Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young @colleenyoung, Mar 19, 2019

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?

@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.

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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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Mike, your experience is similar to mine. My primary care physician caught the steady increase in my PSA count and referred me to my Urologist. By the time of my biopsy, it jumped a point. After I was diagnosed with cancer, it jumped again, going from 3.8 to 6.1 in 4 months. My Gleason also was 8.

The toughest thing after the diagnosis was what to do. My Urologist gave me a book with all the options. After reading the book, he asked me what I wanted to do. Totally confused, I sought out people who had been treated and decided to stay away from surgery and look into Proton Beam Therapy. Fortunately, like you, I eventually contacted Mayo Clinic in Phoenix. Mayo was very professional and gave me the best information on what to expect. They confirmed my diagnosis and then put me through a bone scan and hour and half MRI to be sure that the cancer was contained in the prostate, which it was. Since my cancer was more advanced, they put me on hormone therapy to slow down its progression. It also made the cancer cells less active and shrunk the prostate, making it easier to radiate. The research indicates that I had a 20 per cent greater success of survival with the combination of radiation and hormone therapy then just the radiation. We then waited two months before treatment started. I also had 20 treatments and finished at the end of January. Just had my check up and PSA was negligible.

I won't tell you that it was a piece of cake. The hormone therapy has some side effects like no libido, tiredness, muscle loss, weight gain, and moodiness. However, I was able to be active throughout the whole process, and would do it again.

Through the process, I met a number of people receiving Proton Beam Therapy. Their story was similar to mine. Mostly, they found out about the therapy on their own, and some were discouraged from having the therapy. Many traveled a great distance to get the therapy. Fortunately, Mayo has rent free facilities available.

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Welcome new members to the Prostate Cancer group. @pbeltz @qberry @jarrod @markhouldsworth @janetq @cljohnson @albert1123 @cancerkiller @jayhawkdave and @erinhaefner. We look forward to getting to know your story.

What treatments have you had or are you considering? How are you doing?

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@colleenyoung

Welcome new members to the Prostate Cancer group. @pbeltz @qberry @jarrod @markhouldsworth @janetq @cljohnson @albert1123 @cancerkiller @jayhawkdave and @erinhaefner. We look forward to getting to know your story.

What treatments have you had or are you considering? How are you doing?

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My husband had DaVinci surgery in July 2009, it was wonderful but, on his 5th year checkup his psa number started climbing a little, so finally they gave him a hormone shot, in November 2018, his number was negligible in March 2019, We are sticking with that so far, but I would like him to do the c-11 chloline test to see if the cancer is there and has it spread. There is another test for detecting reoccurring cancer, even small amounts, called Axumin done in our area(Buffalo, NY) and in Cleveland Clinic, Ohio. Right now we are waiting for his next psa test.

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@maryv449

My husband had DaVinci surgery in July 2009, it was wonderful but, on his 5th year checkup his psa number started climbing a little, so finally they gave him a hormone shot, in November 2018, his number was negligible in March 2019, We are sticking with that so far, but I would like him to do the c-11 chloline test to see if the cancer is there and has it spread. There is another test for detecting reoccurring cancer, even small amounts, called Axumin done in our area(Buffalo, NY) and in Cleveland Clinic, Ohio. Right now we are waiting for his next psa test.

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I have had the Choline-11 test twice. I was told by my doctor at Mayo Clinic that tests do not show cancer until the PSA is somewhere between 1 and 2. When my PSA started to rise I was taken off hormone therapy until my number rose to that. Then I had the Choline-11 test and an MRI. The cancer was spotted and I’m now back on hormone therapy and will begin radiation therapy soon.

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@maryv449

My husband had DaVinci surgery in July 2009, it was wonderful but, on his 5th year checkup his psa number started climbing a little, so finally they gave him a hormone shot, in November 2018, his number was negligible in March 2019, We are sticking with that so far, but I would like him to do the c-11 chloline test to see if the cancer is there and has it spread. There is another test for detecting reoccurring cancer, even small amounts, called Axumin done in our area(Buffalo, NY) and in Cleveland Clinic, Ohio. Right now we are waiting for his next psa test.

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maryv449: Hello. I have recently completed 20 treatments for prostate cancer st CLC and am taking hormone shots. I have started the "watch and wait" time period. Have not heard of the c-11 chloline test or of Axumin, but do appreciate raising your questions to this group about those topics and hope to be learning about them if needed. Thank you.

OUMike

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@jap57 @oumike @maryv449 here's some information to augment this discussion you've started about the improved detection with advanced PET scans. @kujhawk1978 @philn and @BuckyFestoon may also have more info to add from their experiences.

– Choline C-11 PET scan https://www.mayoclinic.org/tests-procedures/choline-c-11-pet-scan/about/pac-20384628
– Axumin PET scan https://www.verywellhealth.com/axumin-pet-scans-for-prostate-cancer-4126111

And these videos

@jap57, what type of radiation will you be starting?

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@colleenyoung

@jap57 @oumike @maryv449 here's some information to augment this discussion you've started about the improved detection with advanced PET scans. @kujhawk1978 @philn and @BuckyFestoon may also have more info to add from their experiences.

– Choline C-11 PET scan https://www.mayoclinic.org/tests-procedures/choline-c-11-pet-scan/about/pac-20384628
– Axumin PET scan https://www.verywellhealth.com/axumin-pet-scans-for-prostate-cancer-4126111

And these videos

@jap57, what type of radiation will you be starting?

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The C11 Choline and Axumin scans are both FDA approved for recurrent PCa, thus they are covered by insurance. Mayo generally accepts you as a patient for their C11 Choline scan when your PSA reaches 1.5. That is higher than most radiology medical specialists will tell you to be successful with SRT to the prostate bed. Most will tell you for SRT to be successful your PSA should only be .3 to .5. That’s the dilemma, the higher the PSA, the greater the probability the scan will locate the recurrence. The Aximun scan does work better at lower PSAs, my radiologist want to scan when my PSA hits .4 using the Aximun scan here in Kansas City

One thing to consider is the experience of the personnel reading the scans. A medical center just starting up their program may not be the same as Mayo in Rochester who has extensive experience with the C11 Choline.

While overseas in Europe and Australia the PMSA scans are in widespread use, here in the US they are in clinical trials. They are definitely better than the C11 Choline and Aximun scans, especially at lower PSA levels.

I had 4 C11 Choline scans at Mayo, it was amazing to sit with my radiologist as she showed me the 3D IMRT treatment plan she built using the images from the C11 Choline scan…think smart versus dumb bombs.

There is no doubt newer imaging can be a factor in determining the treatment plan. It’s not inexpensive, about $1800 out of pocket for each C11 Choline scan. The question I asked and so should you, “will this change the treatment plan if it locates the recurrence…” for me the answer was yes.

Kevin

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@kujhawk1978

The C11 Choline and Axumin scans are both FDA approved for recurrent PCa, thus they are covered by insurance. Mayo generally accepts you as a patient for their C11 Choline scan when your PSA reaches 1.5. That is higher than most radiology medical specialists will tell you to be successful with SRT to the prostate bed. Most will tell you for SRT to be successful your PSA should only be .3 to .5. That’s the dilemma, the higher the PSA, the greater the probability the scan will locate the recurrence. The Aximun scan does work better at lower PSAs, my radiologist want to scan when my PSA hits .4 using the Aximun scan here in Kansas City

One thing to consider is the experience of the personnel reading the scans. A medical center just starting up their program may not be the same as Mayo in Rochester who has extensive experience with the C11 Choline.

While overseas in Europe and Australia the PMSA scans are in widespread use, here in the US they are in clinical trials. They are definitely better than the C11 Choline and Aximun scans, especially at lower PSA levels.

I had 4 C11 Choline scans at Mayo, it was amazing to sit with my radiologist as she showed me the 3D IMRT treatment plan she built using the images from the C11 Choline scan…think smart versus dumb bombs.

There is no doubt newer imaging can be a factor in determining the treatment plan. It’s not inexpensive, about $1800 out of pocket for each C11 Choline scan. The question I asked and so should you, “will this change the treatment plan if it locates the recurrence…” for me the answer was yes.

Kevin

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kujhawk1978
Kevin -Thanks for the helpful information. All the best to you.

OUMike

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@colleenyoung

@jap57 @oumike @maryv449 here's some information to augment this discussion you've started about the improved detection with advanced PET scans. @kujhawk1978 @philn and @BuckyFestoon may also have more info to add from their experiences.

– Choline C-11 PET scan https://www.mayoclinic.org/tests-procedures/choline-c-11-pet-scan/about/pac-20384628
– Axumin PET scan https://www.verywellhealth.com/axumin-pet-scans-for-prostate-cancer-4126111

And these videos

@jap57, what type of radiation will you be starting?

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I will be having the external beam radiation.

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