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?

Hello to everyone dealing with prostate cancer. I was diagnosed with stage 4 prostate cancer and was treated with Lupron, and bicaludamide. Recently I started taking Zytiga and Prednisone daily. My oncologist tells me that eventually the metastasis will build up an immunity to my treatment. We haven’t discussed anything beyond that point. Has anyone heard what the next step will be when Zytiga is no longer effective. Thank you. Philnob

REPLY

Your oncologist is technically correct, eventually..The question is when…?

It may be helpful to this group if you add your clinical history, diagnosis – is this a recurrence or were you diagnosed with metastatic disease – was it in lymph n nodes only, is it in your bones, organs…, Gleason Score, PSA doubling and velocity times, when you started treatment, your age, overall health status…

I would consider reading the NCCN PCa patient guidelines. Those will give you a starting point on what the urology, radiation and oncology communities agree as to the standard of care for PCa.

Do some research on intermittent ADT, if it is something you and your medical team is an option for you, that may extend the time to resistance to ADT.

The way ahead depends on the progression and clinical data associated with your specific PCa – is it high risk, GS 8 or above, are your PSA doubling and velocity times fast, how long have you been on ADT, how ow is your T while on ADT, less than 20 is best…

There may be a number of treatment choices ahead and you and your medical team will have to decide, Provenge, Xtandi, Taxotere, Jetvana, Radium 223.

Your posts indicates your PCa is under control, try and relax, live, do your research, talk with your medical team. There are so many new and emerging treatments that PCa may become like diabetes and AIDS, a chronic disease that is managed through combination therapies that are constantly updating.

Here's one link:

https://pcnrv.blogspot.com/2019/12/optimal-chemohormonal-sequencing-for.html

Here's another:

https://www.nccn.org/patients/guidelines/content/PDF/prostate-patient.pdf

Kevin

REPLY

As a newcomer to the Group, my prostate details are…
Diagnosed 2011 and treated with radiation then two years of three monthly injections of Zoladex. At the end of this period, PSA did not register or showed as 0.6.
PSA in 2016 had increased to 3.6 and PSMA scan showed cancer in lymph nodes and on lower ribs.
Three monthly Zoladex restarted.
PSMA 2018 showed a substantial reduction in previously revealed tumours.
Three monthly Zoladex continues and PSA remains in the low 3s.

I was diagnosed with breast cancer in 2004 and underwent surgery, chemotherapy and radiation followed by five years of daily temoxifin. There is no indication of return.

Aortic heart valve was replaced with a biovalve (cow) 2014 and functions normally

Currently under treatment for diverticulitis but otherwise healthy except for inability to undertake any prolonged or strenuous physical activity.

REPLY
@colleenyoung

Hi @marko1, I believe that @ronan2011 @waynen @fairway5 @alphanumeric and @6608 all chose proton beam therapy for prostate cancer treatment. I hope they can answer some of your questions and share their experiences with you.

Jump to this post

I see I was mentioned in the above Email. Sorry for the delay but I was at the Mayo Clinic in Minnesota getting an MRI and talking with 2 of the specialists about newer ablation treatments. Unfortunately for a couple reasons, I am not a candidate for the Laser Heat Treatment or the Cryotherapy so will be having Prostate surgery sometime in the next couple months. I have not gotten info on radiation that makes me want to do it. At age 65 surgery appears to be the better way for me. I did find out that Cryotherapy freezing treatment is covered by insurance, but the newer Focal Laser Ablation is not covered for prostate, and could cost approx. $20,000 to have it performed.

REPLY

My husband was biopsied December 30 and cancer was found in 11 of the 12 cores. Gleason 7, grade 4+3, strong family history of cancer. Genetic test results are pending. A Phoenix urologist did the biopsy and wants to immediately talk about surgery even before scans are done. So, I made a call to request an appointment with Mayo Clinic. We've both had good experiences with Mayo and both had successful surgeries there. Gathering records to fax to Mayo and awaiting an appointment. I'm having trouble sleeping and tend to overthink like if he needs 48 radiation treatments, where are we going to stay? We live in Yuma. Cannot afford a hotel for a month or two.

REPLY
@bamagirlinaz

My husband was biopsied December 30 and cancer was found in 11 of the 12 cores. Gleason 7, grade 4+3, strong family history of cancer. Genetic test results are pending. A Phoenix urologist did the biopsy and wants to immediately talk about surgery even before scans are done. So, I made a call to request an appointment with Mayo Clinic. We've both had good experiences with Mayo and both had successful surgeries there. Gathering records to fax to Mayo and awaiting an appointment. I'm having trouble sleeping and tend to overthink like if he needs 48 radiation treatments, where are we going to stay? We live in Yuma. Cannot afford a hotel for a month or two.

Jump to this post

@bamagirlinaz I'mm pretty sure Mayo-Phoenix has some free lodging for cancer treatment patients. I would check with them for available. Best of luck.

REPLY
@dandl48

@bamagirlinaz I'mm pretty sure Mayo-Phoenix has some free lodging for cancer treatment patients. I would check with them for available. Best of luck.

Jump to this post

It's called Hope Lodge and it is next to Mayo in Scottsdale. I was there for 5 weeks. God bless them.

REPLY
@hannahkeels

It's called Hope Lodge and it is next to Mayo in Scottsdale. I was there for 5 weeks. God bless them.

Jump to this post

I saw the info on Hope Lodge but it only has 56 rooms and I imagine they're always full especially when the Snowbirds are here

REPLY
@dandl48

@bamagirlinaz I'mm pretty sure Mayo-Phoenix has some free lodging for cancer treatment patients. I would check with them for available. Best of luck.

Jump to this post

No free lodging. You can get a small discount on hotels. The Hope Lodge (Arizona Transplant House) is on the campus but it doesnt house many patients and because it's also for transplant patients, I would think it's hard to get into for just cancer radiation treatment.

REPLY
@bamagirlinaz

My husband was biopsied December 30 and cancer was found in 11 of the 12 cores. Gleason 7, grade 4+3, strong family history of cancer. Genetic test results are pending. A Phoenix urologist did the biopsy and wants to immediately talk about surgery even before scans are done. So, I made a call to request an appointment with Mayo Clinic. We've both had good experiences with Mayo and both had successful surgeries there. Gathering records to fax to Mayo and awaiting an appointment. I'm having trouble sleeping and tend to overthink like if he needs 48 radiation treatments, where are we going to stay? We live in Yuma. Cannot afford a hotel for a month or two.

Jump to this post

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.

REPLY

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.

REPLY
@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

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

REPLY
@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.

REPLY
@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.

REPLY
@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.

Jump to this post

Thank you for this info!

REPLY
Please login or register to post a reply.