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Just discovered tumor, should I go to a major medical center for surgery?

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

Had a sore throat for a few months and then difficulty swallowing for a couple of weeks. Went to my primary who thought I might have silent GERD due to a medication I was taking. They sent to an ENT (took 2 weeks to get in). PA thought it was GERD but with scoping saw a swollen area on the right side of my larynx (aryepiglottic area)and called the MD in. He said it was blocking part of my larynx and sent me for an immediate CT scan. That was yesterday and the MD called me yesterday afternoon saying it looks like a tumor (2 cm) and scheduled me for surgery next Friday. He seemed very optimistic and said it would be "very treatable."

My concern is that I live in a secondary city without a top medical center. I've been doing a lot of internet research and wondered if I would get a better outcome going down to New York City to one of the major medical centers where they do more of these surgeries. I know that surgical outcomes are related to the number of surgeries a surgeon does. I've emailed the ENT to ask how many of these surgeries he has done in the last two years.

Any opinions on having surgery at a major medical center?

D Lewis's picture
D Lewis
Posts: 1564
Joined: Jan 2010

Is your tumor cancerous? How much experience does your ENT have with this type of surgery. Second opinions are always valuable. Good luck in your decisions.

I accepted surgery and cancer treatment at my Regional Cancer Center, after traveling to Stanford Cancer Center for their Tumor Board. Their Tumor Board told me that my type of cancer was "not rocket science" and could be successfully treated closer to home. That being said, Stanford is doing all my followup work and scans.

If you have questions, a second opinion will help you decide.

Deb

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

Is this a surgery just to get a biopsy or to remove the tumor?

I would ask since you do not know if it is cancer.... doc how much experience do you have treating head and neck cancers?

If it is just biopsy to find out what it is, I would let your present doc do it and share results. If it is cancerous I would find a more experienced specialist. Just post on this site for options on where to go.

I guess I am say more specifics are needed.

Also you need to be comfortable with your care, sounds like you have doubts... if so get another opinion.

Good luck and welcome to CSN. This is the place to come for support, experience, knowledge and friends for life.

John

Kent Cass's picture
Kent Cass
Posts: 1749
Joined: Nov 2009

As Deb and John pointed out, we need a little more info to better advise. Rule of thumb is that the only way to know for certain if it is C is to have a biopsy, then have the sample taken come back from the lab as Positive. To assume something based on a CT is bogus. There is also the following typical order from the time of symptoms to surgery and treatment:

1) Symptom(s), and office exam
2) Needle biopsy in the office, if possible
3) Biopsy, if a tumor can be spotted
4) Pet Scan and CT Scan, to determine all areas w/potential C
5) If biopsy not done yet, then it would be done now
6) Dental check-up
7) Surgery, or Treatment preps (Port, PEG, etc.)
8) Treatment starts

I would advise you make serious inquiries about this growth before anything is done. Being where it is, complications may result from it's removal, as the area you speak of involves your breathing and windpipe, and possibly your eating ability if your esophagus is giving you "swallowing" problems. Very possible surgery to remove it is not the best option. I had two neck tumors, with the top one being very large, and did not have surgery to remove either- chemo, along with radiation, destroyed both tumors. That's what the rads do= they zap the tumor into oblivion, Lizzie. You just might find that a better solution than removal by a so-so Dr. in an essential part of your body that has a small tolerance for error. Please keep us informed. And, yes, WELCOME- you are most welcome to be here.

Believe,

kcass

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

What a great site and great advice. The surgery is for a biopsy. I had the exam and the CT scan on Thursday. I sent the MD a bunch of questions on his surgical experience, technique and complication rates. I was unaware that they would might do two surgeries, he made it sound like he would get it all in the first surgery. I am picking up a copy of the CT tomorrow and want to see what this thing looks like myself. I got on the internet and found a lot of information on this type of tumor. The stats don't look good for this not being some kind of cancer. My profile, female non-smoker doesn't match this cancer but I did work with Formaldehyde in the 1970s when I was in graduate school teaching anatomy, who knows?

I've also sent an email to a Dr. Eric Genden at Mount Sinai Medical Center who is doing a clinical trial with robotic surgery. His published initial trial in 2009 on 20 patients was very promising. My daughter lives down in Brooklyn so I and my husband could stay with her if I am accepted into this trial. Either way, getting a second opinion from Dr. Genden sounds like the way to go.

Any thoughts on how fast I need to move to biopsy/surgery? My ENT scheduled me for surgery this coming Friday. Is delaying another week or two ok?

Thanks for being here.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Hi there!

This has been our experience. Even tho we live in Albuquerque, which is a large enough city to have some expertise, two ENT's were unable to visualize a Stage IV tumor at the base of my husband's tongue. ENT #3 was able to see the tumor with a scope. He recommended surgery and said chemo/radiation was not an option. He told us robotic surgery was the best way to remove the tumor. He sent us to Mayo clinic in Arizona. The surgeon there took one look at Buzz and his scans and told us the tumor was way too large for robotic removal. But then we were offered 3 options: major disfiguring surgery, radiation and/or chemotherapy. After consulting with an Oncologist and a Radiation Oncologist at Mayo, we learned that the very same treatment was available in Albuquerque. Buzz completed treatment January 10. So, getting all the information you can is vital to making a decision as to how to proceed. Waiting a week should not make any difference but it is understandable to want to get this taken care of asap by an ENT who has experience in throat cancer. Take care and let us know how you are doing. Karen

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

Well I picked up the CT report and disk today and they already have me down as "Laryngeal Malignant Neoplasm. 2 cm lobulated mildly dense soft tissue mass effacing the right vallecula, right lateral hypopharyngeal wall and aryglottic fold. They said there is one small 10mm lymph node on the same side but I can't find it on the CT. The quality of the CT done at the doctor's office isn't great (my son had a CT last year which was much clearer).

This weekend I contacted Dr. Eric Genden at Mount Sinai Medical Center in Manhattan and will see him this coming Thursday morning (I live 3 hours north). Wish me luck that he accepts me into his clinical trial and I get this thing removed with the robotic surgery. Of course I will have to convince my insurance company to cover the costs (everything but the robot itself) which will be another ordeal but no one is doing robotic head and neck surgery in our area.

I am keeping up hope. I have a wonderfully supportive husband and great family and friends who will see me through this. All your advice is very appreciated.

Anyone out there have the robotic surgery? I am wondering when I will get my voice back. I am a consultant who will be very limited in my ability to make a living if I can't speak.

Lizzie

Kent Cass's picture
Kent Cass
Posts: 1749
Joined: Nov 2009

Hope Dr. Genden does accept you. And, even if he doesn't, you might try to make inquiries as to what he/his office might suggest you to do with the surgery. 3-hours is a long drive. Are you closer to Albany, or to a center in a neighboring state to the east? Again, Lizzie, I would urge you to find the best place possible for your surgery, and whatever is to follow. Please keep us updated.

kcass

Hondo's picture
Hondo
Posts: 6136
Joined: Apr 2009

I agree with Kent you are dealing with cancer so find the best place you can to do any type of treatment. Wishing you well and welcome to the Family here on CSN.

Hondo

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

I am scheduled to see Dr. Genden Thursday morning. I will take a train from Albany (about half hour drive from my place)into the city Wednesday afternoon. My daughter works in the city and will meet me.

Right now the biggest concern is my local HMO insurance company. My primary sent in an urgent letter to get this appointment approved (out of network). I may end up paying $300 to 500 to see this doctor if the approval doesn't come in on time (ugh). I did talk to my ENT in Albany and he concurs that Dr. Genden in NYC is the top guy and that an all in one surgery with the robot would be the best treatment instead of the planned two step (biopsy surgery followed by surgery/neck resection (if necessary)). I personally want it over on one surgery. The ENT is willing to help me get the insurance company to agree but I fear they will take forever to review and will then deny me because of the added cost. I don't think Mount Sinai will take be if they can't be assured of being paid.

Wonderful, I just got a call from the insurance company they authorized the visit on Thursday and told me what I have to do to get the surgery approved. The woman was very nice and I am now hopeful. Let's hope my luck holds.

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

That's great, Lizzie. I am hopping all goes well for you with your insurance and your appointment.

UWSNYC
Posts: 11
Joined: Aug 2010

I was treated by Dr Genden at Mount Sinai last year. I had a good experience. Please feel free to contact me if you have any questions.
If you decide to have your treatment in NYC, the American Cancer Society runs Hope Lodge on West 32nd St. They provide free housing for the person undergoing treatment and his/her caregiver. Mount Sinai can make the arrangements for you. You need to plan ahead, but I understand it's well worth it.

Kent Cass's picture
Kent Cass
Posts: 1749
Joined: Nov 2009

Great to hear the Insurance is cooperating, and hope Thursday's meet results in the best solution by the most capable you could expect. Excellent to hear. Keep moving forward, Lizzie. You are getting this done the right way.

And UWSNYC- an exceptional bit of info for Lizzie.

kcass

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