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Joined: Aug 2009
Posts: 90
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2009
Posts: 90
get a second opinion! we had positive experience at MGH with their H&N team. Also had a phenomenal surgeon, Dr. Zeitel
Dana Farber has a good reputation as well. Not far from RI.
Good luck



caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Now this discussion I have enjoyed reading more than most. This one is lively and makes a lot of sense. Thanks all .


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
while cookey has spelled out the hazards that probably prompted these doctors to forego surgery, I would get a second opinion from a CCC in light of my own experiences. I turn 62 next month and my skin was so damaged by radiation and Erbitux that I needed special burn dressings that needed changing twice daily and were so painful I make sure to leave them in my signature. Plus I had "maximum" radiation on my neck (72 gy). Yet none of that stopped my CCC team from surgery on the exact same skin and spots in order to tackle the recurrence. True the aurgical pathology report noted the [quote]dense fibrosis, atrophy of skeletal muscle tissue and intimal thickening of vessels, with total luminal occlusion most suggestive of prior radiation therapy[/quote] but that did not stop them from giving me even more radiation with CyberKnife and more chemo with cisplatin. As David pointed out, sometimes extra risk is worth the chance. I am waiting with bated breath for next week for the results of my six month post surgery MRI . On the other hand, my skin has not recovered from the neck dissection and the pain and healing have been much slower than when I was just 60, so at 71 more surgery could be daunting. Still, second opinion seems warranted.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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