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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.

acmuceus | @acmuceus | 4 days ago

Is anyone on the hormone drug Firmagon? If so what are the side effects to expect? The nurse mentioned hot flashes but there must be more.
Thanks to all.

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bens1 | @bens1 | 4 days ago
In reply to @windy4me "Thanks for the great replies and posts. How typical is it to have one MRI Doctor..." + (show)
@windy4me

Thanks for the great replies and posts. How typical is it to have one MRI Doctor diagnosed at PI-RADS 3 with 1 lesion and the other come back with 5 lesions graded PI-RAD 3-5? They did an MRI prostate contouring without me knowing, and I found the result in records online. I am not sure what any of this means. Not sure if anyone can comment, but is it possible to have glute/hip dull aches (occasional) and not have stage 3 or 4 cancer? I have PSA 3.9, a jump from 2.26 3 months earlier. Any thoughts are appreciated

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My Urologist requested a specific doctor to read my Prostate MRI. When I asked him why, he basically indicated that the number of doctors skilled enough to accurately read the image was limited. That only served to confirm the choice of having the Decipher test as a back up …for everything…like a second opinion.

I hear the industry is trying to use artificial intelligence to improve these type of imaging diagnostic readings but obviously its not there yet.

I think my RO is great, with skill, experience, a comforting personality, and she answered all my questions including a couple with” I don’t know”. Many RO’s seem to subtlety avoid answering a question with “I don't know “ and there are, as a layman, many grey areas unfortunately, that do not have clear answers. It’s hard to know, when to know, that your answers to questions will no longer yield further insightful information that may help you make a better decision. I had to sort of minimize the grey areas the best I could and at some point accept some of the unknowns and make the best decision I could as a collaborative patient.

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windy4me | @windy4me | 5 days ago

Thanks for the great replies and posts. How typical is it to have one MRI Doctor diagnosed at PI-RADS 3 with 1 lesion and the other come back with 5 lesions graded PI-RAD 3-5? They did an MRI prostate contouring without me knowing, and I found the result in records online. I am not sure what any of this means. Not sure if anyone can comment, but is it possible to have glute/hip dull aches (occasional) and not have stage 3 or 4 cancer? I have PSA 3.9, a jump from 2.26 3 months earlier. Any thoughts are appreciated

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1 reply
windy4me | @windy4me | 5 days ago

Thanks for the reply. I just saw an MRI Prostate Conturing report which is completely different from the original MRI reading. The first one was 2.8 CM lesion and PI-RADS 3, and now it says I have 5 lesions 2-PI-RAD 5, @ PI-RAD 4, and 1 PI-RAD 3. Is this something normal or have you heard of it? No one from the doctor's office told me anything about this. And does dull hip aches and feeling of something lower abs means the cancer has spread?

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bens1 | @bens1 | 5 days ago
In reply to @windy4me "Hello all...great comments. I am looking for support, not the answer. And to see if anyone..." + (show)
@windy4me

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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windy4me: Trying not to make this a "solution" comment but in turn, and I hope, it may provide some support for you as it did for me. If you have your biopsy tested using the Decipher test, you will have a better feel for the aggressiveness level of what you have and whether multi-modal treatment is required. For me, it was comforting to statistically have an idea (6,708 patients) what my 10-year risk of metastasis with patients of similar clinical features at the time of biopsy was. My brother also has prostate cancer and it has metastasized. He takes hormone therapy and is weak and tired at times and he took the test as well to give he and his doctor additional guidance. Your right…its very scary and not always clear what to do or expect. Comfort for me came from family, friends and as you recognize, from people on this Mayo site but I found it also can additionally come from independent testing without any connection to a particular doctor or institution.

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gkm | @gkm | 6 days ago
In reply to @windy4me "Hello all...great comments. I am looking for support, not the answer. And to see if anyone..." + (show)
@windy4me

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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I agree with rockinat59. The biopsy will indicate whether you have PC. If your Gleason score is 6, you will go on Active Surveillance and be regularly tested. PC is slow growing so there is no real need for urgency.

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acmuceus | @acmuceus | 6 days ago
In reply to @dpcarriere "The gel will absorb. I never fealt it so no idea how long it took to..." + (show)
@dpcarriere

The gel will absorb. I never fealt it so no idea how long it took to disappear.

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thanks for that, just wondering as it does seem like a very good preventive measure

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dpcarriere | @dpcarriere | 6 days ago
In reply to @acmuceus "my husband is scheduled for the implant of hydrogel to separate the prostate from the bladder..." + (show)
@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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The gel will absorb. I never fealt it so no idea how long it took to disappear.

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1 reply
bruningk | @bruningk | 6 days ago
In reply to @kujhawk1978 "There are various studies about the use of chemotherapy early in the treatment, look for doublet..." + (show)
@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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shelby29 | @shelby29 | 6 days ago
In reply to @acmuceus "my husband is scheduled for the implant of hydrogel to separate the prostate from the bladder..." + (show)
@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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