Surgeon recommendation

lovemydh

My 39-year old husband has received a preliminary diagnosis of a carotid tumor and will receive the results and final diagnosis next week. I am looking for surgeon recommendations because I'd like to be prepared if his ENT wants to discuss scheduling surgery.

I've seen mixed feedback about whether vascular surgeons, ENTs or a team perform this surgery; should we insist on one over the other?

Is there a way to obtain accurate information about experience with this type of surgery or complication rates other than asking them and taking their word?

Does anyone have surgeon recommendations in the Southeast? I've seen very old threads with doctors mentioned in Pittsburgh, Nashville and Houston. We are in SC. I may reach out to some of those doctors if I don't hear anything from this forum.

Thank you very much!

jcortney

Not specific in your region

But, you really want a surgeon that is VERY experienced in H&N cancer.  Preferably one with extensive TORS (robotic surgery) experience.  You will usually only find them around major cancer centers and they usually work as part of a team that includes medical oncologists and radiation oncologists.  There's an old adage that I've found to be very true, the closer your doc is to a major hospital, the more experienced he/she tends to be.

Don't go with the first guy that wants to treat you, make sure you talk to at least one other and one should definitely be at a major cancer center that regularly treats H&N.  Even if you wind up not being treated there (I went to MD Anderson for the consult and got treated in Dallas) finding out what they think and the appropriate protocol for what your husband has might make all the difference.

Good Luck and be glad you found this place.  The folks here will give you the best information you will find anywhere.

Joe 

Ladylacy

Surgeons

Emory Winship Cancer Center in Atlanta, GA has several very good doctors that specialize in head and neck cancer.  My husband's surgeon was a Dr. Wadsworth, excellent surgeon, excellent bedside manner and a very caring man who took his time and explained things to us.  There are several others.  Now as far as oncologist, there is one there that my husband had and we weren't too pleased with him.  When my husband's second primary reocurred and spread to his lungs, this oncologist who treat his second primary the first time, told us that since he wasn't having any problems, he saw no need for treatment then.  What?   By this time my husband had been thru radiation, chemo and surgery for laryngeal cancer, then a second round of radiation and chemo for a tumor at the cervical of his esophagus.  Surgery was ruled out and he had decided enough was enough.  This excellent doctor didn't try to talk my husband into anything else and told us if we ever needed anything just to call him.   We were told up front that the second round of radiation could damage his cartoid artery because  the radiation would be basically in the same area as his first round.  They watched him closely and thankfully he had no problems.

You definitely need a second and even third opinion and a doctor who has lots of experience in the field.  A head and neck specialist is one who does just about any type of surgery dealing with the head and neck.  Our local ENT who treated his laryngeal cancer told us when we found out that the radiation and chemo didn't work, that we needed a head and neck specialist and referred us to Emory.  I am thankful for that because during the surgery for the removal of tumor and larynx, the surgeon found that he had to reconstruct the back of my husband's throat due to radiation damage. 

Wishing you and your husband the best -- Sharon

fishmanpa

Experience Counts

As others are saying, a surgeon with extensive experience in H&N cancers and TORS is the way to go. A CCC will typically have many on staff. I was easily able to find information and ratings on Google for the doctors in charge of my care. I was treated at Johns Hopkins. My surgeon is one of the best (Dr. Jeremy Richmon) as well as the rest of the team that was in charge of my care and treatment. I credit them with my survival. There's a Hope Lodge in Baltimore as well as other locations close to the major CCCs. We were able to spend our time close to the hospital at no cost. This is your life and if travel means a better chance, go for it!

Positive thoughts and prayers

"T"

TracyLynn72

I'm in NC

and can't say enough great things about the Levine Cancer Institute!  They are based in Charlotte, NC, but have locations all around the area.  I admit that I did not go to them first and wish I had.  I had a terrible experience with a doctor who did NOT know all that he claimed to know.  My experience once I got to Levine was AMAZING and they were all top notch!  I wish you the best in finding the right place and plan for you. 

wmc

Go to one who has a tumor board.

You have been given very good advice. I would go to one that dose many of this H&N and not go local, unless local is like MD Anderson or like that. They did a neck dissection where they remover the lymph glands and had to move or go around all the main nerves and carotid artery on both sides. Took 86 glands from the bace of the neck up to the ears on both sides. Here is a link for hospitals and how they are ranked. You can check Head & Neck and cancer both. It can get pretty scary.

http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

Hope this can help some.

Bill

ratface

SPOHNC

Why don't you get in touch with the local chapter of this organization and ask the group coordinator for that area. Support For people with head and neck cancer has local chapters in every state and multiple locations in large metro areas. They generally meet locally once a month usuallly in major hospitals. Call the national number and tell them what you are looking for and they will put you in touch with someone locally who knows all the current doctors in the field and their reputations. Our Chicago group coordinator knows all the top doctors in the chicago metro area and the equailvalent of your local will have the same information. All the best.

lovemydh

Thank you

Thank you all so much for your feedback. I appreciate it very much... we're meeting with our local ENT this afternoon to review CT scans and I feel much better prepared to reply that we plan to seek a second opinion before scheduling surgery. Thank you!