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WHAT'S THE POINT OF THIS SOCIAL NETWORK?

The "New" Prostate Cancer InfoLink Social Network is a service of Prostate Cancer International and is closely associated with the core information and daily news made available through The "New" Prostate Cancer InfoLink. We welcome patients, family members, physicians, researchers, and anyone else who is seeking information about what's happening on Planet Prostate Cancer.

If you want to remain anonymous on this network ... please DO NOT use your real name when you sign in. Use a pseudonym, or just your first name and an initial.

One of our primary goals is to help newly diagnosed men to come to the best possible decision for them about a specific course of action. Given two men with exactly the same clinical characteristics, the best possible decision for man A may be very different to the best possible decision for man B.

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Latest Activity

Jan Manarite left a comment for Giles Barton
"You are most welcome.  Having your surgery at Hopkins, you can feel confident that your pathology and Gleason Score were read by an expert, and that your surgery was likely done by an expert also.  I like your attitude - we're here to…"
1 hour ago
Giles Barton left a comment for Jan Manarite
"Hi Jan, thank you for the warm welcome. Yes, I had my surgery at Johns Hopkins and had a good experience there. I am having a follow up with my surgeon on Monday. I had my first PSA test after the surgery this week and it came back as < 0.1.…"
2 hours ago
Sally Layton Laney replied to John Paul Jones's discussion Update on My Pca
"John, Thanks for sharing and caring. It is a difficult journey to navigate. And yes, the VA definitely should have pursued the elevated PSA. So should the Primary Care physician and the Urologist, all who did nothing at a stage when this would have…"
3 hours ago
Jan Manarite replied to John Paul Jones's discussion Update on My Pca
"John Paul - Good luck with your appointment with Dr Patel.  Maybe some other surgery patients can give you some questions they would ask. ? One thing I would do - Bring in all your own medical records, and even have some notes on…"
3 hours ago
John Paul Jones replied to John Paul Jones's discussion Update on My Pca
"Thank you for sharing your story and the options you are pursuing.  Your husband appears to be the victim of the new PSA guidelines not to do PSAs.  Good urologists continued using PSAs and DREs as a guide to when to use MRIs and biopsy if…"
7 hours ago
Don Oberlin left a comment for Douglas Moore
"Douglas: Excellent!  It's been awhile since I looked into brachytherapy. I do not recall any mention of targeted or elevated dosages. To your knowledge does this represent new technology? A few additional questions appear below for…"
7 hours ago
Jan Manarite posted an event

Mid-Year Update (PCRI) at Los Angeles Airport Marriott

March 24, 2018 from 9am to 4:30pm
9 hours ago
Jan Manarite left a comment for Giles Barton
"Hi Giles - welcome.  You are very young to be dealing with this, but we have new advances in prostate cancer every year.  Your research will pay off.  In fact, here's a link to our blog posts (written mostly by Mike) on…"
9 hours ago
Giles Barton is now a member of The "New" Prostate Cancer InfoLink Social Network
9 hours ago
Douglas Moore left a comment for Don Oberlin
"Don,  Yes, I enthusiastically investigated all of options that I am aware of, and the high dose bracytherapy makes the most sense to me. The favorable location of the tumor, and the small size of it, led me to a conclusion that the …"
12 hours ago
Sally Layton Laney replied to John Paul Jones's discussion Update on My Pca
"We are in the same boat, trying to find a place for treatment. One that we can trust as a good option for my husband's stage and grade, T3BN0M0, Gleason 9, spread to seminal vesicles bilaterally. Considering Proton treatment vs. traditional RT…"
20 hours ago
Jan Manarite left a comment for Sally Layton Laney
"Hi Sally.  I had not heard of the Varian Edge Radiosurgery before.  I just looked it up. It looks to me like it's a new brand of machines doing prostate radiation with fewer visits (treatments).  Each radiation treatment is…"
21 hours ago
Sally Layton Laney left a comment for Jan Manarite
"Jan, have you heard of anybody doing Varian Edge Radiosurgery? "
21 hours ago
Sally Layton Laney posted a discussion

Varian Edge Radiosurgery

Struggling w/ treatment options for T3BN0M0, Gleason 9, PSA 15.9 Began Bicalutamide 50 mg oral med and had round one of Lupron 6 month injection this week. Now must sort out EBRT (WPRT) given by IMRT, vs. Proton Therapy, vs. Varian Edge Technology. Willing to travel for treatment. Has anybody tried the Varian Edge Radiosurgery? We can not find a lot of information online regarding Varian Edge. Any comments? We want to make a decision ASAP given the aggressiveness of the tumor. We are scheduled…See More
23 hours ago
Don Oberlin left a comment for Douglas Moore
"Douglas: I see you have completed your research and decided on a course of action. As you may recall  brachytherapy is an option I considered and rejected based on the research study quoted in my journal. This option is still available to me…"
yesterday
Alan Kousen posted a discussion

One Year after Brachy + ADT and EBRT

My one year appointment, and tests are good news. No detectable PSA and my testosterone is increasing! Still some residual hot flashes, some ISB, and fat accumulation around my mid section ( Its the ADT ) even though my weight has not increased. Doctor said that the residual issues may take a while to resolve, especially at my age (76).See More
yesterday

Forum

Update on My Pca 17 Replies

Sorry I have not updated my post in such a long time. I finally got a call from my former Emory urologist, Chad W. Ritenour, M.D. and he apologized for not getting back to me sooner. He explained serious delays in information being passed along to…Continue

Started by John Paul Jones. Last reply by Sally Layton Laney 3 hours ago.

Varian Edge Radiosurgery

Struggling w/ treatment options for T3BN0M0, Gleason 9, PSA 15.9 Began Bicalutamide 50 mg oral med and had round one of Lupron 6 month injection this week. Now must sort out EBRT (WPRT) given by IMRT, vs. Proton Therapy, vs. Varian Edge Technology.…Continue

Started by Sally Layton Laney 23 hours ago.

One Year after Brachy + ADT and EBRT

My one year appointment, and tests are good news. No detectable PSA and my testosterone is increasing! Still some residual hot flashes, some ISB, and fat accumulation around my mid section ( Its the ADT ) even though my weight has not increased.…Continue

Started by Alan Kousen yesterday.

Radiation treatments 9 Replies

Greetings all, I am a male, 67 years old, diagnosed with prostate cancer in August 2012, psa 29, gleason 7, confined to the prostate, and in December 2012 completed 45 treatments of EBRT. PSA remained low (.5 with slight variations up and down…Continue

Started by Douglas Moore. Last reply by Douglas Moore on Thursday.

Survival with mPC 16 Replies

Having been diagnosed with metastatic PC over 2 years ago, and currently doing well on abiraterone, I'm interested in the question of long-term survival with this condition - say, 5 years or more. Which treatments have others found useful?Continue

Started by James. Last reply by James Feb 17.

PSA increase 9 years after RP 6 Replies

I had radical surgery 9 years ago and my PSA level has remained "undetectable" for most of that time.  However, my latest test shows a continuation of an increasing level begun 2 years ago.  In 2015 my PSA was .04; in 2016 it was .07; this year it…Continue

Started by Ken. Last reply by Howard Ross Feb 17.

 
 
 

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