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?

Interested in more discussions like this? Go to the Prostate Cancer group.

Hi, my name is Dave and I'm new to this group but have been on the Barrett's Esophagus page for a few years. I live in an area of Oregon that only has 1 Urologist in 70+ square miles and he should have retired years ago. I'm might be jumping the gun here since I've yet to get a Gleason score since my previous MD who did the biopsy took only 8 cores, none came back positive but all showed HGPIN. Following the Mayo MD's recommendations to my questions on the video chat recently and since my PSA # is 17 and my Free PSA # is 6 I got a contrast MRI which showed a Lesion of 2.2 x 1.1 x 1.5 cm. In the Radiological report, it states the PI-RADS v2 Assessment Category: 5 Very high (clinically significant cancer is highly likely to be present). My new Urologist (70 miles away) has since scheduled me for a Fusion (MRI Guided) biopsy for next Wednesday. The new practice has a # of Urologists but they primarily operate and if I choose an operation I would rather go to large Medical Center; but my question for the group is what happens if I do travel and complications happen after the operation would I have to return to the operating hospital which would be at least a 7 hr trip? Who has traveled to get an operation many miles and what did you do for followup? Because of this I'm leaning toward one of the radiation cures since from what I can tell there are much fewer after treatment complications. Thoughts anyone. Thanks in advance, one stressed out Dave

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Hi, Day 1 for me post biopsy result…with cancer diagnosis of Gleason 6 at age 52. I am reading about how 6 is low risk, but that 50% of Gleason 6s turn out to be higher. I am looking for information on Molecular Tests, Genetics, or other things I can do to avoid risk of it being more aggressive or metastasizing if I choose "Active Surveillance".

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@dandl48

Hi, my name is Dave and I'm new to this group but have been on the Barrett's Esophagus page for a few years. I live in an area of Oregon that only has 1 Urologist in 70+ square miles and he should have retired years ago. I'm might be jumping the gun here since I've yet to get a Gleason score since my previous MD who did the biopsy took only 8 cores, none came back positive but all showed HGPIN. Following the Mayo MD's recommendations to my questions on the video chat recently and since my PSA # is 17 and my Free PSA # is 6 I got a contrast MRI which showed a Lesion of 2.2 x 1.1 x 1.5 cm. In the Radiological report, it states the PI-RADS v2 Assessment Category: 5 Very high (clinically significant cancer is highly likely to be present). My new Urologist (70 miles away) has since scheduled me for a Fusion (MRI Guided) biopsy for next Wednesday. The new practice has a # of Urologists but they primarily operate and if I choose an operation I would rather go to large Medical Center; but my question for the group is what happens if I do travel and complications happen after the operation would I have to return to the operating hospital which would be at least a 7 hr trip? Who has traveled to get an operation many miles and what did you do for followup? Because of this I'm leaning toward one of the radiation cures since from what I can tell there are much fewer after treatment complications. Thoughts anyone. Thanks in advance, one stressed out Dave

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Hi Dave, I'm also from Oregon, Salem area, and my 8 core biopsy did show a sample with Gleason score of 8. Based on readings, I also determined that being treated at a cancer center would give best chance of success. In Oregon that would be OHSU, but they didn't perform Proton beam radiation, my choice. So, I chose Phoenix Mayo Clinic. We happen to have a winter home there, but they have apartments available for no cost to patients. We met some patients who stayed there and seemed a good option for people from out of town. Most centers will help find housing. I checked with Seattle and Loma Linda who had staff to help with housing. Radiation treatments can take up to 9 weeks so housing is necessary. My treatment was 4 weeks and Mayo has done some trials with 5 treatments over two weeks that show good results. Number of treatments depends on your diagnosis. Those who I met with longer treatments had the cancer spread outside the prostrate. They have a team that reviews your data and recommends treatment option.

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@dandl48

Hi, my name is Dave and I'm new to this group but have been on the Barrett's Esophagus page for a few years. I live in an area of Oregon that only has 1 Urologist in 70+ square miles and he should have retired years ago. I'm might be jumping the gun here since I've yet to get a Gleason score since my previous MD who did the biopsy took only 8 cores, none came back positive but all showed HGPIN. Following the Mayo MD's recommendations to my questions on the video chat recently and since my PSA # is 17 and my Free PSA # is 6 I got a contrast MRI which showed a Lesion of 2.2 x 1.1 x 1.5 cm. In the Radiological report, it states the PI-RADS v2 Assessment Category: 5 Very high (clinically significant cancer is highly likely to be present). My new Urologist (70 miles away) has since scheduled me for a Fusion (MRI Guided) biopsy for next Wednesday. The new practice has a # of Urologists but they primarily operate and if I choose an operation I would rather go to large Medical Center; but my question for the group is what happens if I do travel and complications happen after the operation would I have to return to the operating hospital which would be at least a 7 hr trip? Who has traveled to get an operation many miles and what did you do for followup? Because of this I'm leaning toward one of the radiation cures since from what I can tell there are much fewer after treatment complications. Thoughts anyone. Thanks in advance, one stressed out Dave

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I am from Canada and travelled to the USA for Sn alternate treatment Focal Laser Ablation bybthe Sperling Clinic. I did not like the proposed treatments surgery or radiation. No treatment is a 100% cure. My focus was my quality of life. I am 72 and if I have 10 good years, I am happy. With surgery or radiation there is no guarantee however in my view the risks were greater than the reward. It is an individual. Choice all my decisions were based on quality of life after treatment. I also did research on Rick Simpson Oil (marijuana oil) “Phoenix Tears “ strain and followed his 90 protocol. It was not difficult and it has made me feel good. I also used Metformin ( you can research it). It’s a very safe inexpensive diabetic drug which recent studies showed success with cancer. I am presently taking Lupron my PSA is now .2

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@waynen

Hi Dave, I'm also from Oregon, Salem area, and my 8 core biopsy did show a sample with Gleason score of 8. Based on readings, I also determined that being treated at a cancer center would give best chance of success. In Oregon that would be OHSU, but they didn't perform Proton beam radiation, my choice. So, I chose Phoenix Mayo Clinic. We happen to have a winter home there, but they have apartments available for no cost to patients. We met some patients who stayed there and seemed a good option for people from out of town. Most centers will help find housing. I checked with Seattle and Loma Linda who had staff to help with housing. Radiation treatments can take up to 9 weeks so housing is necessary. My treatment was 4 weeks and Mayo has done some trials with 5 treatments over two weeks that show good results. Number of treatments depends on your diagnosis. Those who I met with longer treatments had the cancer spread outside the prostrate. They have a team that reviews your data and recommends treatment option.

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@waynen Thanks for the response! As I said in a previous post, my MRI Guided (Fusion) Biopsy is scheduled for 11/20 and I hope to have a clearer idea to what is available to me on 12/4. A question for you; will you be returning to Phoenix for follow-ups after the Proton Beam radiation or will you be using your Urologist in the Salem area? My first choice would be to go the Mayo Rochester since I'm familiar with them due to my experience with them with my Barrett's Esophagus, but if the procedure/operation requires multiple followups in Rochester that wouldn't work due to the cost.
Thanks again, dandl48 Dave

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@semeon

I am from Canada and travelled to the USA for Sn alternate treatment Focal Laser Ablation bybthe Sperling Clinic. I did not like the proposed treatments surgery or radiation. No treatment is a 100% cure. My focus was my quality of life. I am 72 and if I have 10 good years, I am happy. With surgery or radiation there is no guarantee however in my view the risks were greater than the reward. It is an individual. Choice all my decisions were based on quality of life after treatment. I also did research on Rick Simpson Oil (marijuana oil) “Phoenix Tears “ strain and followed his 90 protocol. It was not difficult and it has made me feel good. I also used Metformin ( you can research it). It’s a very safe inexpensive diabetic drug which recent studies showed success with cancer. I am presently taking Lupron my PSA is now .2

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@semeon Thanks for your response but the treatment you received, FLA, isn't currently covered by Medicare and I can't afford to go outside of Medicare.
@dandl48 Dave

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@dandl48

@waynen Thanks for the response! As I said in a previous post, my MRI Guided (Fusion) Biopsy is scheduled for 11/20 and I hope to have a clearer idea to what is available to me on 12/4. A question for you; will you be returning to Phoenix for follow-ups after the Proton Beam radiation or will you be using your Urologist in the Salem area? My first choice would be to go the Mayo Rochester since I'm familiar with them due to my experience with them with my Barrett's Esophagus, but if the procedure/operation requires multiple followups in Rochester that wouldn't work due to the cost.
Thanks again, dandl48 Dave

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Yes, I spend about 6 months in Phoenix area and have an appointment twice a year to check PSA and bone density (for Lupron treatment). Those are things that you can have checked locally and share with them. I share my results with Oregon doctors. They have patients from all over the world. I'm sure they can accommodate the distance.The only issue would be if your PSA starts rising again. They would probably have you do a choline C11 pet scan to find any cancer cells in your body. If you have more cells, treatment would follow.
The staff at the Phoenix Mayo are great to work with and are open to whatever you want. They're probably comparable to Rochester's staff. The best of luck to you. After you make your decision, don't look back.

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@waynen Thanks so much for your encouragement! Now if I can only last 3 weeks until I get the results; the waiting is the worst.

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Yes, it is. I had to wait over a week to get biopsy results. Longest week of my life. Things moved fast after Mayo accepted me. Met with my doctor less than a week later.

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@crozi01

Hi, Day 1 for me post biopsy result…with cancer diagnosis of Gleason 6 at age 52. I am reading about how 6 is low risk, but that 50% of Gleason 6s turn out to be higher. I am looking for information on Molecular Tests, Genetics, or other things I can do to avoid risk of it being more aggressive or metastasizing if I choose "Active Surveillance".

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Hi @crozi01, welcome to Connect. @peekaafighter talks about Active Surveillance or watchful waiting in this discussion:
– PSA Doubling Time Under Active Surveillance https://connect.mayoclinic.org/discussion/psa-doubling-time-under-active-surveillance/

You might also be interested in this:
– Video Q&A about Cancer and Genetics https://connect.mayoclinic.org/webinar/video-qa-about-cancer-and-genetics

Hearing the diagnosis of cancer is a tough blow. How are you doing today?

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@waynen

Yes, it is. I had to wait over a week to get biopsy results. Longest week of my life. Things moved fast after Mayo accepted me. Met with my doctor less than a week later.

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@waynen Did you contact Mayo directly or did you have your MD in OR do it?

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@waynen

Colleen asked about side effects. The hormone therapy does result in hot flashes, mine weren't as bad as some others. It also weakens bones, requiring taking calcium. It can increase breast size, but mine didn't change much. It also affects sexual ability. Fatigue was probably the most noticeable.

For radiation, the urethea is going to get hit. It will affect urination. Pain when urinating and urgency are the two most serious issues. They reduced the effects with Aleve and Flomax. The side effects from radiation are gone now.

Long term, all side effects should be gone. One advantage of Proton Beam Therapy is that it limits tissue damage, so only the prostrate got hit with the beam. The good cells will regenerate, but not the cancerous.

Also, during treatment I was able to continue normal activity, which is what they encourage.

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I have a good friend who just did the hormone and radiation therapy after previously having had surgery to take out the prostate. He was expecting various consequences but said that the hormone therapy did not produce the hot flashes as expected, so effects can vary for different people.
Since your last post on the Proton Beam radiation was 8 months ago I'm wondering if you have anything to add about early or long term side effects and if you still think the Proton Beam was a good protocol for you. I have been leaning .toward surgery but i see a lot of men that have opted for radiation therapy…….

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