Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young @colleenyoung, Mar 19, 2019

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 had similar numbers to yours in 2016 and after much study, I chose surgery to remove the prostate at Mayo Scottsdale with the daVinci. It went well and the surgeons are great!. There's still a little residual pain, a little leakage on sneezing and ED issues but my PSA remains at zero and my sense of relief is still intense. Anytime you can cure cancer with surgery, you should do so. The alternatives have too many side effects and doing nothing is a big risk that you will progress past the point where surgery can help. Surgery also eliminates the problems related to the prostate and you will have a strong stream In future. Good luck with your decision. Let me know if you have any more questions.

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That's what I'm thinking as well. My wife and kids also think I should get it taken care of. It is frwaking them out that I was told I should wait a bit.

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I have used a number of ED medicine and viagara and other things with limited success. have done caverject which is expensive and now use prosta glanden which is a compound and very inexpensive. know more, let me know…

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@greff

That's what I'm thinking as well. My wife and kids also think I should get it taken care of. It is frwaking them out that I was told I should wait a bit.

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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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@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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