1. < Prostate Cancer
Moderator

Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

poodledoc | @poodledoc | Feb 12, 2020
In reply to @greff "I should add that my Gleasen score was a 6. My psa went from 2.8 to..." + (show)
@greff

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

Jump to this post

Hello welcome to the club no man wants to join. I was diagnosed with Prostate cancer Sept 2018 (Gleason 3+4) and had HIFU treatment Dec 2018. Doing very well, absolutely no side effects which is the reason I chose that treatment. If all you have is Gleason 6 (3+3) you should be a good candidate for Active Surveillance. Your rise in PSA could be coming from the Prostatitis. Treatments for prostate cancer cancer are changing rapidly to types that do not effect your sex life or incontinence that is so common with surgery or radiation. If I had my treatment to do over I would now choose a new form of HIFU called TULSA-PRO That other test you mentioned, was it Prolaris, Decipher, or Oncotype? If so it should help in your decision on what to do. I would also recommend you get a prostate mp-MPI as it is becoming the gold standard in diagnosing cancer. Good luck to you Bill

REPLY
healer74 | @healer74 | Feb 12, 2020
In reply to @greff "Do you know whether prostate cancer affects the thyroid? My Thyroid hormone level is going low...." + (show)
@greff

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

Jump to this post

If you are concerned about your thyroid talk with a Endocrinologist. My thyroid number is 1.54. It did not change during my year of treatment and is still 1.54. So personally I would not worry.

REPLY
greff | @greff | Feb 12, 2020
In reply to @horace1818 "I would not wait. One thing worth doing is to get a genetic assessment of the..." + (show)
@horace1818

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!

Jump to this post

Thanks. I'll check it out.

REPLY
horace1818 | @horace1818 | Feb 12, 2020
In reply to @greff "That's what I'm thinking as well. My wife and kids also think I should get it..." + (show)
@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.

Jump to this post

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!

REPLY
2 replies
hodagwi | @hodagwi | Feb 12, 2020

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...

REPLY
greff | @greff | Feb 12, 2020
In reply to @horace1818 "I had similar numbers to yours in 2016 and after much study, I chose surgery to..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
horace1818 | @horace1818 | Feb 12, 2020
In reply to @greff "Hi everybody, I just found this website two days ago. It's wonderful to connect with other..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
hodagwi | @hodagwi | Feb 12, 2020

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

REPLY
greff | @greff | Feb 12, 2020
In reply to @hodagwi "I was diagnosed in 2005 and treatment has changed a lot since then. I had a..." + (show)
@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.

Jump to this post

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

REPLY
1 reply
greff | @greff | Feb 12, 2020
In reply to @hodagwi "I was diagnosed in 2005 and treatment has changed a lot since then. I had a..." + (show)
@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.

Jump to this post

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.

REPLY
View MoreView Less
Please sign in or register to post a reply.