The New Prostate Cancer InfoLink
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Steven Hess's Page
Steven Hess's Groups
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Medical Photography
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Biopsy and Other Tests
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ED and incontinence post-treatment
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Surgery
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Steven Hess's discussions
"The Language of the Journey" and related matters
Added a reply Jul 1
"The Language of the Journey" and related matters
Added a reply Jul 1
"The Language of the Journey" and related matters
Added a reply Jul 1
Latest Activity
Profile
- Have you been diagnosed with prostate cancer?
- yes
- What brings you to the New Prostate Cancer InfoLink social network?
- My new friend Lenny in Israel
- Would you help us grow the network? Would you tell others about it?
- Sure
- About Me:
- Age 70, born in Amsterdam, Holland, Holocaust survivor (Bergen Belsen). Came to US in 1947. Former Naval Officer and business owner. Live in Rochester, NY with my wife, a psychiatrist and owner of a clinical research
(drug studies) practice. Retired but work full time helping my wife run her business. Four grown children from previous marraiges. We live on the shore of Lake Ontario and cruise in our trawler if and when we find the time.
Update June 29 08
RLRP on April 8:
Had my first post-op standard as well as ultrasensitive PSA which was <.01 (loud sigh of relief). Also had a HAMA test which was "nondetectible"
Many of us read comments of not letting cancer dominate your life. Sounds good in theory but I find my PCa rather attention-getting (Gleason 9). But there is a positive in that. I have drastically altered my life style, not fun but all to the good. I exercise regularly when I have never done that in my life. I am also now on an extremely healthy diet when I never paid much attention to that before. Physically, I feel better than at any time I can remember. Incontinence is annoying but slowly improving. ED is very depressing but as my physician-wife point out, it's been just three months so I need to give it time.
Had my first post-op standard as well as ultrasensitive PSA which was <.01 (loud sigh of relief). Also had a HAMA test which was "nondetectible"
Many of us read comments of not letting cancer dominate your life. Sounds good in theory but I find my PCa rather attention-getting (Gleason 9). But there is a positive in that. I have drastically altered my life style, not fun but all to the good. I exercise regularly when I have never done that in my life. I am also now on an extremely healthy diet when I never paid much attention to that before. Physically, I feel better than at any time I can remember. Incontinence is annoying but slowly improving. ED is very depressing but as my physician-wife point out, it's been just three months so I need to give it time.
About The New Prostate Cancer InfoLink
Arnon Krongrad, MD
created this social network on Ning.
Selected Papers (pdf)
Oh, Canada ...
The Canadian Prostate Cancer Network is hosting its 5th annual conference in Calgary this August. Check it out. And for more information, contact Bob Shiell.
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Send an email to Hope at hope@laprp.com
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Comment Wall (8 comments)
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Congratulations on the low PSA score and HAMA results!
Congratulations also on the diet and exercise regime, with the excellent physical effects!
On the ED / Incont group, I posted a practical but homely way of getting control of incontinence that may get you dry within three days of good practice. For ED, you might try taking a PDE5 inhibitor on an empty stomach along with 5mg of trazodone as a potentiator.
Dr. Krongrad is traveling you can start any discussion you want. If you want to discuss robotics it can go under the Surgery group.
hope this helps
Hope
What's the news on your post-op PSA?
I also sent you a one-on-one e-mail reply. Your question about Gleason 9 vs all other factors being low risk might be a good one to throw out to the group.
Thanks for the reply. My progress on the continence is about the same as yours it appears. I am still drippy but doing pretty good. I may not even change my brief at all at work today. It is almost 2:30 and I think I could make it. But, then I take a chance of getting some irritation, so I may do it anyway shortly.
I am getting some very good feedback on the rp site on the IMRT issue. Several ladies responded with experiences of their husbands IMRT. The side effects for them appeared to be very manageable to actually not much effect at all. So maybe the issue of doing it now rather than waiting is a no brainer just like the surgery was for me in the beginning. The purpose is cure, so I better just do it if the doc recommends it.
Thanks for your return note. I do feel quite confident that we will get this thing taken care of for good, based on many comments from our groups including the physicians. But, that does not ease the anxiety about the side effects. By this time I am getting pretty tired of the nuisance of all the surgical side effects, but they are manageable and you get into the routine of things and it is not that bad. But, can you imagine starting over with continence training and maybe lasting for 2 years or forever. I know I shouldn't think the worst and this is not likely to happen, but I have not had all positive results of all this. But, I think that I am ready to take this therapy if the doc thinks it should be done. Otherwise, this is Russian roulette with your life. To get rid of it all for 20 more years of life (God willing) and put up with a much shorter period of IMRT recovery is worth the pain and inconvenience. Of course none of us wanted this to happen, but my case has wonderful potential compared to some who have not caught the disease early enough before metastisis. So we are blessed and should remember this for sure. I am trying to keep my spirits up, but it is on my mind continuously obviously. I need to concentrate on the positive side. I know this is important as Angela has encouraged.
Will stay in touch on both sites as I go through all this. Best to you.
Ken
I am sure we will be communicating more in the future on both the sites.
Ken
We will not make it to Canada this year,but are planning to spend the summer there next year. A lot can happen until then. Here is hoping
Lenny
I meant to introduce myself earlier. I'm also a member of the Gleason-9 club, and I keep trying to find the balance between giving it too much attention and too little.
For me, I find it's wise to give sufficient time and patience to the things that require it (such as waiting at least a month for the first post-op PSA test), but also to prepare contingency plans for dealing with the two or three most probable decision gates before reaching them.