Nocam,

Seeing you're in Georgia did you try to get in touch with Moffitt Cancer Center in Tampa. A few of us go there we've all had great treatment. I think it's at the top of the list for Cancer Centers.

Just a thought.

Take care,
Connie

Hello Connie,

Thanks for mentioning Moffitt and I will try to find out more about them. The only cancer hospital rating list I have seen is the following and Moffitt is toward the top but not as high as Sloan.

http://health.usnews.com/best-hospitals/rankings/cancer?page=3

I wonder if any of these hospitals specialize in base of tongue cancer or clinical trials for such.

I see you are from NY. Did you consider Sloan in NY? I see many people from one place go to other places and I wonder why.

Hello Connie,

Thanks for mentioning Moffitt and I will try to find out more about them. The only cancer hospital rating list I have seen is the following and Moffitt is toward the top but not as high as Sloan.

http://health.usnews.com/best-hospitals/rankings/cancer?page=3

I wonder if any of these hospitals specialize in base of tongue cancer or clinical trials for such.

I see you are from NY. Did you consider Sloan in NY? I see many people from one place go to other places and I wonder why.

Nocam,
I feel that none of us can or should pick your hospital for you. Lots of the ones mentioned are very good. Could you get different ideas at different hospitals? Of course. I think you are going to have to decide yourself, unless something Kelly tells you will make a difference.

I did go to MD Anderson, & I live 11 hours away in Kansas. But we could drive it in a day, so that was one reason why I went there. I lived there in an apartment for treatment. A driver from the apartment complex picked me up & took me to my appointments. I had places to exercise, and I could get food fairly easily. My sisters-in-law took turns staying with me with my husband flying in on weekends. In retrospect, it was probably easier on me in some ways being there than being at home & having to drive at least an hour each way every day.

One reason these hospitals are recommended is the volume of patients they see who have oral cancer of some form.

Good luck with your decision.
Anne

Nocam,

I live in FL I was from NY. Long story on how I got to Moffitt it's on the forums some where. I didn't have a clue about Cancer Centers.

I drive just over 2 hours one way for my appointments. I would drive forever to go to a Cancer Center. Moffitt is one of the best, I figured you living in GA. the drive might not be that far for you that's why I suggested it. Also, I was told if I needed Chemo and Radiation they would work with the facility in my area so I wouldn't need to travel back and forth or stay in Tampa.

Check out their website. I think the majority of us have been to one of the best Cancer Centers.

I know DavidCPA goes to Moffitt he's on the forums.

Hope all goes well.

Connie

I wish so much that I would have found this site the day I discovered I had cancer and before treatment (before cancer would have been better) for it has given me info, understanding and so much help etc. as I move forward.

AnneO

I think it would be very difficult for anyone to tell me what hospital to go to. However, if someone made such a suggestion I would welcome their good intent and try to learn more for they may have told me about something or a place I should consider. All thoughts given are extremely valuable, as I move forward, for they enlighten me to considerations I may not of thought of otherwise. I believe I have already made some erroneous decisions but asking questions here will hopefully help me to make better decisions (it ain't easy) in the future. My major objective at the moment is to avoid the total lose of my tongue and voice box. One thing I know is that you can get differant suggestions from differant Doctors (learned that here) but I am hoping for consistant suggestions from various reliable sources that such sever surgery is not necessary. If necessary I must accept it but until then I want to know of any other options for that which is taken away can never be replaced.


One thing you mentioned that I can really relate to is your elimination of a one hour one way trip each day for treatment. My trip was +- 1 1/2 hours one way each day. The nausea, and ugly consequesces, I experienced in latter weeks from bouncing around in a car for that time made me want to give up. The distance was not so great but the stop and go trafiic made for a very long unbearable trip.

ConnieFL

I really appreciated your introducing me to Moffitt. One thing you mentioned that is interesting was their willigness to work with you locally so you did not have to stay in Tampa for treatments. Their reputation and ability to direct treatment from afar probably produced a better outcome and was a great convenience to you. I did not realize a cancer center would operate this way but with technology being what it is today it seems natural.

Nocam,

If I needed Rad/Chemo Moffitt would have worked locally, as it turned out I didn't need it.

My yearly checkup is Sept. 20th. One thing I did do this week and I never did before was call Moffitt asking for a CT Scan. I asked my Surgeon's right hand nurse if it was possible to schedule a CT/Scan with and without contrast on my next visit. I want the Scan from my waist to the top of my head. Within 24 hours he got back to me, he saw no problem scheduling it before my appointment and I would receive the outcome before driving back to Fort Myers. Am I paranoid, you betcha.

I love the place, my surgeon, his nurse and all the staff, they are so kind and considerate.

Yes, there is a lot of info on the forums remember one thing you are your own best advocate. You know what's best for you and you know your body better than anyone else.

I hope all goes well with you.

Take care,
Connie

I was hoping to hear something yesterday but I just received an email (text shown below) from my ENT Doctor who I have always thought very highly of. His reason for not signing the form seems much differant than the reason from Emory. Emory's decision was perhaps based more upon principal. Link to the form

�Consultation Request Form�.

http://www.hopkinsmedicine.org/second_op...equest_form.pdf

Anyone have any thoughts about this?

" I read the "Consultation Request Form" from John Hopkins Medicine. This would have me sign a document requesting the medical second opinion. In fact, this is an opinion you are requesting. I am not convinced that obtaining an opinion without face to face patient contact is a good idea. It seems to me that John Hopkins recognizes the limitations of such a consultation and desires to have a "requesting" physician share this burden. I don't agree with this approach. I hope you understand my point of view. You are faced with a difficult and life threatening medical problem and I don't believe this approach can satisfy the needs of a true consultative medical opinion. Please feel free to discuss with me further."

Nocam

My thoughts are that your doctor seems to think that he is an attorney and is twisting the facts and words. Of course only the patient requests the second opinion, and the "requesting" physician is bearing only the burden of a gatekeeper, certifying that your medical records are correct and that his planned treatment is not 100% guaranteed. I've seen this type of pseudo legalistic analysis often, using in tax protestors' briefs.

Ask the chief medical officer of the hospital where this guy has privileges if he would sign it. Also involve the Patient Advocate. Sorry to hear about this.
Charm

PS: I've been a lawyer for 40 years now and started off in medical malpractice so I've seen this terrible behavior before.

Link to the Consultation Request Form shown" above did not work. This link should work.

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

or

http://www.hopkinsmedicine.org/second_opinion/head_neck_surgery_otolaryngology/download_forms.html

Charm

The ENT Doctor is the head of the ENT dept at a Kaiser Permanente (KP) facility. I think KP partners with various hospitals to use the hospitals facilities to perform surgeries etc.