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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?
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Hi there!
I'm doing well, thank you. No, I haven't decided yet, but am leaning toward radiation. I'm waiting on Decipher and Prolaris analysis reports before I make a final decision. Thank you for asking.
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1 Reaction@wyoming, active surveillance is a treatment choice several members have discussed. See these related discussions:
- Active Surveillance As A Choice?
https://connect.mayoclinic.org/discussion/active-surveillance-as-a-choice/
- Do I Continue Active Surveillance or Consider Intervention?
https://connect.mayoclinic.org/discussion/question-continue-active-surveillance-consider-intervention/
See all related discussions: https://connect.mayoclinic.org/group/prostate-cancer/?search=active%20surveillance&index=discussions
How are you doing?
Hi @jmc40. How are you doing? Did you decide on which course of treatment is best for you?
I was diagnosed two weeks ago via TRUS biopsy. 1 of 12 with Gleason of 7 on the one malignant specimen. Looking to connect with others considering focal ablasion and TULSA-PRO. I am interested in talking to others who have done it and the approximate out of pocket costs after Medicare.
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1 ReactionHello @jeffmarc,
Thank you for sharing your experiences with Prostate Cancer and trying to help and encourage other members on their healthcare journey.
I would like to share the community guidelines to help remind members to walk the careful line of sharing their own experiences while not offering medical advice:
2. Be careful about giving out medical advice:
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the - Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community.
Using phrases like "you should" and "you need to" could be taken as medical advice even if the true intention is to encourage another member to follow their provider's suggestions. We share our experiences to help guide our conversations with medical providers and to help ask more informed questions to help make decisions on their medical treatment.
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6 ReactionsResponded to a VERY old post. Oops.
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1 Reactionwyoming please consider the Mridian Linac with a built in MRI. Real time viewing and treatment. What the RO sees on the MRI in real time is what they treat. Less exposure of healthy tissue which impacts side effects and toxicity. I had 5 treatments in February 2023. Last PSA was .75 down from 10. Google the Mirage study. You will be glad you checked this out. Good luck.
I started on Lupron seven years ago and noticed no fatigue. Switched to Orgovyx about six months ago and no fatigue from it either.
I also had a prostatectomy and then 3 1/2 years later had radiation, 35 sessions. I had absolutely no effect from the radiation other than two years of undetectable PSA after it. I worked a full-time job every day after that radiation, which I had early in the morning before work.
Exercise is the trick to stop the fatigue. In my case, I just walk about a mile twice a day and fatigue has never been an issue.
This varies from person to person, taking the drug and getting radiation doesn’t guarantee fatigue.
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2 ReactionsWatchful waiting with a 4+3 makes no sense. The reason they want to do another biopsy is because your Gleason score has probably increased, more cores probably have cancer, and they want to see what’s going on. Watchful waiting with a 4+3 is just asking for a short life. Dying of prostate cancer is extremely painful you don’t wanna go there, that would be harder on your wife than treatment,. You need to get treatment and SBRT radiation is the least invasive procedure with the shortest time of treatment.
You should also have a recent PSMA pet scan done to make sure that it has not spread out of the prostate now. With a PSA of 22 it may have spread.
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2 ReactionsIf you were seeing a urologist, they are surgeons so they want to do surgery. My brother was in the same situation you are right now and he had five sessions of SBRT radiation (cyberknife) at UCSF and it worked great.
If you have had a PSMA pet scan and the cancer has not spread past the prostate then that is a really good option for you, get an appointment with a radiation oncologist to see what they think. If you have surgery, you probably will not be able to get an erection unless you have nerve sparing, and it is successful, but if you have radiation, you usually will still be able to get an erection.
Even after surgery if you get Trimix injections within a few months of surgery, you probably can get an erection again. If you wait too long, it may not work.
You should get genetic testing to see if you have a genetic anomaly.