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Joined: Jul 2014
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kateps Offline OP
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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.

Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
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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/cancer

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jul 2014
Posts: 3
kateps Offline OP
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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.

Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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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!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jul 2014
Posts: 3
kateps Offline OP
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Joined: Jul 2014
Posts: 3
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?

Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
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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


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Joined: Jan 2013
Posts: 1,291
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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


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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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


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
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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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Joined: Sep 2006
Posts: 8,311
Get as many opinions as you can. You will learn a lot during this process.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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