Saturday, June 2, 2012

Patient Conferences and Support Groups

Before I had cancer, I had been mostly uninvolved with the medical field, patient issues, or any sort of healthcare education.  My family has a history of heart disease. That is what I thought I would die of and I may yet.  I generally keep myself healthy, eating right and exercising.  The main reason was to prevent heart issues.  Instead I have neuroendocrine cancer. 

I had never heard of patient conferences before I was diagnosed with cancer in 2010.   Since then, I have been to three such events.  Usually these are either a half or full day, with both patients and caregivers as the primary audience and doctors, nurses, and nutritionists as speakers.  All three conferences have been quite informative. I was able to meet some of the more experienced carcinoid doctors to discuss the disease and treatment options, though sometimes the material is a bit too technical for me. I do not have much medical aptitude but I am learning the terminology. I also enjoy meeting other patients at these forums. I like discussing their treatments and issues in person, rather than over the internet. 

On June 8th, I will be going to a patient conference in Randolph, MA that is being sponsored by the New England Carcinoid Connection  (  This is a little out of the way for me, being from NYC.  I look forward to seeing the doctors from Dana Farber Cancer Institute in case my situation with the NYC doctors does not work out.  It’s also been almost a year since I’ve been to such an event, so I am both hoping to learn something new and to meet other patients.

I have always heard about cancer support groups.  My general feeling is that I would not like it.  I assume it might be like a "pity party" where everyone talks about their pain and suffering.  My personality does not fit well with this type mentality - I tend to have an optimistic attitude.

I am not aware of any active support groups in NYC.  I'm not sure why. In a city of 8 million people, one would think that there would be plenty of carcinoid patients who might want to form a group.  Emily Zuckerberg, spouse of a carcinoid patient, is starting a support group in the Bronx.  I am planning on attending the first meeting which will be on Sunday June 10th at 1:00 pm at Riverdale Neighborhood House, 5521 Mosholu Avenue, Bronx, NY 10471.  If interested in attending, please email Emily at  I am hoping it will be a valuable experience and that I can talk to people who may be using the same doctors and hospitals or can give me advice on alternatives.  

So, next week will be a double dose on carcinoid events for me.  I am hoping to learn something and to dispel some myths in my head about support groups.  If you will be at either event, please introduce yourself - I would love to meet you in person.