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.

Hi Colleen. Thanks for the email.
It seems there are three responses to systemic treatment, total or complete, partial and none. I belong to the former. 71 had TURP which was successful but find G10. PSA was all over the shop but now down below 0.1. Here to share experience, hopefully encourage others, and understand more what needs to be done going forward.

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@sbassmeister I do not know what irritation you have but I have pelvic nerve pain. This is sometimes caused by cycling. I had a Rp for cancer in September 2022. Wishing you the best in your rp.

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I was diagnosed in the fall of 2016. I did Transurethal Hyperthermia in Germany March 2017. In March 2019 I did Radiation. Now after Pet scan confirmation I’m being treated again, currently on Lupron. I know from my research hormone therapy is needed right now but also read my cancer can/will become resistant to this treatment and continue to grow. Once it becomes Metastatic, it’s over for me and cannot be cured. My question for the group is, why not try chemo now instead of waiting until it spreads and can’t be cured? Does localized prostate cancer not respond well to Chemo?

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@sbassmeister

Thanks hammer101. I am leaning toward the same decision. I am active and otherwise pretty healthy. I'm an avid bicycle rider and had been hoping my bike riding had only irritated my prostate....no such luck! I was originally thinking about waiting for surgery until after my scheduled fishing trip in mid-May. However I am thinking now of contacting my urologist and if I can schedule quickly getting in and getting it done. The mental part of it is beginning to consume me.

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I agree with your assessment, removing the prostate cancer ASAP would be prudent. As you know, most prostate cancers grow slowly, but it is cancer, and anything can happen. I assume you have done your homework in finding a prostate cancer center of excellence and a doctor that has done several hundred successful robotic assisted radical prostatectomies, including nerve sparring. From my research, you also want a doctor that is specialized in radical prostatectomies and very few other surgeries - A specialist/expert, not a jack of trades. I can't say enough how satisfied I was with Mayo-Rochester, Doctor Igor Frank, and his staff. Amazing experience all around.

Praying all goes well with your surgery.

Jim

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my husband is scheduled for the implant of hydrogel to separate the prostate from the bladder and rectum , pre EBRT mid April. Does anyone know how long the gel lasts and does it just absorb after time or ?
Thanks

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Hello all...great comments. I am looking for support, not the answer. And to see if anyone had the same experiences or knew someone who might. I am 50 years old. Very active in all aspects of life. Been on Testosterone Replacement Therapy since early late 2018. No health issues in my family. No health issues for me. Clean Colonoscopy back in July.

PSA levels remained under 1.5 until this fall. In September it was clocked at 1.6, then December read 2.26, then in March it spiked to 3.9. Had no other symptoms. Went to my general doctor who referred me to urology. Urologist did DRE and it was normal. A bit enlarged but nothing too out of the ordinary. He sent me for MRI. MRI came back clean except for one area that was 2.8cm. They gave the lesion PIRADS 3 score. Everything else in the MRI was normal. Went back and now they want to MRI Fusion Guided Biopsy. He told me he plans to biopsy all of the prostate including the area. Everyone has been supportive and feels if it PCa that I have most likely caught it early.

But, that is where I am at. Does the above point to prostate cancer? I am very concerned right now. Then reading about all the different treatments, etc has me worried as well thinking I have to possibly deal with side effects forever. The doctor was 50/50 on it. The nurse was 50/50. Pirads 3 says 50/50. But the size of the lesion concerns me. Any others out there know others or in similar situation?

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If the MRI showed something you need to have the biopsy. You asked if that points towards PC. I say it points toward needing a biopsy as only it can confirm PC. I'm not a fan of the DRE. Sure, sometimes the doctor can feel something abnormal but they can't feel the entire gland. My DRE was negative but my PSA was elevated enough to suggest a biopsy. Before PSA testing was recognized as a reliable diagnostic tool , I would have been sent on my way with the "all clear" as my Uro felt nothing. My post op biopsy was 3+4 with +EPE. What you're going through is a process with many steps. Get biopsy results before you worry about treatment side effects. Biopsy results can be a deciding factor in treatment choice. If your biopsy shows low risk PC the recommendation is often to do no treatment at all. Just keep an eye on it. Wishing you all the best!

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@bruningk

I was diagnosed in the fall of 2016. I did Transurethal Hyperthermia in Germany March 2017. In March 2019 I did Radiation. Now after Pet scan confirmation I’m being treated again, currently on Lupron. I know from my research hormone therapy is needed right now but also read my cancer can/will become resistant to this treatment and continue to grow. Once it becomes Metastatic, it’s over for me and cannot be cured. My question for the group is, why not try chemo now instead of waiting until it spreads and can’t be cured? Does localized prostate cancer not respond well to Chemo?

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There are various studies about the use of chemotherapy early in the treatment, look for doublet and triplet therapy.

From my laymen's understanding, there are some PCa cells which are adaptive and do not respond (die...) to the low testosterone environment created by the use of monotherapy, in your case Lupron. Those cells may however, be "killed" by chemotherapy.

Discuss with your medical team, if you are physically and medically able to go through doublet or triplet therapy, it could be n option for a more durable remission.

Kevin

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@acmuceus

my husband is scheduled for the implant of hydrogel to separate the prostate from the bladder and rectum , pre EBRT mid April. Does anyone know how long the gel lasts and does it just absorb after time or ?
Thanks

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It lasts about 6 months and is absorbed by the body

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@kujhawk1978

There are various studies about the use of chemotherapy early in the treatment, look for doublet and triplet therapy.

From my laymen's understanding, there are some PCa cells which are adaptive and do not respond (die...) to the low testosterone environment created by the use of monotherapy, in your case Lupron. Those cells may however, be "killed" by chemotherapy.

Discuss with your medical team, if you are physically and medically able to go through doublet or triplet therapy, it could be n option for a more durable remission.

Kevin

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Thank you, I’ll check into what you said!

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