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 Support Group.

@windy4me

Hello all...great comments. I am looking for support, not the answer. And to see if anyone had the same experiences or knew someone who might. I am 50 years old. Very active in all aspects of life. Been on Testosterone Replacement Therapy since early late 2018. No health issues in my family. No health issues for me. Clean Colonoscopy back in July.

PSA levels remained under 1.5 until this fall. In September it was clocked at 1.6, then December read 2.26, then in March it spiked to 3.9. Had no other symptoms. Went to my general doctor who referred me to urology. Urologist did DRE and it was normal. A bit enlarged but nothing too out of the ordinary. He sent me for MRI. MRI came back clean except for one area that was 2.8cm. They gave the lesion PIRADS 3 score. Everything else in the MRI was normal. Went back and now they want to MRI Fusion Guided Biopsy. He told me he plans to biopsy all of the prostate including the area. Everyone has been supportive and feels if it PCa that I have most likely caught it early.

But, that is where I am at. Does the above point to prostate cancer? I am very concerned right now. Then reading about all the different treatments, etc has me worried as well thinking I have to possibly deal with side effects forever. The doctor was 50/50 on it. The nurse was 50/50. Pirads 3 says 50/50. But the size of the lesion concerns me. Any others out there know others or in similar situation?

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I agree with the other comments. Definitely get the biopsy done (not just lesion area but entire prostate, especially peripheral regions). If you catch prostate cancer early, side effects can be minimal for the rest of your life. If you let prostate cancer develop too long and then address it, side effects will be significant for the rest of your life.

FYI - Just had a friend go through same situation and biopsies came back negative.

Good luck and I pray the biopsy come back negative!!

Jim

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Good morning. Is there a group site or a regular zoom meeting. I'd like to join.

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Check out todays Event Update (April 11, 2023) that refers to a Prostate Cancer Support Group that meets on the 2nd Wednesday of each month with a guest speaker from noon to 1:30 Central Time.

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My husband was just diagnosed 1 week ago with stage 4 advanced prostrate cancer. His PSA was 225, and the cancer has spread to his spine, ribs, pelvis and lymph nodes. I have sent in a referral to Mayo along with his test results. My question is typically how long does it take to get an appointment at Mayo?

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@spryguy

Not Colleen, but have some info. Developed pins and needles in my feet (neuropathy) and had difficulty sleeping. My primary care prescribed Gabapentin and this was supported by the oncologist who noted the benefits for hot flashes. It works for all of the above. Nice to have one script work for 3 complaints .

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I'll keep gabapentin in mind for hormone therapy...interesting. I have been on it for about 6 months for neuropathy and it is working, sort of. better than it was.
My prostate cancer was discovered about 2 months ago and is staged at t2c. I had an MRI before biopsies; they found a PI-RDS 5 lesion in the MRI and 12 of 20 cores were positive 3+4. There were no indications outside the prostate so I selected radiation. My radiologist sent my biopsies to a genetics for to check for 'high risk' of spreading. I said I would have to be convinced to do the hormone thing and should have that info back next week. We'll see. Radiation will likely start in about 10 days; have had the simulation appointment this past week.

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@leevormelker

Good morning. Is there a group site or a regular zoom meeting. I'd like to join.

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Hi Lee, you have successfully joined the Prostate Cancer support group discussions here.

You can also email Dr. Vetter at rvetter@mayo.edu to be added to the monthly invite for the Zoom prostate cancer meetings.

Lee, can you share a bit more about yourself? When were you diagnosed with prostate cancer? Have you had treatment?

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Has anyone had experience with MRI LINAC?
Thx
Victor

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@vp3

Has anyone had experience with MRI LINAC?
Thx
Victor

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Vp3: I have had experience with the Viewray Mridian Machine. I just completed my five treatments with it in February. The 2mm margins are tighter than other Radiation machines And the automatic gating gave me extra comfort. I had 10.2 psa and 3+4 Gleason. I narrowed my radiation choices down to Proton Therapy and the Mridian machine. I would make that same decision again. Side effects were some restriction of urine flow but I took flomax after 3 sessions and it helped. Happy to answer any questions.

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Hello,
I'm Rudy and had my biopsy on 10/22 and received my diagnosis of prostate cancer on 12/23/22. I had a Gleason score of 3/4 on 2 of 16 samples from my biopsy. Doctors recommended surgery because I'm 58. My PET scan were negative and I had RP on 3/15/23. During RP doctors removed lymph nodes on one side of my groin area, which tested positive for cancer.

Luckily, some of the nerves around my prostate were spared. Today is the 5th week since my surgery. Recovery has been going well with the exception of my incontinence.

I feel slight improvement with my incontinence. I have the normal leakage upon standing up, which I'm fine with.
What drives me nuts is when I get periods of slow leakage that I can't control, which is everyday. I do the kegel exercises but I don't feel they are working. I am using pads and depends underwear. I use at least 12 pads a day and use the depends to guarantee I stay dry.

I have been walking and moving around since surgery. I read and happy for others who did not get incontinent or had for a short time. The last 2 days I've been keeping my water limiting my liquid intake to around 64 ounces with slight improvement.

Any suggestions to what I'm not doing or doing wrong so I can improve my level of incontinence.

Thanks Rudy

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Hey @hbnapu
Sorry to hear about the persistence of this issue. If you had RP just about a month ago, you likely had your catheter out a little over two weeks ago, I remember how much I disliked the issues, but, I'd suggest it might be a little early to be overly concerned yet.

At the risk of being a "Capt. Obvious" have you discussed this with your surgeon or asked for a prescription for Physical Therapy for that issue? Some on here have gone to formal PT and found out that they weren't doing the kegels quite correctly and possibly there may be other exercises.
Hopefully this is only temporary!
Mike

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