Husband diagnosed with tonsil cancer: looking for tips and support

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Hello everyone,
I’m in the waiting room for my husband has the TORS surgery today at 2pm and still in recovery room.

Dr. told me tonsil has negative margins but she has taken a lot of lymph’s nodes and suspected extra-nodal extension. She thinks cancer is aggressive but we need to wait for the pathology results.

I’m surprised and do not know how my husband will take this. He went into surgery for he was told tumor was encapsulated in the lymph nodes and he may not have to do chemotherapy but only radiation therapy. Now, he has to do both chemo and radiation for the doctor suspected metastasis to other parts.

PET scan was done in June. Did the cancer grow fast?

Based on what I read, having extra nodal extension has bad prognosis.

I’m very emotional now and any comments and suggestions is appreciated.

Thanks to all.

I am sorry this outcome has not gone as planned or expected. It always amazes me how our lives come to a screeching halt when we are faced with the treatment and cure for cancers.
At this point you can only wait to find out the next step or steps and then head down that road. No doubt your husband feels like he can take no more disappointments. Courage. I am always watching for your posts as I am sure others are as well.
Will treatment begin in the next few days or will he need some time to heal from the surgery?

Dr. said it needs time to heal. He has not eaten yet, only sips of water. He cannot swallow. The swallow pathologist will be coming back tomorrow. Thanks for your encouragement.

@joy345, I wanted to check in on you and your husband. When will he start further treatment. How is the swallowing going? How are YOU doing?

Thanks for asking. He has post surgery issues Dysphagia, cannot sleep due to having no cpap, hearing/jaw issues. Today, he is eating slowing mostly shaved ice/ensure/soups. Husband was given pain medications and lidocaine. This week, surgeon informed us of pathology official results. It's different from what we were told before. Both tonsil and lymph nodes have clear margins but 5 lymph nodes were malignant (out of the 61 that were removed) with a "small" percentage of extra-nodal extension (ENE). Surgeon thinks my husband need radiation only and chemo is optional but ENE is a concern and she believes radiation is enough to get rid of this. Appointment with the chemo specialist is next week. Not sure if anybody have experience with ENE and can share comments.
Treatment for radiation will be sometime in September after 6 weeks post surgery. My husband is still weak but getting better.
Its not easy to be a caregiver but God is good all the time. Thanks for everyone in this group for caring and compassionate sharing of experiences that encourages and uplift. Everyone here is an "unsung hero" for someone. Thanks again.

I had TORS surgery April 15. Back of tongue tumor removed and All lymph nodes removed on right side. Surgeon also said radiation only so that is the course I took with no Chemo. I finished 30 rounds of radiation 30 days ago. I too struggled to eat/drink . If he can do any mouth, tongue, swallowing, neck exercises it will help a bunch with his progress moving forward on eating and swallowing as Radiation will make it much harder to swallow. This is a battle and He must fight. And yes God is good all the time.

While I did not have oral surgery as my SCC originated in my ear, I had many clear lymph nodes removed as well as a section of my facial nerve that was involved. Surgical margins were not clear and my Mayo oncologist suggested further treatment. I did have 35 radiation treatments with concomitant targeted therapy chemo starting 4 weeks after surgery. It is tough dealing with the pain and decreased appetite caused by this treatment. There are many things available to help to get him through.....Magic Mouthwash, oral lidocaine gel, etc that your radiation oncologist can provide. I did not have a feeding tube, but if one is recommended for him, I would strongly consider it. This is such a battle, but there is light at the end of the tunnel. I am over 11 years from the first surgery, have metastatic SCC and have had sections of lung removed twice, a subQ met removed, and most recently 2 years on an immunotherapy which wiped out the kidney and lymph node metastases. This diseases sure changes and takes over your life but there should always be a hope and plan that things will get better. Mark one small goal at a time and celebrate each one as it passes. There are new therapies being discovered and approved all the time and we just need to keep kicking the can down the road until we get to our goal. Wishing strength to you both...... caregiving may be harder than being the patient and I speak from experience. You've got this! One little step at a time.

The last month been a nightmare. My husband is 78 and has tonsil cancer. He’s always had good checkups, tests were always good and he’s never sick so this is a shock. Our life now is stressful and we’re scared. The dr said the plan is chemo and radiation to knock this out, he’s stage 2 so they say it’s treatable . I’m so worried.

Hello @cris2 and welcome to the Head and Neck group.
Understandable to be concerned, worried, upset. It’s not something anyone wants to deal with. There have been many advances in treatment particularly if it is Squamous Cell just in this short century alone. It will be uncomfortable. It will be trying at times. It will not be easy yet at the same time not impossible.
Consider a feeding tube for him as it becomes difficult to eat and he must maintain protein and calories.
Do you know what type cancer and perhaps what variant such as HPV16+? When is surgery and when do treatments begin?