Hello,
I just joined this forum with the hopes of gaining perspective on my mother's oral cancer diagnosis. In the past five years, my mother (65, fit, nonsmoker, no risk factors for oral cancer) has had three surgeries and a course of radiation for squamous cell carcinoma. She has been treated at Massachusetts Eye and Ear, but was recently told that surgery is no longer an option. Her team at Mass General has questions about whether radiation will be effective against the spread into her sinuses and along her facial bones and under her ear. They mentioned proton beam therapy as a possibility, which would mean a move to Boston from our home in Maine for an extended period. We have an appointment on Thursday in Boston. Mom is prepared for the possibility of hearing that her cancer is now at Stage 4 and that it has metastasized. I have read around and found that other cancer centers get higher marks for oral cancer care--such as Sloan-Kettering and MD Anderson. Should we trust what Mass General tells us? Should we seek a second opinion, or request treatment at a more renowned center such as Sloan or Anderson? I don't know who or how to trust, once we get the information on Thursday. I am looking for your advice. Thank you so much.
A second or third opinion is always beneficial. Massachusetts Eye and Ear, General Mass are top hospitals. Top CCC choose the patient, you don't choose them, especiallly in the recurrence setting, and if treated elsewhere. MSKCC radiology told me not to bother coming in for a consultation in 2012 for a recurrence! I went elsewhere, and had three more neck dissections, two internal radiation, and three external beam radiation treatments, one which was Proton Therapy after that!
MSKCC is top in cancer #2, #43 in ENT, still excellent, but others are rated better performing in ENT, as well as many others hospitals being the same. I look at their Cancer and ENT ratings, plus others.
Check U.S. News Reports Best Hospitals.
http://health.usnews.com/best-hospitals/rankings/cancerGood luck
Thank you so much for your advice and help. I have had difficulty getting through to MSKCC. They have recommended that we stay more local--such as Dana Farber in Boston. Is locality something to consider? I figured that we would go where we could get the best treatment. I just do not know where that is.
That's another good cancer hospital, Dana Farber. Mass General is #6 in cancer, #7 in ENT. That's MSKCC told me, stay where you're at or at my 2nd choice, but that was after a month of running around, and costing me over $400 to obtain, copy, fax, express mail Everything!
Do folks believe that the US News ranking is the best source for guidance? I have looked it all over, and made phone calls to the places. Generally, they seem to advise to stay closer to home with a more local CCC. I am hung up on whether I should push for a ranked number 1, 2, or 3 CCC, or would a second opinion at Dana Farber, which scored 5th in cancer, and three hours from our home in Maine, be an acceptable place for a second opinion?
You are your best source of guidance, and will get back as much as you put in. There is also personal recommendations, doctor recommendations, and other sources. There is also about 29 NCCN designated treatment centers, which are probably on the same Top Hospital lists.
http://www.nccn.org/members/network.asp
Welcome Kate.
These printed ratings are similar to college ratings. At some point it becomes bragging rights to some extent. Personally, as long as you are being seen at a well respected facility that uses a team approach and tumor board, factors such as how you personally feel about the team and level of trust and ability to communicate are more important that being 3rd or 7th or even 15th place.
Some very excellent facilities don't rank since they are not teaching or research affiliated to some university. I think this distinction makes a big difference for rare, unusual, and new treatments and trails. If you have a more "routine" sort of cancer, I'd go with the team that listens the best and taking the time to really perform according to your specific situation.
Good luck
Don
I see several things to consider here.
1. The nature of your mother's cancer - Her's is not one of the more routine forms of oral cancer, such as a cancerous tonsil like I had (with no lymph node involvement). Mine being more routine meant, at least to me, that I might not need the #1 or #2 ranked treatment facility in the country. From your description your mother's cancer is not the more routine type. You've mentioned sinus involvement, bone involvement, etc. You are much more a candidate for a higher rated facility. That being said, I've heard a lot of good things about Dana Farber.
2. From a disruption point of view. Your mom is already going through a rough ride. A move to a far away place will be just that much more disruptive, and difficult and expensive. Finding a new place to live, moving into and setting up that new place, acquiring utilities, the list just goes on and on. Are you going to be able to do all those things for her so she doesn't have too? I promise you, she won't feel like doing it herself. Are you going to live with her 24/7 to help get her through this difficult treatment phase in a new location perhaps away from most of her friends and other family? I see a certain benefit to staying where you are, in a familiar location, near friends and other family who can help you in the caregiver role.
3. Expense - do you have concierge insurance coverage, where cost is not much of a concern? Most of us don't have it, so cost is a factor. Do you have the assets to up and move just for treatment? What will you do after treatment is over, will you stay in the new city, or move back to Boston area again, at even more expense.
If you have a good CCC, for that matter any CCC in your local area, seems to me you ought to use it, especially in light of the non-routine nature of your mother's SCC factors. Unless I've misread what you wrote, even the CCC's are recommending you stay local.
good luck with whatever you choose,
keep us informed, we are interested in your outcome,
Tony
I don't think there is any cancer that is "routine." If anything, their unpredictable, especially with head and neck cancer being so complicated. No one can predict what type of response or outcome anyone may have. A recurrence is even more difficult to treat, and not everyone can.
Get as many opinions as you can. You will learn a lot during this process.
Getting a 2nd or more opinions is a good idea. Between my initial treatment and a recurrence, I went to 4 different treatment facilities, and the medical recommendations were often very different. When I had a recurrence after having already had RT, I went to Johns Hopkins in Baltimore - the best choice for me. Hopkins is a teaching hospital and ranked in the top for cancer in general and head & neck cancer in particular. They get patients from all over the world coming there and help the patient and their family schedule everything (appointments, accommodations, etc.).
Wishing you and your mother the best!
I ended up going to 5 different cancer docs at completely different places and if I had stopped at nos 1, 2 or 3 I would be dead today.