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?

I understand your anguish since I have been there. No one can make the decision for you and the crude state of our knowledge and therapies complicates the issue. I am happy to help

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@vernonkent, I am away from my Connect neighborhood right now. However, I monitor this subject for my life partner Jay. We are health buddies as well and so attend all medical meetings, treatments, and referrals together. Jay is 75.

When he was 73, and after an MRI biopsy, he came away with a Gleason score of 8 and a strong suggestion that the cancer cells were contained in the prostate. The position of the tumor was very important….which side, top or bottom, etc. especially taking into account the bladder margins. Not to be ignored was the discovery of horseshoe kidneys and disappearing adrenal glands.

Jay and I chatted to make sure we had both heard the same things from the same clinician. Because his father and grandfather had prostate cancer, Jay felt that his number was bound to come up. His father had indicated to Jay, his son, that his life was essentially over when he ran into urinary issues.

Jay made his decision not on what happened to his dad but on what functions he valued the most. He is an outdoorsman we call the "Park Superintendent." He chose surgery. It went well and together we made it through the post-surgery period. Within a few months, he was completely continent and the follow-up tests were looking good. The amazing patient-centered care practiced by Mayo was outstanding.

So now, he is out wrapping bushes for winter and I am on Mayo Connect with you. Good night. Chris

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@horace1818

I faced the same decision as you and Dave in 2016 and chose surgery. It is an intensely personal and emotional decision but here are some of the considerations:
I was Gleason 7 and cancer cells had probably not escaped the capsule; PSA was 12+ and was doubling every year; I was 74 and in good condition with the prospect of many years of life however, I had just watched a close friend die of prostate cancer and it was not pretty. I had to take some action. Review of the literature, especially the Harvard Annual Review of prostate cancer, confirmed that we really don't know much about prostate cancer and that the available therapies were fraught with awful side effects. The available drugs are for advanced prostate cancer and radiation is non-specific and kills all in its path; incontinence and impotence are common and the prospect for a cure much less than with surgery.
The genetic evaluation on my fresh biopsy tissue came out at 5 on a scale of 10 so was not much help (this is based on an algorithm developed by following several thousand men and looking for genes that are common in fatal and recovered cases – the data base is small and so not reliable). So that left surgery or watchful waiting. The trouble with waiting was that if it continued to grow, I would soon be too old for surgery and once it breaks out of the prostate and metastasizes the chance of a cure with existing therapies is low and surgery is no longer an option.
Surgery had a high chance of a complete cure with the downside being possible incontinence and/or a severely impaired sex life. But the alternatives were worse and so, after talking to some men who had done it, I opted for surgery. It was done at Mayo on a daVinci and turned out well. The surgeons were great! I am now 3.5 years post-op with a PSA still undetectable. The cancer seems to be cured but it won't be declared so until 5 years. Adverse effects are some very minor leakage that is easy to manage, an inguinal hernia 4 months post-op (caused by blowing you up with CO2 for the duration of the surgery so the micro instruments can get to your parts) that has been surgically fixed, some ongoing chronic urethral pain (2-3 on the 10 pain scale, can live with it) and ED. The ED is a problem with all surgery and your sex life will never be the same, but it is not bad, just different. You will have to use ED drugs or devices. But I will take that in return for a cure. One bonus is an increased urine storage capacity and a very strong stream; BPH is gone forever!!
Any time that cancer can be cured by surgery, it is a good idea to do it. I like the idea of a long life without prostate cancer.
Hope this helps.

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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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@artscaping

@vernonkent, I am away from my Connect neighborhood right now. However, I monitor this subject for my life partner Jay. We are health buddies as well and so attend all medical meetings, treatments, and referrals together. Jay is 75.

When he was 73, and after an MRI biopsy, he came away with a Gleason score of 8 and a strong suggestion that the cancer cells were contained in the prostate. The position of the tumor was very important….which side, top or bottom, etc. especially taking into account the bladder margins. Not to be ignored was the discovery of horseshoe kidneys and disappearing adrenal glands.

Jay and I chatted to make sure we had both heard the same things from the same clinician. Because his father and grandfather had prostate cancer, Jay felt that his number was bound to come up. His father had indicated to Jay, his son, that his life was essentially over when he ran into urinary issues.

Jay made his decision not on what happened to his dad but on what functions he valued the most. He is an outdoorsman we call the "Park Superintendent." He chose surgery. It went well and together we made it through the post-surgery period. Within a few months, he was completely continent and the follow-up tests were looking good. The amazing patient-centered care practiced by Mayo was outstanding.

So now, he is out wrapping bushes for winter and I am on Mayo Connect with you. Good night. Chris

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@artscaping Thank you for your helpful response. My situation is similar and your experience with surgery is quite helpful as I consider the options. It helps to know someone near my age can have a good active lifestyle after surgery. Much appreciated.

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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.

Liked by dandl48

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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

Liked by dandl48

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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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