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?

thanks very much.

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Hello, all. I was diagnosed with low grade PC in 2015. PSA was about 5.7, I think. Gleason was 3+4. Urologist supported active surveillance strategy. Due to several factors, I missed a couple of follow up appointments, so my surveillance was more like passive avoidance. Late last fall, my general practitioner ordered a PSA. It was 9.1. Urologist asked for another PSA test and it was 9. Digital exam showed some evidence of abnormality.

I am waiting for the next steps. The Urologist ordered a bone scan just to be safe. That was clear. Now, he has me considering focused radiation vs. robotic removal. Since it has been 6 years since a biopsy, I wonder whether that should be done again.

A good friend went through the 40 visits of radiation for his followed by Lupron. He thinks this is a better option than the removal. But I have a long history of ulcerative colitis and I have read a couple of articles that suggest those with IBD can have complications from the radiation. All of this is so confusing, and I'm not sure what to do.

It turns out that I several of my friends have had to deal with PC. One with chemo (his cancer had spread), one with robotic surgery, and one with the radiation.

I look forward to any insights that i might gain from reading the comments on this site.

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@mbartosch

Hello, all. I was diagnosed with low grade PC in 2015. PSA was about 5.7, I think. Gleason was 3+4. Urologist supported active surveillance strategy. Due to several factors, I missed a couple of follow up appointments, so my surveillance was more like passive avoidance. Late last fall, my general practitioner ordered a PSA. It was 9.1. Urologist asked for another PSA test and it was 9. Digital exam showed some evidence of abnormality.

I am waiting for the next steps. The Urologist ordered a bone scan just to be safe. That was clear. Now, he has me considering focused radiation vs. robotic removal. Since it has been 6 years since a biopsy, I wonder whether that should be done again.

A good friend went through the 40 visits of radiation for his followed by Lupron. He thinks this is a better option than the removal. But I have a long history of ulcerative colitis and I have read a couple of articles that suggest those with IBD can have complications from the radiation. All of this is so confusing, and I'm not sure what to do.

It turns out that I several of my friends have had to deal with PC. One with chemo (his cancer had spread), one with robotic surgery, and one with the radiation.

I look forward to any insights that i might gain from reading the comments on this site.

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HI,
Let me share my experience, which may have no bearing on your decision process. At 47 I had a PSA of 7, which suggested surveillance. By the next year it rose to 9 (rule of thumb is PSA should not be higher than the 1st digit of your age). And I was only 48 so an unreasonable reading would have been 4 to 6. Thus began biopsies every 6 months which were negative. By the time I was 50 the biopsies were every 3 months and my PSA was now 14. The last biopsy was positive in one sample, so I went ahead with the RPA surgery. The work-up included full body scan before the surgery. The cancer was contained within the gland and no lymph nodes were positive.
I am now 75 and PSA still below below .1. Looking back, by the time I was scheduled for the last biopsy I was feeling like a hunted animal, and told my wife that I wasn’t going to have any more biopsies. I insisted that the doctor was a hunter and I was the game.
Some things to consider: 1) Any history of urinary infection? This can affect PSA readings. 2) Do you hard exercise on a bike which can also aggravate the prostate gland? 3) Do you have a genetic history where a parent or grandparent had known prostate cancer? In my case all my relatives Dad and uncle were diagnosed with elevated PSA, but died from other causes.
Deciding which coarse of treatment is difficult due to provider bias. If the urologist is a surgeon, then surgery is the recommendation and if they are not then radiation may be the recommendation. Remember my data points were in 1995 and I suspect there have been improvements in treatment. Again, at the time of my treatment the post surgical problems of impotence and incontinence were the same after 2 years as far as the number reported. When it comes to treating cancer with an unknown rate of spread I believe that treatment should not be avoided. I can appreciate the roller coaster ride you are on as you face this very difficult decision. Best wishes, Keith

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@mbartosch

Hello, all. I was diagnosed with low grade PC in 2015. PSA was about 5.7, I think. Gleason was 3+4. Urologist supported active surveillance strategy. Due to several factors, I missed a couple of follow up appointments, so my surveillance was more like passive avoidance. Late last fall, my general practitioner ordered a PSA. It was 9.1. Urologist asked for another PSA test and it was 9. Digital exam showed some evidence of abnormality.

I am waiting for the next steps. The Urologist ordered a bone scan just to be safe. That was clear. Now, he has me considering focused radiation vs. robotic removal. Since it has been 6 years since a biopsy, I wonder whether that should be done again.

A good friend went through the 40 visits of radiation for his followed by Lupron. He thinks this is a better option than the removal. But I have a long history of ulcerative colitis and I have read a couple of articles that suggest those with IBD can have complications from the radiation. All of this is so confusing, and I'm not sure what to do.

It turns out that I several of my friends have had to deal with PC. One with chemo (his cancer had spread), one with robotic surgery, and one with the radiation.

I look forward to any insights that i might gain from reading the comments on this site.

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I strongly suggest you get Robert Marckini's book: "You Can Beat Prostate Cancer And You Don't Need Surgery to Do It." Make sure it is the 2020 edition. Take control of your plans yourself. Do not take the first counsel you get from a medical professional, deferring to his or her expertise. Do your research, and then decide on the course of action best for your circumstances. That is what I did and am happy I followed Marckini's advice. Best of luck.

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@mbartosch

Hello, all. I was diagnosed with low grade PC in 2015. PSA was about 5.7, I think. Gleason was 3+4. Urologist supported active surveillance strategy. Due to several factors, I missed a couple of follow up appointments, so my surveillance was more like passive avoidance. Late last fall, my general practitioner ordered a PSA. It was 9.1. Urologist asked for another PSA test and it was 9. Digital exam showed some evidence of abnormality.

I am waiting for the next steps. The Urologist ordered a bone scan just to be safe. That was clear. Now, he has me considering focused radiation vs. robotic removal. Since it has been 6 years since a biopsy, I wonder whether that should be done again.

A good friend went through the 40 visits of radiation for his followed by Lupron. He thinks this is a better option than the removal. But I have a long history of ulcerative colitis and I have read a couple of articles that suggest those with IBD can have complications from the radiation. All of this is so confusing, and I'm not sure what to do.

It turns out that I several of my friends have had to deal with PC. One with chemo (his cancer had spread), one with robotic surgery, and one with the radiation.

I look forward to any insights that i might gain from reading the comments on this site.

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I can understand your dilemma. It's been 2.5 years since my diagnosis. I had a PSA of 4.9 at the time of my biopsy. My urologist found a sample with a 4+4 Gleason score. That's considered high risk. My treatment was at Mayo and there was a big difference between treatment for high risk from moderate. If I were you, I would have another biopsy to determine the level of the cancer.

I chose Proton Beam radiation because it will cause less tissue damage. The main difference between treatment for moderate and high risk is the use of Antigen Deprivation Therapy like Lupron. There actually are alternatives to Lupron now that might be better, including a pill form that acts faster and shortens time of recovery.

The Lupron was used to shrink the prostrate and kill any cells that might be floating around your system. What caught my attention the most was the research that said my chance for survival improved from 60 to 80 percent with the use of Lupron with the radiation. I met a number of guys at Mayo who had moderate risk cancer who didn't take Lupron. That's a big deal not having to take Lupron. The side effects of Lupron are bearable, but if you don't have to go through it, I wouldn't.

Good luck through your journey.

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@mbartosch

Hello, all. I was diagnosed with low grade PC in 2015. PSA was about 5.7, I think. Gleason was 3+4. Urologist supported active surveillance strategy. Due to several factors, I missed a couple of follow up appointments, so my surveillance was more like passive avoidance. Late last fall, my general practitioner ordered a PSA. It was 9.1. Urologist asked for another PSA test and it was 9. Digital exam showed some evidence of abnormality.

I am waiting for the next steps. The Urologist ordered a bone scan just to be safe. That was clear. Now, he has me considering focused radiation vs. robotic removal. Since it has been 6 years since a biopsy, I wonder whether that should be done again.

A good friend went through the 40 visits of radiation for his followed by Lupron. He thinks this is a better option than the removal. But I have a long history of ulcerative colitis and I have read a couple of articles that suggest those with IBD can have complications from the radiation. All of this is so confusing, and I'm not sure what to do.

It turns out that I several of my friends have had to deal with PC. One with chemo (his cancer had spread), one with robotic surgery, and one with the radiation.

I look forward to any insights that i might gain from reading the comments on this site.

Jump to this post

I would talk to a radiation Oncologist in addition to the urologist. I'm 72 my PSA was 11.2 and my Gleason was 4 + 3. In July I went to Mayo, Rochester and met with both departments and decided to go with SBRT 5 treatments in 10 days. I chose radiation over removal because I didn't want to risk incontinence. In July I started on Eligard, an ADT to shrink the prostate, cutting off testosterone starving the cancer. In September I had the radiation and the only side effects were from the Eligard, Hot Flashs and night sweats plus needed Flomax for about 3 weeks. Returning to Mayo this mid-March to meet with my radiation Oncologist for a 6-month follow-up. Good luck to you.

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@semeon

Well good luck with everything. Since they are doing an MRI guided biopsy I believe you are in very good hands.

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Consulted at Mayo yesterday, scheduled for MRI there tomorrow. Fingers crossed,

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@waynen

Hi Tim, you might check Mayo's website on transpereneal approach. Some of their doctors have discontinued using the transrectal approach. Your doctor may not be able to do it. If I had a choice, it's the approach I would take.

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It’s the approach Mayo is taking pending MRI results.

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DX on 7/23/18 Gleason 9

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@cupman

Well its decision day for me and I would love any feedback I can get on HIFU. I am waiting on feedback from Dr. Woodrum at Mayo MN. and another doctor in TX. I have read almost everything in the last 2 weeks and but still looking for more data to help me make the best decision on which treatment would be best. I have multilateral prostate cancer, a gleason score of 7, and my PSA is 4.5, I had surgery scheduled for March 26th, but have delayed it to learn more about this alternative treatment.

Norske stay positive, I not a doctor but the stress in dealing with this stuff can definitely wear you out. Good Luck

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When I was doing my treatment research my final decision was between HIFU and FLA focal laser ablation. They are both ablation methods that work well.you may want to research FLA if you have not. Talk with the Sperling clinic. Dr Sperling in Florida. I wish you well.

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@mbartosch, you are certainly not alone in having to decide on treatment options for prostate cancer. There are several discussions in the group that weigh the pros and cons of choice, for example:
– Prostate cancer: What treatments did you choose? Results? https://connect.mayoclinic.org/discussion/prostate-cancer-4/
– prostate cancer treatment choices https://connect.mayoclinic.org/discussion/prostate-cancer-treatment-choices/

Living with UC, you may also be interested in this discussion:
– Radiation for Prostate Cancer with Ulcerative Colitis https://connect.mayoclinic.org/discussion/radiation-for-prostate-cancer-with-ulcerative-colitis/

@tconama, all the best with the MRI today. I look forward to hearing what you learn and what treatment options you'll be considering.

Welcome @griff0351. I see you were diagnosed in 2018. How are you doing today?

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@colleenyoung

@mbartosch, you are certainly not alone in having to decide on treatment options for prostate cancer. There are several discussions in the group that weigh the pros and cons of choice, for example:
– Prostate cancer: What treatments did you choose? Results? https://connect.mayoclinic.org/discussion/prostate-cancer-4/
– prostate cancer treatment choices https://connect.mayoclinic.org/discussion/prostate-cancer-treatment-choices/

Living with UC, you may also be interested in this discussion:
– Radiation for Prostate Cancer with Ulcerative Colitis https://connect.mayoclinic.org/discussion/radiation-for-prostate-cancer-with-ulcerative-colitis/

@tconama, all the best with the MRI today. I look forward to hearing what you learn and what treatment options you'll be considering.

Welcome @griff0351. I see you were diagnosed in 2018. How are you doing today?

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MRI done last night. Went smoothly, awaiting results. GlucoGen used to quiet the gut as well as Dotatem for contrast. No eCoil used.

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