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Ronoir
@ronoir

Posts: 7
Joined: Jul 29, 2016

prostate cancer treatment choices

Posted by @ronoir, Jul 29, 2016

Hello everyone, new member looking for some experiences/advise on post radical prostatectomy treatment. my stats: Gleason 9, lymph nodes, seminal vesicle, margins, fat tissue cap all positive for cancer. 5 of 41 lymph nodes removed were positive also seminal vesicle was removed. p.s.a. 3 mos. post op .08, .10 .12 @.15 presently. Prostatectomy was part of protocol for immunotherapy vaccine clinical trial. Would appreciate any input you may have on radiation and/or hormone therapies. Thanks

REPLY

I underwent nerve sparing robotic surgical removal of my prostate at Duke U Hospital in 2007 and some PSA showed up about 15 dos later, 0.1. My biopsy showed a Gleason 6 by Duke’s account and a Gleason 7 by UNC’s. My tumor was in a bad spot, right up on my urethra. Post surgical report showed clear lymph nodes but an irritated prostate bed, probably due to prolonged infection re the surgeon. PSA rose very slowly but steadily until it showed a somewhat abrupt jump to .34 in 2012. I was living in Phoenix at the time so I had a consult with the radiation oncologist at Mayo AZ. Memory fails me as to how many treatments I had, 35 sounds right, at 68 Gy I believe. They just did the prostate bed due to by Gleason score, PSA history, and a clear some scan. No near term side effects other than some mild skin irritation. I was lucky in that the surgeon I had at Duke was highly competent and I never had any serious urinary retention issues. Radiation didn’t cause any either. Post radiation my PSA augured down to 0.1 and stayed there until this January.

>My msg got truncated 🙁 will add later

This last January I suddenly developed a late radiation side effect, hemorrhagic cystitis, and it lasted about 2 months at various intensities. As part of the workup for it I was given a sensitive PSA which came back at 0.03. So, I’m now being followed every 6 months since Mayo doesn’t do sensitive PSA’s and doesn’t consider it a recurrence until it hits around 0.2 or rises steeply. Per the radiation oncologist I had a higher likelihood of incurring side effects than the usual patient since I have a connective tissue disorder.

Here is something about combining salvage radiation with ADT but I’m not sure if that’s what you’re intending to do. Maybe you are looking at radiation, outcome evaluation, ADT if needed.

https://prostatecancerinfolink.net/2015/06/03/combining-adt-and-salvage-radiation-therapy-mproves-outcomes/

There are some major breakthroughs in imaging having an impact on the diagnosis and treatment of recurrent prostate cancer. Just something to have on your radar.

http://www.mayoclinic.org/medical-professionals/clinical-updates/general-medical/novel-treatments-for-recurrent-prostate-cancer

So I take it that your bone scan was clear as well as any other images?

There are some sites out there where many patients in your position share experiences, such as https://prostatecancerinfolink.net. I hesitate to recommend
one since I haven’t gone through ADT. I do have hypogonadism, low testosterone but not zero, probably as a consequence of autoimmunity, or just aging. It does impact multiple domains, no question.

So what have your doctors advised as immediate next steps?

Welcome @ronoir.
Let me introduce to the group of members talking about prostate cancer here on Connect. Please meet @johnwburns @donnelson @oldkarl @flor @BuckyFestoon @giddyup1 @morris to name a few.

You can learn a bit more about each of them from these recent discussions:
https://connect.mayoclinic.org/discussion/prostate-ancer-treated-with-leuprolide/
https://connect.mayoclinic.org/discussion/proton-therapy-for-prostate-cancer/
https://connect.mayoclinic.org/discussion/i-just-received-the-diagnosis-of-prostate-cancer-from-my-urologist-on/

Ronoir, what treatment options are you considering?

@johnwburns

I underwent nerve sparing robotic surgical removal of my prostate at Duke U Hospital in 2007 and some PSA showed up about 15 dos later, 0.1. My biopsy showed a Gleason 6 by Duke’s account and a Gleason 7 by UNC’s. My tumor was in a bad spot, right up on my urethra. Post surgical report showed clear lymph nodes but an irritated prostate bed, probably due to prolonged infection re the surgeon. PSA rose very slowly but steadily until it showed a somewhat abrupt jump to .34 in 2012. I was living in Phoenix at the time so I had a consult with the radiation oncologist at Mayo AZ. Memory fails me as to how many treatments I had, 35 sounds right, at 68 Gy I believe. They just did the prostate bed due to by Gleason score, PSA history, and a clear some scan. No near term side effects other than some mild skin irritation. I was lucky in that the surgeon I had at Duke was highly competent and I never had any serious urinary retention issues. Radiation didn’t cause any either. Post radiation my PSA augured down to 0.1 and stayed there until this January.

>My msg got truncated 🙁 will add later

This last January I suddenly developed a late radiation side effect, hemorrhagic cystitis, and it lasted about 2 months at various intensities. As part of the workup for it I was given a sensitive PSA which came back at 0.03. So, I’m now being followed every 6 months since Mayo doesn’t do sensitive PSA’s and doesn’t consider it a recurrence until it hits around 0.2 or rises steeply. Per the radiation oncologist I had a higher likelihood of incurring side effects than the usual patient since I have a connective tissue disorder.

Here is something about combining salvage radiation with ADT but I’m not sure if that’s what you’re intending to do. Maybe you are looking at radiation, outcome evaluation, ADT if needed.

https://prostatecancerinfolink.net/2015/06/03/combining-adt-and-salvage-radiation-therapy-mproves-outcomes/

There are some major breakthroughs in imaging having an impact on the diagnosis and treatment of recurrent prostate cancer. Just something to have on your radar.

http://www.mayoclinic.org/medical-professionals/clinical-updates/general-medical/novel-treatments-for-recurrent-prostate-cancer

So I take it that your bone scan was clear as well as any other images?

There are some sites out there where many patients in your position share experiences, such as https://prostatecancerinfolink.net. I hesitate to recommend
one since I haven’t gone through ADT. I do have hypogonadism, low testosterone but not zero, probably as a consequence of autoimmunity, or just aging. It does impact multiple domains, no question.

So what have your doctors advised as immediate next steps?

Jump to this post

I was advised to check my p.s.a.in 3 mos. and if above .20 then radiation would be of no value given the involvement with lymph nodes , seminal vesical, fatty cap and margins and that the cancer would have most likely moved beyond my prostate bed in which case ADT was recommended. Given the potential risks of radiation and with only 25% chance of it (radiation) doing me any good at this point im reluctant to go the radiation route even though just below .20 so far. Thank you for your input and any additional will be very appreciated

@colleenyoung

Welcome @ronoir.
Let me introduce to the group of members talking about prostate cancer here on Connect. Please meet @johnwburns @donnelson @oldkarl @flor @BuckyFestoon @giddyup1 @morris to name a few.

You can learn a bit more about each of them from these recent discussions:
https://connect.mayoclinic.org/discussion/prostate-ancer-treated-with-leuprolide/
https://connect.mayoclinic.org/discussion/proton-therapy-for-prostate-cancer/
https://connect.mayoclinic.org/discussion/i-just-received-the-diagnosis-of-prostate-cancer-from-my-urologist-on/

Ronoir, what treatment options are you considering?

Jump to this post

hello all, presuming you had opportunity to read my above reply I’m looking at radiation and or ADT, need to decide soon. Thank you in advance for any input and thank you Colleen!

@johnwburns

I underwent nerve sparing robotic surgical removal of my prostate at Duke U Hospital in 2007 and some PSA showed up about 15 dos later, 0.1. My biopsy showed a Gleason 6 by Duke’s account and a Gleason 7 by UNC’s. My tumor was in a bad spot, right up on my urethra. Post surgical report showed clear lymph nodes but an irritated prostate bed, probably due to prolonged infection re the surgeon. PSA rose very slowly but steadily until it showed a somewhat abrupt jump to .34 in 2012. I was living in Phoenix at the time so I had a consult with the radiation oncologist at Mayo AZ. Memory fails me as to how many treatments I had, 35 sounds right, at 68 Gy I believe. They just did the prostate bed due to by Gleason score, PSA history, and a clear some scan. No near term side effects other than some mild skin irritation. I was lucky in that the surgeon I had at Duke was highly competent and I never had any serious urinary retention issues. Radiation didn’t cause any either. Post radiation my PSA augured down to 0.1 and stayed there until this January.

>My msg got truncated 🙁 will add later

This last January I suddenly developed a late radiation side effect, hemorrhagic cystitis, and it lasted about 2 months at various intensities. As part of the workup for it I was given a sensitive PSA which came back at 0.03. So, I’m now being followed every 6 months since Mayo doesn’t do sensitive PSA’s and doesn’t consider it a recurrence until it hits around 0.2 or rises steeply. Per the radiation oncologist I had a higher likelihood of incurring side effects than the usual patient since I have a connective tissue disorder.

Here is something about combining salvage radiation with ADT but I’m not sure if that’s what you’re intending to do. Maybe you are looking at radiation, outcome evaluation, ADT if needed.

https://prostatecancerinfolink.net/2015/06/03/combining-adt-and-salvage-radiation-therapy-mproves-outcomes/

There are some major breakthroughs in imaging having an impact on the diagnosis and treatment of recurrent prostate cancer. Just something to have on your radar.

http://www.mayoclinic.org/medical-professionals/clinical-updates/general-medical/novel-treatments-for-recurrent-prostate-cancer

So I take it that your bone scan was clear as well as any other images?

There are some sites out there where many patients in your position share experiences, such as https://prostatecancerinfolink.net. I hesitate to recommend
one since I haven’t gone through ADT. I do have hypogonadism, low testosterone but not zero, probably as a consequence of autoimmunity, or just aging. It does impact multiple domains, no question.

So what have your doctors advised as immediate next steps?

Jump to this post

Agreed, it does seem like the risk/reward make radiation appear not to be worth it.

I mentioned blogs about ADT and there are some very good suggestions to be found in some for how to optimize quality of life while on it. One ‘celebrity’ in this area is Dr Charles ‘Snuffy’ Myers who is a long term advanced prostate cancer survivor and who speaks to all aspects of ADT. He is also informative about the notion of oligometastatic treatment which was pioneered at the Dattoli Clinic in Fl and is now practiced in a number of major clinics, including Mayo Rochester. What I don’t care for about Myers is that he is profit intensive.

I know that this is unsolicited, but do everything to can to retain mastery over the situation. Exercise is a good way to do that, even moderate.

If you have even a shade of doubt that you are getting the best available treatment, get a consult with a world class clinic.

US News & World Report ranks hospitals for specialties and does it by location

Here is Mayo’s general info

http://www.mayoclinic.org/patient-visitor-guide

There are a number of clinics that offer online second opinions but I can’t vouch for that process.

Good luck and keep in touch.

@johnwburns

I underwent nerve sparing robotic surgical removal of my prostate at Duke U Hospital in 2007 and some PSA showed up about 15 dos later, 0.1. My biopsy showed a Gleason 6 by Duke’s account and a Gleason 7 by UNC’s. My tumor was in a bad spot, right up on my urethra. Post surgical report showed clear lymph nodes but an irritated prostate bed, probably due to prolonged infection re the surgeon. PSA rose very slowly but steadily until it showed a somewhat abrupt jump to .34 in 2012. I was living in Phoenix at the time so I had a consult with the radiation oncologist at Mayo AZ. Memory fails me as to how many treatments I had, 35 sounds right, at 68 Gy I believe. They just did the prostate bed due to by Gleason score, PSA history, and a clear some scan. No near term side effects other than some mild skin irritation. I was lucky in that the surgeon I had at Duke was highly competent and I never had any serious urinary retention issues. Radiation didn’t cause any either. Post radiation my PSA augured down to 0.1 and stayed there until this January.

>My msg got truncated 🙁 will add later

This last January I suddenly developed a late radiation side effect, hemorrhagic cystitis, and it lasted about 2 months at various intensities. As part of the workup for it I was given a sensitive PSA which came back at 0.03. So, I’m now being followed every 6 months since Mayo doesn’t do sensitive PSA’s and doesn’t consider it a recurrence until it hits around 0.2 or rises steeply. Per the radiation oncologist I had a higher likelihood of incurring side effects than the usual patient since I have a connective tissue disorder.

Here is something about combining salvage radiation with ADT but I’m not sure if that’s what you’re intending to do. Maybe you are looking at radiation, outcome evaluation, ADT if needed.

https://prostatecancerinfolink.net/2015/06/03/combining-adt-and-salvage-radiation-therapy-mproves-outcomes/

There are some major breakthroughs in imaging having an impact on the diagnosis and treatment of recurrent prostate cancer. Just something to have on your radar.

http://www.mayoclinic.org/medical-professionals/clinical-updates/general-medical/novel-treatments-for-recurrent-prostate-cancer

So I take it that your bone scan was clear as well as any other images?

There are some sites out there where many patients in your position share experiences, such as https://prostatecancerinfolink.net. I hesitate to recommend
one since I haven’t gone through ADT. I do have hypogonadism, low testosterone but not zero, probably as a consequence of autoimmunity, or just aging. It does impact multiple domains, no question.

So what have your doctors advised as immediate next steps?

Jump to this post

Thank’s a ton John! Happy to hear from someone as knowledgeable as yourself
that my thoughts on treatment are plausible and will continue my thrice
weekly workouts as I have the past 40+ years. Regard’s

DOES ANYONE KNOW IF MAYO JACKSONVILLE IS RATED AS WELL AS THE MAIN ROCHESTER LOCATION.HAS ANYONE HAD SUCCESS WITH ONE PATICULAR FORM OF TREATMENT? WHAT ARE THE CURRENT TREATMENT OPTIONS ?

@trishtrish

DOES ANYONE KNOW IF MAYO JACKSONVILLE IS RATED AS WELL AS THE MAIN ROCHESTER LOCATION.HAS ANYONE HAD SUCCESS WITH ONE PATICULAR FORM OF TREATMENT? WHAT ARE THE CURRENT TREATMENT OPTIONS ?

Jump to this post

Hello trishtrish and welcome to Connect. I moved your discussion from Men’s Health to the Cancer group and added it to a current discussion taking place on prostate cancer and treatments. I encourage you to read the whole discussion and explore the many great links that are in this discussion.

I would also like to introduce you to @warrens, @dglass4040, @ronoir, @oldkarl, and @morris who have previously discussed their experiences with prostate cancer and various treatments for prostate cancer.

I am also inviting @travelgirl who was treated for cancer in Jacksonville, as well as @v1crew and @coastalgirl who are in the transplant program in Jacksonville. They may be able to provide insight on their experiences with receiving treatment at Mayo Clinic Jacksonville.

@trishtrish, it may be helpful for other members if you were willing to share a bit more about your diagnosis of prostate cancer. What are your concerns about prostate cancer, and which specific treatments you are curious about?

@trishtrish

DOES ANYONE KNOW IF MAYO JACKSONVILLE IS RATED AS WELL AS THE MAIN ROCHESTER LOCATION.HAS ANYONE HAD SUCCESS WITH ONE PATICULAR FORM OF TREATMENT? WHAT ARE THE CURRENT TREATMENT OPTIONS ?

Jump to this post

hi. I don’t know about MN vs FL but what I can tell you is that I have been to a multitude of hospitals. I have never been to one where the staff listen to you, and try to help you. From the valets on up.though I am not a cancer patient, if that program is anything like the transplant program, I would go with it . The facility is state of the art, clean,and professional. I have a lot of confidence in this facility. Plus it doesn’t snow here! lol

@trishtrish

DOES ANYONE KNOW IF MAYO JACKSONVILLE IS RATED AS WELL AS THE MAIN ROCHESTER LOCATION.HAS ANYONE HAD SUCCESS WITH ONE PATICULAR FORM OF TREATMENT? WHAT ARE THE CURRENT TREATMENT OPTIONS ?

Jump to this post

We have been to both Rochester and Jacksonville. My husband’s radical prostatectomy was performed in Rochester, and he’s had several different procedures at Mayo in Jacksonville. Both institutions are AMAZING. And, someone above mentioned staff not slowing down to speak to you and listen to your concerns–well, you won’t find anyone like that at either of these Mayos. We found both institutions to run like (excuse the language) well-oiled machines. Highly organized, catering to their employees, their patients AND visitors. So that being said, one really needs to look for the right doctor, no matter the institution.

@trishtrish

DOES ANYONE KNOW IF MAYO JACKSONVILLE IS RATED AS WELL AS THE MAIN ROCHESTER LOCATION.HAS ANYONE HAD SUCCESS WITH ONE PATICULAR FORM OF TREATMENT? WHAT ARE THE CURRENT TREATMENT OPTIONS ?

Jump to this post

Welcome to Connect, @rinron. It’s helpful to have someone who has had experience at both the FL and MN locations of Mayo Clinic. How is your husband doing today? Is he in treatment?

Hey @ronroir, we haven’t heard from you for a while. What treatment decisions have you made? Radiation?

I have corresponded with this bog before. My prostate cancer received 43 days of radiation several years ago. About 2 years ago the PSA started to rise and I was given a bone scan which showed no problems. The PSA continued to rise and I had more tests with no real answer. The doctor suggested Lupron but after research and talking with some folks here I became reluctant to embark on this form of chemical “castration” if you will. A one month trial was suggested by my medical oncologist but that was not available here with Lupron, only by another medicine with a name that started with “a”. More tests followed, another bone scan, a CT scan, etc and there was still no spread of the cancer from the prostate. The PSA which now was 20.. Now the suggestion is Bicalcutamide monotheraohy. Has anyone had this therapy? if so, how did it go?

Welcome back, @donnelson,

I can imagine you must be quite worried, but we’re so glad to hear from you again. Thank you for reaching out to the Connect community.
I’d like to introduce you to @BuckyFestoon @giddyup1 @robertjohn @hamhock, in this Connect discussion, “Prostate Cancer,” http://mayocl.in/2nYLGbQ, with the hope they will return with some insight for you.

From my research, it seems that bicalutamide (Casodex), is part of hormone therapy, and one of the medications known as anti-androgens, which prevent testosterone from reaching your cancer cells; you can read more, here: http://mayocl.in/2oXbG8j
And, here is more information about a team of researchers from Mayo Clinic whose findings may have important implications for men who have a rising prostate-specific antigen (PSA) test: http://mayocl.in/2pjhKrn

@donnelson, what does your doctor say about the PSA level rising again?

@donnelson

I have corresponded with this bog before. My prostate cancer received 43 days of radiation several years ago. About 2 years ago the PSA started to rise and I was given a bone scan which showed no problems. The PSA continued to rise and I had more tests with no real answer. The doctor suggested Lupron but after research and talking with some folks here I became reluctant to embark on this form of chemical “castration” if you will. A one month trial was suggested by my medical oncologist but that was not available here with Lupron, only by another medicine with a name that started with “a”. More tests followed, another bone scan, a CT scan, etc and there was still no spread of the cancer from the prostate. The PSA which now was 20.. Now the suggestion is Bicalcutamide monotheraohy. Has anyone had this therapy? if so, how did it go?

Jump to this post

Dear @donnelson,

This is @BuckyFestoon. I have a few questions for you.
1. Have you had your prostate removed? Prior to or following the radiation?
2. Are you now or have you ever been treated at Mayo Clinic Rochester?
3. Have you ever heard of the C-11 Choline PET Scan? Currently only offered at the Mayo Clinic in Rochester.
4. What is your age?

A bit of background on me. I am 4 years cancer free and doing GREAT, following: a PSA of over 25,000 in 2011!!! Late Stage IV prostate cancer, almost complete kidney and liver failure, Lupron therapy, bicalutamide therapy, Taxotere chemotherapy, 2 major surgeries including: a prostatectomy, an orchiectomy and removal of about a dozen cancerous lymph nodes (ranging in size from a golf ball to a nerf football). In short I’ve seen and done it all when it comes to the diagnosis and treatment of prostate cancer.

I can report my thoughts and reactions to any or all of these therapies but before I do it would be helpful to know the answers to the above questions.

All my best,

Bucky Festoon.

I was diagnosed with prostate cancer last month. My Gleason score was a 7 which puts me at the intermediate stage. My urologist gave me 2 options – surgery or radiation therapy. I opted for radiation. I then was referred and consulted with a radiologist /oncologist last week. Knowing I chose radiation therapy , he offered me 2 types of treatment. 1) Hormone Therapy coupled with Radiation Therapy. He explained that Hormone therapy was taking a shot of hormones from my urologist first which would last 6 months. He went on to say that it would be like taking gasoline out of a car meaning I would loose my testosterone and my libido would be affected. He said my PSA level would go down from this shot from my current reading of 4.7 to .8 or lower. Then he explained after 2 months I then would be treated with radiation therapy. 2) My second option was 28 treatments of radiation therapy which would be 5 days a week for 5.3 weeks.
I chose Radiation Therapy only because the cure rate for both treatments were 75% and in addition I have cardiovascular issues. I start my 28 treatments in June.

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