Caregiver, my Husband Kris has had a total Glossectomy ( along with a total laryngectomy etc.) this was for a recurrence and was considered salvage surgery. Kris had no other treatment for this recurrence and is NED 4 1/2 years later.
Was it hard, of course it was. Kris too initially refused this surgery, but after reconsidering and listening to my pleas and cajoling , outlining all the good things In life and reasons to live for, he agreed to go ahead.
Neither of us have any regrets. Kris has a good quality of life and is by no means an invalid. He swallows all his nutrition , though it is only liquid. He does talk despite also having no voice box. He is very active and looks after our 3 acre garden by himself. We travel overseas and this has proven to be no problem.
Kris has seen our Son get married. The birth of our first Grandchild. Life is good.
If you want to ask us any questions , please do.
I know this is difficult for you and pretty soul destroying. Believe me, life is still good after a total Glossectomy.
Tammy

Tammy

Thanks for sharing your story. There is more to life than eating and drinking - but he is a true foodie, so giving that up will be pretty devastating.
We are still waiting to hear from MD Anderson about the treatment options and next steps. My instinct says that if there was an easy solution we would have heard it by now. So, I'll keep working on my husband about considering the surgery, but it is ultimately his decision.

Maybe this will help your husband to look at his situation with a different perspective. In 2009 I was diagnosed with my third round of OC in 3 years, Stage IV with survival odds being very slim. My doc told me to get my affairs in order. Being a single mother of 2 teenagers I figured the end was near and all I could do about it was to prepare my children for life without me in the time I had left. If it wasnt for Biran Hill telling me there really were some 3 time OC survivors still out there living good lives. Also, the kind members of OCF are who gave me the final push to get treated. They told me that I couldnt quit without even trying. They were 100% correct (also brutally honest)! Without Brian and all the members who bombarded me with pleas to get treated, I would not be here today. Its now over 6 years later and Im still here and Im so thankful for every single day. Yes, I have many "issues" and the surgery left me disfigured but I dont regret being treated in 2009. I do understand 100% about not wanting to have any more invasive and quality of life changing treatments/surgeries. But a good life isnt only about what someone looks like or has for dinner. I hope somehow, someway a treatment your husband is ok with will be an option for him.

Best wishes with everything!!!!

Diagnosis for a recurrence is frustrating once so many years pass. I'm sorry your husband is having to revisit the same systems and scenarios he successfully managed in 2006.

The concept of a full glossectomy would be exceptionally tough to deal with. Particularly, after he has gotten used to the limitations resulting from a hemiglossectomy.

If he decides to not have the surgery. Your husband should consider how, as the tumor grows, his current functionality will most likely be adversely impacted. He will very likely end up dealing with the same issues as he would have with the total glossectomy.

There are no easy, absolute, clear choices.

We heard from MD Anderson today. The surgeon proposed a less invasive surgery to attempt to remove the entire tumor. It does not involve a trash tube or cutting through the jaw. The only question is whether he will truly be able to remove the entire tumor: the tumor boundaries are not at all clear, and the MRI is only so accurate.
My husband is going ahead with the surgery. We are waiting to hear a date: could be as soon as this week.
Keep your fingers crossed that this surgery is successful. The next step after this is the total glossectomy. I'll check back in when I know more.
Thanks again to everyone for the support and the information.

Caregiver,

At least the surgeon is willing to take your husband's wishes into consideration and he's not a "my way or the highway" kind of doctor. Take it a step at a time, maybe the doctors will come up with something more if they can't get all of the tumor. Best wishes and I will keep the two of you in my thoughts.

Caregiver, that is great news. I do hope the surgery is soon.
Please keep us updated as to the plan and how it all goes.
Thinking of you both,
Tammy

Still waiting on a date. Husband emailed MD Anderson on Thursday and will follow up with a phone call tomorrow.
On the bright side, he feels pretty good physically. He is exercising and we have been out to dinner twice this week.

Waiting is the worst, and good you're following up with a phone call on Monday. Exercise is a good idea to be physically fit for surgery, and a faster recover, besides helping relax.

Good luck

Surgery is scheduled for Nov 22.

I have a ton of questions for the surgeon and medical team that my husband didn't ask:

Is there still a possibility of a cure or at least a long term remission?
How much will this affect his ability to eat and speak?
How long will the recovery be? They said he could fly home on Nov 25!

I will keep you all posted