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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.

Profile picture for matthewdore
matthewdore | @matthewdore | Jun 3 6:03pm
In reply to @cupman "Basically Pro and Cons, I am candidate. I continue to read and still question which is..." + (show)
Profile picture for cupman @cupman

Basically Pro and Cons, I am candidate. I continue to read and still question which is better, Surgery or HIFU? However, as of this week I committed to HIFU, and I am now researching to find the most experienced HIFU doctor in the country. Call it a second and third opinion from docs that provide this treatment. Thank you for the article. I will continue to share any new information

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@cupman
sorry I just got to this thread.............did not see your final decision and treatment experience? I am also considering HIFU in chicago. But I have a high decipher score and am wondering if that tips me over to surgery? what was you decipher score pre -op?

thanks.

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markstyles | @markstyles | Jun 3 2:53pm

I had 5 radiation treatments back in 2020. After the last one my Dr. told me 'use it or lose it' My first ejaculation after radiation, was a few drops of cum and some blood (which is ok 1st time). But I've never been able to ejacuate since. I get the feeling I am/might.. but nothing happens. Being in my 70's I'm OK with it. But have had leakage issues and accidental outright floods. I periodically do Keigel exercises, and I regain control - a couple of months later the problem is back. The wisest thing would be to do them on some regular basis. It is hard to discern if you are clenching your sphicter muscle or your urinary muscle. I came across a Suzanne Summers ' Thigh Master' It is very helpful tighting the proper muscles.

At this point I cancer free. Of course I don't like the urinary problem, but am greatful the restt of my body is working in decent condition for a man reaching 77 year old.

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breadmaker | @breadmaker | Jun 3 1:05pm
In reply to @matthewdore "colleen, thanks for your help. i am recently diagnosed also.........GL 7, PI-RADS 2 PSA-2.5. 37 cm..." + (show)
Profile picture for matthewdore @matthewdore

colleen,

thanks for your help. i am recently diagnosed also.........GL 7, PI-RADS 2 PSA-2.5. 37 cm prostate. small tumor , one spot. But, high decipher score. Can i still do HIFU? does my chance for metastasis go away with HIFU?

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matthewdore -

I'd suggest you create a new post with the word "new" in it. Perhaps just - "New to the forum".

That will also benefit others that search this site in the future.

You'll get a lot of good questions from others.

My first few for you -

How old are you?
Is your "GL7" a 3+4 or a 4+3?
How many total cores? (Typical is 12.)
How many cores were benign, 3+3, 3+4 or 4+3?

Oh - and get a copy of your biopsy report and hang on to it. As you learn more, you'll find yourself re-reading it. True for me.

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1 reply
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matthewdore | @matthewdore | Jun 2 4:05pm
In reply to @colleenyoung "Welcome all. @norske46, I agree. Waiting is the hardest. There are so many factors to think..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome all.
@norske46, I agree. Waiting is the hardest. There are so many factors to think about when weighing treatment options. It sounds like you are waiting for more results before your oncologist presents the options that are best for you. As you consider options, I think some important things to know are potential side effects and risk of recurrence. You might wish to participate in this discussion:
- Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/

@cupman, what did you hear back from the docs about high-intensity focused ultrasound (HIFU)? Are you a candidate? Did you see this article already?
- Counterpoint: Is HIFU for low-risk prostate Ca ready for prime time? https://www.urologytimes.com/modern-medicine-feature-articles/counterpoint-hifu-low-risk-prostate-ca-ready-prime-time

@twinsfan, what complicated the surgery? How was the return to work?

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colleen,

thanks for your help. i am recently diagnosed also.........GL 7, PI-RADS 2 PSA-2.5. 37 cm prostate. small tumor , one spot. But, high decipher score. Can i still do HIFU? does my chance for metastasis go away with HIFU?

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1 reply
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jmc40 | @jmc40 | Sep 10, 2024
In reply to @colleenyoung "Hi @jmc40. How are you doing? Did you decide on which course of treatment is best..." + (show)
Profile picture for Colleen Young, Connect Director @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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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 9, 2024
In reply to @wyoming "I have prostate cancer, but living in Wyoming our doctors do not give you any options..." + (show)
Profile picture for wyoming @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/

How are you doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 9, 2024
In reply to @jmc40 "I am 69 years old and was diagnosed with prostate cancer about 4 years ago. I..." + (show)
Profile picture for jmc40 @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
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pmclarksr | @pmclarksr | Aug 27, 2024

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
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 26, 2024
In reply to @jeffmarc "Watchful waiting with a 4+3 makes no sense. The reason they want to do another biopsy..." + (show)
Profile picture for jeff Marchi @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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chipe | @chipe | Aug 24, 2024
In reply to @norske46 "Hi all. I am new to this whole experience so I will share a little about..." + (show)
Profile picture for norske46 @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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