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.

@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?

Jump to this post

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".

REPLY
@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".

Jump to this post

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.

REPLY

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.

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY

I am new to this group. Just did imaging. Urologist found concerning lesion. Had a few high PSA's since April of this year. Last one was 6.49. I am 64 and a university director. Urologist says lesion is a 5. I have scheduled a biopsy. No family history. Urologist says localized to prostate. No spread. I have no symptoms. Had blood in urine last Spring. GP thought it was kidney stones. It was not. Went to urologist who did an ultrasound and office prostate exam in April and al was well, normal. PSA stated elevation in May, down in June, back up the last two tests. Biopsy scheduled for Dec 25. Any thoughts?

REPLY

I'm sort of new here as well but wanted to reply. My history is being dumb enough to not get a blood test for a few years, find an elevated PSA 11.5, biopsy, Gleasons of 6-7, prostatectomy, in recovery from the surgery and doing pretty well.

I'm sorry to hear that this is something you have to deal with.

Obviously the biopsy will give you the answers you're looking for, but, 6.49 seems like it could really be anything. Also the history here is a little hard to unpack for me. It sounds like you're saying….you had hematuria in Spring of 2020?, went for an office visit with a urologist who did a digital exam and ultra sound and didn't find anything. I'm absolutely NOT a medical professional but I had this exact thing happen and the concern with my urologist when presenting with hematuria and no back pain was a bladder problem. It seemed to be his diagnostic flow chart if you will. We did a cystoscopy, have you done this? (mine actually did turn out to be kidney stones at that time, they were the rare kind that had zero pain associated and easily passed)

Then it sounds like you're saying things were normal as recent as this April. Sounds like you are being considerably more proactive than I was, kudos.

I was unaware there was a grading system for lesions, so I don't know what the 5 indicates, can't comment at all on this.

With the PSA going up and down, I'd think it could be a lot of things depending on how much it's fluctuating. My PSA started up, and kept climbing. Taking the lesion out of the equation, I'd think it could easily be a recurring prostatitis. I've had that happen after a 50 mile bike ride, ( a change of seat fixed that).

My point for all the storytelling is, there are a few other possibilities. Unfortunately this is going to be a looming factor in your mind till you get the biopsy results. In my case, keeping busy and keeping my mind occupied with other things got me through.

I applaud you're decision to find out for sure. My digital exam found no lesions and the ultrasound showed normal size, we came close to not doing the biopsy for three months, that three months in my case could have made a huge difference in spread.

Lastly, you're having a biopsy on Christmas? 🙂 (what? it was a thought!)

If you have any specific questions, don't hesitate to ask them here. It's a great group and was very helpful to me.

Best of luck to you, keep us posted!

REPLY

I am 10 months into Stage IV Prostate Cancer. Diagnosis was December 18, 2020. Treatment started First week of January 2021. Radiation 20 sessions, Chemo 5 months, and now Hormone. Cancer team was outstanding. Had ti move to be closer to family. Starting over with new cancer team. PSA's gone from 118 to 2.25. Learning how to live with cancer. Those words "Can't be cured but can be treated," I first heard last December are still fresh in my mind. I was bedridden for six months. Now I am walking with a cane or walker. I've seen myself transitioning from a total shock phase to learning to live with cancer phase. Cancer is my daily dark cloud. Show up everyday and follows me everywhere. Find reading/learning about other peoples cancer journey therapeutic and healing. Thank you for your stories.

REPLY

Welcome new members @drggkelley @web265 @proftom2

@drggkelley, I too applaud you for being proactive and not delaying getting this investigated. Do you have any questions about next steps or the biopsy?

@proftom2, yes, cancer can be like a dark cloud and constant companion. But it sounds like there's some silver lining. Glad to hear you're walking again. How is it being closer to family? Are they supportive?

REPLY

Hi, brand new to this group. Diagnosed about 3 weeks ago. PSA was slightly high but had doubled in a few months. Completed MRI and biopsy and diagnosed with a couple of tumors, Gleason score 4+4+8. Told this was a high grade, high risk, more aggressive type of cancer. Going back week after next for bone scan and then meet with Urologist/Surgeon again and also Radiation Oncologist. Not sure what to expect.

REPLY
Please sign in or register to post a reply.