Hello, I am writing because my precious hubby (age 52) has stage 4 SCC of the right tonsil, and I feel overwhelmed, a bit lost, and frightened. I am hoping to find support and become more educated on how to best help him as goes through this difficult time.

He had a radical (well almost radical) neck dissection and tonsillectomy on 1/8/10, and is now at home recovering. The plan is to have one more post-op appointment in 3 weeks, and then he will begin chemo and radiation.

What I struggle with most right now is second guessing our (his) decision to get the neck dissection. We talked to two different doctors; one was for it, and one against. We ended up accepting the advice of the chief of the Otolaryngology Dept. at the University of Washington. After seeing what the surgery did to his poor neck tho, I can't help but wonder if it was the right choice.

Laurie,

You talked to Dr. Neil Futran, he's one of the best in the field and was my surgeon. I also had stage 4 oral cancer, did chemo and radiation and then had Dr. Futran and team do my mandiblectomy w/fibular free flap and neck dissection.

The UWMC is rated 12th in the nation in Otolaryngology, 6th in cancer care. These professionals are literally world class. I think you made the right choice by listening to Dr. Futran...that man and his team are part of the reason I'm alive today.

The key thing is, your husband is alive and you can rest assured that you've done everything you can do to beat this thing. Underestimating this disease, especially at later stages will kill you.

I hope I've eased your mind...there is life after a ND and it is still good.

Eric

Hey,

Without knowing exactly ...

But this sounds very similar to my adventure.

I can say that the ND in my case was in a neck fold and healed up enough that it is actually hard to see unless I am looking hard to the side. While it looks bad now, time will improve things.

3 years since DX and coming up on the 3 year post TX mark, I can offer encouragement. Quality of life is still improving and I get shocked looks from folks if the subject comes up.

The fight isn't easy, takes some courage but it can be won. Second, third, tenth opinions ... whatever it takes to make the best choice. You are in the best of places for support and advice, I wish I had found The OCF while I was in TX.

Keep your chin up, your eyes open, hopes high and focus on the light at the end of the tunnel. A good attitude does make all the difference for both of you.

UncleVern

Laurie,

Sorr5y that you had to join our little group but you will find it was the best thing that you did.

Don't second guess any decision that's already too late to change. Won't do any good. You can always seek multiple decisions on any Tx going forward.

Did they mention HPV?

Was he a tobacco user?

Laurie

DavidCPA's advice on avoiding second guessing will help you avoid a lot of needless worrying and heartache - and unfortunately you real reasons to worry without beating yourself up over "should've, could've" . The issue of neck dissection is a hot one, since the majority of posters have reported that the lymph nodes taken out were not cancerous. While this is good news that it had not spread, it is also bad news in that it shows that the neck dissection was unnecessary. I may have missed you posting on what the results were, but I do find it amazing that so many people here seem so happy to have an unnecessary surgery done. So I find your concern a refreshing dose of reality.
The best remedy for worry is to take remedial ACTION. I have a suggestion that may require you to PUSH the doctors, but you will be glad you did. Insist on a TSH level blood test for his thyroid so you have a pre-TX baseline on what is normal for your husband. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I hope you never need the results of this pre TX test, but get one if your husband does not have a TSH level.
Charm

Thank you, thank you Eric, David, Uncle Vern, and Charm for your replies. I can't tell you how much it helps to know that you are all out there, ready to share your encouragement, wisdom, and experience. I am already feeling so blessed to have discovered this site.

To give you a little more information on our situation, my husband Roy is a non-smoker and non-drinker. The results of his surgery were that his lymphnode involvement was "extensive," and they were also very adherent to the surrounding tissues. The doctor removed many nodes, the SCM muscle, the jugular vein, but he was able to keep all nerves intact. It all added up to be: Stage 4, T2/N2b/M0

I'm unsure (because I'm a complete novice in all of this), but these results make me think surgery was a good call. Would you agree? Just wondering. I know I need to let this go though and move on to how to best help him through the next phase.

I want to thank you all again for welcoming me here. I look forward to learning more about your own journeys.

With a heart full of gratitude,

Laurie

Hi there- The neck disection does leave a lot of scarring and neck stiffness/pain. 3 years out I am MUCH better but I am still working with physical therapists to get more range of motion and get rid of scar tissue. When Roy heals have him work with a physical therapist to break up the scar tissue from the surgery and radiation and strengthen the muscles and regain range of motion. It will make a world of difference.

Yes - the neck dissection seems like it was neccesary to remove the nodes and to identify where the cancer was spreading. I know it is hard when you get conflicting opinions!

Wishing Roy a full recovery from this cancer and the harsh treatments.

KATE

Laurie,

Yes you made the right call on the surgery. As involved as it appears to have been in the neck, surgery was your best option.

Most here are conflicted in chosing the surgery because there is no sure way to know how involved the cancer is in this area until after they do it. Many come back from surgery with clear nodes and may regret it.

I'm no doctor but I think Roy's results say surgery was a good call.

Kelly

Laurie,

Get him tested for HPV. The test results MAY help his doctors plan the rest of his Tx.

Thank you, David!

We did ask the surgeon if they would test the tonsil for HPV once it was out, and he said, "yes." When we saw him for the post-op visit, I asked about it again, and he said that those results weren't back yet. He also said the results didn't really matter at this point. ??? I didn't understand that, but then I thought perhaps he just wanted Roy to focus on healing from the surgery right now. So, I'm still a little confused on this but will push for more answers at our next visit.

Can YOU help me better understand why the HPV results do matter?

Thank you so much for your help. You just can't imagine what a difference it makes! Then again, maybe you can! Laurie