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

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Now I'm really confused. My ENT that first diagnosed my SQ called last night just to check on how I'm doing. I told him about my trip to MD Anderson and their recommendation for Induction/Chemo/Rad and no surgery. He listened carefully and made some comments about that's how Anderson has been treating this condition for 10 years. So I asked the obvious question, if your dad had my condition (T3/N2c) what would you do. His answer, I would have him in the hospital right now having the robotic surgery. I asked even though I would need a total neck resection and he said anything that would get the cancer out and reduce the amount of radiation he would be in favor of.

Now this guy has no skin in the game, by which I mean he doesn't stand to win or loose anything by his recommendation and he's succeeded in getting me really confused. I was strongly in the Rad/chemo camp and now I just don't know. I have till Thursday morning to make my decision so.........

Don't really expect anything from you guys here on this, I just needed to vent it out somewhere.

Thanks for listening.

Joe

ditto1
Posts: 630
Joined: Mar 2012

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.

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

Im sorry to have to say this, but thats the scoop on this. Some dont know when to be supportive, and how. MD Anderson is a recognized authority, and yes, there are generally a number of correct ways of doing things. Sometimes doctors voice opinions without thinking that they are only muddying the water. Just make an easy decision and jump in.

best,

Pat

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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's picture
CivilMatt
Posts: 2802
Joined: May 2012

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

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

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.

Crazymom's picture
Crazymom
Posts: 280
Joined: Nov 2011

Hi, I had T2n2 I had left tonsil and 2 left nodes. I went to MD Anderson. I wanted the tonsils out, but they did not give me the choice. The tonsils are gone after the radiation...Rads literally melted them...just some scar tissue. My lymph nodes have gotten smaller and there is no sign of cancer. I am 6 months out of radiation. I asked them about the surgery and they just said the Chemo/Rads was better. There are successful people here who have had both kinds of treatment. You have to just decide which doctor you feel the best with and trust them. Good luck... Tough road ahead, but you can make it.

Ann

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

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

Barbara B
Posts: 40
Joined: Sep 2012

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

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I had stage 2-3 BOT and mets to left side of neck. My doctors said to do chemo and rads, which I did and then there may be some "clean Up" surgery for residual, if necessary. Thankfully, it was not necessary. I am 2.5 years NED and glad I trusted my dr's to do what was right for me. I'd ask why surgery can't happen after treatment if necessary.
Good luck and trust whatever you do...
Steve

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Just kidding of course. I was BOT stage III and was never offered surgery, only had rads and Erbitux (no platinum chemo drugs) ...I am now 8 months out and a PET/CT 3 mo after my last rad as well as a CT/w contrast 6 mo after my last rad show me now as NED. I get a scope every month (along with the lovely finger down my throat) ....
..

...and I kept thinking I missed out on some good treatment NOT getting the surgery....

You all should have said something sooner (LOL) ..I think Matt (civilmat) will like this thread as well ..

Best,

Tim

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

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.

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

I can only say from a personal point of view, my surgery, even though 19 hours, was much easier on me than the rads/chemo afterwards.

Grandmax4's picture
Grandmax4
Posts: 576
Joined: Dec 2011

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!

Grandmax4's picture
Grandmax4
Posts: 576
Joined: Dec 2011

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!

Hard12Find
Posts: 197
Joined: Sep 2012

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

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

When dad was first told about the cancer, his ENT (who was horrible) told us there was no way he could beat this without surgery. Dad who was 71 at the time did not want to have a major surgery to remove most of his tongue. He went with what his oncologist said. ENT seem to often have a different idea. But in the end it is your decision and what you feel is the right choice. Please come to vent any time.

Kathy

shoeloy
Posts: 70
Joined: May 2011

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

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Joe, I was BOT stage 4. Surgery was presented to me as the best choice to get rid of the cancer, although it was not recommended in my particular case because of the size/location of the tumor and severity of the surgical procedure that would be needed. Robotic was not an option in my case. Therefore we went with the chemo/rads option. 2+ years on and all is well. Best of luck with your decision. Cheers

Jimbo

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Induction followed by Chemo/Rads. Take a look at my new blog should you be so inclined.

jcortney.blogspot.com

Joe

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

That's the route my Tx took me....

Nine weeks induction (Cisplatin, Taxotere, and 5FU) in three week cycles. That followed with seven weeks of concurrent weekly Carboplatin, and 35 daily rads.

I'm sure snyone would opt to have as little rads as possible since they are the portion of treatment that keeps on giveing.

Unfortunately, nobody seems to have a definitive proven protocul other than the standard 35 days.

Best,
John

TomoFan
Posts: 4
Joined: Sep 2012

Joe,
4 years ago my understanding was there were only 50 TomoTherapy machines in the world and MD Anderson in Houston didn't have one yet. Must be having success because they have one today and 4 annual Pet Scans later no reoccurrence for me.(Stage IV)
Eat nutrtiously, exercise and walk daily, pray and stay positive, will make a difference.
FYI-Tried going to your blog jcortney.blogspot.com and unable to locate.

You will be in my prayers.
TomoFan

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