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Moderator

Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young, Connect Director @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?

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

dandl48 Dave | @dandl48 | Feb 27, 2021
In reply to @mbartosch "Hello, all. I was diagnosed with low grade PC in 2015. PSA was about 5.7, I..." + (show)
@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 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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tinker | @tinker | Feb 28, 2021
In reply to @semeon "Well good luck with everything. Since they are doing an MRI guided biopsy I believe you..." + (show)
@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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tinker | @tinker | Feb 28, 2021
In reply to @waynen "Hi Tim, you might check Mayo's website on transpereneal approach. Some of their doctors have discontinued..." + (show)
@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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griff0351 | @griff0351 | Mar 1, 2021

DX on 7/23/18 Gleason 9

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semeon | @semeon | Mar 1, 2021
In reply to @cupman "Well its decision day for me and I would love any feedback I can get on..." + (show)
@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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 1, 2021

@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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1 reply
tinker | @tinker | Mar 2, 2021
In reply to @colleenyoung "@mbartosch, you are certainly not alone in having to decide on treatment options for prostate cancer...." + (show)
@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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waynen | @waynen | Mar 5, 2021

Some people on this thread have asked questions about biopsys. This recent study might help in looking at the traditional 12 sample transrectal biopsy done by many urologists and the mMRI Targeted biopsys. It's clear from the research that, if you can get it, the mMRI is a better choice.

The authors of this multicenter, randomized, noninferiority trial compared magnetic resonance imaging (MRI)–targeted biopsy with the standard systematic 12-core transrectal ultrasonography (TRUS) biopsy procedure in men with clinical suspicion of prostate cancer. MRI-targeted biopsy in men with a PI-RADS score ≥3 was noninferior to standard TRUS biopsy, with the detection of clinically significant prostate cancer in 35% of patients undergoing MRI-targeted biopsy versus 30% with the TRUS biopsy. In addition, 37% of patients in the MRI-targeted group were able to avoid prostate biopsy due to low PI-RADS score.

These results indicate that MRI-targeted biopsy procedures may allow for fewer prostate biopsy procedures with similar rates of detection in men with clinical suspicion of prostate cancer.
– Emily Miller, MD

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2 replies
dandl48 Dave | @dandl48 | Mar 5, 2021
In reply to @semeon "When I was doing my treatment research my final decision was between HIFU and FLA focal..." + (show)
@semeon

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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Here is the conclusion of a clinical trial that was published 1.5 years ago. Things might have changed since them. This was reported by the NIH (National Institute of Health).

Conclusion: Focal laser ablation is a promising technique for treatment of clinically localized PCa and should ideally be performed within approved clinical trials. So far, only few studies have reported on FLA and further validation with longer follow-up is mandatory before widespread clinical implementation is justified.

It seems that at least in 10/2019, FLA was just in clinical trials. Here is a link to the study, https://pubmed.ncbi.nlm.nih.gov/30671638/

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1 reply
semeon | @semeon | Mar 5, 2021
In reply to @dandl48 "Here is the conclusion of a clinical trial that was published 1.5 years ago. Things might..." + (show)
@dandl48

Here is the conclusion of a clinical trial that was published 1.5 years ago. Things might have changed since them. This was reported by the NIH (National Institute of Health).

Conclusion: Focal laser ablation is a promising technique for treatment of clinically localized PCa and should ideally be performed within approved clinical trials. So far, only few studies have reported on FLA and further validation with longer follow-up is mandatory before widespread clinical implementation is justified.

It seems that at least in 10/2019, FLA was just in clinical trials. Here is a link to the study, https://pubmed.ncbi.nlm.nih.gov/30671638/

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I chose to use the FLA approach with Dr Sperling in Florida, there were no clinical trials in 2014 when I was diagnosed. It really was a simple procedure and I did it 2 times once again in 2018.

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