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.

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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.

Hi, my name is Perry and I had a Radical Prostatectomy (RP) last week (8/4/22). I am sitting on my chair with a catheter and foley bag. Yuck. I just turned 60 and have been dealing with this since my Feb 22 PSA came back at 2.99. That flagged a Urology visit and a second PSA in March 22 that was at 3.46. This flagged a Trans Rectal Ultrasound that came out with a mass being detected. All the DREs I had were fine. This caused a Biopsy to be performed in May 22 which showed a Gleason 7 (4 +3) in 2 of 12 cores and a Gleason 6 (3+3) in two other cores. No perineural invasion etc. After this I had a bone scan, abdominal scan, and a prostate MRI. My urologist/surgeon wanted a PSMA PET Scan but my insurance would no approve it. Great...... Anyway, I had some incidental findings on the abdominal scan but nothing to worry about I was told. Bone scan clear. MRI on prostate showed an area of EPE. Anyhow, I decided the RP was best for me and had it last week. One night stay in hospital. Pain not too bad and came home next day. IMO 2 nights should be standard not one. Today I received my pathology report and I read it. My appointment with surgeon is in two weeks (busy man). No signs of seminal vesicle, bladder neck, or lymphovascualr invasion which is all good I assume. Also, the cancer was still graded a Gleason 7. Tumor is PT2. 15 lymph nodes removed and no tumors present. They were also listed as pN0 which is no signs of microcell cancer in them which I am very thankful for. The EPE detected on the biopsy had no signs of cancer in the margins which was good, but unfortunately the report stated in another area (left lateral) there was a 1 mm length of invasive carcinoma present at the margin. Not sure what this means but I think that means I have positive margin in one area. This has got me down as I was hoping I would not need any further treatment (radiation) and only would have to keep an eye on my PSA over whatever interval is prescribed by the doctor. Now, I am not so sure. Does anyone have thoughts on this margin issue? Thank-you, Perry Christopher. Also, there was no mention of Perineural Invasion on the pathology report.

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@tom86

Can someone please tell us what the frequency of PSA testing is Post Prostectomy?
My husband had RP in 2020 and is fortunate to have undectable PSA for 2 years. He is in a very high risk catagory with T3b, ECE, etc. and some suggest 6 months testing intervals after 2 years. What is the MAYO protacol or anyone elses experience with this scenario? TYIA

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My friend who had RP last year has been getting his PSA checked each month. His Gleason was 8. Not sure about anything else in his case. He will only start radiation if he sees a rise in PSA so that is his reasoning for going once a month. Normally, I think they start you out at every 3 months standard but it is only a quick blood test so I think most Urologists are open to testing more.

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@perrychristopher

Hi, my name is Perry and I had a Radical Prostatectomy (RP) last week (8/4/22). I am sitting on my chair with a catheter and foley bag. Yuck. I just turned 60 and have been dealing with this since my Feb 22 PSA came back at 2.99. That flagged a Urology visit and a second PSA in March 22 that was at 3.46. This flagged a Trans Rectal Ultrasound that came out with a mass being detected. All the DREs I had were fine. This caused a Biopsy to be performed in May 22 which showed a Gleason 7 (4 +3) in 2 of 12 cores and a Gleason 6 (3+3) in two other cores. No perineural invasion etc. After this I had a bone scan, abdominal scan, and a prostate MRI. My urologist/surgeon wanted a PSMA PET Scan but my insurance would no approve it. Great...... Anyway, I had some incidental findings on the abdominal scan but nothing to worry about I was told. Bone scan clear. MRI on prostate showed an area of EPE. Anyhow, I decided the RP was best for me and had it last week. One night stay in hospital. Pain not too bad and came home next day. IMO 2 nights should be standard not one. Today I received my pathology report and I read it. My appointment with surgeon is in two weeks (busy man). No signs of seminal vesicle, bladder neck, or lymphovascualr invasion which is all good I assume. Also, the cancer was still graded a Gleason 7. Tumor is PT2. 15 lymph nodes removed and no tumors present. They were also listed as pN0 which is no signs of microcell cancer in them which I am very thankful for. The EPE detected on the biopsy had no signs of cancer in the margins which was good, but unfortunately the report stated in another area (left lateral) there was a 1 mm length of invasive carcinoma present at the margin. Not sure what this means but I think that means I have positive margin in one area. This has got me down as I was hoping I would not need any further treatment (radiation) and only would have to keep an eye on my PSA over whatever interval is prescribed by the doctor. Now, I am not so sure. Does anyone have thoughts on this margin issue? Thank-you, Perry Christopher. Also, there was no mention of Perineural Invasion on the pathology report.

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My first thought is they shouldn't make it available till you can get to your doc for an explanation! (I've been where you are on this one...) mine was some Perineural invasion though. Not to mention sitting in the situation you are in, somewhat limited in what you can do to take your mind off it, carrying the bag around and all, makes it a little worse. That part will be over before you know it!

It is a shame you have to think about this for 2 weeks, but, a mm being as small as it is, my GUESS is that it's likely that the margin is longer than that? It would've been nice if they told you how much clean margin there was after that 1 mm, my guess is only the doc will be able to tell you that after comparing the path report to his surgical notes. There may be a standard those more learned on the subject here may know.

I would be surprised if the doc sent you immediately for more treatment. You're likely going to be playing the PSA waiting game like the rest of us do for a while. If you do have to go back for radiation, at your age (just a little younger than I) assuming other good health, you'd most likely tolerate it pretty well. I'm having my last one tomorrow. (yay!). Back to the PSA waiting game LOL. Hopefully , you will not have to.

Best of Luck to you!
Mike

REPLY
@web265

My first thought is they shouldn't make it available till you can get to your doc for an explanation! (I've been where you are on this one...) mine was some Perineural invasion though. Not to mention sitting in the situation you are in, somewhat limited in what you can do to take your mind off it, carrying the bag around and all, makes it a little worse. That part will be over before you know it!

It is a shame you have to think about this for 2 weeks, but, a mm being as small as it is, my GUESS is that it's likely that the margin is longer than that? It would've been nice if they told you how much clean margin there was after that 1 mm, my guess is only the doc will be able to tell you that after comparing the path report to his surgical notes. There may be a standard those more learned on the subject here may know.

I would be surprised if the doc sent you immediately for more treatment. You're likely going to be playing the PSA waiting game like the rest of us do for a while. If you do have to go back for radiation, at your age (just a little younger than I) assuming other good health, you'd most likely tolerate it pretty well. I'm having my last one tomorrow. (yay!). Back to the PSA waiting game LOL. Hopefully , you will not have to.

Best of Luck to you!
Mike

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Thanks Mike. Good luck to you also. Are they doing External Beam Radiation on you?

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@perrychristopher

Thanks Mike. Good luck to you also. Are they doing External Beam Radiation on you?

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Yes, Intensity modulated radiation therapy (IMRT) I've had 38 of 40 treatments, on my way in a few minutes for #39.

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Congrats on being so close to completing RT. How long of a time period did you wait between your RP and the start of RT? I read Arnold Palmer did RP and then RT back in 97 with no recurrence until he passed 20 years later from heart issues. Thanks.

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@perrychristopher

Congrats on being so close to completing RT. How long of a time period did you wait between your RP and the start of RT? I read Arnold Palmer did RP and then RT back in 97 with no recurrence until he passed 20 years later from heart issues. Thanks.

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The surgery was 9/2/21 Pre surgery PSA was around 13.5
First one was accidentally not tested as ultra sensitive and was
<.2
the next two were
01/26/22 0.039
04/26/22 0.091

PSMA PET CT Scan was 5/20/22, that was negative
RT Started on 6/15/22 (40 treatments)

Glad to hear it worked for Arnold! Hoping it does for me too!

REPLY
@web265

The surgery was 9/2/21 Pre surgery PSA was around 13.5
First one was accidentally not tested as ultra sensitive and was
<.2
the next two were
01/26/22 0.039
04/26/22 0.091

PSMA PET CT Scan was 5/20/22, that was negative
RT Started on 6/15/22 (40 treatments)

Glad to hear it worked for Arnold! Hoping it does for me too!

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I'm sure it will. Thanks for info.

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Had 45 sessions of PRT in 2019/2020 along with hormone treatment. PSA started to rise early 2022. Just got results from PSMA PET which shows extensive metastatic results throughout many organs, and two ribs. Prostate and prostate bed remain clear. Expect to meet with oncologist next week. Any possible treatments that I should be sure to inquire about?

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Hola buenas noches. Me diagnosticaron con cancer de prostata hace 1 semana. Me dicen que esta en etapa 4 y que es un cáncer muy agresivo. Ya me hizo metástasis y lo tengo regado en mis huesos hasta mi cráneo. Estoy muy nervioso y me está dando depresión.

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