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 group.

@pauljay

I'm glad you're doing so well. Are you still using eligard and abiraterone?
I've got stage 4, gleason 9, mets to entire skeleton. I started treatment three months ago at UCSF, with Firmagon. Added Abiraterone and Prednisone about a month ago.

Jump to this post

Stull on eligard and abiraterone with prednisone nearing 4 years now. Wish you the best of luck with it.

REPLY

I'm 78 years old and I was in pretty good health until about a year ago when I started feeling very tired all the time. Then I got a PSA test and it was 41. By the time I started treatment three months later at UCSF, my PSA was 71. I had an MRI, a biopsy, two PSMA Pet MRIs, a CAT scan and a bone scan. My doctors now have a good baseline. My ADT treatments have gone well; my PSA went from 71 to 1.09 to 0.52 and I'll get the next result tomorrow. My side effects of hot flashes, night sweats, muscle loss, hair loss and lack of libido are quite tolerable, considering that the ADT has taken away the bone pain, fatigue and daily fear. I've heard that as the ADT goes on, I'll get joint pain and tiredness, but so far that hasn't happened. Right now, I feel thankful for all the medical people who are helping us patients.

REPLY
@pauljay

I'm 78 years old and I was in pretty good health until about a year ago when I started feeling very tired all the time. Then I got a PSA test and it was 41. By the time I started treatment three months later at UCSF, my PSA was 71. I had an MRI, a biopsy, two PSMA Pet MRIs, a CAT scan and a bone scan. My doctors now have a good baseline. My ADT treatments have gone well; my PSA went from 71 to 1.09 to 0.52 and I'll get the next result tomorrow. My side effects of hot flashes, night sweats, muscle loss, hair loss and lack of libido are quite tolerable, considering that the ADT has taken away the bone pain, fatigue and daily fear. I've heard that as the ADT goes on, I'll get joint pain and tiredness, but so far that hasn't happened. Right now, I feel thankful for all the medical people who are helping us patients.

Jump to this post

Paul, hoping for continued good news for your next results and that you don't get joint pain and fatigue from the ADT. Not everyone gets the same side effects.

REPLY
@scullrower

Hello. Five years ago I had an artificial urinary sphincter inserted in my groin. I had been experiencing urinary incontinence since a prostatectomy and radiation treatments. I was going through 3 or 4 regular size pads a day. My urologist offered to do the surgery and I consented. Good decision. I still use pads from time to time to catch the occasional leak but my quality of life has vastly improved. The AUS has a cuff that surrounds the urethra which is controlled by a bulb located in the scrotum. Squeezing the bulb loosens the cuff allowing urine to flow. Gradually the cuff closes again. It’s all quite painless. I have found it best to sit when I urinate. Fumbling around to find the bulb was too difficult for me standing at a urinal or toilet. Since my bladder can still push pretty hard at times, I urinate at regular intervals to keep urges to minimum. Nevertheless. I am very pleased so far with the AUS.

Jump to this post

Thanks for sharing your experience and these comments are beneficial in my decision making. Overall I am lucky with my PSA results undetectable, my only issue is a pretty bad incontinence problem. Thanks again.

REPLY

I am 71 years old and was diagnosed with Prostate cancer in April, 2022. Gleason of 6, grade group 1 on 5 of 12 cores, largest amount of cancer in right apex of prostate, but hopefully all cancer contained in prostate. I am "favorable risk/ intermediate level" (according to National Comprehensive Cancer Care Network). Bone and CT Scans were negative. Am trying to decide between Radiation or Surgery. I already have some issues with urgency and frequency of urination, but I like the fact that radiation treats wider margins than surgery generally, since my largest volume tumor so far is right apex located and closer to lymph nodes. I have an "MRI prostate with endorectal coil and IV contrast" scheduled for next month which may tell more in terms of treatment. Two Radiation oncologists have said proton beam side effects and results are about the same as any other current "cutting edge" external beam radiation treatment especially with the space OAR gel (ie, SBRT, IMRT, etc). I welcome any comments going into this. Thanks.

REPLY
@veterancr

I am 71 years old and was diagnosed with Prostate cancer in April, 2022. Gleason of 6, grade group 1 on 5 of 12 cores, largest amount of cancer in right apex of prostate, but hopefully all cancer contained in prostate. I am "favorable risk/ intermediate level" (according to National Comprehensive Cancer Care Network). Bone and CT Scans were negative. Am trying to decide between Radiation or Surgery. I already have some issues with urgency and frequency of urination, but I like the fact that radiation treats wider margins than surgery generally, since my largest volume tumor so far is right apex located and closer to lymph nodes. I have an "MRI prostate with endorectal coil and IV contrast" scheduled for next month which may tell more in terms of treatment. Two Radiation oncologists have said proton beam side effects and results are about the same as any other current "cutting edge" external beam radiation treatment especially with the space OAR gel (ie, SBRT, IMRT, etc). I welcome any comments going into this. Thanks.

Jump to this post

Wait for the MRI before doing anything. Although surgery, especially robotic, is perhaps better than what I had 21 years ago, I would avoid it. Have you had a second opinion? Has anyone suggested watchful waiting? If you’re cancer is truly Gleason 6, I wouldn’t think you have much to worry about. If you do treat, highly focused radiation guided by the MRI would be the way to go. But I am not a doctor. I’m just a guy who wishes he had an option to surgery when he was first diagnosed. Best of luck.

REPLY

It may be helpful to provide more of your clinical data to the group so to provide context for their responses.

If your biopsy shows only GS 6 and Grade Group 1 you may want to discuss with your medical team whether active surveillance is a good decision for you.

You don't say what your PSA is, that would be helpful. If there are multiple PSA tests that could provide important clinical data, doubling and velocity times.

It would also be helpful to have an idea of your general health history as that can be clinical data useful in a treatment decision. For example, if you have cardiovascular problems…

Not trying to be personal here but what outcomes are you seeking and what side affects are you willing to accept. If you have an active sex life, surgery may not be a treatment decision you want to make.

So, you may want to consider having all the clinical data possible to inform your treatment decision. What you have:

Biopsy
Bone and CT scans. Thought to be honest here,, negative results are not something to definitively say it is confined to the prostate given their sensitivity. They are unlikely to show micro metastatic disease.

What you don't have or have not shared with the group:

PSA test results which could provide clinical data on extent of PCa snd aggressiveness of it by doubling and velocity times.
MRI
Lab results such as CBC which could indicate bone involvement, any issues with kidney function…
Any health issues that could impact treat decisions.

So, you may be a candidate for:

active surveillance.
surgery.
radiation to the prostate.
radiation to the prostate bed combined with short term ADT, six months.

I've had two rounds of radiation, SRT to the prostate bed and the PLNs. I've had zero side affects, testimony to the advances in the technology and the skills of my radiation oncologist and her team in building a treatment plan and delivering the radiation.

REPLY
@scullrower

Wait for the MRI before doing anything. Although surgery, especially robotic, is perhaps better than what I had 21 years ago, I would avoid it. Have you had a second opinion? Has anyone suggested watchful waiting? If you’re cancer is truly Gleason 6, I wouldn’t think you have much to worry about. If you do treat, highly focused radiation guided by the MRI would be the way to go. But I am not a doctor. I’m just a guy who wishes he had an option to surgery when he was first diagnosed. Best of luck.

Jump to this post

5 years ago I was treated with 43 doses of radiation and two years of Lupron which killed my body's ability to produce testosterone. My testosterone level is now about 15 and my legs are very weak and I have little or no energy. I wish I would have considered more seriously robotic surgery which my friends have had and seem to be left without any side effects of significance. Good luck in your choices.

REPLY
@veterancr

I am 71 years old and was diagnosed with Prostate cancer in April, 2022. Gleason of 6, grade group 1 on 5 of 12 cores, largest amount of cancer in right apex of prostate, but hopefully all cancer contained in prostate. I am "favorable risk/ intermediate level" (according to National Comprehensive Cancer Care Network). Bone and CT Scans were negative. Am trying to decide between Radiation or Surgery. I already have some issues with urgency and frequency of urination, but I like the fact that radiation treats wider margins than surgery generally, since my largest volume tumor so far is right apex located and closer to lymph nodes. I have an "MRI prostate with endorectal coil and IV contrast" scheduled for next month which may tell more in terms of treatment. Two Radiation oncologists have said proton beam side effects and results are about the same as any other current "cutting edge" external beam radiation treatment especially with the space OAR gel (ie, SBRT, IMRT, etc). I welcome any comments going into this. Thanks.

Jump to this post

Hi, lots of good questions. There isn’t a one-best path. I’m 73 and had surgery on January 7th, 2022. I had 4/12 biopsies with Gleason scores of 6 and two biopsies with 7s. Note, 7 is cancer, below 7, you do not have cancer.
My PSA was 4.3; it had double in the past year. I was thinking I wanted to have radiation treatment. It was the least invasive and you recover quickly. I got three opinions: surgery from all three doctors. I was experiencing urination urgency and frequency. I decide to have robotic surgery. I was in good health and physical condition; therefore, I was a good candidate for a good recovery. They did an MRI the day before my surgery and found a large tumor, which of course had to be removed too. The surgeon had to cut “wide” on one side in order to remove the tumor. My surgery lasted almost 4 hours: I was discharged the same day.
After my surgery, I was totally incontinent for a month. I’m about 98% continent now. I have no erectile function. In theory, is should it improve after 18 months. I had a PSA test after 6 weeks. My PSA level, was undetectable: <0.01. My next PSA test will be this month.
One of my hobbies is running. I ran a 1/2 marathon last month and got on the podium. Good luck with your decision. It’s not an easy one. Keep us posted. Thanks.

REPLY
@jerryegge

Hi, lots of good questions. There isn’t a one-best path. I’m 73 and had surgery on January 7th, 2022. I had 4/12 biopsies with Gleason scores of 6 and two biopsies with 7s. Note, 7 is cancer, below 7, you do not have cancer.
My PSA was 4.3; it had double in the past year. I was thinking I wanted to have radiation treatment. It was the least invasive and you recover quickly. I got three opinions: surgery from all three doctors. I was experiencing urination urgency and frequency. I decide to have robotic surgery. I was in good health and physical condition; therefore, I was a good candidate for a good recovery. They did an MRI the day before my surgery and found a large tumor, which of course had to be removed too. The surgeon had to cut “wide” on one side in order to remove the tumor. My surgery lasted almost 4 hours: I was discharged the same day.
After my surgery, I was totally incontinent for a month. I’m about 98% continent now. I have no erectile function. In theory, is should it improve after 18 months. I had a PSA test after 6 weeks. My PSA level, was undetectable: <0.01. My next PSA test will be this month.
One of my hobbies is running. I ran a 1/2 marathon last month and got on the podium. Good luck with your decision. It’s not an easy one. Keep us posted. Thanks.

Jump to this post

Thanks for your comments…very helpful….and congratulations on ur half
marathon!!…one of my goals…when u were incontinent for about a month, what
did You do and how much leakage?….since there is “stress incontinence “ ,
how long before u could run/work out and manage leakage?…were pads
enough…and how many and maybe how long…sorry for all the questions and many
Thanks for listening…I am kinda leaning toward the Davinci robotic as
well…long term radiation side effects kinda scare me although they are not
too common.

REPLY
@veterancr

Thanks for your comments…very helpful….and congratulations on ur half
marathon!!…one of my goals…when u were incontinent for about a month, what
did You do and how much leakage?….since there is “stress incontinence “ ,
how long before u could run/work out and manage leakage?…were pads
enough…and how many and maybe how long…sorry for all the questions and many
Thanks for listening…I am kinda leaning toward the Davinci robotic as
well…long term radiation side effects kinda scare me although they are not
too common.

Jump to this post

After a week, my catheter was removed. During my first month, I would urinate at any time or place, especially after sitting. I remember one day, in my house, changing my pants five times. Also, I remember wetting my pants after getting up at the Denver Airport. Ugh. I had extra pair of pants fortunately with me. I start jogging/walking after two weeks. The stress made me leak even more. Now days, if I have some leakage, it’s in the afternoon, more so, if I’ve exercised. I’ve used men’s diapers and pads. After the first month, my leakage problem started to improve.
I turned to YouTube to find some good videos on Men’s Kegels. The exercises do work.
I’m with you, the more I read about radiation, the less I like it. Research reports that after 5 years, your body will show manifestation of it in various places throughout your body. (Check out the Mayo’s Clinic website.) I’m also not of fan of Hormone Therapy and Lupron. Just my 2 cents. Hope this helps.

REPLY
@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

Jump to this post

If you haven't done so already, ask your Dr.s about Proton therapy as an option. Mayo offers proton pencil beam which is very effective and generally results in very few side effects. You will find that the options are varied and with proper study, you will decide on the course of action that is best for you.

REPLY
Please sign in or register to post a reply.
  Request Appointment