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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.

aschneid54 | @aschneid54 | Feb 3, 2021

Diagnosed with prostate cancer in September of 2015. Prostate removed December of 2015 and PSA numbers stated showing up 9months later. Majority of my cancer kept coming back in my left tailbone area. I’ve had two ablations done on tailbone spots and two sessions of high intensity radiation. I’m currently undergoing 20 sessions of radiation for a new spot on my left hip and another spot near my bladder in the prostate bed area.

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hodagwi | @hodagwi | Feb 3, 2021

Hi, I was treated in 2005 at Memorial Sloan Kettering in NYC for prostate cancer and had 25 radiation sessions after seed implants and no surgery. The cancer never spread. In 2016 I developed a fistula connecting the colon and the bladder and it looks like around the path the radiation took. I have frequent UTI's and sometimes kidney infections so am on daily antibiotics and have been advised by Mayo to have my colon and bladder removed to resolve the infections. I have lived with the occasional infections so far, about 5 times a year, which are treated with stronger antibiotics. You might want to discuss this issue with your doctor and see if they can mitigate the radiation near your bladder so this doesn't become an issue. The radiation and seed implants did the trick and PSA is less than .1 after 16 years.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 14, 2021
In reply to @windom1950 "Greetings, my name is Richard. I was diagnosed with metastatic prostatic cancer in Sept. 2020. A..." + (show)
@windom1950

Greetings, my name is Richard. I was diagnosed with metastatic prostatic cancer in Sept. 2020. A year prior, during a routine checkup, my PSA score was OK, but later in the spring of 2020 it had risen to 4.69, so after a series of tests, including a bone scan and bone biopsy, the diagnosis came back as metastatic prostate cancer. The cancer is aggressive and tumors have blocked my urethra and ureters so I have bilateral nephrostomy tubes for passing urine. I have been on hormone therapy -- Leuprolide (Lupron) since the diagnosis, and recently the doctor added Erleada (Apalutamide). My latest PSA test in Jan. 2021 was down to 2.1 which is encouraging. My blood test values are also trending positive, so right now it is a waiting game to see how well and how long the drugs will manage the symptoms.

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Welcome @windom1950 and @aschneid54, I invite you to browse the discussions of the Prostate Cancer group (https://connect.mayoclinic.org/group/prostate-cancer/). I'm confident that there are many discussions to which you can add your experiences and tips for others.

Additional, here are a few discussions directly related to metastatic cancer:
- Stage 4 prostate cancer treatment options https://connect.mayoclinic.org/discussion/stage-4-treatment-options/
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Any questions that you'd like to explore?

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tinker | @tinker | Feb 22, 2021

Hi, my name is Tim. I have not been diagnosed. At this stage I’m trying to understand my diagnostic options. A routine physical, and a follow up turned up a slightly elevated PSA, around 5.3.

I am told a biopsy is needed, and don’t know yet what they are recommending. I see the three most common methods, and believe I have a preference, but not sure how much luck I’ll have steering the process. Am I wrong to show a preference to transpereneal approach?

If it is inappropriate for me to post here, let me know.

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3 replies
ken82 | @ken82 | Feb 22, 2021
In reply to @tinker "Hi, my name is Tim. I have not been diagnosed. At this stage I’m trying to..." + (show)
@tinker

Hi, my name is Tim. I have not been diagnosed. At this stage I’m trying to understand my diagnostic options. A routine physical, and a follow up turned up a slightly elevated PSA, around 5.3.

I am told a biopsy is needed, and don’t know yet what they are recommending. I see the three most common methods, and believe I have a preference, but not sure how much luck I’ll have steering the process. Am I wrong to show a preference to transpereneal approach?

If it is inappropriate for me to post here, let me know.

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@tconama Don't waste time.. Your Urologist should do that biopsy.. There are better, more conclusive methods now but get the specialist's advice.. K

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1 reply
tinker | @tinker | Feb 22, 2021
In reply to @ken82 "@tconama Don't waste time.. Your Urologist should do that biopsy.. There are better, more conclusive methods..." + (show)
@ken82

@tconama Don't waste time.. Your Urologist should do that biopsy.. There are better, more conclusive methods now but get the specialist's advice.. K

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I just spoke with my doctor finally. He had ordered antibiotics, and I wasn’t sure why. Looks like they only do the transrectal approach. They indicated they have very low sepsis rates. I guess I have to go along with that though none of the approaches are ideal.

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semeon | @semeon | Feb 22, 2021
In reply to @tinker "Hi, my name is Tim. I have not been diagnosed. At this stage I’m trying to..." + (show)
@tinker

Hi, my name is Tim. I have not been diagnosed. At this stage I’m trying to understand my diagnostic options. A routine physical, and a follow up turned up a slightly elevated PSA, around 5.3.

I am told a biopsy is needed, and don’t know yet what they are recommending. I see the three most common methods, and believe I have a preference, but not sure how much luck I’ll have steering the process. Am I wrong to show a preference to transpereneal approach?

If it is inappropriate for me to post here, let me know.

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I would highly recommend a MRI guided biopsy. I believe you will get better results.

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1 reply
tinker | @tinker | Feb 22, 2021
In reply to @semeon "I would highly recommend a MRI guided biopsy. I believe you will get better results." + (show)
@semeon

I would highly recommend a MRI guided biopsy. I believe you will get better results.

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They are scheduling a MRI just prior to the procedure. Thank you

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1 reply
semeon | @semeon | Feb 22, 2021
In reply to @tinker "They are scheduling a MRI just prior to the procedure. Thank you" + (show)
@tinker

They are scheduling a MRI just prior to the procedure. Thank you

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That’s great you will much more accurate results

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waynen | @waynen | Feb 22, 2021

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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