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?

@vernonkent

Replying to @frankstags
First hot flash for me was probably about two weeks after the Lupron shot. They have continued at seemingly random times.

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Same here

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@waynen

The Mayo staff said that the urination issue is common since they can't protect the uretha from the radiation. It's not a problem, if I take the flomax. The first time I stopped taking it to see what would happen. After a couple days, the pain came back. That was about 4 months after stopping the treatment. The second time we were on a trip and I forgot the flomax. That was about 8 months after the end of my treatment.

In regards to lupron, I had 3 shots 6 months apart. My Gleason score was 8. It became clear to me that not everyone has the same treatment. I had 20 radiations and some had as many as 44. Also, some didn't have any lupron treatments. I asked my doctor why the difference and he said it depends on the severity of the problem. I don't know if you've had a bone scan and MRI of your organs. Mine were clean, which is why I got only 20 treatments. One guy had his cancer spread outside the prostate and he got 44. Your radiation oncologist will consult with a team of doctors to see what treatment you should receive. I also met one guy who had it spread to his lungs and received chemo and radiation. They treat each case separately and try to make sure the cancer doesn't come back. That's the job of lupron. Even if you have surgery, you should take steps to prevent any recurrence. There's some good research that supports the use of lupron to prevent any recurrence.

Best of luck to you on your journey. Take it all in.

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Many thanks. Good counsel.

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I was first diagnosed with P C at my usual clinic in Central Iowa, I asked to be referred to Mayo Minnesota where they verified the condition.. I received 1 shot of Lupron at Mayo then went back to my home where the Radiation Oncologist there trained with the Mayo doc and the machine was similar. Mayo Minnesota said the Cancer Society would provide housing for me with a short waiting list… The 20 radiation treatments started 2 months after the shot.. no hot flashes.. and no more Lupron.. I graduated from treatments 6 months ago.. PSA way less than 1.. It had been 11 at the max. Before Radiation, Space material was inserted to separate the bowel from the Prostate a half inch.. but I still have some bowel side effects… I'm 82.. Grateful for such good results..

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@waynen

The Mayo staff said that the urination issue is common since they can't protect the uretha from the radiation. It's not a problem, if I take the flomax. The first time I stopped taking it to see what would happen. After a couple days, the pain came back. That was about 4 months after stopping the treatment. The second time we were on a trip and I forgot the flomax. That was about 8 months after the end of my treatment.

In regards to lupron, I had 3 shots 6 months apart. My Gleason score was 8. It became clear to me that not everyone has the same treatment. I had 20 radiations and some had as many as 44. Also, some didn't have any lupron treatments. I asked my doctor why the difference and he said it depends on the severity of the problem. I don't know if you've had a bone scan and MRI of your organs. Mine were clean, which is why I got only 20 treatments. One guy had his cancer spread outside the prostate and he got 44. Your radiation oncologist will consult with a team of doctors to see what treatment you should receive. I also met one guy who had it spread to his lungs and received chemo and radiation. They treat each case separately and try to make sure the cancer doesn't come back. That's the job of lupron. Even if you have surgery, you should take steps to prevent any recurrence. There's some good research that supports the use of lupron to prevent any recurrence.

Best of luck to you on your journey. Take it all in.

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I was under the impression that Lupron was to shrink the size of the prostate.. that is why they waited 2 months after the shot to start the Radiation..

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@ken82

I was under the impression that Lupron was to shrink the size of the prostate.. that is why they waited 2 months after the shot to start the Radiation..

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Yes, it does. Mayo's description of the treatment says it will also kill or slow the growth of the cancer cells. It's especially important to be used with patients who have advanced cancer, Gleason score of 8+. I also waited 2 months to start treatment and was told that it would shrink the Prostrate and slow down the movement of the cells, making it easier to radiate the cancer. My second and third shots were to reduce the risk of recurrent cancer. I was told that the lupron treatments, in addition to the radiation, improved my chance of survival by 20%. It brought my survival rate to 80%. If you have Gleason score of 6, you might not need the lupron.

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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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Hi everybody, I just found this website two days ago. It's wonderful to connect with other people who are willing to share their hardships and hopes to others who are struggling with medical conditions. I have recently been diagnosed with prostate cancer. We are in the watchful waiting game for now as my cancer is not aggressive (although they sent the biopsy off to see if they could determine the progression of the mutation. In adsition to the cancer, I also have prostatitis with all sorts of fun symptoms to encounter. I must say that with the leaking (incontinence), groin, pelvic, bladder, scrotum, and testicle pain involved, I might elect to just get rid of my prostate and call it good. The Doctor says there is a risk of sporting a catheter the rest of my life but I already feel like I'm a step short of either having one or wearing a diaper. (I used to joke about that in my younger years-be careful what a guy jokes about). I'm looking for some input on what your advice might be concerning getting the prostate removed. Thanks.

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@greff

Hi everybody, I just found this website two days ago. It's wonderful to connect with other people who are willing to share their hardships and hopes to others who are struggling with medical conditions. I have recently been diagnosed with prostate cancer. We are in the watchful waiting game for now as my cancer is not aggressive (although they sent the biopsy off to see if they could determine the progression of the mutation. In adsition to the cancer, I also have prostatitis with all sorts of fun symptoms to encounter. I must say that with the leaking (incontinence), groin, pelvic, bladder, scrotum, and testicle pain involved, I might elect to just get rid of my prostate and call it good. The Doctor says there is a risk of sporting a catheter the rest of my life but I already feel like I'm a step short of either having one or wearing a diaper. (I used to joke about that in my younger years-be careful what a guy jokes about). I'm looking for some input on what your advice might be concerning getting the prostate removed. Thanks.

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I should add that my Gleasen score was a 6. My psa went from 2.8 to 7.31 in a year.

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I was diagnosed in 2005 and treatment has changed a lot since then. I had a score of 6 also. I had radioactive seed implants at Memorial Sloan Kettering in NYC since I was living in that area at the time with 25 doses of radiation afterwards. Biopsies showed cancer in pretty much the whole prostate but that it hadn't spread. Hurrah for early detection. I have been cancer free since then with psa below .1. That is the good news. The bad news is that the radiation had impacted the tissues around the bowel and bladder and over the past 11 years I have had infections since parts of the bladder and bowel are now connected with a fistula or canal between them. Still dealing with that. Each person is different so lots more options now for treatment. Dad was diagnosed in his 60's and lived until age 89 with it not being an issue. A friend was diagnosed in 1999, had it removed but it had spread and died in 2013. Yes, this is a good site and have doctored at Mayo in Rochester and very good doctors there. Univ Wisconsin Madison is also good place from friends who have gone there as is Sloan Kettering in NYC. keep looking and investigating since new treatments, hormone therapy to name one seems to be used a lot.

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@hodagwi

I was diagnosed in 2005 and treatment has changed a lot since then. I had a score of 6 also. I had radioactive seed implants at Memorial Sloan Kettering in NYC since I was living in that area at the time with 25 doses of radiation afterwards. Biopsies showed cancer in pretty much the whole prostate but that it hadn't spread. Hurrah for early detection. I have been cancer free since then with psa below .1. That is the good news. The bad news is that the radiation had impacted the tissues around the bowel and bladder and over the past 11 years I have had infections since parts of the bladder and bowel are now connected with a fistula or canal between them. Still dealing with that. Each person is different so lots more options now for treatment. Dad was diagnosed in his 60's and lived until age 89 with it not being an issue. A friend was diagnosed in 1999, had it removed but it had spread and died in 2013. Yes, this is a good site and have doctored at Mayo in Rochester and very good doctors there. Univ Wisconsin Madison is also good place from friends who have gone there as is Sloan Kettering in NYC. keep looking and investigating since new treatments, hormone therapy to name one seems to be used a lot.

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Thanks for your input. Sorry to hear that the radiation is affecting your bowel and bladder. I am leaning towards getting it taken out. Hopefully I won't need a catheter for very long. I think that if I didn't have prostatitis and all of the pain that goes with that, I would wait and see what my psa says a year from now. As is, they are going to re-check it in June.

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@hodagwi

I was diagnosed in 2005 and treatment has changed a lot since then. I had a score of 6 also. I had radioactive seed implants at Memorial Sloan Kettering in NYC since I was living in that area at the time with 25 doses of radiation afterwards. Biopsies showed cancer in pretty much the whole prostate but that it hadn't spread. Hurrah for early detection. I have been cancer free since then with psa below .1. That is the good news. The bad news is that the radiation had impacted the tissues around the bowel and bladder and over the past 11 years I have had infections since parts of the bladder and bowel are now connected with a fistula or canal between them. Still dealing with that. Each person is different so lots more options now for treatment. Dad was diagnosed in his 60's and lived until age 89 with it not being an issue. A friend was diagnosed in 1999, had it removed but it had spread and died in 2013. Yes, this is a good site and have doctored at Mayo in Rochester and very good doctors there. Univ Wisconsin Madison is also good place from friends who have gone there as is Sloan Kettering in NYC. keep looking and investigating since new treatments, hormone therapy to name one seems to be used a lot.

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Do you know whether prostate cancer affects the thyroid? My Thyroid hormone level is going low. It went from 4.5 to 3.9

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I don't know on the thyroid. I do recommend talking to people that had the prostate removed and how that went for them.

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@greff

Hi everybody, I just found this website two days ago. It's wonderful to connect with other people who are willing to share their hardships and hopes to others who are struggling with medical conditions. I have recently been diagnosed with prostate cancer. We are in the watchful waiting game for now as my cancer is not aggressive (although they sent the biopsy off to see if they could determine the progression of the mutation. In adsition to the cancer, I also have prostatitis with all sorts of fun symptoms to encounter. I must say that with the leaking (incontinence), groin, pelvic, bladder, scrotum, and testicle pain involved, I might elect to just get rid of my prostate and call it good. The Doctor says there is a risk of sporting a catheter the rest of my life but I already feel like I'm a step short of either having one or wearing a diaper. (I used to joke about that in my younger years-be careful what a guy jokes about). I'm looking for some input on what your advice might be concerning getting the prostate removed. Thanks.

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I had similar numbers to yours in 2016 and after much study, I chose surgery to remove the prostate at Mayo Scottsdale with the daVinci. It went well and the surgeons are great!. There's still a little residual pain, a little leakage on sneezing and ED issues but my PSA remains at zero and my sense of relief is still intense. Anytime you can cure cancer with surgery, you should do so. The alternatives have too many side effects and doing nothing is a big risk that you will progress past the point where surgery can help. Surgery also eliminates the problems related to the prostate and you will have a strong stream In future. Good luck with your decision. Let me know if you have any more questions.

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@horace1818

I had similar numbers to yours in 2016 and after much study, I chose surgery to remove the prostate at Mayo Scottsdale with the daVinci. It went well and the surgeons are great!. There's still a little residual pain, a little leakage on sneezing and ED issues but my PSA remains at zero and my sense of relief is still intense. Anytime you can cure cancer with surgery, you should do so. The alternatives have too many side effects and doing nothing is a big risk that you will progress past the point where surgery can help. Surgery also eliminates the problems related to the prostate and you will have a strong stream In future. Good luck with your decision. Let me know if you have any more questions.

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That's what I'm thinking as well. My wife and kids also think I should get it taken care of. It is frwaking them out that I was told I should wait a bit.

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I have used a number of ED medicine and viagara and other things with limited success. have done caverject which is expensive and now use prosta glanden which is a compound and very inexpensive. know more, let me know…

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@greff

That's what I'm thinking as well. My wife and kids also think I should get it taken care of. It is frwaking them out that I was told I should wait a bit.

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I would not wait. One thing worth doing is to get a genetic assessment of the aggressiveness of your cancer. it is based on outcomes and genetic profiles of thousands of prior cases. It is called Prolaris and you can find details on the Myriad Genetics web site. The read-out is on a scale of 1 to 10, with 1 being benign. My number was 5 which accelerated my surgery decision. Good luck!

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