Just got my offcial staging today...better than I thought at stage III, TII, NI, MO...had been told my BOT SSC had been there a "long" time...that was very scarey and i thought I wss in a lot more trouble than I am...now to decide on going with chemo/radiation or surgery, neck dissection & rad...I would love to get some feed back from those of you who have been there, done that...not asking anyone to make my choice for me...just your opinions...this site has been invaluable for me...doing very well, and hope you all are too...Katie

Hi Katie,

My husband was dx'd with BOT SSC Stage 4. It had also apparently been there a long time. His only symptom was a painless lymph node. His actual source tumor was very small and did not cause any discomfort.

Learning all of this news was very scary. I remember exactly how that felt when we found out in May. So, I imagine all that you are hearing now is slightly overwhelming.

Our ENT wanted to do a neck dissection and tongue resectioning within 2 days of diagnosis.

Our GP wanted us to get a second opinion and sent us to a hospital with a Cancer Center and a Tumor Board. The Tumor Board's recommendation for my husband was chemo/radiation. The tumor and lymph nodes responded well and surgery has been deemed unnecessary.

Although, each person is unique...that is what occurred for us.

Who gave you your options, was it an ENT or a Cancer Canter? Have you met with an MO (chemo doc) and an RO (radiation doc) and a surgeon?

I'm glad you are doing well...attitude is half the battle.

Guess I should have mention that the ENT that did the biopsy (Spartanburg, SC)sent us to Hollings Cancer Center in Charleston...I was seen by the "team", over a 2 day period, that will be working with me, even met the 2 head surgical nurses...each patient here is assigned a nurse co-ordinator...we were very impressed with the quality of care I will recieve...they have a "cancer board" that meets each Mon. & Fri. to discuss the new cases, consists of 20-30 people...drs, techs, nurses, etc...I am a very strong person, have had no depression, a couple of bouts of teariness & feeling sad...other than that, it's business as usual!...I'm much more worried about my husband, who is very sensitive...we have an agreement to talk about our feelings and not to worry about whether that upsets the other or not...we have a very strong relationship...hope your hubby continues down the road to improved health...Katie

Katie,

Are you in any discomfort currently? Did they give you pros and cons for each option?

We had to make decisions at our cancer center regarding some chemo options and clinical trials...and, I thought that was tough. But, the tumor board was in full agreement not to do surgery, so that one was out of our hands.

Can you share more with what they have told you regarding each of the choices?

I'm glad you have a strong relationship and a great support system.

Looking forward to hearing more...and, wishing you the best.

Katey: Haven't heard from you in a while...hope all is well. If you can, give us an update and let us know how it's going...
In the meantime, keeping you in our thoughts and prayers!

(Wish I could be in Charleston with you!)