| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Monica, here is US News list of top US hospitals for 2012/13. The big ones for oral cancer are Sloan-Kettering, MD Anderson, Johns Hopkins, and Moffitt. US New Top Hospitals 2012/13 ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Feb 2013 Posts: 20 Member | OP Member Joined: Feb 2013 Posts: 20 | Cheryl, you posted since my response but thank you for sharing your experience as it is very helpful. My tumor is aggressive. Size wise it borders on t2 i think. It is just at the limits. And from your and Tina's accounts about recovery it isnt as horrible as I imagined. I know it is not a picnic, but I was imagining years and years of rehabilitaion or something. The info you gave me about HPV vs non HPV, responses of each etc. has given me better insight as to what is involved and why. Thank you! Everyone has made me fear surgery less than I did! So glad that you are doing well!
2/13/13 Dx scc anterior 2/3 of ventral surface of tongue 3/8/2013 partial glossectomy neck dissection at Wake Forest 1 out of 61 nodes had cancer but was encapsulated 4/22/13 rad tx started; 30 sessions over 6 weeks at Wake Forest 6/4/13 finished rad tx 9/5/13 PET scan NED | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Each CCC is different, but they do follow standardized practices set forth by NCCN, and other professional medical organization's as a guideline. The doctor's expertise, experience, preference is a factor, as is the hospital's, any clinical trials, and type of any technical equipment they utilize like robotics, proton therapy, etc. and the patient's request matters too. You will find many doctor's who have expertise in certain areas in the same speciality. If you want, you can go to the hospital's web page, and see what they offer, including some who have the doctors full background. I also like to go to U.S. News and Buisness report best hospitals to see where they rank in cancer, ENT, and other info, and NCCN, NCI listing of associated CCC, and a google or two to see different comments of patients on various sites about the doctor.
Vanderbilt University Medical Center in Memphis is nationally ranked 7th in ENT, 29th for cancer in the U.S.
I hope this helps.
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: Feb 2013 Posts: 20 Member | OP Member Joined: Feb 2013 Posts: 20 |
2/13/13 Dx scc anterior 2/3 of ventral surface of tongue 3/8/2013 partial glossectomy neck dissection at Wake Forest 1 out of 61 nodes had cancer but was encapsulated 4/22/13 rad tx started; 30 sessions over 6 weeks at Wake Forest 6/4/13 finished rad tx 9/5/13 PET scan NED | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Monica,sorry you have to come on the roller coaster ride, but I join the others in welcoming you. At this forum, you have a circle of friends who have had all kinds of experience with cancer and who understand thoroughly what you are going through. Do ask whatever questions you have, someone will bound to have some insight. Good luck!
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2013 Posts: 65 | Hi Monica. In my opinion Wake Forest Baptist Medical Center is an excellent medical center. Their ENT department is one of the best in the country. They see people from all over the world and are preferred over Duke for Head and Neck cancers. My husband's doctor is a senior faculty member there and in Castle Connolly's estimation, is among the top 1% in the nation in his specialty. We drive about 300 miles round trip to see him, it's been well worth it. For us, that place has been excellent! I wish you the best.
Wife/caregiver to Charles ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001 Tonsillectomy, RND and six weeks RADS 2/2001 ENT diagnosis from CT scan, SCC in Rt tongue 2/13 25% of tongue removed 2/13 (clear margins) SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014 Surgical biopsy shows cancer in larynx 9/2014 Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014 Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Monica, you had mentioned UAB in a post on the previous page. If I recall correctly, a couple of OCFers have been treated there. Here's a thread started by one of them -- perhaps you could send the original poster an email or a private message to get more information. UAB is a member of the National Comprehensive Cancer Network, whose guidelines are the gold standard for treatment.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Nov 2012 Posts: 20 Member | Member Joined: Nov 2012 Posts: 20 | [quote=Cheryld]Anyway, I had the works. And recovery from surgery was far easier![/quote] This was my husband's experience, as well. The surgery (which removed about 1/4 of his tongue) was not exactly a picnic, but he was out of the hospital after 4 days, off his pain medication by about 12 days, and back at work after 2 weeks. Once the swelling went down, right around the 2-week mark, you couldn't tell any difference in his speech. His tongue today even looks much the same as it did before surgery (other than the radiation damage), it just has a little crescent missing.
Husband diagnosed 10/11/12 with Stage III oral tongue SCC, T3N1M0 (HPV negative). 35 years old, non-smoker, non-drinker. Hemiglossectomy and left selective neck dissection (levels 2, 3, and 4) on 11/01/12. Chemo (Cisplatin x 3) finished 1/23/13. Radiation finished 1/28/13. | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Hi Monica, I note your consult was Wednesday. Hoping things went well (comparatively speaking of course) for you.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Feb 2013 Posts: 20 Member | OP Member Joined: Feb 2013 Posts: 20 | Hi Tina and all. I had an appointment at Wake Forest Comprehensive Cancer Center on Wednesday, 2/20 and things went very well. I am so glad that I wnet there. I am having surgery on March 8 for a partial glossectomy. I got a pet scan too and there were a couple of indeterminate nodes (I thought pet scans could definately tell) but nothing has spread Thank the Lord! They also enrolled me into a clinical trial to take the drug Tarceva until Mar 7, day before surgery as they want to see if it will shrink the tumor. So far my tumor has been shrinking. which is amazing. I am going to post more in the treatment forum-well any questions I may have because I think I am in the wrong forum for this. Thank you for asking Tina, about how it went.
2/13/13 Dx scc anterior 2/3 of ventral surface of tongue 3/8/2013 partial glossectomy neck dissection at Wake Forest 1 out of 61 nodes had cancer but was encapsulated 4/22/13 rad tx started; 30 sessions over 6 weeks at Wake Forest 6/4/13 finished rad tx 9/5/13 PET scan NED | | |
Forums23 Topics18,199 Posts197,006 Members13,185 | Most Online614 Jul 29th, 2024 | | | |