| | Joined: Mar 2011 Posts: 2 Member | OP  Member
Joined: Mar 2011 Posts: 2 | Hello! I stumbled upon this website through much internet researching on maxillary sinus tumors. I am hoping someone out there can offer much needed advice. i am 39 yo mom, had a gigantic maxillary sinus tumor removed August'10, after four weeks and five pathologists opinion, I received word from Atlanta the tumor should be considered a reactive process, not a malignancy. My surgeon said he got all of it. Well, six months later, it has regrown, this time in the maxillary bone behind the sinus wall. Three surgeons here believe it is not cancerous, but say they do not have skills to remove this tumor, and I will need a maxillectomy. I am in Georgia, have an appointment at Emory FIVE weeks from now. I am very upset, feeling like no one is really helping me. Can anyone tell me the best surgeons for maxillectomy? I am looking at Johns Hopkins, or HUP. However, I do not know anyone there. This is all just scary!!
Last edited by Tara T; 03-01-2011 12:36 PM.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Im sorry you are going thru this. All I can do to help you is give you links to the top hospitals in the country. Push for an earlier appointment by calling back and asking for one. The worst they can say is no. Keep trying and explain how serious your situation is. Maybe you will get lucky and someone will have a cancellation and that you could take the open slot. Best US hospitals... http://health.usnews.com/best-hospitals
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: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 126 | Sorry to hear of your current situation and need for surgery. As you can tell from my signature line, I had a maxillectomy. Feel free to send me a message or ask any questions regarding this surgery. I have some experience with adjusting to and living with the effects of a maxillectomy. Five week does seem like a long time to wait. I would definately try to get this moved up. You also said "they believe that it is not cancerous", have you had a biopsy? If not insist on a biopsy right away!
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Mar 2011 Posts: 2 Member | | OP Member
Joined: Mar 2011 Posts: 2 | Thanks to you guys for your advice. I believe they think it is benign because my massive tumor removed six months ago was ruled benign, though several pathologists could not "name" the tumor. This is thought to be a regrowth, however, there is no way to say for sure without a path report. I guess my gut feeling is that Emory is not the place, as I do not see much more than regular ENT doc's online. I have researched all day, and am impressed with HUP. If anyone has any experience there, good or bad, please let me know. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Several members have been treated there. Hope some will give you their opinion soon. I am from around that area and know they have an excellent reputation. I think the forum members had favorable things to say about HUP.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Tara,
I had my total laryngectomy and left neck dissection at HUP and love my surgeon whose name I will send in a PM. I have no clue as to whether he does the type of surgery you need. The nursing care 9 years ago was variable but competent.
Since you are going to be traveling so far, why are you not considering MD Anderson which is number 1 or 2 in the country? Does your insurance not cover them?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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