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 Support Group.

@melcanada

There is an operation that plugs up the bladder connect with prostate and gets you off catheter Two friends are fine now for 6+ years

I am back on Zolodex injections 3 months PSA 1.2

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Thank you for your advice!
I not have the the gland anymore. The bladder has been totally destroyed, first from radiation and later by treatment of the inside walls with chemical solutions. My only solution to the pain is to have a ureterostomy made.

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@melcanada

There is an operation that plugs up the bladder connect with prostate and gets you off catheter Two friends are fine now for 6+ years

I am back on Zolodex injections 3 months PSA 1.2

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After having a RP I have experienced permanent incontenance. As a result my urine leakage requires 2 -3 adult briefs per day.
I am currently scheduled to have an implant installed which will totally cure this situation. The unit is AMS 800 Urinary Control System. One hour outpatient surgery and then 4 weeks of recovery. To urinate you simplely squeeze the pump in your scrotum. 95% of these last 10 years.

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This is amazing I will pass this on to others

Sounds better that the plug fix that one has to still have control Thanks

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@robmohio

After having a RP I have experienced permanent incontenance. As a result my urine leakage requires 2 -3 adult briefs per day.
I am currently scheduled to have an implant installed which will totally cure this situation. The unit is AMS 800 Urinary Control System. One hour outpatient surgery and then 4 weeks of recovery. To urinate you simplely squeeze the pump in your scrotum. 95% of these last 10 years.

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I had my prostectomy combined with the removal of a large bladder diverticula over 5 1/2 years ago. I am also incontinent and manage by wearing adult diapers. I was not a candidate for a sling procedure, and opted out of an AUS. I have had every kind of test, device, medication imaginable and have decided no more. In addition, I have some serious heart issues and a couple of years ago lumbar spine surgery. I had green light surgery over 10 years ago which helped a little. After a while one gets a little tired from all the poking and prodding. Many here may think I'm giving up. I manage the best I can. We all manage our health issues that work best for us.

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@robmohio

After having a RP I have experienced permanent incontenance. As a result my urine leakage requires 2 -3 adult briefs per day.
I am currently scheduled to have an implant installed which will totally cure this situation. The unit is AMS 800 Urinary Control System. One hour outpatient surgery and then 4 weeks of recovery. To urinate you simplely squeeze the pump in your scrotum. 95% of these last 10 years.

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Hi. I had the aus800 installed last year august. It failed. Dec had the pump.moved to other side.fail. Feb 22 had it all removed. Cuff eroded into urethra causing infection. 8 weeks each time to recover. Feb cath in for 8 weeks. Do you know where they cut you? SO painful. You won't sit for weeks. Good luck. I hope yours works. Pump should be activated at 4 weeks. Get a good donut to sit on before surgery.

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@budisnothome

Hi. I had the aus800 installed last year august. It failed. Dec had the pump.moved to other side.fail. Feb 22 had it all removed. Cuff eroded into urethra causing infection. 8 weeks each time to recover. Feb cath in for 8 weeks. Do you know where they cut you? SO painful. You won't sit for weeks. Good luck. I hope yours works. Pump should be activated at 4 weeks. Get a good donut to sit on before surgery.

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Feb surgery removed it all.

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Most effective sequence of treatments for metastatic prostate cancer?
After 44 external beam radiation treatments + ADT in early 2021, my PSA has now been rising and I have metastatic prostate cancer. I am getting conflicting information on the most effective sequence of treatments:
> Continue ADT forever + 2nd Generation Hormone Therapy (Xtandi) and when that stops working move to Chemotherapy (Taxotere)
OR
> Continue ADT forever + Chemotherapy (Taxotere) and upon completion follow up with 2nd Generation Hormone Therapy
And finally, where in this sequence should Provenge be used?

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@austin7

Most effective sequence of treatments for metastatic prostate cancer?
After 44 external beam radiation treatments + ADT in early 2021, my PSA has now been rising and I have metastatic prostate cancer. I am getting conflicting information on the most effective sequence of treatments:
> Continue ADT forever + 2nd Generation Hormone Therapy (Xtandi) and when that stops working move to Chemotherapy (Taxotere)
OR
> Continue ADT forever + Chemotherapy (Taxotere) and upon completion follow up with 2nd Generation Hormone Therapy
And finally, where in this sequence should Provenge be used?

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Hello @austin7 and welcome to Mayo Clinic Connect. I can see you are interested in learning from other members based on their experiences given the conflicting information you have been given. Can I start by asking if the conflicting information has been coming from the same oncologist/team or if you have seen multiple oncologists and each had their own opinion?

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@amandajro

Hello @austin7 and welcome to Mayo Clinic Connect. I can see you are interested in learning from other members based on their experiences given the conflicting information you have been given. Can I start by asking if the conflicting information has been coming from the same oncologist/team or if you have seen multiple oncologists and each had their own opinion?

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Greetings Amanda - thanks for the question and I'm glad to be part of this group. I have just been diagnosed with metastatic castrate resistant prostate cancer (mCRPC) from my PSMA PET scan. My current team is a urologist, radiation oncologist and primary care physician. I am scheduled to see a medical oncologist in early November. My team is currently recommending Xtandi first and when is stops working, follow with Taxotere. However, they also are clear there is considerable debate in the prostate cancer medical community of using second generation hormone therapy first vs. a more aggressive approach of chemo first, then follow with second generation hormone therapy. They are open to more discussion on this before we decide. Based on what I have read, new research and observations have shown longer survival rates with a more aggressive approach. At Mayo, Dr, Eugene Kwon has been a leader in the more aggressive approach. This is a very important topic for those of us with mCRPC and would I appreciate any insight/knowledge/research to help inform the best path forward. Your help is greatly appreciated as this is time critical.

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I have been diagnosed with prostate cancer
I have been reading about it in the last couple of days, and look forward to learning from all of you.

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