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.

@sannira

What can I say? Just these three words -
“You have cancer!” heard over a short phone call has changed the course of my life forever.

It is nuts!
I think, if Jerry Seinfeld had cancer, instead of his current Netflix series, “Comedians in Cars Getting Coffee,” he would be doing “Comedians with Cancer Getting Chemo!”

“You are nuts!”
Yes, that is exactly what I told my doc when he gave me the stage 4 news last week. Then he added, “In fact, your nuts are the main problem!”

I love nuts! Don’t get me wrong.
I am not allergic to them. It seems they are good for you. They have lots of good fats and protein. (By the way, this is just some info about nuts and has no connection to my story)

I turned 59 a few days ago; and all these years, I never really thought about, or paid any attention to my nuts until last week when my world was turned upside down. I thought, the pair was doing just fine leading a quiet life by hanging loose, lying low, and never wanting to see the day light. But now, suddenly, they are the center of attention. They are in the spotlight!
Never in my wildest dreams, I thought that, one day, I would be writing about them! Now, out of the blue, this group of people, who call themselves - “Medical Oncologists,” has emerged from nowhere( I never knew this group existed), and they are very boldly and confidently, pointing an accusing finger at my nuts!

To cut a long story short, I just got on the program! I took my first Bicalutamide pill yesterday. I’ll be getting a shot of Lupron injected into my buttocks next week. That little blob of Luprolide Acetate is going to stay under my skin, send signals to my brain and try to control my gonads! This will be for the rest of my life!

If I tell this to anyone outside of this group, I am sure they are going to say, “Only a nutty professor can concoct such an insane scheme.”

Well, I am not sure how many words one is allowed to write in a single post on this message board, but I may be testing the limits so I am going to stop.
If you don’t like what you have read so far, let me know and I’ll leave the group. You’ll never hear from me again. If you think this torture is nothing compared to the pain you all have already tolerated, I will continue my story next week.

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such is life. by all means continue as all of our travels are the same but different. let it all hang out...

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@sannira

What can I say? Just these three words -
“You have cancer!” heard over a short phone call has changed the course of my life forever.

It is nuts!
I think, if Jerry Seinfeld had cancer, instead of his current Netflix series, “Comedians in Cars Getting Coffee,” he would be doing “Comedians with Cancer Getting Chemo!”

“You are nuts!”
Yes, that is exactly what I told my doc when he gave me the stage 4 news last week. Then he added, “In fact, your nuts are the main problem!”

I love nuts! Don’t get me wrong.
I am not allergic to them. It seems they are good for you. They have lots of good fats and protein. (By the way, this is just some info about nuts and has no connection to my story)

I turned 59 a few days ago; and all these years, I never really thought about, or paid any attention to my nuts until last week when my world was turned upside down. I thought, the pair was doing just fine leading a quiet life by hanging loose, lying low, and never wanting to see the day light. But now, suddenly, they are the center of attention. They are in the spotlight!
Never in my wildest dreams, I thought that, one day, I would be writing about them! Now, out of the blue, this group of people, who call themselves - “Medical Oncologists,” has emerged from nowhere( I never knew this group existed), and they are very boldly and confidently, pointing an accusing finger at my nuts!

To cut a long story short, I just got on the program! I took my first Bicalutamide pill yesterday. I’ll be getting a shot of Lupron injected into my buttocks next week. That little blob of Luprolide Acetate is going to stay under my skin, send signals to my brain and try to control my gonads! This will be for the rest of my life!

If I tell this to anyone outside of this group, I am sure they are going to say, “Only a nutty professor can concoct such an insane scheme.”

Well, I am not sure how many words one is allowed to write in a single post on this message board, but I may be testing the limits so I am going to stop.
If you don’t like what you have read so far, let me know and I’ll leave the group. You’ll never hear from me again. If you think this torture is nothing compared to the pain you all have already tolerated, I will continue my story next week.

Jump to this post

Welcome to Connect, @sannira.
I can only imagine how devastated you must feel, but I couldn’t help smiling when I read your post – I’ve always believed that having a healthy sense of humor makes life so much easier! I hope @kujhawk1978 @philnob @alanr @john57 and others will join in to share their insights.

You might also be interested in viewing this discussion:
– When do you start lupron shots? https://connect.mayoclinic.org/discussion/when-do-you-start-lupron-shots/
I look forward to reading more about your progress, next week.

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@sannira

What can I say? Just these three words -
“You have cancer!” heard over a short phone call has changed the course of my life forever.

It is nuts!
I think, if Jerry Seinfeld had cancer, instead of his current Netflix series, “Comedians in Cars Getting Coffee,” he would be doing “Comedians with Cancer Getting Chemo!”

“You are nuts!”
Yes, that is exactly what I told my doc when he gave me the stage 4 news last week. Then he added, “In fact, your nuts are the main problem!”

I love nuts! Don’t get me wrong.
I am not allergic to them. It seems they are good for you. They have lots of good fats and protein. (By the way, this is just some info about nuts and has no connection to my story)

I turned 59 a few days ago; and all these years, I never really thought about, or paid any attention to my nuts until last week when my world was turned upside down. I thought, the pair was doing just fine leading a quiet life by hanging loose, lying low, and never wanting to see the day light. But now, suddenly, they are the center of attention. They are in the spotlight!
Never in my wildest dreams, I thought that, one day, I would be writing about them! Now, out of the blue, this group of people, who call themselves - “Medical Oncologists,” has emerged from nowhere( I never knew this group existed), and they are very boldly and confidently, pointing an accusing finger at my nuts!

To cut a long story short, I just got on the program! I took my first Bicalutamide pill yesterday. I’ll be getting a shot of Lupron injected into my buttocks next week. That little blob of Luprolide Acetate is going to stay under my skin, send signals to my brain and try to control my gonads! This will be for the rest of my life!

If I tell this to anyone outside of this group, I am sure they are going to say, “Only a nutty professor can concoct such an insane scheme.”

Well, I am not sure how many words one is allowed to write in a single post on this message board, but I may be testing the limits so I am going to stop.
If you don’t like what you have read so far, let me know and I’ll leave the group. You’ll never hear from me again. If you think this torture is nothing compared to the pain you all have already tolerated, I will continue my story next week.

Jump to this post

Well, @sannira let me just say, on behalf of all of us being treated for prostate cancer, welcome to the group, and I can’t wait to read your post next week! No pressure, but you’ve described the experience darn well, and your humor will make our journey a bit easier.

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@kujhawk1978

I live in Kansas City, had my surgery in March 2014 at age 58, and SRT in March 2016 after the SRT failed I went to Mayo for the C11 Choline scan and consult with Dr. Kwon at Rochester in January 2017.

The scan found four pelvic lymph nodes involved but no organs or bones.

We agreed to do six cycles of taxotere, 18-24 months of Lupron and 25 more radiation treatments.

I did all my treatments back in KC, returning to Mayo every 3-4 months for a C11 Choline scan and urology consult.

I had full confidence in my radiologist here in KC, latest equipment, top notch radiology team and a willingness to work with me and Mayo on the treatment plan. She built a 3D model, consulted with Mayo on the treatment fields, boosts to the four sites, treatment margins and total dosage.

That may be an option for you, a local radiologist working in concert with Mayo to develop and execute a treatment plan.

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Thank you for this info!

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Hi Group! I was diognsed with PC at the age of 49. I had surgery to remove the prostate. My Gleason score was a 7. The pathology report indicated that there were tumors on the margin and could not rule out that the cancer may have spread. The first couple of years my PSA was undetectable. The next couple of years it was detectable at .1. The next few years it was .13, .15, .17. This year (8 years post Surgery) it has risen to .22. My Dr wants to do a 3 month follow up PSA and go from there. Initially at the appointment with the .22 reading he discussed an MRI of my pelvic area and meeting with a radioligist oncologist. Then he called me the next day and said let's wait and do a 3 month follow up PSA. I'm debating on whether to get a 2nd opinion.
Thoughts and advice would be appreciated.

REPLY
@matt12054

Hi Group! I was diognsed with PC at the age of 49. I had surgery to remove the prostate. My Gleason score was a 7. The pathology report indicated that there were tumors on the margin and could not rule out that the cancer may have spread. The first couple of years my PSA was undetectable. The next couple of years it was detectable at .1. The next few years it was .13, .15, .17. This year (8 years post Surgery) it has risen to .22. My Dr wants to do a 3 month follow up PSA and go from there. Initially at the appointment with the .22 reading he discussed an MRI of my pelvic area and meeting with a radioligist oncologist. Then he called me the next day and said let's wait and do a 3 month follow up PSA. I'm debating on whether to get a 2nd opinion.
Thoughts and advice would be appreciated.

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Some things to consider:

You may want to go to the MSKCC and use their online tool to calculate PSADT and PSAV. This will give you a clinical data point on the aggressiveness of your PCa.

Next decision, imaging...the two approved by FDA are the C11 Choline and Aximun. There is also a variety of MRIs. The challenge there is at low PSA such as you have, they may not be able to identify where the recurrence is.

So, what to do..

If the PSADT is greater than 12 months your medical team may be right, wait until the next labs and see if there is any change in the progression that may indicate a change in the rate of the spread.

I understand that generally SRT has greater “success” of progression free survival and overall survival at lower PSA so you could pull the trigger now. If you make that decision then you have to decide what that treatment is...

Not so long ago and sometimes even today the medical community will say radiate the prostate bed only. More and more that option is falling out of clinical practice and being replaced by combined therapy that involves radiation to the prostate bed combined with short term, say six months of ADT. If you go with that combined regimen then you may want to talk with your medical team about including the PLNs, Mayo has data that shows more often than not BCR in your case is already in the PLNs and SRT to the prostate bed only does not work.

I know this because of my personal experience...surgery, BCR, failure of SRT, that was to the prostate bed only, aggressive PCa, GS8, rapid doubling and velocity times. When I finally had the C11 Choline scan at Mayo it showed the PCa was in four PLNs, fortunately no organs or bones. I finished a combined regimen of six cycles of taxotere, 18 months of Lupron and 25 radiation treatments in May 18. PSA has been undetectable since.

The jury is out but generally advanced PCa is considered as incurable. So, now you manage it as a chronic disease, treat, look for PFS, monitor, treat, repeat..,

Kevin

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I have been diagnosed with prostate cancer at an intermediate stage and will visit Mayo in AZ soon to explore their pencil beam therapy. I would like to find out how other Mayo patients in AZ felt about the pencil beam treatment, where they stayed for their therapy, and any suggestions they have. Many thanks.

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@bobvan

I have been diagnosed with prostate cancer at an intermediate stage and will visit Mayo in AZ soon to explore their pencil beam therapy. I would like to find out how other Mayo patients in AZ felt about the pencil beam treatment, where they stayed for their therapy, and any suggestions they have. Many thanks.

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Responding to @gvanourek , I am currently under pencil beam therapy for similar stage prostate cancer.
I feel blessed to have this therapy at Mayo, and would not discourage you from this course of treatment for any reason. It is gold standard treatment at a world-class facility.

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@vernonkent

Responding to @gvanourek , I am currently under pencil beam therapy for similar stage prostate cancer.
I feel blessed to have this therapy at Mayo, and would not discourage you from this course of treatment for any reason. It is gold standard treatment at a world-class facility.

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Thanks for these encouraging words. I am very impressed with what I have heard about Mayo. Any side effects of note during or after treatment? Are you local in Phoenix or did you reside in a hotel or condo? Any recommendations for places to stay? Happy to chat if that is easier. Please private message me.

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@bobvan

Thanks for these encouraging words. I am very impressed with what I have heard about Mayo. Any side effects of note during or after treatment? Are you local in Phoenix or did you reside in a hotel or condo? Any recommendations for places to stay? Happy to chat if that is easier. Please private message me.

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@gvanourek — I began Lupron shot Dec. 11 with some side effects, though tolerable. Mainly random “hot flashes” and of course, zero libido. Pencil beam radiation began 8 days ago. No side effects from the pencil beam radiation, at least so far. All this is better than risks of surgery at my age (a healthy 76) and it all will be worth it to be rid of the cancer. Everyone is different but so far my experience has been quite good. Can’t say enough good things about the people and treatment at Mayo. Happy to stay in touch if you have any other questions.

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