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?

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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I was diagnosed with cancer in February of 2018. My PSA had gone from 2 to 16. After the biopsy, CAT scan, bone density scan and MRI my urologist wanted to operate immediately. I luckily went for a second opinion at Moffitt Cancer Center in Tampa. I first met with a urologist there. He did not recommend I have surgery because the cancer had spread outside of my prostate. The thought being that if I had surgery I would still need radiation therapy to kill the other cancer cells. I was then sent to a Moffitt Radiation Oncologist who reviewed my medical records and recommended another Radiation Oncologist that ran the brachytherapy department. They started me with hormone deprivation therapy (Lupron) to shrink the tumor, stop the spread and make the radiation treatment more effective. I then had the first of 2 scheduled high dose internal radiation treatments. It is an all day procedure where they put you under and wake you several times. The high dose radiation treatment lasted 27 minutes. The Doctor was so happy with the results he cancelled the 2nd Brachytherapy and reduced the external beam radiation from 45 fractions to 25.I continue to get the hormone deprivation therapy every 3 months. Side effects are no day at the beach but if you tell your medical staff everything and do what they say it is manageable. I have 3 more treatments left. Looking forward to moving past this chapter.

My takeaway is that you get a second opinion. Go to a facility that is world renowned at treating cancer. Keep a positive outlook and fight like hell.

Best,
Dan

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@dmadi61

I was diagnosed with cancer in February of 2018. My PSA had gone from 2 to 16. After the biopsy, CAT scan, bone density scan and MRI my urologist wanted to operate immediately. I luckily went for a second opinion at Moffitt Cancer Center in Tampa. I first met with a urologist there. He did not recommend I have surgery because the cancer had spread outside of my prostate. The thought being that if I had surgery I would still need radiation therapy to kill the other cancer cells. I was then sent to a Moffitt Radiation Oncologist who reviewed my medical records and recommended another Radiation Oncologist that ran the brachytherapy department. They started me with hormone deprivation therapy (Lupron) to shrink the tumor, stop the spread and make the radiation treatment more effective. I then had the first of 2 scheduled high dose internal radiation treatments. It is an all day procedure where they put you under and wake you several times. The high dose radiation treatment lasted 27 minutes. The Doctor was so happy with the results he cancelled the 2nd Brachytherapy and reduced the external beam radiation from 45 fractions to 25.I continue to get the hormone deprivation therapy every 3 months. Side effects are no day at the beach but if you tell your medical staff everything and do what they say it is manageable. I have 3 more treatments left. Looking forward to moving past this chapter.

My takeaway is that you get a second opinion. Go to a facility that is world renowned at treating cancer. Keep a positive outlook and fight like hell.

Best,
Dan

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Hi @dmadi61, I appreciate hearing how you were able to gain clarity and confidence in your treatment choices through a second opinion. It's so important to be able to weigh all the options. What side effects are you dealing with and which one is the most challenging?

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I was diagnosed in May, 2007 and had a radical prostatectomy. I was very fortunate in that the cancer had not spread and I have been cancer free since July, 2007.

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@colleenyoung

Hi @dmadi61, I appreciate hearing how you were able to gain clarity and confidence in your treatment choices through a second opinion. It's so important to be able to weigh all the options. What side effects are you dealing with and which one is the most challenging?

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The side effects that are most difficult to deal with for me are from the Androgen deprivation. Total lack of libido. Lessening of mental acuity is awful. My memory is horrible now.

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@tmclain

I was diagnosed in May, 2007 and had a radical prostatectomy. I was very fortunate in that the cancer had not spread and I have been cancer free since July, 2007.

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@tmclain, I'm glad you joined the Prostate group too. Was prostatectomy the only treatment you needed to have?

@dmadi61, cognitive impairment is so frustrating. While not the same cause, you may find some of the blogs posts in the MCI page helpful for dealing with memory issues. You can follow the blog here: https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

Here are a few articles to get you started:
– Revisiting Brain Exercises https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/revisiting-brain-exercises/
– Coping with Memory Loss in Social Situations https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/coping-with-memory-loss-in-social-situations/

Have you developed any tricks for dealing with memory issues?

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Male 64. Had a RP in Jacksonville May 15/19. PSA moved from 3.3 to 5.5 then quickly to 6.5. Biopsy confirmed with a Gleason 8. Surgery went well, with all margins & 24 lymph nodes clear. Gleason reduces to 7. Only issue is DVT’s due to surgery. Also numbness on skin ( I assume DVT related) . All important PSA test scheduled for later August

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