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#58408 05-29-2006 02:36 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I'm going to Dana Farber because I have family and several friends around Boston and so I have a free place to stay if I have to stay a few days and people to come visit me if I have to be in the hospital. New York city is expensive (and so's Boston if you don't have people you can stay with). Or that's why I went there originally for a second opinion on whether I needed radiation over a year ago.
This time, a few months ago I was at a point where I just wanted to see someone who had some real expertise in treating swallowing problmes of people who had gotten radiation because I didn't feel like what was happening here was making any progress (turns out that's because I had strictures that they had missed seeing so all the exercises I was given were not doing much good) and I got a referral through someone on this board to an ENT at Mass Eye and Ear in Boston, who then referred me to a speech pathologist at Mass General who specializes in treating patients with swallowing issues from treatment for oral cancer. She did the seocnd barium swallow that showed the strictures, but Mass General won't do the sirgery because apparently it is "too risky" (I know from other friends who've been treated at MGH that they are very concerned about their statistics for successful surgeries without complications).
So she referred me to a surgeon at Dana Farber. It turns out this ENT/surgeon is the one who checked me out briefly when I went for mysecond opinion before radiation over a year ago. But I didn't go there for my radiation treatment. I had it done here Cayuga Medical (our local hospital) has a radiaiton medicine unit that's run by Roswell Park--so technically I was treated at a CCC right here. But I didn't really have the support of a head and neck cancer team at a CCC (although I am generally happy with the ENT and medical oncologist who treated me here), and no one even warned me about dysphagia or strictures!
Anyway, I still don't know all that much but it does seem to me your husband is probably still healing quite a bit--he isn't even three months out from radiation so maybe things will get better on their own.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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