Nocam - You sure have had a lot to endure ! -I hope someone with more direct experience than I have can chime in with their ideas or advice.

Re Emory Hospital, it really bothers me that (as you mention): <<In order to get a second opinion I must have a �Consultation Request Form� signed by my physician but my physician will not sign such a form.>> This really surprises me since I thought that in the interest of healing, physicians were all for second opinions! They also say that << Their decision is to remove my tongue and I should accept that during surgery they will most likely remove my voice box also.>> The �most likely� part seems kind of �iffy� to me in that it could also happen that they could leave the voice box.

In an earlier post re Dr. Wadsworth, you mention: <<He said I am going to lose my tongue but if he finds any can be saved he will save it.>> So maybe a part could be saved?

Also, I can't help but feel that there has to be a way to get a second opinion. I'm sure others know more about this than I do. I sure am hoping for better and more hopeful days ahead for you!

The reasons most (virtually all) institutions do not give second opinions without directly seeing the patient is that they can't make a decision on someone else's observations that leaves them liability free, and which they are sure have covered all the bases to give them the total picture. I had a work up at a good institution. I opted not to get treated there but to go to MD Anderson based on a profession recommendation (I had been lecturing to oral surgery groups for some time and had lots of contacts).

So MDACC tells me that I need 4 days for my consultation. Say what? They insisted on redoing my scans, blood work, physical exams etc. before they would put me in front of their tumor board. This is a partly good business from a legal standpoint, and there are just big differences in the way things are done even at the biggest hospitals, regardless of the first institutions reputation, the second institution only trusts their own data. It is the norm.

Given the way these guys are trying to PREVENT you from getting a second opinion, I would be out of there immediately looking for one. OCF can refer you to people if you like, and by law, your current institution has to provide your records to the next place. They don't have a choice.

Nocam,
Read what Brian has to say several times--lots of good information. I've just got to say I don't care what my situation is I am just stubborn enough that if I ran up against a doctor who indicated he/she would not sign a request for a second consultation (I've never heard of that form) I would say, "Oh, yeah . . ," and start walking out the door. "Sorry buddy, it's my life, my body, not yours."

I'm not saying Emory is all bad, but lots of folks from Atlanta are in the ENT waiting room at MD Anderson, I can tell you that for certain.

Anne

Nocam,
Emory University has an Ombudsman's office. You can look it up on the web. I would call them and let them know one of their doctors is refusing to let you get your records to another facility for a second opinion. Time is of the essence here and letting this doctor gum up the works is not good for you.

I went to most of the places that have been mentioned here. I found while I was talking with the various doctors about other places I'de been to that each place has it's own prefered approach. They would say "oh yae they are big in chemo" or "those guys prefer surgery". The reason I mentioned Pitt is that the trial they are doing now is concentrated on re-radiation.

Sloan is well known for their surgery and may offer you a less invasive option. MDA (at least in my case)likes to hit it hard with chemo first to reduce the size and do surgery second. They have the robotic surgery there also.

The point is that you may find an option from a top flight place that is more acceptable to you.

DO NOT let this doctor define the rest of your life.

Nocam, everyone is giving you great advice.
My concern is the length of time all this is taking.
You had a clear PET in January. 6 months later in June it is back.
It is now August.
We have been through this surgery you are being offered and I will always be here to help you should this be the route you take.
But please, get this sorted soonest. ASAP.
Tammy

Cheryld

As of today I am going to start trying to do exactly what you and others have suggested. I am going to call Sloan to see if they can work me in ASAP. Late yesterday I was contacted by Emory and a surgery date was set for August 27 th. I hope I have enough time to do what I think is necessary. At the same time I am afraid to much time has already slipped by. I do not understand Emory�s lack of willingness to help me with a second opinion either but maybe I am looking at things incorrectly. I am sure that Emory and the Doctors there are some of the best and I am not someone to find fault with either. With my limited knowledge of things I will try to explain how I see things have gone together a little better.

My insurance is Medicare and extended coverage (Senior Advantage) is through Kaiser Permanente (KP) which also provides a lot of medical services. Insurance is also a major concern. I am not sure how much coverage I will have as I go from place to place. My ENT doctor with KP arranged for me to have chemo through KP and radiation through Peidmont Hosp. At the time of reoccurrence KP was going to have my ENT perform the tongue surgery through Nothside Hosp. It must be that KP has a relationship with Northside and they have KP Doctors doing the work at the facilities of others. For various reasons (one being a heart condition) KP referred me to Emory. At Emory Dr. Wadswoth (I guess I could refer to him as my lead Dr.) was assigned to my case. For the most part, except for meeting with me, Emory did not do anything special other than run a PET?CAT scan on me. They have given me a copy of that scan. My case, along with their PET/CAT scans as well a lot of other info including KP PET, MRI scans etc., was presented before a board of specialist who determine the best route toward cure. In my case the removal of the tongue etc. was decided upon. When I met with Dr. Wadswoth he explained everything to me and I questioned the need to remove the entire tongue. Perhaps in consideration of my fear it was my understanding that he would save some of the tongue if he could but it could not be expected and I understand that. We never discussed 1/3, �, 2/3 it was the entire tongue and I signed off on the removal of the entire tongue. Loss of the entire tongue and all the ramifications is hard to accept and naturally depressing. I felt the least I could do for myself was to seek out a second opinion.

At John Hopkins I found the opportunity to get a second opinion without visiting their facility. Below is a like to the site showing the checklist of requirements.

http://www.hopkinsmedicine.org/seco...olaryngology/request_second_opinion.html

One item under �Talk to your Physician� is called �Consultation Request Form�.

http://www.hopkinsmedicine.org/seco...ology/pdfs/Consultation_Request_form.pdf

The way the form reads, as explained to me by the Doctors assistant, is that the Doctor is asking for a second opinion which he does not need. I never thought of it that way. I thought of it as me seeking the second opinion-not the Doctor-for he surely feels confident with the decision of the board.. Emory�s position, makes sense, it was explained does not need a second opinion. As I understand it Emory has a board of specialist who are perfectly capable of making a decision regarding the best treatment possible. I interpret that to mean the opinions of anyone else is meaningless and that MAY be true. With respect toward everyone at Emory I understand their position but my failure to get a second opinion seems negligent on my part. If they would have told me to go back to my ENT Doctor at KP and maybe he would request a second opinion, without my asking I would have done as told.

Yesterday I sent an email to my ENT Doctor at KP. As the folks at Emory said after I ask, maybe he will authorize a second opinion. Maybe it was my responsibility to ask and if it was I am glad I finally did so. If my ENT Doctor at KP does not sign the form I am not sure what I should do next. Today I am suppose to be able to pick up all my records from KP. With those records and the disk from Emory I will prepare to send everything to Sloan, John Hopkins and Univ. of Pittsburg.

Of major importance to me is for everyone to know that I do not think the folks at Emory have done anything wrong. I just don�t understand why or how some things are done.

They did not determine my cancer HPV + status.

ChristineB

In the part above addressed to Cheryld I have tried to include some of the things noted by others. I am like you, I thought that a second opinion was encouraged and I find it admirable for Doctors to suggest them if for no other reason than the patients piece of mind. However, in my case other attitudes must come into play. As you have suggested, I am inquiring about therapy and of all sorts. I do not have a large family but the few I have are very caring. I have no friends nor do I know of others who have cancer.

Thank you ever so much for the information regarding free air travel and accommodations. Such assistance is desperately needed and I will definitely follow through in hopes of assistance. I wonder if there are any free accommodations around Sloan Kettering.

Susan2992

If everything falls into place I will be getting an opinion from Sloan, John Hopkins and Univ. of Pittsburg. As you suggested, I am getting a copy of all my records for my personal files.

Anne-Marie

It is all very �iffy� and for the most part I guess that is to be expected in the field of medicine. I suppose one way to prepare a patient is to let them expect the worst. Anything less than the worst is a gift. The most I can hope for is to have some tongue and my voice box but I expect the worst.

Brian Hill

Thanks for helping me to understand some things much better. The second opinion part is a hurdle I hope to get over but getting a copy of my records is not a problem.

AnneO

I guess it is just an Emory policy situation and perhaps it only applies to someone like me in certain situations. It is interesting what you say about a lot of Atlanta folks being at MD Anderson. There must be some very meaningful reasons for someone to deal with going so far when there is a noted local hospital. I saw something recently, if I recall correctly, that MD Anderson is in the top 5. and Emory is in the top 65. Makes me think of Michael Douglas in CA, where there must be some excellent Doctors and institutions, going to Sloan in NY. Economics surely affects a vast majority. Are you in Texas and have you gone to MD Anderson?

Kelly 211

As I mentioned I was sending an email to Dr, Ferris at Univ. of Pittsburg. I sent the email and was pleasantly surprised to receive an email reply from him within 15 minutes. I also watched a video he did for U of P. He is a very impressive guy who must have been a pleasure to work with. How long did it take you to get an appointment at Sloan, how long were you there and where did you stay?

tamvonk

I to am very concerned about the time slipping away and fearful that things are surely getting worse. One delay I am sure is due to Emory relocating a part of the cancer facility to a new location nearer to downtown Atlanta. Good for them but perhaps tragic for me but I hope not.. Kris has been through it all and I hope he is doing well. I will soon read all of your post and I am sure I will benefit greatly from them.

THANKS to everyone for responding. Everything mentioned has been very very helpful

If someone gives me top 5 or top 65 - I know who id choose. top 5 will likely have innovative techniques, and the best of the best - Give yourself the best shot at survival, and least damaging option. On another note there is someone here - misskate who's had her entire tongue removed she's doing extremely well. Great on getting the second opinion. hugs!

Nocam,

Sloan was a little funky in the way they approach a second opinion. They requested that I fax my paperwork and then bring any film in with me.

The doctor I wanted to see was at a convention when I first called but was soon to be back in the office which was fine for me as I just put them last on the list of places I was going to see.

Lastly, My sister lives about 1/2 mile from Sloan in NYC so I just stayd with her. Actually put an extra day in so my wife and I could see a few sites while in town.

By the way, The doctor I saw at Sloan was Jatin Shaw, one of the best base of scull cancer surgions in the country

Kelly,

Once again, thanks for the info. Everything you mention is very helpful to me now as I try to finalize and make good decision. It seems you do excellant research and find things that are truly in your best interest. For your special situation you go to MD and Sloan (no help) then somehow find U of Pitt who can help. Do you tell them all you are coming there just for a second opinion. I assume if MD or Sloan would have offered some positive prospects you would have had treatment with one of them.

I spent most of today getting CD's ready to send out. Planned to send to U of Pitt by noon but could not make it. I tried to call Sloan on Friday but never got through. Do most have you send things then meet? All my text stuff,+-500 pages I am told, is on CD.It sounds like Sloan wanted the text first and I wonder if they just wanted paper. Between MD and Sloan which did you feel best about. I guess neither since neither offered a possible solution. In my case I am hoping to find a place that will tell me that they do not have to take out my tongue and voice box. If MD, Sloan and U of Pitt can not say that then I guess all is lost for I would not know where else to look. Also, I cannot go to MD and Sloan so I am trying to pick one and wish I could figure out which might be best for my case.

Did you just fly in and out of MD on the same day? If not where did you stay.

Thanks for any info provided. It is encouraging to see that you have found a way to move forward in a positive way after being told it was not possible by a few of the best.