Living with Prostate Cancer: Meet others & introduce yourself

Hello Marko, I was in a very similar situation in Sept 2018. There is no rush to do any treatment, do your research and explore all the options. Does your urology group offer anything except surgery or radiation? If you ask and they dismiss anything else as experimental I would recommend you get a second opinion from a group that does offer optional treatments such as HIFU, you could very well qualify for a focal (not whole gland) treatment that would greatly decrease your chances of side effects. Bill

Good morning poodledoc
Thank you for your reply I hope all is well with you

I have researched and researched and researched spoke with doctors twice dealing with the cancer facility here in Maine at Maine medical Center partners good group of people but no they do not do any trials or anything different my options that they have given me a surgery or radiation and I’m having a lot of issues with what my life will be after. I do have an appointment scheduled at Dana-Farber to speak with three physicians they’re on trials on March 11 maybe they will give me some other alternatives I don’t know but I am being told that I should do something before summer my Glisan scores are mainly sevens now with 30% I believe is what they told me hard to take in all of this

I had all the various tests and biopsies to show that I had PC... Mayo MN verified what my local clinic with MRI and etc found. this was just about a year ago in April 2019. Mayo recommended the radiation oncology.. but a shot of Lupron first to shrink the prostate... I had the 20 radiation treatments 2 months after the shot.. The oncologist inserted a spacer material between the bowel and the prostate...to minimize bowel irritation... I still had some but it has been decreasing.. No chemo, no surgery ... feeling good.. Make sure the radiation facility is new and has the latest equipment... the American Cancer Society has a motel like place in Rochester MN where one can stay at no or little cost.. I am sure they have similar facilities around the country...Go to Boston General... or other Top notch Clinics ... Always get a second opinion..

Good morning poodledoc
Thank you for your reply I hope all is well with you

I have researched and researched and researched spoke with doctors twice dealing with the cancer facility here in Maine at Maine medical Center partners good group of people but no they do not do any trials or anything different my options that they have given me a surgery or radiation and I’m having a lot of issues with what my life will be after. I do have an appointment scheduled at Dana-Farber to speak with three physicians they’re on trials on March 11 maybe they will give me some other alternatives I don’t know but I am being told that I should do something before summer my Glisan scores are mainly sevens now with 30% I believe is what they told me hard to take in all of this

Thanks for all the detailed info! As I said in another post, everyone has a different story and different reasons for how they approach treatment and I'm glad you found what worked for you! There is much in your email that has gone into my similar thinking. In particular your little section on radiation and also surgery as a chance of a cure is kind of where I am at on that. I would rather not do anything but unfortunately have passed that stage and can't wait for the next generation cures so have to work with what is here now. I'm Gleason 7 (3+4), and PSA is 8.7 at the latest. I've only gone up about 1 point in the last year which is good but with the Genomic test added they think I should act. I'm about 2/3 up the scale on that......... I've been taking LOADS OF SUPPLEMENTS for a year, some on advice of a cancer naturopath and some from what I've picked up here and there so that may be a factor in the slow rise. Many have been studied with cancer in mind and some have had research studies done and published. In any event even if they are not stopping the cancer, they are really good for the immune system. Naturopath says ALL MUSHROOMS are good (store or wild) (either eaten for the beta glucan or supplements), Stamets 7 has 7 diff. cancer related mushrooms in 1, also Chaga Tea for drinking or Chaga alcohol extract by dropper, Curcumin/Turmeric, Melatonin, POMI-T supplement. The supplements can also be taken continually after to help slow or mitigate future returning cancer. The Naturopath unfortunately does not have a magic cure but works with health and immune system before and after treatment which he also recommends doing.

I had a PSA of 6.7 in Nov. 2018. Biopsy in Dec.2018. I had 17 samples and 5 had cancer. One showed that the cancer was very aggressive. My Urologest recommended surgery. Had surgery March 19, 2019. Surgeon took out limnodes semon vessels. The biopsy on these showed aggressive cancer. Dr. Recommends hormone shots and radiation. Is this the correct decision to make?@colleenyoung

Dave, what type of genomic test did your Dr order? Polaris, Oncotype,etc?