weeks ago my Dr told me I had PC. Since then I have, and still go through all the emotions, sad, mad, angry, denial etc... I also have researched my diagnosis, treatment options and next steps(to include reading this forum). I thought I would jump in here with you nice folks instead of just being a tourist. With that being said here is my story. I am 50, My father passed away from PC when he was 72, he was diagnosed at 60 but chose to ignore his disease and also got bad/no info from his provider. My last PSA was 3.9, MRI and biopsy came back with 4/12 cores positive, one less than 10% the other 3 less than 1%, all 3+3 Gleason 6. Had a Polaris report done that puts me at very low risk with a molecular score of 2.2. My Dr is great, and without his proactiveness I probably wouldn't know I had PC. His recommendation is active surveillance, which I fully understand. I don't know if I have the bandwidth to do this.. Im a pretty anxious person by nature so wondering what my cancer is doing seems like a stretch for me. Given my family history I never want to be playing catch up with this disease when I had the chance for probably a cure early. So i'm leaning towards removal, not sure when but in the future. My question(s), Is, am I missing anything? Anybody have a similar story? My Dr said the info that 20-30% of post removal biopsies coming back a higher score is dated and skewed? Feel free to recommend, comment on anything I might have missed etc.. thanks, Pete
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
@mtcoastie
Another thing you could do to give you some comfort would be to both do a decipher and an Artera AI test. They will show the likelihood of you having prostate cancer recurrence if there is really a problem.
I was just speaking to somebody who has large cribriform. His Gleason is 3+4 but very low percentages. Large cribriform can be very aggressive But he’s had both the decipher test which came back very low and an Artera Ai Test, which also came very low showing that his chance of recurrence is quite low, even though he has one aggressive cribriform. He has spoken to almost every major doctor involved in prostate cancer diagnosis and they pretty much agree that he can wait and do active surveillance because the test show a very low chance of his cancer, becoming aggressive soon. He’s going to wait, Get PSA test tests regularly, Get an MRI annually, As well as a PSMA pet test. He doesn’t want to jump into something when it really isn’t necessary yet. He did get the Polaris test and found out that SBRT might not be good but IMRT is OK. This is the type of research some people go to in order to really properly evaluate their chances of the cancer being aggressive now.
My brother was on active surveillance for about six years and at 77 he finally had his PSA rise and the biopsy showed. He was a Gleason 4+3. He had SBRT radiation in three years later he’s doing fine.
Just wanted to give you some other points of view. Those videos are real useful for making decisions, however.
One other thing you could do is get a second opinion on your biopsy. There are expert doctors that can give you more information, Dr. Epstein is one of them. If you pay to have him check your biopsy, he will give you a lot of time on the phone in order to talk about what your options are. Not everyone wants to go this far, but if you are really anxious, this can give you more information to go on.
Dr. Epstein biopsy
https://advanceduropathology.com
Dr. Zhou
Send an email to Ming.zhou@mountsinai.org to inquire about a second opinion and ask for his specific instructions for the process.
-
Like -
Helpful -
Hug
1 ReactionIn 2014, I started off with PSA of 4.5, Gleason 6 in biopsy cores, and active surveillance. I didn’t feel entirely comfortable with that, so in early 2015, I went for a second opinion and a second biopsy. More cores had cancer, and the highest Gleason score was 3+4. In April 2015, I had a RARP. My pathologic stage was pT2C, my maximum Gleason was still 7 (3+4), and I had a positive margin on the Right Apex. My Prolaris score was 1.7 and I had a 10-year risk of Biochemical Recurrence of 53%. My urologist/surgeon at the time remarked, ‘we didn't act too soon’. So, within the span of a year my status went from “go have a nice life, something else will kill you way down the line” to “I hope we got it all and we’re gonna keep a close eye”.
And ten years later (this past June), I was diagnosed with a local recurrence, with a PSA of 0.11 (had been undetectable for ten years). Just finished 8 weeks of radiation therapy, hoping once again that I’ve knocked it out.
Moral of the story: If I had not gone for the second opinion, I likely would be telling a very different story today, or perhaps not telling any story at all. Instead, I had a good ten years run after initial treatment, with a good shot at many more good years to go my recent radiation therapy.
Maybe active surveillance is the way to go for you, but right now you have the favor of time. A second, and even third opinion, seems like a good idea.
Best wishes for moving forward. Early detection gives you lots better options. Diagnostic tools and treatment options are vastly better than they were ten years ago, and continue to improve. Still tough decisions indeed. We’re with you.