Living with Prostate Cancer: Meet others & introduce yourself

Welcome to the Prostate Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet others living with prostate cancer or caring for someone with prostate cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.

Follow the group. Browse the topics or start a new one.

Let’s start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?

@horace1818

I would not wait. One thing worth doing is to get a genetic assessment of the aggressiveness of your cancer. it is based on outcomes and genetic profiles of thousands of prior cases. It is called Prolaris and you can find details on the Myriad Genetics web site. The read-out is on a scale of 1 to 10, with 1 being benign. My number was 5 which accelerated my surgery decision. Good luck!

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Thanks. I'll check it out.

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@greff

Do you know whether prostate cancer affects the thyroid? My Thyroid hormone level is going low. It went from 4.5 to 3.9

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If you are concerned about your thyroid talk with a Endocrinologist. My thyroid number is 1.54. It did not change during my year of treatment and is still 1.54. So personally I would not worry.

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@greff

I should add that my Gleasen score was a 6. My psa went from 2.8 to 7.31 in a year.

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Hello welcome to the club no man wants to join. I was diagnosed with Prostate cancer Sept 2018 (Gleason 3+4) and had HIFU treatment Dec 2018. Doing very well, absolutely no side effects which is the reason I chose that treatment. If all you have is Gleason 6 (3+3) you should be a good candidate for Active Surveillance. Your rise in PSA could be coming from the Prostatitis. Treatments for prostate cancer cancer are changing rapidly to types that do not effect your sex life or incontinence that is so common with surgery or radiation. If I had my treatment to do over I would now choose a new form of HIFU called TULSA-PRO That other test you mentioned, was it Prolaris, Decipher, or Oncotype? If so it should help in your decision on what to do. I would also recommend you get a prostate mp-MPI as it is becoming the gold standard in diagnosing cancer. Good luck to you Bill

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@horace1818

I would not wait. One thing worth doing is to get a genetic assessment of the aggressiveness of your cancer. it is based on outcomes and genetic profiles of thousands of prior cases. It is called Prolaris and you can find details on the Myriad Genetics web site. The read-out is on a scale of 1 to 10, with 1 being benign. My number was 5 which accelerated my surgery decision. Good luck!

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Thanks for the advice. Alot to think about.

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I just came across this interesting study on Active Surveillance in low risk prostate cancer for anyone with Prostate Cancer lucky enough to have low risk.
https://www.practiceupdate.com/c/96039/1/3/?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_uro&elsca4=urology&elsca5=newsletter&rid=Mjk1NDIzNTkzOTQ4S0&lid=10332481

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@poodledoc

I just came across this interesting study on Active Surveillance in low risk prostate cancer for anyone with Prostate Cancer lucky enough to have low risk.
https://www.practiceupdate.com/c/96039/1/3/?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_uro&elsca4=urology&elsca5=newsletter&rid=Mjk1NDIzNTkzOTQ4S0&lid=10332481

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In June I was diagnosed with low stage prostate cancer I had mostly Gleason scores of six and one of seven I chose to do the optimum surveillance as well at that time I also did some genetic testing that showed that I was low risk I had an MRI done three months ago .
The MRI showed I had two lesions in the lower half of each lobe of the prostate I Promptly had another biopsy That told me one of the lesions was cancerous and the other one was not the biopsy was direct and they took more samples the second time I am now considered a stage 2 intermediate.
II saw that before you have your biopsy consult with your physician about an MRI before I am struggling with the options still looking for trials at this point but I’m told I should move quickly

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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

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@poodledoc

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

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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

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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..

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@marko1

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

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May I recommend that you investigate proton therapy? It is a form of radiation with less healthy cell damage than normal photon radiation. There are dozens of centers around the country that employ it. Read Bob Marckini's book on proton therapy. Best of luck.

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@ken82

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..

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Very similar to my treatment. You are right on the money about a 2nd opinion and going to a world class facility. I went to Moffitt Cancer Center in Tampa. Great place and staff.

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Marko, I agree with Bob that Proton radiation therapy may be your best option, it was actually my second choice after HIFU. I searched for the closest Proton center to Maine and it is in Boston at Proton Therapy Center Massachusetts General Hospital. I would recommend you get another opinion there. Here is a link for other proton centers in the USA. http://proton-therapy-centers.com/

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@marko1

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

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I just checked Dana-Farber in Boston and they do have a clinical study on HIFU See: https://www.dana-farber.org/clinical-trials2/detail/13-184/ there are certain criteria you have to meet to join the study. Let everyone know how your appointment goes with them.

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@ronan2011

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.

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

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@9876

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

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That’s a very good direction to go

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