Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Tue, Mar 19 6:53pm

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?

Hi all, The number of members and discussions related to prostate cancer have grown such that it was time to open a group dedicated to prostate cancer. I invite members new and old to +Follow the new group (https://connect.mayoclinic.org/group/prostate-cancer/) and tell others a bit about you.

@donnelson @hodagwi @gmack @bboxer @philn @6608 @flor @jerrymayo123 @kujhawk1978 @403211th @jogger01 @tiss @billcando @speed7484 @klaken @rosarian @greywolf @mapleleafs @peekaafighter @hughj37 @franks59 @kcinthetropics @wrehab @alanr

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Hi all. I am new to this whole experience so I will share a little about what is happening. In November 2017, I had a PSA of 8.1 in a regular annual checkup. My next PSA in January 2019 read 196.7. We set a meeting with urology at the VA for February 2019 and had another reading, this time 541. We started hormone treatment with bicalutamide (sp?) and scheduled a biopsy for March 1. Those results confirmed cancer with Gleason score of 10. Bone scan an CTscan followed on March 13. Those results are not yet in. Scheduled to meet on March 25 to get results and for an Elligard injection that day.

The whole thing of course is new so have been working to remain positive but uncertainty is hard. Waiting for test results is hard.

What questions should I ask regarding treatment options going forward? Is leg fatigue and body fatigue normal?

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Well its decision day for me and I would love any feedback I can get on HIFU. I am waiting on feedback from Dr. Woodrum at Mayo MN. and another doctor in TX. I have read almost everything in the last 2 weeks and but still looking for more data to help me make the best decision on which treatment would be best. I have multilateral prostate cancer, a gleason score of 7, and my PSA is 4.5, I had surgery scheduled for March 26th, but have delayed it to learn more about this alternative treatment.

Norske stay positive, I not a doctor but the stress in dealing with this stuff can definitely wear you out. Good Luck

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I was diagnosed with prostate cancer in early January. I had surgery to remove my prostate on February 6th, 2019. My surgery was somewhat complicated. Surgery lasted 6 hours, and was hospitalized 4 days. I also had a drain in my side during my stay in the hospital. I am currently recovering and waiting to start radiation and hormone therapy sometime towards the middle of May. I recently turned 59, and have returned to work.

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Hi all. I see a lot of similarities in the postings I’ve read thus far. Happy to share my 2 cents. I was first treated for “PC” in 2011. Had 42 consecutive radiation treatments after which my PSA went under one. Eight years later symptoms of fatigue and and feeling not right returned and last November learned thru a blood test that the cancer had regenerated. I’m being treated with the Zytiga hormone and early results are good. The best “medicine” I got, however, was from a Mayo oncologist in a Living with Cancer seminar: Mind…Body…Spirit. Keep your mind open and positive, stay faithful to the bodily courses of treatment from the experts, and believe in the strength of a spirit above us in whatever form that belief takes us. We’re not alone.

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In June 2018 my GP noticed that my PSA was creeping up, but not real, 3.8. He is very cautious and referred me to my Urologist. The urologist said biopsy was only way to tell. Biopsy occurred in September and by then PSA jumped to 4.9. Biopsy showed cancer cells with Gleason score of 8 in one lob and 6 in another. The Urologist said it was serious and needed to be treated. He gave a book by Dr. Patrick Walsh from John Hopkins on Surviving Prostate Cancer, and scheduled follow up in two weeks to talk about treatment. The book is 520 pages and gives every known option for treatment. It was the most stressful two weeks of my life. The choice of treatment was mine.

As I was pouring over my options, my wife coincidentally was talking to a friend about my condition. He mentioned that he had a friend who treated his prostate cancer with Proton Beam radiation 17 years earlier and was cancer free. I contacted him to get more information. He referred me to Loma Linda University Medical Center where he was treated. Dr Walsh's book wasn't very encouraging about Proton Beam therapy being Superior to any other treatment, so I was looking for research on its effectiveness. I contacted Loma Linda and they sent me some literature, including a book by Robert J Marckini about beating prostate cancer without surgery. He is a survivor and talks about how he decided to you Proton Beam radiation, going down the same path I was going down. Robert also founded the "Brotherhood of the Balloon" organization to spread information on this therapy. At this point I decided to pursue Proton Beam Therapy, even though my GP and Urologist couldn't recommend it.

The web site for the Brotherhood of the Balloon listed the sites where I could get treatment. It was clear that my options were limited and the closest cancer center with the treat was 240 miles away. Fortunately, we have a second home in Arizona near the Mayo Clinic, which could provide the treatment. They accepted me for treatment and I met my radiation oncologist mid October. He quickly scheduled a bone scan and MRI to determine if the cancer had spread outside the prostate sac. Fortunately, it was still contained. His recommended treatment was three shots of Luprin at 6 month intervals. He said the first one would slow the rate of cancer progression, reduce the activity of the cancer cells and reduce the size of the prostrate. We had to wait two months before radiation could begin. The combination of hormone therapy and radiation increased my survival rate by 20%. My reading verified this information, but it also showed that some hospitals did not follow this practice. It is especially important for cases with Gleason scores at 8 or higher.

My radiation began on December 26. I had 20 treatments over 4 weeks. While at the clinic I met other patients who had anywhere from 5 to 44 treatments. Some were also getting chemo and radiation at the same time. It appears that the level of Gleason score and location affect treatment. Clearly, one size doesn't fit everyone. Mayo staff use the latest research to guide their treatment. The combination of hormone therapy and radiation does come with side effects, but are short term and manageable. It has been two months since the end of my radiation treatments and I'm feeling fine.

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Welcome all.
@norske46, I agree. Waiting is the hardest. There are so many factors to think about when weighing treatment options. It sounds like you are waiting for more results before your oncologist presents the options that are best for you. As you consider options, I think some important things to know are potential side effects and risk of recurrence. You might wish to participate in this discussion:
– Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/

@cupman, what did you hear back from the docs about high-intensity focused ultrasound (HIFU)? Are you a candidate? Did you see this article already?
– Counterpoint: Is HIFU for low-risk prostate Ca ready for prime time? https://www.urologytimes.com/modern-medicine-feature-articles/counterpoint-hifu-low-risk-prostate-ca-ready-prime-time

@twinsfan, what complicated the surgery? How was the return to work?

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@jimlinse

Hi all. I see a lot of similarities in the postings I’ve read thus far. Happy to share my 2 cents. I was first treated for “PC” in 2011. Had 42 consecutive radiation treatments after which my PSA went under one. Eight years later symptoms of fatigue and and feeling not right returned and last November learned thru a blood test that the cancer had regenerated. I’m being treated with the Zytiga hormone and early results are good. The best “medicine” I got, however, was from a Mayo oncologist in a Living with Cancer seminar: Mind…Body…Spirit. Keep your mind open and positive, stay faithful to the bodily courses of treatment from the experts, and believe in the strength of a spirit above us in whatever form that belief takes us. We’re not alone.

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@jimlinse, you're so right. We are more than our diagnosis: Mind, Body, Spirit. Other members would appreciate hearing about your experiences with Zytiga in this discussion:
– Zytiga for Prostate Cancer https://connect.mayoclinic.org/discussion/zytiga/

@waynen, I've seen Dr. Walsh's book recommended by others, too. It sure seems like a huge burden to ask the patient to choose the treatment. Luckily you have partners in your care team and experiences of other men. @6608, Bill also had successful proton beam treatment. Wayne, what side effects of hormone therapy and radiation did you experience?

Jim and Wayne, what tips might you have for @norske46 @cupman and @twinsfan as they consider treatment options? What questions should they ask their docs?

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@colleenyoung

Welcome all.
@norske46, I agree. Waiting is the hardest. There are so many factors to think about when weighing treatment options. It sounds like you are waiting for more results before your oncologist presents the options that are best for you. As you consider options, I think some important things to know are potential side effects and risk of recurrence. You might wish to participate in this discussion:
– Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/

@cupman, what did you hear back from the docs about high-intensity focused ultrasound (HIFU)? Are you a candidate? Did you see this article already?
– Counterpoint: Is HIFU for low-risk prostate Ca ready for prime time? https://www.urologytimes.com/modern-medicine-feature-articles/counterpoint-hifu-low-risk-prostate-ca-ready-prime-time

@twinsfan, what complicated the surgery? How was the return to work?

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Basically Pro and Cons, I am candidate. I continue to read and still question which is better, Surgery or HIFU? However, as of this week I committed to HIFU, and I am now researching to find the most experienced HIFU doctor in the country. Call it a second and third opinion from docs that provide this treatment. Thank you for the article. I will continue to share any new information

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@colleenyoung

@jimlinse, you're so right. We are more than our diagnosis: Mind, Body, Spirit. Other members would appreciate hearing about your experiences with Zytiga in this discussion:
– Zytiga for Prostate Cancer https://connect.mayoclinic.org/discussion/zytiga/

@waynen, I've seen Dr. Walsh's book recommended by others, too. It sure seems like a huge burden to ask the patient to choose the treatment. Luckily you have partners in your care team and experiences of other men. @6608, Bill also had successful proton beam treatment. Wayne, what side effects of hormone therapy and radiation did you experience?

Jim and Wayne, what tips might you have for @norske46 @cupman and @twinsfan as they consider treatment options? What questions should they ask their docs?

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The hardest part for me was who to talk to. The Urologist does the diagnosis, but his expertise is surgery. He had me schedule a session with a radiation oncologist, but he only did IRMT. I talked to patients who said their Urologist walked out of a meeting when they said they were considering Proton Therapy. Dr Walsh recommended that you consider contacting a National Cancer Center for treatment. They will have doctors with expertise in numerous treatment options. He also said they have better track record in curing cancer. All Mayo sites are centers, but their are others. My doctors didn't send me there. I had to find them. Unfortunately, they are not easily accessible to many people. There were patients at the Arizona Mayo Clinic from all over the country. You have to be very pro active and the resources to get their. Cancer society can provide free housing.

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@colleenyoung

@jimlinse, you're so right. We are more than our diagnosis: Mind, Body, Spirit. Other members would appreciate hearing about your experiences with Zytiga in this discussion:
– Zytiga for Prostate Cancer https://connect.mayoclinic.org/discussion/zytiga/

@waynen, I've seen Dr. Walsh's book recommended by others, too. It sure seems like a huge burden to ask the patient to choose the treatment. Luckily you have partners in your care team and experiences of other men. @6608, Bill also had successful proton beam treatment. Wayne, what side effects of hormone therapy and radiation did you experience?

Jim and Wayne, what tips might you have for @norske46 @cupman and @twinsfan as they consider treatment options? What questions should they ask their docs?

Jump to this post

Colleen asked about side effects. The hormone therapy does result in hot flashes, mine weren't as bad as some others. It also weakens bones, requiring taking calcium. It can increase breast size, but mine didn't change much. It also affects sexual ability. Fatigue was probably the most noticeable.

For radiation, the urethea is going to get hit. It will affect urination. Pain when urinating and urgency are the two most serious issues. They reduced the effects with Aleve and Flomax. The side effects from radiation are gone now.

Long term, all side effects should be gone. One advantage of Proton Beam Therapy is that it limits tissue damage, so only the prostrate got hit with the beam. The good cells will regenerate, but not the cancerous.

Also, during treatment I was able to continue normal activity, which is what they encourage.

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@waynen

The hardest part for me was who to talk to. The Urologist does the diagnosis, but his expertise is surgery. He had me schedule a session with a radiation oncologist, but he only did IRMT. I talked to patients who said their Urologist walked out of a meeting when they said they were considering Proton Therapy. Dr Walsh recommended that you consider contacting a National Cancer Center for treatment. They will have doctors with expertise in numerous treatment options. He also said they have better track record in curing cancer. All Mayo sites are centers, but their are others. My doctors didn't send me there. I had to find them. Unfortunately, they are not easily accessible to many people. There were patients at the Arizona Mayo Clinic from all over the country. You have to be very pro active and the resources to get their. Cancer society can provide free housing.

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Does anyone have experience working with university of Iowa hospital urology?

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@waynen

Colleen asked about side effects. The hormone therapy does result in hot flashes, mine weren't as bad as some others. It also weakens bones, requiring taking calcium. It can increase breast size, but mine didn't change much. It also affects sexual ability. Fatigue was probably the most noticeable.

For radiation, the urethea is going to get hit. It will affect urination. Pain when urinating and urgency are the two most serious issues. They reduced the effects with Aleve and Flomax. The side effects from radiation are gone now.

Long term, all side effects should be gone. One advantage of Proton Beam Therapy is that it limits tissue damage, so only the prostrate got hit with the beam. The good cells will regenerate, but not the cancerous.

Also, during treatment I was able to continue normal activity, which is what they encourage.

Jump to this post

I had a PSA of 6.7 in Nov. 2018. Biopsy in Dec.2018. I had 17 samples and 5 had cancer. One showed that the cancer was very aggressive. My Urologest recommended surgery. Had surgery March 19, 2019. Surgeon took out limnodes semon vessels. The biopsy on these showed aggressive cancer. Dr. Recommends hormone shots and radiation. Is this the correct decision to make?@colleenyoung

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@colleenyoung

Hi all, The number of members and discussions related to prostate cancer have grown such that it was time to open a group dedicated to prostate cancer. I invite members new and old to +Follow the new group (https://connect.mayoclinic.org/group/prostate-cancer/) and tell others a bit about you.

@donnelson @hodagwi @gmack @bboxer @philn @6608 @flor @jerrymayo123 @kujhawk1978 @403211th @jogger01 @tiss @billcando @speed7484 @klaken @rosarian @greywolf @mapleleafs @peekaafighter @hughj37 @franks59 @kcinthetropics @wrehab @alanr

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Hello. I am new to this group as of 5/2019. I have been tracking PSA since age 40 and am now 75. Over the years had growing concern and fear as score went slowly, but steadily up. Last summer, the PSA began a sudden upward climb from low 3 to over 5 in one month. This led to an MRI, a biopsy (Gleason of 8), a diagnosis and then a CT, bone scan and other tests.
I did a lot of research and three consults and concluded traditional radiation would be best. I wanted proton radiation at Mayo Clinic, but was told too much risk since I have a pacemaker and traditional beam radiation would be better. I completed the prescribed 20 treatments (one-month) about two weeks ago. I gladly rang the traditional treatment-is-over-bell at the Rad Center and now waiting to see how the PSA score will do in six months. Not sure how other readers can contact me, but more-than-happy to visit about this. By-the-way, Mayo Clinic exceeded my expectations in every way possible. Please consider it for you or your family or other loved ones if appropriate. Truly, it has been a "medical mecca" for me.

Mike

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OUMike, I'm 61 with a Gleason 8 and a PSA of 18. Waiting for Mayo to consult on my options for treatment. I live 260 miles from Rochester so I doubt I will stay in their system.

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