Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young @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?

I’m learning that I can’t go as hard and long as I used to. Even if I feel ok, I’ve learned to rest and take it easy. When tiredness comes, I just sit down, nap if needed, until it passes. Hoping the strength and stamina return soon. My final Zoladex shot should be through my system in 2 days. Looking forward to getting back to “normal “. Very grateful for the excellent care giving by Mayo!

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@bodeygolfer

I’m learning that I can’t go as hard and long as I used to. Even if I feel ok, I’ve learned to rest and take it easy. When tiredness comes, I just sit down, nap if needed, until it passes. Hoping the strength and stamina return soon. My final Zoladex shot should be through my system in 2 days. Looking forward to getting back to “normal “. Very grateful for the excellent care giving by Mayo!

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Sorry golfer had my treatment 5 yrs ago and am still suffering fatigue I had 50 RT treatments and 8 injections of female hormones, Cancer gone and PSA is ok. Advice was "keep exercising". Coincident with all this I have balance problems, MRI indicates that the supply to the balancing centre of my brain is restricted. Anybody experienced this ???

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@doncampbell

Sorry golfer had my treatment 5 yrs ago and am still suffering fatigue I had 50 RT treatments and 8 injections of female hormones, Cancer gone and PSA is ok. Advice was "keep exercising". Coincident with all this I have balance problems, MRI indicates that the supply to the balancing centre of my brain is restricted. Anybody experienced this ???

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I am experiencing balance and dizziness problems. Sometimes the dizziness is so bad I can't drive. I had a Radical Prostatectomy 13 years ago. Other than the dizziness, everything else is fine.

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@doncampbell

Sorry golfer had my treatment 5 yrs ago and am still suffering fatigue I had 50 RT treatments and 8 injections of female hormones, Cancer gone and PSA is ok. Advice was "keep exercising". Coincident with all this I have balance problems, MRI indicates that the supply to the balancing centre of my brain is restricted. Anybody experienced this ???

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doncampbell Thanks for the reply! Hope your fatigue eventually subsides. Take care.

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@tmclain

I am experiencing balance and dizziness problems. Sometimes the dizziness is so bad I can't drive. I had a Radical Prostatectomy 13 years ago. Other than the dizziness, everything else is fine.

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tmclain… appreciate the reply. No dizziness and balance issues to date. Glad all else is going well for you.

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I am not steady on my feet ..weak knee,s last injection Feb final one august 2020

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Since you're talking about balance issues and fatigue, I'd like to direct you to a few discussions in other groups on Mayo Clinic Connect that you may be interested in reviewing or participating in:

– What exactly is proprioception? Anyone with experiences? https://connect.mayoclinic.org/discussion/propriociption/
– Having trouble keeping your balance? https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/
– Fatigue and cancer treatment https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/

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Want to go by Michael "T" for this group. Diagnosed with Gleason 7 Bi-lateral (unfavorable intermediate) cancer on 4-6-2020 via biopsy (TRUS procedure). PSA went from 6.4 to 8.5 roughly over the last year. I'm healthy and 62 (just retired – incredible timing huh). Waiting to find out if constrained to the prostate, but MRI imaging a year ago indicated that it was. Will have another on June 1. Although leaning in direction of surgery (RARP), not totally their yet. I like the probability of being cured with a good chance of having my original life span back! However, new forms of radiation therapy (IMRT, proton SBRT) may still be an option for me. Undecided. It seems to me that the post-op biopsy of the prostate and surrounding tissue is a huge plus for being cured with surgery. This of course not possible with radiation. Looking for any feedback, or key points learned from personal experience or research which could help me with this decision. Thanks a bunch!

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@mahowey5835

Want to go by Michael "T" for this group. Diagnosed with Gleason 7 Bi-lateral (unfavorable intermediate) cancer on 4-6-2020 via biopsy (TRUS procedure). PSA went from 6.4 to 8.5 roughly over the last year. I'm healthy and 62 (just retired – incredible timing huh). Waiting to find out if constrained to the prostate, but MRI imaging a year ago indicated that it was. Will have another on June 1. Although leaning in direction of surgery (RARP), not totally their yet. I like the probability of being cured with a good chance of having my original life span back! However, new forms of radiation therapy (IMRT, proton SBRT) may still be an option for me. Undecided. It seems to me that the post-op biopsy of the prostate and surrounding tissue is a huge plus for being cured with surgery. This of course not possible with radiation. Looking for any feedback, or key points learned from personal experience or research which could help me with this decision. Thanks a bunch!

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Michael T, Strongly rec: 2nd opinion and evaluation radiation and surgery. Our med backgrounds very similar,except I am 77 and that may be tie-brkr. Mayo's radiation was 20 sessions + hormone for Gleason of 8/cancer all in prostate. Terrific program, manageable side effects; rad. 4/19; wonderful staff/support. Rec/Dr. Pisansky and staff!
All the best,
Mike C.

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Similar scores, though my age is 73. That said, I opted for IMRT radiation in combination with ADG therapy after consultations with 3 urologists. Radiation therapy has dramatically improved in the last decade due to advancing technology. Side effects are considerably less and success rate is considerably improved vs. methods used just a few years ago. That said, at your age, surgery is typically the choice most people make. If the cancer has not spread beyond the prostate, there's a strong likelihood you will be free of cancer for the foreseeable future. Good news, since you're relatively young. However, the side effects and potential consequences of surgery vs. radiation have to be weighed — impotency, incontinence, etc. And, of course, during surgery, you will be further biopsied to determine if the cancer has spread outside the prostate if not previously detected. If so, further surgery may be needed to remove additional impacted areas by cancer cells adjacent to your prostate. Making the decision of surgery vs. alternative treatments (e.g., radiation) is very difficult. It's a multi-variate analysis based on Gleeson, scores, age, lifestyle, sexual considerations, etc., etc., etc. I highly recommend you visit the online site for the Prostate Cancer Research Institute (PCRI.org). Their assessment of treatment options/risks is easy to understand and comes with numerous and highly educational videos that weigh the pros/cons of different treatments. These will help you avoid confusion and provide you with a much clearer path to choose the direction that is best for you. Finally, talk to men who have had various treatments. An online forum like this is a good place to learn more but nothing substitutes for a first-hand conversation with a person who has been there and done that. Good luck!

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Michael T. I’m 72 and just finished IMRT radiation and hormone therapy (Zoladex). Gleason score was 7. I take warfrin so it was strongly recommended I go with radiation instead of surgery. No problems with radiation. Suggest you gather all the info you can regarding side effects of radiation vs surgery. I was told both options have excellent results provided the cancer has not spread outside the prostrate. I had an MRI, that confirmed cancer was contained in the prostrate. If I was your age, in good health, and no other health issues, I probably would have had surgery. With hormone therapy, I had to wait two months (it takes that long for the shot to provide maximum benefits) after the first shot before they would do radiation. After radiation, I was given another shot that stayed in my system for 28 days. That’s 4 months plus additional months as the radiation effects wear off and the testosterone levels get back to normal. I am very pleased with the care received! I do not have any regrets going with radiation, given my situation. I have heard the recovery from surgery is quicker which is more appealing to me. Either choice is good. Good luck. Take care!

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@mahowey5835

Want to go by Michael "T" for this group. Diagnosed with Gleason 7 Bi-lateral (unfavorable intermediate) cancer on 4-6-2020 via biopsy (TRUS procedure). PSA went from 6.4 to 8.5 roughly over the last year. I'm healthy and 62 (just retired – incredible timing huh). Waiting to find out if constrained to the prostate, but MRI imaging a year ago indicated that it was. Will have another on June 1. Although leaning in direction of surgery (RARP), not totally their yet. I like the probability of being cured with a good chance of having my original life span back! However, new forms of radiation therapy (IMRT, proton SBRT) may still be an option for me. Undecided. It seems to me that the post-op biopsy of the prostate and surrounding tissue is a huge plus for being cured with surgery. This of course not possible with radiation. Looking for any feedback, or key points learned from personal experience or research which could help me with this decision. Thanks a bunch!

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Here is the response I posted 3 months ago to another guy looking at the same decision: "I had similar numbers to yours in 2016 and after much study, I chose surgery to remove the prostate at Mayo Scottsdale with the daVinci. It went well and the surgeons are great!. There's still a little residual pain, a little leakage on sneezing and ED issues but my PSA remains at zero and my sense of relief is still intense. Anytime you can cure cancer with surgery, you should do so. The alternatives have too many side effects and doing nothing is a big risk that you will progress past the point where surgery can help. Surgery also eliminates the problems related to the prostate and you will have a strong stream In future. Good luck with your decision. Let me know if you have any more questions."
I was 74 when I had the surgery in 2016. You should get the genetic profile done, I think it is the Prolaris test. It assesses the aggressiveness of your cancer. I came out right in the middle, 5 out of 10. If you at 1 or 2, you could consider waiting but if you're 5 or over it is a no-brainer to have surgery. I have now had undetectable PSA for 4 years. Great peace of mind and acceptable side effects.

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