MybJourney

[Joe32963]

I was diagnosed January 20, 2014. My gleason was 9 (4+5). I had a prostatectomy in March, 2014. Unfortunately PSA didn't drop much. I decided to get colonoscopy which showed prostate cancer on my rectum. I had a prostate cancer specific contrast agent and PET scan developed at JH which showed cancer was localized in the rectum. I had RT at Johns Hopkins. I then chose "off label" Provenge treatment. Meanwhile, before RT I started Lupron and Casodex. Now I take Trelstar which is every 6 months. Continece good until about 9 months ago. Light bouts with proctitis. Resolved by taking fiber. Just had male sling procedure at JH and continence issues 100% resolved. PSA is now .02 and steady. I am coming off hormone therapy in April. We'll see what happens.

[Darryl Partner]

Do you think every or most men with prostate cancer should have a colonoscopy, just like they had a biopsy?

[Joe32963 in reply to Darryl]

My scans showed my prostate against the rectum. I discovered it after surgery. If we discovered before surgery, I would have had more options. I think if there is any question,  get the colonoscopy.

[Hidden in reply to Darryl]

Darryl, I am scheduled for IMRT at MSKCC and the radonc wanted me to have a colonoscopy first.  He said this is part of their routine protocol for RT.

[JoelT in reply to Hidden]

Len,

I see that you have had treatment at MSKCC which means that you might live near to New York City.  If you do you should be aware that Malecare has two different support groups in the city, one for anyone diagnosed with prostate cancer no matter what stage and one that is specific for men with advanced prostate cancer.  If you want more information let me know and I will provide it.

Joel

[Hidden in reply to JoelT]

Yes, Joel, please do send the info.  Darryl had previously provided me with that info, but I've since forgotten it.  Also, I sent you a private email which you may not have seen yet.  --Len

[JoelT in reply to Hidden]

Len,

I'll send the group meeting publicly so if there are some other readers in the city they might also want to join us.

Every Wednesday we have a face-to-face meeting for any one diagnosed any stage of prostate cancer.  We meet at 6 p.m on the second floor, room 303.

Every third (3rd) Thursday we have a face-to-face meeting for any person diagnosed with advanced prostate cancer.  This includes any prostate cancer outside of the gland.  We meet at 6:30 p.m. on the 4th floor in the Bogart Conference Room which is located in the rear (through) of the Cancer Library.

Both meetings are at the Mount Sinai Beth Israel -- Phillips Ambulatory Care Center (Manhattan)

10 Union Square East, New York, NY 10003

Joel

[van123 in reply to Darryl]

I just had a colonoscopy to ensure my cancer hadn't spread to that area. I had my prostrate removed in October but my PSA was 0.07 in January. I start radiation on April 11th.  I think it's best to be sure that cancer hasn't spread to the colon.

[joeoconnell]

in addition to prostate cancer, i have a pacemaker to try and control Afib and they had me on blood thinner to help prevent strokes, until i began to bleed internally and they took me off the blood thinner and have me on aspirin. they wanted to do a colonoscopy but i had heard it is not recommended for people over 75 so i chose not to do it...i am 87. now reading some of these reports i may reconsider. i have lost over 10 lbs since January and that to concerns me. i have COPD real bad and consider myself to be a poor surgical risk. i would welcome any ideas and suggestons 

[Joe32963 in reply to joeoconnell]

I woukd research and seek out a second or third opinion.

[JoelT]

Joe,

Glad that you are going to take a vacation from hormone therapy.  It can really change your life.  I too go on and off and the quality difference is, in my personal opinion for myself, well worth the increased risks. 

Joel