My first ENT threw a monkey wrench in all my plans last night.

I would not be
confused, everyone has an opinion Im sure on how to treat this, everyone being Doctors. So all I can say is I had my treatments at KU Med in Kansas City. I was dx with BOT Stage 4 with lymph nodes both sides of neck. When I researched the best hospitals for Head and Neck KU was up there but MD Anderson was ranked #1 and many on this site had their tx there. I did not have surgery and to this day not sure why some Doctors do surgery and others do not, other than maybe the location of the tumors. My main point is between being treated at the best hospital going for H&N cancers and the fact many (like me) do not have surgery you should be fine. I had 33 RADS and 2 Cisplatin chemos and 9 Erbitux, finished treatments on August 11th. Next stop is CT scan on October 3rd to see if it worked and hopefully joint the NED club. Good luck, and prayers coming.

No Right Answer...
There is no right answer or absolute proven protocul.....

Many have had both regime's with excellent results, a few have had both without lasting success.

MD Anderson has a proven track record, I don't think you could go wrong...but again, there is nothing guaranteed.

You make your best decision, trust your MD's and back up and re-evaluate from time to time when needed.

Best,
John

CivilMatt said:

there is more then one correct choice
Hi Joe,

Here’s what happened to me; after confirming I had cancer (FNB) but before any surgery or treatments my ENT said he recommended surgery followed by rads and chemo because no matter how good a job he did removing the cancer he could not guarantee there were not some residual cancer cells left behind and if I went with surgery only I might be back in 6 months with additional cancer. On the day of my surgery (1 hour before) my ENT said if there was too much cancer or too difficult to remove he would simply close me back up and let the rads and chemo do their work first. As it turned out, the surgery was very successful, the ENT felt he got it all and I followed it up with a full round of rads and chemo.

Doctor’s go what ever way your cancer directs them, you are going to some top people in their field, and you’ve got to trust someone. Besides, there is more than one way to attack and destroy cancer and what ever path you chose will most likely be a good one.

Best,

Matt

Me.
Hi Joe,
just letting you know whatever choice you make you
have a bus load of cheerleaders in your corner.
I was "offerd" the TORS surgery for my T2/T3 0N 0M Tonsil
cancer and a neck disection two weeks after, then possibly
followed by Chemo and Rads....or I could have just 33 Rads
only. I chose the rads only and I am now 5 months out and
doing pretty darn good, taste and saliva issues but its all
coming back, I'm not on any meds whatsoever and doing
pretty much what I did 10 months ago pre-cancer. No matter
what you choose it will be the right way, have Faith and you
will be fine.

God bless
Tonsil dad,

Dan.

Vent away, Joe
My very first ENT strongly recommended surgery for me - Stage 4 base of tongue with mets to nodes on both sides of my neck... His first move was to cut out the 3.5 cm lymph node in my neck. His next move was to do an exploratory surgery to try to find the primary; found it at BOT, but also took out my tonsils...

Later, the Stanford docs expressed outrage that he had done so, referred to him as a ******* who cause me unnecessary pain and suffering, and were insistent that my issues could have been resolved completely via radiation and chemo. They perceived the surgery as being far more debilitating than chemo and radiation. And, yes, I do notice residual scarring and other effects from being cut open - these actually rival the residual effects of the radiation.

The choice is yours. I believe I would have opted for just the radiation and chemo. Healing from the surgery was the most painful part of the process for me.

Deb

D Lewis said:

Vent away, Joe
My very first ENT strongly recommended surgery for me - Stage 4 base of tongue with mets to nodes on both sides of my neck... His first move was to cut out the 3.5 cm lymph node in my neck. His next move was to do an exploratory surgery to try to find the primary; found it at BOT, but also took out my tonsils...

Later, the Stanford docs expressed outrage that he had done so, referred to him as a ******* who cause me unnecessary pain and suffering, and were insistent that my issues could have been resolved completely via radiation and chemo. They perceived the surgery as being far more debilitating than chemo and radiation. And, yes, I do notice residual scarring and other effects from being cut open - these actually rival the residual effects of the radiation.

The choice is yours. I believe I would have opted for just the radiation and chemo. Healing from the surgery was the most painful part of the process for me.

Deb

Trust your instincts
Joe,

You have done the research and found your way to MD Anderson one of the top in the field. Each person, each doctor and each facility has their own opinions about treatment. At the end of the day, it is up to you. My husband's doctors never felt that surgery was the way to go for him and he is one year post treatment.

You and your family will be going through this process, so trust your instincts. And know that everyone here supports whatever decision you make.

Sending prayers your way. Barbara

Surgery was out for me, simply because of where it's at.....
behind the nose. However....my gut feeling is this. MD Anderson is near the top in working with our type of cancer. They have ALL the most modern equipment...the Robotic surgery to Proton radiation in their facility, and the know how to use them all. There is also a TEAM of Dr.'s looking at your case, not just one Dr. calling all the shots. If this were my situation, I'd put my faith in the whole team...and not let one lingering "past" Dr.'s opinion hold me back. He was stupid to say that to you...we are laymen, we're not Dr.'s....so it was rude throwing his opinion out there.

p

PS...there are two Dr.'s here in my little town who have had HNC...BOTH chose MD Anderson to care for them...that says a lot to me.

Major Decision
My first visit to my Surgeon, was also attended by His 8 person team....they spoke to me about each treatment, surgery with possible chemo and radiation and radiation and chemo...no hint of what each of them would prefer was made, and my wonderful Dr. said the decision is yours, I will treat you to the best of my ability, no matter. He then went on to explain the pros and cons of each treatment, the risks and most of the healing process...my husband and I came home and discussed what was best for me...I decided to go with the di vinci robotic surgery and have not regretted my decision...the nodes removed came back NED, so no chemo or radiation was necessary. When I told my Dr, I could tell from the looks on all their faces, I had chosen what they preferred and what they really thought was the best option for me...I had and have so much confidence and trust in my Dr and the team, they were all so young and so eager to do everything possible to help me recover.and they were so funny...I had visits from them every morning and evening, my speech therapists( part of team ) started working with me the day after my surgery, I told her ( in my whispery, wavering voice, I can't do it and she always said yes you can and you will...my voice is back so strong, everyone is amazed.
Anyway, enough about me, I could sing my teams praises all day, I hope you'll find the right decision for you, get it done, and never look back with regret...life is for living!

hope you have your plan
Joe
For what it is worth my radiation oncolgist mentioned the 5 year mortality rate is better or at least not worse for those who don't have surgery just chemo and radiation. Seemed to make sense when you factor in surgery and complications.
I hope you find peace in your decision then go after it.
Jim

Opinions abound
I was treated at MD Anderson and found the staff there to be completely open to my questions and concern. I was Stage 3 Hypopharyngeal SCC, unknown primary. The ENT at MDA was part of the board to review my case and did not recommend surgery. She also weighed in on the induction chemo regime that I took. They were great at discussing everything with me every step of the way. I am very impressed with the team and their genuine concern for my health and quality of life. They also listened to my concerns and desires and provided me with the options of treatment with the % of success rate associated with each. Can't go wrong with them in my opinion.

Good luck,
Loyd