Nocam

Why not file a complaint with Kaiser Permanente - KP must have a policy on second opinions. This site has a drop down menu that lists Georgia
KP complaint site
Be Ultra polite and concise: Something like this;
My doctor (name) refuses to sign the necessary paperwork from John Hopkins for a second opinion on my cancer TX. Please help

Charm

Thanks again! Instead of complaining I am going to just make an appointment to meet with either MD Anderson or Sloan. At the moment I am leaning toward MD Anderson unless someone were to suggest Sloan to be a better choice. I have spoken to Sloan and as Kelly211 mentioned they have a unique method with records etc. They want text info (I understand I have about 500 pages) before meeting and at the meeting bring all the CD's of PETs, MRI etc. Within the hour I will speak with MD Anderson about their procedure. To my mind, maybe not right, it seems sending all before meeting would be better.

My big concern now, other than back and forths to Texas and more time lost, is insurance. I have Medicare and Kaiser (Senior Advantage) and I am not sure how this might work with MD Anderson. I recently saw someone mention KP (Senior Advantage) but I am not sure if it related to MD Anderson which I have also seen mentioned recently. I will do a search.

Here is a link from the MD Anderson site that discusses insurance.


MDA Insurance

Thanks Christine,
What I have foundout so far is that MD Anderson does not accept Meicare with Kaiser Permanente as a supplement. you give them the Medicare info and a few other things and they will tell you immediately. If the girl is right I can only go by pre-pay.

I have checked with Sloan Kettering and the Kaieser part is not a problem if I can get authorization from Kaieser. I have contacted Kaieser and the request has to go before a board who makes a yes or no decision. That can take days but I started the process.

In the meantime I guess I will go on down the list of top 10's and see what the next one says.

Real concerned about more time beinglost.

Time is of the essence push and make noise, hugs!

I was suppose to have surgery on August 27th but I put it on hold to look at some other alternatives.

I have read here and been told a bit about a portions of the tongue being removed and replaced with a flap that was skin from some other part of the body. Has anyone heard of and had experience with a portion of the tongue being removed and the remaining tongue being rotated to fill the gap created by the the gap created? It seems like a promising approach for it seems it would mean no loss of feeling, taste etc.and would maybe help reduce the possibility of asperation problems.

I have read here about folks having radiation for a second (sometimes even three times)and I wonder what the effects were like. As I understand it anything beyound a normal dose can be very detrimental. It has been suggested to me that Cyberknife would be worth considering but I wonder if a possible cell kill would be worth the risk considering other negative effects.

Hi there I've had a portion of my tongue removed.. And rebuilt they did a great job. I have a bit of a lisp when I'm tired but usually i sound pretty clear. Mind you it depends on how much they remove and location as well - if you're BOT did the Tumor spread to your tongue? I'm surprised they are suggesting this type of surgery - also yes there are quite a few here who've had. Numerous sessions of radiation , one woman I know has had it 5 times I believe. Best of luck.

CherylD

Thanks for responding. I see that you are about the same as I-T2N1. I don't think I have "MO" whatever that is. As I understand it I am BOT but I do not know if it spread beyound that point for I just assumed that was tongue. How much of your tongue was removed? Was it rebuilt with skin from another part of you body. I am sure I did not explain what I understood before very well and this may not be much better. The Doctor drew me a diagram which was easy to follow. The diagram shows a horizontal portion of the tongue being removed. In the void that remains instead of filling in with skin from the arm etc (I guess thats a flap) the tongue would be streched and rotated then stiched to the remaining tongue to fill the void. As a result the tongue would be shorter. There would be some speach deficiancy for the tongue would not reach the teeth. Is this perhaps the way your surgery was done and therefore causing the occassional lisp? This type of sergery is new to me but just about all surgery is new to me including some sort of flap approach.

Do you know who the lady is that had +-5 radiation treatments? I would like to talk to her, as well as anyone else, about their experience with treatments beyound one and Cyberknife.

Hi there M0 means metastacies - moved out of the tumor, and nodes and somewhere else, lungs, etc.

Hmmm... Maybe it moved up from the tongue base. I had 1/3 of my tongue removed and replaced, dr. Rebuilt it with the skin from my inner wrist it's the thinnest skin in the body - and adapts well as a new tongue. I have a lisp because the my old tongue has to work double time to move the other half, and I do put it through its paces. I only lisp when I'm tired or it's swollen which happens sometimes. (I have no lymph nodes on my left hand side) I don't swell all the time but every once in a while something will set it off.

The woman isn't on this site, she's actually on a Facebook group. If you friend me on Facebook I can add you to the group. She's at md Anderson.

What they described to you interns of surgery sounds okay. They may not be taking a lot... Also sme drs are now retaking the skin under the chin (if you have any hanging there) however if you have Avila hair there I would suggest the wrist. take care.

Below are links to some information that may be of interest. The first part (John�s Story-a Video) relates to the method used by Sloan Kettering for delivery of radiation as explained by Dr. Nancy Lee a Radiation Oncologist. What I found most interesting was how they watch the tumor dissolve and fine tune the treatment on a weekly basis and by the end of treatment they can see that the tumor has disappeared. If everyone does not deliver radiation this way I would question why not.

http://www.mskcc.org/cancer-care/doctor/nancy-lee

After the John�s Story video if you scroll down to Related Multimedia (heading on the left) you can see a second part. The second part is a rather lengthy progressive panel discussion where Dr. Nancy Lee, Dr Shaw (Chief of Head and Neck Services) and Dr Disa (all of Sloan Kettering) discuss a multitude of things, including Cyberknife, related to head and neck cancer. If you start with �Introduction to Head and Neck Cancer� the video clips may flow automatically from one clip into the next but automatic may not happen and you will have to manually start each clip.

Can see the same and more here:

http://www.youtube.com/user/mskcc