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: This is my first post. New diagnosis of prostate cancer 09/07/2021. gleason 8 on first pathology MRI report…upgraded to gleason 9 when evaluated by a second pathology report. Apparently high risk. Am trying to get pencil beam proton therapy ASAP. Checked with one well known center and there is a 6 month wait list…am in process of contacting two other proton providers to see when they could begin treatments for me. Bone scan was good. Hoping that it doesn't spread before I can begin treatments…there is extra cellular extension.
Any comments appreciated…

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@bowmed

Hello: This is my first post. New diagnosis of prostate cancer 09/07/2021. gleason 8 on first pathology MRI report…upgraded to gleason 9 when evaluated by a second pathology report. Apparently high risk. Am trying to get pencil beam proton therapy ASAP. Checked with one well known center and there is a 6 month wait list…am in process of contacting two other proton providers to see when they could begin treatments for me. Bone scan was good. Hoping that it doesn't spread before I can begin treatments…there is extra cellular extension.
Any comments appreciated…

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Hello @bowmed and welcome to Mayo Clinic Connect. I can understand with your gleason score why a 6-month wait list doesn't seem fitting and think it is great that you are reaching out to other centers that may be able to provide you care sooner.

That said, in the event you'd like to add another to your list to explore, I have added information on Mayo Clinic's proton beam program.

– Proton Beam Therapy Program:
https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/home/orc-20185488
Where have you tried to date? Perhaps other members can offer some suggestions as well.

REPLY
@bowmed

Hello: This is my first post. New diagnosis of prostate cancer 09/07/2021. gleason 8 on first pathology MRI report…upgraded to gleason 9 when evaluated by a second pathology report. Apparently high risk. Am trying to get pencil beam proton therapy ASAP. Checked with one well known center and there is a 6 month wait list…am in process of contacting two other proton providers to see when they could begin treatments for me. Bone scan was good. Hoping that it doesn't spread before I can begin treatments…there is extra cellular extension.
Any comments appreciated…

Jump to this post

Hi Bowmed, I can see your concern. A Gleason of 9 is serious. With the radiation treatment have they suggested Antigen Deprivation Therapy to slow the progress of the cancer and to shrink the prostrate? It takes 2 months after the ADT shot to start radiation. Three years ago when I was diagnosed with a Gleason score of 8, I was able to get into the Phoenix Mayo Clinic a week after they checked my diagnosis and started radiation 2 months later. Don't know if they are backed up now.

I believe that they also have Volumetric Modulated arc Radiation treatment. It's a photon radiation therapy but causes less damage then IRMT. My radiation oncologist at Mayo recommended it to a friend of mine with a Gleason score of 8.

Hope you are able to find a place to get in earlier. I am glad I got the proton beam therapy. There were a few bumps along the way but the results were good.

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Hello Bowmed,

I was diagnosed with a PSA of 7.9 and a Gleason of 4+3=7. I contacted the Mayo Clinic in Phoenix in July of this year, had a consultation with a radiation oncologist, had a bone scan (clear), minor surgery for Space OAR and prostate markers, and just started Pencil Beam Proton Therapy last week. I’ve had 2 sessions thus far of the Proton Therapy and will have my 3rd today. A total of 28 sessions have been scheduled out for me. I did a ton of research regarding how to proceed with treating my cancer and feel, so far, that I made a good choice. The daily Proton treatments are a piece of cake. The stress of getting to the point of starting treatment, on the other hand for me was quite unnerving. So, I would encourage you to keep trying to see if you can go the Proton route. Best of luck and hang in there….

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@kansascityhusker

Hello Bowmed,

I was diagnosed with a PSA of 7.9 and a Gleason of 4+3=7. I contacted the Mayo Clinic in Phoenix in July of this year, had a consultation with a radiation oncologist, had a bone scan (clear), minor surgery for Space OAR and prostate markers, and just started Pencil Beam Proton Therapy last week. I’ve had 2 sessions thus far of the Proton Therapy and will have my 3rd today. A total of 28 sessions have been scheduled out for me. I did a ton of research regarding how to proceed with treating my cancer and feel, so far, that I made a good choice. The daily Proton treatments are a piece of cake. The stress of getting to the point of starting treatment, on the other hand for me was quite unnerving. So, I would encourage you to keep trying to see if you can go the Proton route. Best of luck and hang in there….

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Hello kansascityhusker:
I am in contact with Mayo/ Phoenix and am sending chart notes for consideration. also in contact with California Proton in San Diego…So, you started in JULY and just had your first treatment LAST Week. Are you having ADT as well? Did you have to wait 2 months after ADT shot?

Thanks!
Bowmed

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@bowmed

Hello kansascityhusker:
I am in contact with Mayo/ Phoenix and am sending chart notes for consideration. also in contact with California Proton in San Diego…So, you started in JULY and just had your first treatment LAST Week. Are you having ADT as well? Did you have to wait 2 months after ADT shot?

Thanks!
Bowmed

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Hi Bowmed,

I opted to NOT do ADT. In speaking to Mayo, I was offered the opportunity, given my cancer being rated intermediate risk, to join a clinical trial at Mayo where they were studying outcomes of Proton with ADT vs Proton without ADT. This clinical study has been in process for several years and I am told is just now wrapping up. The “preliminary” results show that there is basically no difference in outcomes for those that took the Proton with ADT vs those that did Proton without ADT. So, I opted to not do ADT. In terms of the time element for starting the Proton sessions, they were delayed at my request as I was vacationing in Colorado. My urologist had told me that given my cancer status being evaluated as intermediate risk, that there was no need to start treatment immediately.

Hope the above is helpful….

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@amandajro

Hello @bowmed and welcome to Mayo Clinic Connect. I can understand with your gleason score why a 6-month wait list doesn't seem fitting and think it is great that you are reaching out to other centers that may be able to provide you care sooner.

That said, in the event you'd like to add another to your list to explore, I have added information on Mayo Clinic's proton beam program.

– Proton Beam Therapy Program:
https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/home/orc-20185488
Where have you tried to date? Perhaps other members can offer some suggestions as well.

Jump to this post

Hello Amanda:
MD Anderson advised me to get ADT ASAP but i have been unable to get an appointment with stanford until 10/12/21…trying to see if a local urologist will provide the ADT shot…might have to take a flight to houston just for the shot…i am also in contact with mayo phoenix…
i was told mayo jacksonville does NOT have proton therapy by a contact from phoenix but they sent me a package yesterday fed-ex!
am also in contact with california proton in san diego…got too much moving too slowl…

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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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In addition to robotic surgery, I have been offered IMRT combined with ADT and also offered SBRT. I am interested in Proton treatment so I have another consult scheduled next week to talk about that option. The most nerve-wracking part is the decision-making process – it's like "pick your poison".

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@buckeye54

In addition to robotic surgery, I have been offered IMRT combined with ADT and also offered SBRT. I am interested in Proton treatment so I have another consult scheduled next week to talk about that option. The most nerve-wracking part is the decision-making process – it's like "pick your poison".

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Dear buckeye54, I understand the feeling you're having. It's the same one I had nearly 3 years ago. One thing that helped me was reading a book on beating Prostrate Cancer by Bob Marckini. In his book he has a table that he used to list some of the treatment options and the pros and cons of each one. He was going through the same thing you and I faced in picking our poison. He chose Proton Beam Therapy and talks about the rational. He did not have ADT with his treatment, so you would have to add the pros and cons of that as well.
After reading his book I chose Proton Beam Therapy.

When I met with my radiation oncologist he said I should also have ADT. My Gleason score was 8, high risk cancer. He told me the pro was giving me an added 20% chance of survival and the cons are the side effects. My background is in research and I had to see his research. He was on solid ground and I approved the ADT. So men with less sever cancer, e.g. Gleason of 6, can probably have just radiation, but discuss it with your doctor.

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Hi@bowmed. I'm a 75-year old married man in Australia who had a radical prostectemomy in 2010 at Royal Melbourne Hospital and didn't have any obvious symptoms at that time that led me to believe I had cancer. No symptoms whatsoever. My pre-operative PSA reading was 57.6 and Gleeson Score 7. Post-operative reading after 3 months was 0.03. Because my cancer had spead to lymph nodes and surriounding tissue, my prognosis was I would not be cancer free after surgery. Underwent radiation therapy in 2015 when my PSA reading was approaching 1.0 which brought it down to 0.15, Since then, my doubling time has been about 12 months. Eighteen months ago my PSA reading was 0.33 and my reading this month is 0.87.
My consulting specialist tells me I've nothing to be worried about and we'll discuss my next treatment options perhaps in the next 6 or 12 months when my PSA has risen to somewhere between 1.5 and 2.0. I presume the only available options I will ever have are ADT (androgen deprivation therapy) or chemo therapy.
I'm a US Citizen who has permanently resides in Australia since 1983. Australia has the best public hospitals and Medicare system that has enabled me to have cancer surgery, radiation treatment and most recently elective hip replacement surgery without cost. I also believe I inherited prostate cancer from my father who also discovered he had it late in life and died from it without affording surgery.
I'm the luckiest cancer survivor alive considering I live in Australia without private health insurance. I also want to say the public hospitals in Melbourne are world-class, staffed with multi-cultural doctors, nurses and other medicos of the highest credentials and expertise. I'm truly reconciled to dying of cancer someday and seek no sympathy knowning I'm being treated by the best in the world who practice cutting edge medicine and know their stuff. Living proof of that, I'm still working in a full-time job, physically active in my professional and persoinal life and praise the long established Australian public health system for extending if not able to save my life.

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In 2015 I had a prostatectomy and was told that that the lymph nodes were clear. In 2018 my PSA s readings started going up. I had three months of radiation treatment in 2019. PSA readings were fine until mid 2021. Then they started going up again. I am having a Choline 11 scan in a few days. Has anyone else faced a similar challenge.

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@downey

Hi@bowmed. I'm a 75-year old married man in Australia who had a radical prostectemomy in 2010 at Royal Melbourne Hospital and didn't have any obvious symptoms at that time that led me to believe I had cancer. No symptoms whatsoever. My pre-operative PSA reading was 57.6 and Gleeson Score 7. Post-operative reading after 3 months was 0.03. Because my cancer had spead to lymph nodes and surriounding tissue, my prognosis was I would not be cancer free after surgery. Underwent radiation therapy in 2015 when my PSA reading was approaching 1.0 which brought it down to 0.15, Since then, my doubling time has been about 12 months. Eighteen months ago my PSA reading was 0.33 and my reading this month is 0.87.
My consulting specialist tells me I've nothing to be worried about and we'll discuss my next treatment options perhaps in the next 6 or 12 months when my PSA has risen to somewhere between 1.5 and 2.0. I presume the only available options I will ever have are ADT (androgen deprivation therapy) or chemo therapy.
I'm a US Citizen who has permanently resides in Australia since 1983. Australia has the best public hospitals and Medicare system that has enabled me to have cancer surgery, radiation treatment and most recently elective hip replacement surgery without cost. I also believe I inherited prostate cancer from my father who also discovered he had it late in life and died from it without affording surgery.
I'm the luckiest cancer survivor alive considering I live in Australia without private health insurance. I also want to say the public hospitals in Melbourne are world-class, staffed with multi-cultural doctors, nurses and other medicos of the highest credentials and expertise. I'm truly reconciled to dying of cancer someday and seek no sympathy knowning I'm being treated by the best in the world who practice cutting edge medicine and know their stuff. Living proof of that, I'm still working in a full-time job, physically active in my professional and persoinal life and praise the long established Australian public health system for extending if not able to save my life.

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You are lucky indeed to be in Australia, the rest of the world knows how to handle there citizens with care. I was DX with prostate cancer in 2020 as GL6 3+3 and was on AS til early 2021 and a new biopsy was at GL7, 4+3 so off to the ADT+ EBRT (39 treatments) and finished last July. My PSA is now <0.04. So I'm very grateful for my Dr's and the technicians at Memorial Hermann in Houston. But it was expensive and thank god for Medicare or I would not be here possibly.

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