| | Joined: Jan 2015 Posts: 2 Member | OP  Member
Joined: Jan 2015 Posts: 2 | I'm looking for recomendations for the best ENT team dealing with head and neck cancer. My son recently had a jaw resection to remove osteosarcoma at OHSU in Portland and has positive margins and they are talking about going in to redo the resection to remove more of the mandible.
We are wanting to get 2nd and 3rd opinions and would like to hear from those of you who have went through it.
I am a breast cancer survivor and found my reconstruction doctors on a forum like this. I know that it is the patients who have the real info.
Thank you!
| | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | LFSDiva
You should get opinions from a CCC "Comprehensive Cancer Center".
Dont stop at nothing less. MD Anderson on Houston Texas is known to be one of the best.
Prayers
Heidi
Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015
| | | | | Joined: Jan 2015 Posts: 20 Member | | Member
Joined: Jan 2015 Posts: 20 | We live in Tampa and have Moffitt in our backyard. They are known to be one of the best CCC in the country and have a whole section just for Head and Neck Cancer. So far I love my boyfriends doctor - Dr. Otto.
Loving Caregiver for my boyfriend
3/14 SCC L tongue, partial glossectomy L tongue, rads L nodes
12/14 Recur Stage III
2/15 Front of tongue glossectomy, ND w/ free flap
4/15 begin 8 wks rads/3x chemo
4/20/15 Steve passed away
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I am going to ditto both of the above statements. MD Anderson and Moffitt are supposed to be terrific. Go with a top CCC it's disruptive if you have to travel but it's only for a short time and if all works out you walk away NED - plus how can you put a cost on a human life. This is cancer you want the absolute best - hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2015 Posts: 2 Member | | OP Member
Joined: Jan 2015 Posts: 2 | Thank you.
This is his 3rd primary cancer (we have a genetic disorder, Li Fraumeni Syndrome that makes us susceptible to pretty much all cancers). He had surgery for a sarcoma in his leg at MDA last year about this time. And was seen in their Head & Neck Clinic in 2012. It was the Dr. at MDA who recommended the Dr. at OHSU, which has a comprehensive cancer center. However, I think we need to at least consult with them again. His cancer is a malignant transformation of fibrous dysplasia, and he has other spots of fibrous dysplasia in his skull.
We definitely don't mind the travel. We have done it twice before. I have already sent a message to his oncologist there and to Dr. Hanna, his head and neck doc to get appointments.
Thank you for your input. I appreciate it very much. | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yikes - best of luck...!!!! 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | CCC are great but there is great value in previous providers who have much more insight and experience with the specific history, discussions, response to treatment, recovery side effects, etc. Most certainly get opinions from those folks too. You seem like in as best hands as is possible so best of luck.
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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