Meet others living with Head & Neck Cancer: Introduce yourself

My husband just got diagnosed with Oropharyngeal cancer. Feeling overwhelmed, thought this might be a good place to start to get a feel for how this journey is going to go.

Hello @michelleandrupert,
Welcome! I am sure you wish to not be a part of a group of people diagnosed with head and neck cancers. However, we are all in this together. Your husband is fortunate to have you as his advocate. My cancer was diagnosed in 2018 in the throat by the vocal cords. After 35 radiation sessions, I lost the ability to talk, eat and drink. On the bright side, after having speech therapy (exercise of throat muscles) it all came back very slowly. If it were not for the treatment, I would be long dead. I utilized a red-light wand every single day before the radiation treatments. Whether it helped, is anyone's guess. Keep laughing, loving and living. Like everything in this life, it is just a passing happening. Your faith will see you through.

My husband has squamous cell neck cancer and has just undergone a modified neck dissection. A year ago he had surgery for squamous cell lip cancer. However, even after a PET scan no primary has been determined. Radiation has been suggested going forward. I would appreciate any comments about what to expect with radiation treatments in the neck area and alternative treatments.

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Radiation treatment to the neck will usually be tolerated in the initial first few weeks. But as time goes on, the effects can and usually do cause issues which must be delt with as they arise. Initially most folks lose their taste, perhaps saliva issues, swallowing issues, and just general eating issues altogether. Personally after my experience, I would not go again without a feeding tube by the third week. As much "fun" as a feeding tube can be, there is not really an alternative to getting your nutrients.
The last two weeks of treatments seem to hit most of us the hardest and perhaps surprising is the fact that he will continue to go downhill for usually two weeks before recovery begins. The effects of radiation are cumulative. Radiation "sickness" is real to many of us during those weeks. And by recovery I mean slowly, two steps forward and one step back.
This is a battle he must commit to, a battle he must fight, and a battle most of us have won. Hard as it may be, the alternative is not forgiving.
We are here for you and your husband. You can also contact any of us privately by clicking on our names. Good luck and good fight. He may not believe it but in the long run this one event may just change his life for the better. And for you, remember, life is what happens when you're making other plans. Let him be grumpy. Let him deal with the unexplainable. It will be OK.

Hi @carebear, I’m so sorry to hear that the cancer has returned. Since you last signed in to Mayo Clinic Connect, we have opened a support group specific to thyroid cancer. Please see the discussions here:
- Thyroid Cancer Support Group https://connect.mayoclinic.org/group/thyroid-cancer/

In particular, you may wish to join this discussion:
- Thyroid cancer with distant mets at diagnosis https://connect.mayoclinic.org/discussion/thyroid-cancer-with-distant-mets-at-diagnosis/

Thank you for your informative response. I will be in touch when we know more about which treatment is recommended.

I had lymphoma in my mouth and also can not speak, eat, or drink. My challenge is I now can not open my mouth (trismus). I am interested in what sort of speech therapy you did.

@nbkod7b, not being able to open your mouth is horrible. The exercises they gave me to do did not all involve opening the mouth. Some were just using the muscle we use to swallow, trying to pretend to be swallowing about 20 times, twice per day. Another involved lifting the tongue to the roof of the mouth, then moving it from side to side (inside cheek to cheek). Then, rotating the tongue in a circular motion over and over. Many did involve opening the mouth. One thing that greatly helped with my neck and chin Lymphoma was one of those vintage, electric neck massagers. Here is a search title that shows one on eBay:
"Homedics Shogun Shiatsu Kneading 2 Way Neck Head Massager Portable SM 444."
Another suggestion would be "Red-Light Therapy." This healing light helps many conditions if utilized consistently. Did you get the lymphoma from radiation treatment? Have you tried any type of therapy for your condition, such as massage? Is this temporary? Sometimes, time will heal these things. It was over one year before my voice came back. Also, the speech therapist did not want my feeding tube removed, but it fell off me. I then became determined to rev-up the exercises, massages, red-light, and with time it did get better. Please keep me informed of any progress. Best of wishes.

Thank you so much. Your insight helps me be better prepared.