Monday, June 11, 2012

Patient Conferences and Support Groups – Part 2

There is good news to report -  the Boston conference was great and very informative. The support group was also quite interesting and not even close to a “pity party”. 

Owen (husband and caregiver) and I drove up to Boston on Thursday and stayed over for the conference on Friday.  We hit a ton of traffic getting from Manhattan to New Haven – it took us about four hours for a trip that should have taken about 1.5 – 2 hours!  Then it was another 2 hours to Randolph, MA where the conference was being held.  Needless to say, we were exhausted when we got there.  The Comfort Inn provided little comfort.

The conference featured three doctors from the Dana Farber Cancer Institute (DFCI):  Dr. Matthew Kulke, Dr. Matthew Schenker and Dr. Thomas Clancy.  There were also several breakout sessions. I attended one on the importance of nutrition to the neuroendocrine survivor, the other on integrative therapies for carcinoid survivors.  The first was not that interesting, covering basic nutrition and how to adjust one’s diet for gastronintestinal symptoms that some carcinoids have.  The integrative therapies discussion was much better. It was give by Stephanie Meyers, a registered dietician at DFCI. She spoke about how to integrate certain nutrients that carcinoids can be deficient in (vitamin D, niacin and omega 3’s) into the diet or how to use supplements. She also spoke about mindfulness and meditation into life to reduce stress associated with having cancer.  Ms. Meyers recommended a book by Danny Penman called Mindfulness – an 8 Week Plan to Finding Peace in a Frantic World.  She also noted that you can watch videos of the meditations at  by typing in Danny Penman and the videos might be more helpful than reading the book. 

I was impressed by the doctors and the breakout sessions.  I feel that I can go to DFCI if things in NYC do not work out.  The people at my table were Farber patients. They seemed happy with their care.  The woman sitting next to me had carcinoid surgery with Dr. Clancy and it went well.  Another woman has had carcinoid cancer since 1996 and has been going to DFCI since then.  No one said that they ever had to wait more than ½ hour to see a doctor.  Although she was not at this event, I’ve heard that Dr. Jennifer Chan at DFCI is also quite good.  The New England Carcinoid Connection did a very good job putting on this event.

Sunday was my first time at a support group.  Owen and I went up to the Bronx to attend a local support group. The host, Emily Zuckerberg told us it was the first such NYC group in 10 years!  There were eight people in attendance, 5 patients and 3 caregivers.  We all introduced ourselves; some of them are people I have emailed off the ACOR listserv but it was good to meet them in person.  We had an interesting discussion concerning treatment options and procedures that we had considered or undertaken.  Of the 5 patients, 2 had gone to Dr.Jekyll (My ex-MSKCC doc.) and fired him as well!  Three patients, including myself, were going to Mount Sinai, and 2 had been to New Orleans for surgery and were using local oncologists with Dr. Woltering supervising.  One of the group had been told by a Dr. at Mt. Sinai that she needed surgery.  She recently went for a second opinion with Dr. Steven Libutti at Montefiore and said that he was quite nice and professional. 

The group decided to meet again after the end of the summer. Hopefully, we will find a Manhattan location by that time.

In summary, I found this group very interesting and it has shattered the myths in my head about support groups.  The meeting was quite uplifting and there was no “pity party” to be had.