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Moderator

Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

jeffmarc | @jeffmarc | Aug 23 7:19pm
In reply to @hwm58 "I had a radical prostatectomy two years ago, and my PSA has been rising over the..." + (show)
@hwm58

I had a radical prostatectomy two years ago, and my PSA has been rising over the past six months. My urologist recommended ADT and radiation. I started Orgovyx two weeks ago and will start radiation on Monday. Hoping that the fatigue won't be too bad, but I am trying to be flexible with my work activities over the next few months and get plenty of exercise. (I'm 65 and a semi-retired tech worker. I now direct two choirs and sing in a third.) Getting lots of support from family and friends. Getting back into meditation.

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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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bens1 | @bens1 | Aug 24 7:16am
In reply to @wyoming "Gleason 4+3 and they did not want to discuss the TULSA Pro but wanted to start..." + (show)
@wyoming

Gleason 4+3 and they did not want to discuss the TULSA Pro but wanted to start immediately with prostatectomy. Medicare and a great supplemental insurance. Doctor that wanted to do surgery we now understand is gone from UC Health.

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wyoming 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.

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chipe | @chipe | Aug 24 7:46am
In reply to @norske46 "Hi all. I am new to this whole experience so I will share a little about..." + (show)
@norske46

Hi all. I am new to this whole experience so I will share a little about what is happening. In November 2017, I had a PSA of 8.1 in a regular annual checkup. My next PSA in January 2019 read 196.7. We set a meeting with urology at the VA for February 2019 and had another reading, this time 541. We started hormone treatment with bicalutamide (sp?) and scheduled a biopsy for March 1. Those results confirmed cancer with Gleason score of 10. Bone scan an CTscan followed on March 13. Those results are not yet in. Scheduled to meet on March 25 to get results and for an Elligard injection that day.

The whole thing of course is new so have been working to remain positive but uncertainty is hard. Waiting for test results is hard.

What questions should I ask regarding treatment options going forward? Is leg fatigue and body fatigue normal?

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Responded to a VERY old post. Oops.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 26 10:55am
In reply to @jeffmarc "Watchful waiting with a 4+3 makes no sense. The reason they want to do another biopsy..." + (show)
@jeffmarc

Watchful 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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Hello @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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pmclarksr | @pmclarksr | Aug 27 6:41pm

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 9 5:08pm
In reply to @jmc40 "I am 69 years old and was diagnosed with prostate cancer about 4 years ago. I..." + (show)
@jmc40

I am 69 years old and was diagnosed with prostate cancer about 4 years ago. I have no family history of this disease. My PSA in 2020 was 6 and a biopsy showed I had a few cores with Gleason 6; no Gleason 7 or higher, so I went on active surveillance. Over the past 18 months my PSA jumped to 11 (Jan '24) and in July it is now 12 (as of July 2024). The latest MRI showed no additional growth in two lesions, however, the latest biopsy showed new Gleason 7 growth (3 + 4) in several cores with 4 being 5% to 10% in those cores. I had a PSMA Pet scan in June '24 that showed no metastasis. I have consulted with my Mayo urologist regarding the radical prostatectomy option and my Mayo radiation oncologist about proton radiation with possibility of ADT.

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Hi @jmc40. How are you doing? Did you decide on which course of treatment is best for you?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 9 5:12pm
In reply to @wyoming "I have prostate cancer, but living in Wyoming our doctors do not give you any options..." + (show)
@wyoming

I have prostate cancer, but living in Wyoming our doctors do not give you any options other than prostatectomy, chemo or radiation. My wife researched and discovered TULSA Pro in Dallas Texas. Long distance is not recommended as I can not get a direct answer from anyone. My PSA is 22, I've had an MRI, PSMA Pet Scan and prostate biopsy. Watchful waiting is where I am at. Now Dallas wants another biopsy, but they will not tell me why. I can not get a local biopsy because Wyoming docs will not help you if you go out of state. My wife and I are scheduled to go to Dallas in a month. Big hurdle though. My wife has chronic PTSD from an incident involving a doctor and hospital and a victim of WAR. She does not want me to get any treatment due to what has happened to her. And what happened to her is unspeakable and unforgivable. I understand her trust issues. I'm not sure I want to put her through anymore anxiety, even if it means I continue to watchful wait. I can not go to a hospital or doctor and leave her behind as the anxiety would be too much. My cancer is still confined to my prostate after 3 years. Just wondering if anyone else has decided to watch and wait. At 72, I have still live a wonderful life with my wife.

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@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?

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jmc40 | @jmc40 | Sep 10 6:24pm
In reply to @colleenyoung "Hi @jmc40. How are you doing? Did you decide on which course of treatment is best..." + (show)
@colleenyoung

Hi @jmc40. How are you doing? Did you decide on which course of treatment is best for you?

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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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