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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.

cynthiac | @cynthiac | Feb 17, 2023
In reply to @oumike "Hello. I am new to this group as of 5/2019. I have been tracking PSA since..." + (show)
@oumike

Hello. I am new to this group as of 5/2019. I have been tracking PSA since age 40 and am now 75. Over the years had growing concern and fear as score went slowly, but steadily up. Last summer, the PSA began a sudden upward climb from low 3 to over 5 in one month. This led to an MRI, a biopsy (Gleason of 8), a diagnosis and then a CT, bone scan and other tests.
I did a lot of research and three consults and concluded traditional radiation would be best. I wanted proton radiation at Mayo Clinic, but was told too much risk since I have a pacemaker and traditional beam radiation would be better. I completed the prescribed 20 treatments (one-month) about two weeks ago. I gladly rang the traditional treatment-is-over-bell at the Rad Center and now waiting to see how the PSA score will do in six months. Not sure how other readers can contact me, but more-than-happy to visit about this. By-the-way, Mayo Clinic exceeded my expectations in every way possible. Please consider it for you or your family or other loved ones if appropriate. Truly, it has been a "medical mecca" for me.

Mike

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Mty dad had prostate cancer about 15 yrs ago. He underwent the same thing you did for treatment and lived cancer free for 15 years. Best wishes.

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brucemc | @brucemc | Feb 18, 2023

Hello group. I stumbled across this support group, and I thought to join after receiving confirmation unsettling information today. I just turned 74 and after a PSA of 7.2, I was referred to a urologist. I was retested, PSA 6.1 and free PSA of 7.9%. I was unhappy with my current urologist and sought to get treatment through Mayo Clinic in Phoenix, but they are not contracted with my Aetna Medicare Advantage PPO plan.
After some research, I became a patient at Banner MD Anderson Cancer in Gilbert, AZ. An MRI showed a suspected RAD 4 lesion and I followed up with a EXoDx Urine IntelliScore test that showed a high level of aggressive cancer biomarkers. Next, will be a transrectal biopsy because only Mayo has the right MRI equipment here in Phoenix for a transperineal biopsy.

Anyone familiar with excellent prostate care in the Phoenix area?

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2 replies
hbp | @hbp | Feb 18, 2023
In reply to @brucemc "Hello group. I stumbled across this support group, and I thought to join after receiving confirmation..." + (show)
@brucemc

Hello group. I stumbled across this support group, and I thought to join after receiving confirmation unsettling information today. I just turned 74 and after a PSA of 7.2, I was referred to a urologist. I was retested, PSA 6.1 and free PSA of 7.9%. I was unhappy with my current urologist and sought to get treatment through Mayo Clinic in Phoenix, but they are not contracted with my Aetna Medicare Advantage PPO plan.
After some research, I became a patient at Banner MD Anderson Cancer in Gilbert, AZ. An MRI showed a suspected RAD 4 lesion and I followed up with a EXoDx Urine IntelliScore test that showed a high level of aggressive cancer biomarkers. Next, will be a transrectal biopsy because only Mayo has the right MRI equipment here in Phoenix for a transperineal biopsy.

Anyone familiar with excellent prostate care in the Phoenix area?

Jump to this post

Hi Bruce. This is Harvey. On this site I am known by my initials hbp. We have a lot in common. I am 75, I lived and practiced law in Phoenix for 50 years ( now live on the beach in southern CA ). Many of my clients were doctors and my son was in the medical field ( he quit as he was upset with the managed care staffed by lay people ). Most of the time that I have been on Medicare I was in an advantage plan but I recently was able to change that to a Medicare supplement, which is far better for me considering my advanced, aggressive CR, cancer. If I were in your city and your situation I would consider the following.

1. In September speak to a Medicare insurance agent, ( I had a very knowledgeable agent there but I forgot his name). See if you can up your plan to a Medicare supplement that you might use at Mayo.
2. Mayo is world class and if I were still in Phoenix I would do all thatI could to go there. Banner would be my second choice.
3. Not all Banners are equal. I would research the doctors that might treat you at Banner and then see where they practice. You want to check where they graduated from, where they did their residency, how long they have been at Banner, their age (not too old and not too young). My prejudice is that doctors want to work reasonably close to their home and work with other staff that they respect. I would probably look closely to Banner in Scottsdale or mcDowell in Phoenix.
3. If you are going to have surgery, having surgery at the facility that handles the most and with a surgeon that has many surgeries per week, would be my preference.
4. Talk to your surgeon about the wisdom of getting in a clinical trial

Best of luck to you!

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1 reply
brucemc | @brucemc | Feb 19, 2023
In reply to @hbp "Hi Bruce. This is Harvey. On this site I am known by my initials hbp. We..." + (show)
@hbp

Hi Bruce. This is Harvey. On this site I am known by my initials hbp. We have a lot in common. I am 75, I lived and practiced law in Phoenix for 50 years ( now live on the beach in southern CA ). Many of my clients were doctors and my son was in the medical field ( he quit as he was upset with the managed care staffed by lay people ). Most of the time that I have been on Medicare I was in an advantage plan but I recently was able to change that to a Medicare supplement, which is far better for me considering my advanced, aggressive CR, cancer. If I were in your city and your situation I would consider the following.

1. In September speak to a Medicare insurance agent, ( I had a very knowledgeable agent there but I forgot his name). See if you can up your plan to a Medicare supplement that you might use at Mayo.
2. Mayo is world class and if I were still in Phoenix I would do all thatI could to go there. Banner would be my second choice.
3. Not all Banners are equal. I would research the doctors that might treat you at Banner and then see where they practice. You want to check where they graduated from, where they did their residency, how long they have been at Banner, their age (not too old and not too young). My prejudice is that doctors want to work reasonably close to their home and work with other staff that they respect. I would probably look closely to Banner in Scottsdale or mcDowell in Phoenix.
3. If you are going to have surgery, having surgery at the facility that handles the most and with a surgeon that has many surgeries per week, would be my preference.
4. Talk to your surgeon about the wisdom of getting in a clinical trial

Best of luck to you!

Jump to this post

Hi Harvey,
I am looking for the lengthy reply (I don't see it) I sent you. I am new to this blog and not sure if it goes there a moderator first. Thanks for your help and suggestions! Bruce

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hbp | @hbp | Feb 19, 2023

I think that my post to you was in the first group of post…. New to website…introduce yourself It was just under your post

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kuz | @kuz | Feb 19, 2023

I am now 78.5 years old.After 16 years in remission my mri shows a small lesion in my prostate .
Salvage brachytherapy has been suggested but having had IMRT as my first treatment the risks of serious urinary and bowel problems is significant so the only alternative is ADT which might give me a few more years but not a cure.
If anybody has gone thru a similar experience I would like to hear what you did.
Thanks

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hbp | @hbp | Feb 19, 2023

I would go with ADT. At 78, if ADT with Apalutamide can give you 5-10 years I would think that you had a good long life. Of course, we all want better and longer lives. I am 75 and my prognosis is 5-7 years, it could be worse, but I am adjusted to that and hoping for very little pain and control of my bowels and blaster and hoping that this is a conservative prognosis.

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spryguy | @spryguy | Feb 20, 2023
In reply to @brucemc "Hello group. I stumbled across this support group, and I thought to join after receiving confirmation..." + (show)
@brucemc

Hello group. I stumbled across this support group, and I thought to join after receiving confirmation unsettling information today. I just turned 74 and after a PSA of 7.2, I was referred to a urologist. I was retested, PSA 6.1 and free PSA of 7.9%. I was unhappy with my current urologist and sought to get treatment through Mayo Clinic in Phoenix, but they are not contracted with my Aetna Medicare Advantage PPO plan.
After some research, I became a patient at Banner MD Anderson Cancer in Gilbert, AZ. An MRI showed a suspected RAD 4 lesion and I followed up with a EXoDx Urine IntelliScore test that showed a high level of aggressive cancer biomarkers. Next, will be a transrectal biopsy because only Mayo has the right MRI equipment here in Phoenix for a transperineal biopsy.

Anyone familiar with excellent prostate care in the Phoenix area?

Jump to this post

After being diagnosed w 4+3=7 w pelvic LN mets (2/2022 ) in Prescott and realizing the Docs were making less than optimal efforts I went to Mayo Phoenix. Treatment has been stellar.

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1 reply
shelby29 | @shelby29 | Feb 20, 2023

Our story. Gleason 8, stage T3b, seminal vesticle invasion. Mayo Rochester surgeon said Surgery and radiation will result in equal recurrence chance...90%. Why risk surgery and high chance on incontinence with surgery, when radiation treatment will result in the same chance of recurrence.
So we opted for ADT, Zytiga, and radiation. Radiation oncologist concurred, so that's our treatment choice. All choices suck, but we listened to the experts....really trust Mayo, they are the best! One month in minor side effects from ADT and Zytiga, but its early. Radiation starts mid March....hoping for the best!

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1 reply
markheuer | @markheuer | Feb 20, 2023

I had my prostate removed in 2011 at Johns Hopkins The drs decided I did not need any radiation or chemotherapy. In 2021 the cancer re-emerged. I am now taking Xtandi and receive infusions quarterly of another hormonal drug

My PSA is below 1 with these treatments but creeping up

My cancer is stage 4

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