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?

@kujhawk1978

The side affects you describe of his surgery, ADT, and radiation sound about "normal." Some of them such as weight, muscle, can be addressed through diet and exercise.
Your medical team should be able to discuss with him ways of mitigating the hot flashes, notice I did not say eliminate.
If he is not seeing a cardiologist, consider adding one to your medical team given the known cardio vascular side affects of ADT.
If he is still on ADT, consider asking your oncologist or urologist about intermittent ADT. It may be possible to stop, actively monitor and then restart treatment based on clinical data such as increasing PSA, imaging…
As to the sexual side affects, particularly from non nerve sparing side and ADT, well known and a challenge gto reinvent intimacy.

Kevin

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Hi, Kevin! Thank you for your insight. Yes, I understand that almost everyone has those side effects – I was checking different sites before , trying to get an answer. Radiologist never mentioned that side effects can be so severe. His last and final injection of Eligard was 10 month ago. Overall he had a short – term ADT and that is completed. I am wondering that 10 month after last Eligard and last radiation 10 month ago, all the side effects are so severe.
Diet and exercise is very important, but he is not there – he is talking about doing it but does not have plans to do that. Every morning for him is a struggle : he feels nauseated and feels better after 5 cups of coffee and 15 minutes in the bathroom. Since operation he complains that the feeling inside like something is wrong, something is damaged.
Before this all his heart was good, he is a pilot, so, he was checked every half a year. A few month ago I took him to Emergency and he stayed in a hospital, coming out with one more diagnosis : A-fib. Yes, he is under cardiologist's care, too 🙂 . Oh, yes , bone pain – bone scan=all norm. Colonoscopia – all norm. The only thing in his blood test is so so: hemoglobin. None of all the doctors he is seeing ( endocrin.,primary care, cardiol.,.dermatologist ( he had a skin cancer 10 years ago and then 6 years ago), sleep apnea specialist.( life long sleep apnea). OMG! A lot to handle for him and…me 🙂

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Diagnosed in 2018 with grade 2b. I’ve seen several urologists at Mayo in Jacksonville who were great doctors. I have had the HOLEP procedure for BPH which helped me immensely. I recently had another MRI to determine the next move as far as treatment. PSA is 13.5 as of yesterday. I will have a consultation tomorrow. Since my prostate is smaller now, the urologist I’m seeing now suggests having HIFU when the time comes for treatment. I’m totally against any radiation treatment. Anybody out there ever had HIFU treatment and if so, what facility did you use?

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@joenfl2017

Diagnosed in 2018 with grade 2b. I’ve seen several urologists at Mayo in Jacksonville who were great doctors. I have had the HOLEP procedure for BPH which helped me immensely. I recently had another MRI to determine the next move as far as treatment. PSA is 13.5 as of yesterday. I will have a consultation tomorrow. Since my prostate is smaller now, the urologist I’m seeing now suggests having HIFU when the time comes for treatment. I’m totally against any radiation treatment. Anybody out there ever had HIFU treatment and if so, what facility did you use?

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Hi Joen,
@semeon @poodledoc can share more about high-intensity focused ultrasound (HIFU) and their experiences.

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@colleenyoung

Hi Joen,
@semeon @poodledoc can share more about high-intensity focused ultrasound (HIFU) and their experiences.

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Hi John if you want more info on Focal Laser Ablation, search Dr Sperling – Sperling clinic in Florida. I did the treatment on 2 occasions very straight forward and simple if you are a good candidate. It’s an in office procedure no hospitalization.

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@joenfl2017

Diagnosed in 2018 with grade 2b. I’ve seen several urologists at Mayo in Jacksonville who were great doctors. I have had the HOLEP procedure for BPH which helped me immensely. I recently had another MRI to determine the next move as far as treatment. PSA is 13.5 as of yesterday. I will have a consultation tomorrow. Since my prostate is smaller now, the urologist I’m seeing now suggests having HIFU when the time comes for treatment. I’m totally against any radiation treatment. Anybody out there ever had HIFU treatment and if so, what facility did you use?

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Hello @joenfl2017 In my opinion if a Mayo doctor says you are a good candidate for prostate HIFU then that is what you should consider. Mayo in Jacksonville also has recently started doing the newest version of HIFU called TULSA PRO. I had prostate HIFU performed by Dr Scionti in Sarasota FL November 2020 and am very pleased with the results, low PSA and most importantly a total lack of any side effects which are so common with surgery and radiation. Good luck to you. Bill

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@poodledoc

Hello @joenfl2017 In my opinion if a Mayo doctor says you are a good candidate for prostate HIFU then that is what you should consider. Mayo in Jacksonville also has recently started doing the newest version of HIFU called TULSA PRO. I had prostate HIFU performed by Dr Scionti in Sarasota FL November 2020 and am very pleased with the results, low PSA and most importantly a total lack of any side effects which are so common with surgery and radiation. Good luck to you. Bill

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Wow. I would trust Mayo too. For a 2nd opinion I would go to MD Anderson

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@stantallusa

Wow. I would trust Mayo too. For a 2nd opinion I would go to MD Anderson

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Bummed out after mri and consultation with the urologist. He said that HIFU would not be feasible. I had the understanding HIFU could be done to the whole gland. He so much told me that radiation would be my best bet and that if I chose not to get the treatment that I would be going against his advice. PSA has doubled since February and tumors have grown. Still confined to the prostate. So now I’m going to Mayo Monday for a consultation with the radiologist.

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I was initially diagnosed in May with a biopsy at my local urologist. I just had an MRI at Mayo Rochester which showed another area that the first biopsy missed. They biopsied that and I’m waiting for the results.

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Hello all – Introducing myself – new to the forum – hope I'm not giving too much info but here goes:

67 y/o recently diagnosed. Initial PSA was 5.8 with % free 0f 9.
MRI Results:
1. 1.5 cm right posteromedial peripheral zone lesion and 1.1 cm left posteromedial peripheral
zone lesion in the mid gland consistent with PI-RADS 5 and 4 lesions respectively. Mild capsular irregularity associated with both these lesions concerning for extracapsular extension. Abutment of the medial aspect of the right seminal vesicle by the right base
peripheral zone lesion concerning for seminal vesicle invasion.
2. No pelvic lymphadenopathy.

Biopsy Results:
A. PROSTATE, RIGHT APEX, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+4=7 (GRADE GROUP 2),
INVOLVING TWO OF TWO CORES AND 70% OF THE SUBMITTED TISSUE
B. PROSTATE, RIGHT MID, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 4+3=7 (GRADE GROUP 3),
INVOLVING TWO OF TWO CORES AND 95% OF THE SUBMITTED TISSUE; Note: Perineural invasion is identified.
C. PROSTATE, RIGHT BASE, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING ONE OF TWO CORES AND LESS THAN 5% OF THE SUBMITTED TISSUE; Note: Perineural invasion is identified.
D. PROSTATE, LEFT APEX, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING TWO OF TWO CORES AND 5% OF THE SUBMITTED TISSUE
E. PROSTATE, LEFT MID, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING TWO OF TWO CORES AND 20% OF THE SUBMITTED TISSUE
F. PROSTATE, LEFT BASE, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING TWO OF TWO CORES AND 20% OF THE SUBMITTED TISSUE

Meeting with the Urologist next week to go over results so I'm just starting doing research into various options of treatment and found this group as a nice resource. I know the Perineural invasion and possible extracapsular extension could have a bearing on treatment options. Would be happy to hear from others with similar findings as to their experience. Thanks.

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@buckeye54

Hello all – Introducing myself – new to the forum – hope I'm not giving too much info but here goes:

67 y/o recently diagnosed. Initial PSA was 5.8 with % free 0f 9.
MRI Results:
1. 1.5 cm right posteromedial peripheral zone lesion and 1.1 cm left posteromedial peripheral
zone lesion in the mid gland consistent with PI-RADS 5 and 4 lesions respectively. Mild capsular irregularity associated with both these lesions concerning for extracapsular extension. Abutment of the medial aspect of the right seminal vesicle by the right base
peripheral zone lesion concerning for seminal vesicle invasion.
2. No pelvic lymphadenopathy.

Biopsy Results:
A. PROSTATE, RIGHT APEX, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+4=7 (GRADE GROUP 2),
INVOLVING TWO OF TWO CORES AND 70% OF THE SUBMITTED TISSUE
B. PROSTATE, RIGHT MID, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 4+3=7 (GRADE GROUP 3),
INVOLVING TWO OF TWO CORES AND 95% OF THE SUBMITTED TISSUE; Note: Perineural invasion is identified.
C. PROSTATE, RIGHT BASE, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING ONE OF TWO CORES AND LESS THAN 5% OF THE SUBMITTED TISSUE; Note: Perineural invasion is identified.
D. PROSTATE, LEFT APEX, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING TWO OF TWO CORES AND 5% OF THE SUBMITTED TISSUE
E. PROSTATE, LEFT MID, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING TWO OF TWO CORES AND 20% OF THE SUBMITTED TISSUE
F. PROSTATE, LEFT BASE, BIOPSY:
–ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1),
INVOLVING TWO OF TWO CORES AND 20% OF THE SUBMITTED TISSUE

Meeting with the Urologist next week to go over results so I'm just starting doing research into various options of treatment and found this group as a nice resource. I know the Perineural invasion and possible extracapsular extension could have a bearing on treatment options. Would be happy to hear from others with similar findings as to their experience. Thanks.

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Hi @buckeye54, welcome and glad to meet you. Come on over and let me introduce you to a few of the members like @jevan (fellow newbie) @poodledoc @kujhawk1978 @sanway and @ken82 to name a few.

What treatment options have been suggested for you Buckeye?

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@colleenyoung

Hi @buckeye54, welcome and glad to meet you. Come on over and let me introduce you to a few of the members like @jevan (fellow newbie) @poodledoc @kujhawk1978 @sanway and @ken82 to name a few.

What treatment options have been suggested for you Buckeye?

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