My story is long, so I will try my best to summarize.
Originally diagnosed with SCC left-side of tongue in 6/91--T1N0M0; had surgery.
Recurrence in 10/04--surgery--T1N0M0.
Recurrence in 8/05--surgery (T1N0M0) and now beginning the process of how to stop this once and for all.
IMRT was recommended by local radiologist. Went to Dana Farber and they recommended surgery to remove remaining left side of tongue w/ reconstruction, then followed by combination radiation and chemo. Also mentioned was node dissection. This info was rather overwhelming.
Now looking at going to MD Anderson in Houston for another opinion. I have sent medical history and am waiting for 'acceptance'. I have been told I need to be there for 5-7 days for tests. DF only saw me for an afternoon.
I am traveling from New England and am curious as to why so many days and what tests will be done. Then, if treatment there is chosen...housing, etc. I'm concerned with costs for the consultation/treatment.
Any info would be great!!!
CMS, I'm sorry you are having to deal with this and I'm afraid I can't answer most of your questions but I will be curious to see what MD Anderson says compared to DF.
Since you've had two recurrences, even though they were all Stage I when caught, it's obvious you have an aggressive form of cancer that isn't being caught entirely by local surgery. DF has recommended a correspondingly aggressive treatment plan (which they did for me too by the way, I wsa Stage II, though I wasn't dealing with a recurrence). The way I look at it, you want to be aggressive in your response, especially when it's clear the cancer is aggressive.
It sounds like you have not had any kind of neck dissection? I suspect that is something any place will recommend, since it's possible there is cancer in your nodes that won't be detected by CT scans.
Anyway, good luck with the trip to MD Anderson. Any insurance company should cover the costs of a second opinion about this and the cost of tests they will want to do. If you go there for treatment, you probably will need to find your own way of covering the costs of housing though. I'm sure MD Anderson can help you find something reasonable if you end up making that choice.
I'm sure lots of other people here will be along who can answer some of your other questions.
Nelie
From what I understand MD ANderson does have housing/apartments available for their patients.
Good Luck making your decisions!
Tami
I went to MDACC with tests in hand, but before they began treatment and a tumor board they reconfirmed the information. So I redid some work that had already been done, albeit at a lesser institution. MDACC does not have housing, but referral services to apartments/rental condos that are run by two church groups in the area, that come fully equipped with everything you can imagine for pretty cheap prices within a quarter mile of the hospital. I stayed in these for about 3 months on two separate occasions and it was a deal and a half. Everything from TV's and VCR to FAX machines and paper towels, sheets, silverware, and more were all in place and ready to go for about half the price of an empty apartment. I wish I could put my finger on the name of the church group that owns these condos and rents them out, but I'm sorry to say that I can't find the records. The social services people at MDACC will be able to turn you on to them though, that's how I found them.
my mother and father are at MD Anderson right now and are having a difficult time deciding whether or not to use the doctors there for treatment, or to return to Charlotte, NC to recieve treatment there. Both doctors are suggesting different treatments.
have you had a positive experience at MD Anderson?
if you're still there, say hi to my mom and dad for me. my dad has stage III oropharynx cancer.
I'm also debating going there and just found out about the 5-7 days. I have an oral tongue tumor, already had chemo and IMRT a few months ago. This reduced the tumor, but didn't destroy it. So now, surgery of the oral tongue. The other recommendation to me is Dr. Kaplan at Stanford. Anyone know anything about Stanford's program vs. MD Anderson? I really don't want to leave home for 5-7 business days at this point just for an initial consultation. Then again, I do want the best surgical results. It's a big decision for me.