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