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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.

gkm | @gkm | Mar 16 1:38pm
In reply to @stantallusa "I had my Prostate removed in 2000. Robotic. Not sure what went wrong but I am..." + (show)
@stantallusa

I had my Prostate removed in 2000. Robotic. Not sure what went wrong but I am now a cripple.
Talked to my GP about doing a bone scan. Seems like my knees and joints are getting very bad. He explained time that if it came back and showed cancer, I would spend whatever life I have left treating it. Is that what I want to do? I am almost 76 now. I think not.

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You haven't provided much information but it doesn't sound like your prostate cancer has come back after 23 years. Therefore I am not sure if anything went wrong. Sounds like it might be an arthritis issue.

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stantallusa | @stantallusa | Mar 16 10:57am

I had my Prostate removed in 2000. Robotic. Not sure what went wrong but I am now a cripple.
Talked to my GP about doing a bone scan. Seems like my knees and joints are getting very bad. He explained time that if it came back and showed cancer, I would spend whatever life I have left treating it. Is that what I want to do? I am almost 76 now. I think not.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15 6:33pm
In reply to @pinotwinelover "I don't know anything about Dr. David woodroom but I'm meeting him on the 12th for..." + (show)
@pinotwinelover

I don't know anything about Dr. David woodroom but I'm meeting him on the 12th for a Tulsa consultation. I visited with the best surgeon. I could find Dr. Edward Schaeffer several other focal treatment clinics and radiation expert and I'm leaning toward the least invasive procedure if anybody can vouch for Dr. Woodrum one way or another I would appreciate it.

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@pinotwinelover (I love pinot too), I believe that @bjroc @cupman @ronan2011 have all worked with Dr. Woodrum at Mayo Clinic.
Did you meet with Dr. Woodrum this week? Have you made your treatment choice?

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1jmccurry | @1jmccurry | Mar 11 12:14pm

I was diagnosed in about 2000 with a PSA of 2, but nodules on perimeter of the prostate suggested surgery. So,
I selected the seed implant to avoid incontinence and impotentance. 20 years later my PSA is up to 14, and then in 2 more years up to 16.7. Recently, we did a PET scan and discovered cancer migrating throughout my body.
So now we are on Lupron therapy and wondering what will happen next? It is difficult adjusting to certain facts
about my cancer. Is it really cancer? Seems after the first diagnosis we just waited for the next PSA reading to decide what next. It was always lets see what the next reading will be. Now it has spread throughout my body and
we are treating with hormone therapy and still waiting to see the next PSA reading. Compared to many readings,
a 16.7 is not tremendous. But, it is greater than 0, and that is a concern to me, along with not knowing what is next. Jim McCurry

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hbp | @hbp | Mar 10 11:03am

I think that the best way to judge your physician is his experience in an excellent medical group and facility (and not too young and not too old ) . A not so good physician would not be hired and retained by an excellent group. Hence, peer review is far better than a few lay people review on this site. That is the opinion of this old lawyer who is G9, CR, advanced PC.

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pinotwinelover | @pinotwinelover | Mar 10 10:35am

I don't know anything about Dr. David woodroom but I'm meeting him on the 12th for a Tulsa consultation. I visited with the best surgeon. I could find Dr. Edward Schaeffer several other focal treatment clinics and radiation expert and I'm leaning toward the least invasive procedure if anybody can vouch for Dr. Woodrum one way or another I would appreciate it.

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1 reply
pinotwinelover | @pinotwinelover | Mar 10 10:33am
In reply to @cupman "Basically Pro and Cons, I am candidate. I continue to read and still question which is..." + (show)
@cupman

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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Who did you chose for Hifu I have visited with 3

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4 6:05pm
In reply to @gwh "hello, im george, age 74, diagnosed feb 12th 24, gleason 7s and two 8s, psa 1600...." + (show)
@gwh

hello, im george, age 74, diagnosed feb 12th 24, gleason 7s and two 8s, psa 1600.
urologist seems in no hurry which makes me crazy. iv

weve had biobsy results since the 19th but hes waiting till march 1st to explain them to me.
the 1600 psa seems to indicate castration resistant spread.
i understand the need for data, but i fear hes going to test me to death

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Hi George @gwh, how did your appointment go last week? What treatment options are you considering? Next steps?

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rogerbwood2004 | @rogerbwood2004 | Mar 3 7:05am
In reply to @rogerbwood2004 "Hi, I’m Roger. Diagnosed a year ago with PSA of 682 and difficulty urinating. Gleason 4+5...." + (show)
@rogerbwood2004

Hi, I’m Roger. Diagnosed a year ago with PSA of 682 and difficulty urinating. Gleason 4+5. Started monthly Firmagon injections right away, followed by Xtandi pills a month later. My latest PSA is 0.3 and I have side effects of fatigue, hot flashes, loss of muscle mass, and 15 lb. weight gain after one year. Waiting on results of PSMA Pet Scan just done yesterday.
It is difficult sometimes but I’m still here and working hard.

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My PSMA Pet scan results are good. A year ago I had 4 lymph nodes and 5 bone locations involved. One year of ADT and now I have 1 node and 3 bones still involved. Oncologist appt in 2 weeks. I am still working and want to avoid surgery, but radiation may be an option.

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bens1 | @bens1 | Mar 3 6:42am
In reply to @ava11 "I am scheduled for Transperineal biopsy on March 5th. MRI found 2 lesions one with PIRADS..." + (show)
@ava11

I am scheduled for Transperineal biopsy on March 5th. MRI found 2 lesions one with PIRADS score of 5 and the other with a score of 4. Should I get a targeted biopsy at those 2 locations only or also additional 12 core random biopsies also or just go along with whatever my urologist recommends?

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Ava11: I was put out for my biopsy and was glad that I was. On this website, and personally with a couple of friends, staying awake for the biopsy can be uncomfortable. If your insurance and budget allows, you might want to consider being put under.

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