← Return to Husband diagnosed with tonsil cancer: looking for tips and support

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@joy345

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.

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Replies to "Thanks for asking. He has post surgery issues Dysphagia, cannot sleep due to having no cpap,..."

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.