Unfortunately, many carcinoid/NET patients are misdiagnosed for years, and even after they are correctly diagnosed they are probably seeing a doctor who has little or no experience with neuroendocrine tumors. My best advice, and what really helped me with my treatment regimen, is to join a local support group of fellow “noids” to find out the latest and greatest information.
Short of actually going to a support group, at minimum you should read as much as you can online to learn about what’s happening with carcinoid treatment and what therapies patients are trying. A couple of good places to start are:
The Carcinoid Cancer Foundation: http://www.carcinoid.org/ This site has a great link to help “Find a Doctor”. Perhaps one of the most important decisions you’ll make is to be seen by a true carcinoid specialist. There aren’t a lot of them, and you may have to travel some distance, but it’s the only way you’ll have a chance at getting the right treatments. Also visit the NET Research Foundation (formerly Caring for Carcinoid Foundation) at http://netrf.org
Some of my favorite patient blogs, support groups, and e-mail lists are:
The Carcinoid Cancer Online Support Group: http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=CARCINOID
NorCal Neuroendocrine Cancer Fighters: http://health.groups.yahoo.com/group/NCNCF/
NorCal CarciNet Group: http://www.carcinoid-net.org/
Lois Merrill Foundation: http://theloismerrillfoundation.org/
Lucy’s ‘Noid Blog: http://lucysnoidblog.blogspot.com/
You can get overwhelmed with information and lingo reading all of these, so take your time, read a little each day, and try to get friends, family members or a caregiver to read too. That way you can all compare notes and ask questions.
As of 2015 my primary oncologist is Pamela Kunz, MD. She practices at the Stanford Cancer Center in Palo Alto, CA. The Stanford Cancer Center phone is (650) 498-6000. http://cancer.stanford.edu/
Excel Diagnostics in Houston, TX is where I received my four rounds of Lu-177 PRRT from August 2011 through January 2012. Their website is http://exceldiagnostics.com/ and their phone is (713) 781-6200.
Lastly, you can always contact me at firstname.lastname@example.org if you have any questions, want more information, or just need someone to talk to who’s battling carcinoid.