New here. My wife (mid 50s) was diagnosed in May 2025 with Tongue/base of tongue SCC, which was staged at IVA with extension to nearby lymph nodes which after surgery was determined to include extra-nodal extension. She had a hemiglossectomy (about 60% removed) with free flap reconstruction in September 2025. Began radiation/chemo in mid-October and just finished the cycle. She’s also receiving immunotherapy

She had no known risk factors for this. Never smoked, careful about what she ate and drank, always exploring supplements she hoped would keep her healthy. So, we’ve both been stunned by her diagnosis.

Heart-broken to see the surgical devastation of her body and the suffering she’s enduring from the radiation. Scared that there’s a real chance I’m going to lose her before she’s even had time to grow old.

I’m so sorry to hear what you’re going through. I’m sorry no one else has replied to you as it is a lonely time.
My husband 54 was diagnosed with stage 4 N2b in February and underwent a mandibulectomy. No smoking, drinking and a very fit man.
Unfortunately he denied all other treatment after surgery and got himself removed from the hospital check up list so I understand how difficult this is, the not knowing, the waiting, the hurt and the grief.
I don’t have any magic answers I’m sorry, but hang on to the special moments.
It is difficult to be on the other side seeing the changes that occur to both our spouses and to our own lives, life just isn’t the same and it is an adjustment I’m still not used to.
I pray that your wife will make it. Just remember to take care of yourself too

Do you know if its HPV +?

Hello Jay (gelibby2003),

Sorry to hear of your wife's diagnosis with advanced base of tongue OSCC.

I am hoping you both begin to notice gradual improvement.

I am so sorry to hear you have been so devastated to witness your wife's suffering and that she is experiencing this.

Nels and other forum staff and members who have been through similar treatment regimens will hopefully be on responding to give you some encouragement.

In the meantime I can only echo some of the things they have offered to encourage others with in a similar treatment recovery.

I am pretty sure Nels has said things like recovery from the radiation can be more patience testing than the surgery recovery, measured more in weeks than in days that he experienced with his surgical recovery.

So I hope and pray that these weeks have passed you guys are both able to notice some slight improvements at least, and here is hoping that they keep increasing and she heals well and increasingly quickly.

I hope you both are able to experience some moments of levity apart the trials, and can encourage her with your presence, and can try to be upbeat for her and of good cheer, if that is at all fitting to her present experience.

I hope and pray the pain medication is able to alleviate her suffering; that the pain is not non-responsive to medication, that she can learn to thrive apart from this.

I hope you can find a support network for yourself, that you have good family and friends nearby to help out, to keep you in good shape as you care for her, to try to keep your spirits up, as you try to care for her and keep her encouraged and that she begins to increasingly thrive and heal.

Sincerely,

Chris

Hi GELIBBY,

Welcome to OCF. I am so sorry to read of your wife's diagnosis and difficulties with surgery and treatment. I had similar surgery followed with radiation but no chemo about five years ago. Like your wife, I had lived a healthy lifestyle for 52 years, no smoking, social drinking, always physically active. My wife and I were stunned by this diagnosis.

But, I can tell you there is hope. Like Chris shared, surgery recovery was quicker and I could see improvement daily/weekly. Radiation recovery was more weekly/monthly to notice improvement especially with food. Some flavors took many months and years to come back. Some still elude me such as wine or alcohol. I suggest keeping a journal. It helped me clear my thoughts but was also good when I needed to see how far I had come. Sometimes, I would get down on myself, thinking I hadn't seen much improvement, I would pull out my book or watch an old video, and realize I had come farther than I thought!

Today, I have all the important parts of my life back - time with loved ones, work, speech (minor lisp), travel, most foods, surfing, jogging. And, some parts have improved. For example, my faith life has blossomed greatly. I see my purpose and sources of joy completely differently now.

This is a long recovery. It's hard to be patient but keep doing the work. Improvement will come.

Stay safe and keep the faith,
Nels