Latest in the occasional series of e-Patient Requests.
A friend writes (anonymized):
Someone I know was just diagnosed with colon cancer. Yikes.
It seems to have been caught very early (routine colonoscopy, no symptoms) and she is now going through the genetic testing/biopsy/CAT scan stage over the next few weeks.
She asked me if I knew anyone who could tell me who the best drs (colorectal oncologist-surgeons) are in the NYC area. I’d deeply appreciate any advice you can give me for her. Thanks.
I don’t know individual doctors and I don’t know anything about colon cancer, but I know I’ve crossed paths with many of you out there. I realized that my Communities page has information about gut conditions IBD and celiac, but nothing about colon cancer. Help! I need two things:
- Information on patient communities, to add to my page.
- General advice on how to decide who’s “the best doctor” (which leads to the question “what is ‘best’?”)
And let’s add a third:
- What-all does a newly diagnosed patient need to know, to get oriented? For me it was reassuring to know the actual odds, first-hand, from others who were in my situation – other patients. (Plus, a lot of their advice didn’t exist on medical websites.)
I’m hesitant to ask for specific recommendations here, because advice from strangers may not be worth much; I know first-hand that in a good community, advice is cross-vetted by a larger number of people. So I’m most interested in that.
If you want to offer the friend specific recommendations, please email me via my Contact page.
Hi Dave,
The Inspire/Fight Colorectal Cancer Support Community http://www.inspire.com/groups/fight-colorectal-cancer may help. That is an Inspire peer-to-peer resource, created and managed with the nonprofit organization Fight Colorectal Cancer http://fightcolorectalcancer.org.
John Novack
Inspire
Check http://www.imermanangels.com
Looks interesting, Robert – not specific to colon cancer but it’s a new one to me – what’s your experience with them?
These two sites have patient communities for those affected by colon cancer :
https://www.beatingbowelcancer.org/forum/
http://coloncancersupport.colonclub.com/viewforum.php?f=1
Thanks, Nancy!
Great news: I’m at the Mayo Clinic’s social media summit, in the patient panel session. The current speaker is Danielle Ripley-Burges, a 30-year-old who’s been diagnosed TWICE with colon cancer. She’s on Twitter as @DanielleisB, her blog is Semicolon Stories, she’s on the board of The Colon Club, and she works at Fight CRC.
Yay – just saw this when I read about all that you do. Yes – point the patient to Fight CRC. We can offer resources for the NY area. We also offer a free book ‘ Guide in the Fight they can get, it will walk a patient through the journey.