Meet others living with Head & Neck Cancer: Introduce yourself

I had HPV cancer of the left tonsil and some lymph nodes on that side of my face as well. They operated and removed the tumor and all the lymph nodes. Now a little more than three months later I have lymphedema and it pools around the scar tissue. This closes off my throat a great deal and makes it difficult to breathe and swallow. I was doing so well with the swallowing too! The pain in my tongue still made eating a bit difficult though. Medicare does not pay for the vibrating vest, and I am not very good at the self-massage. Has anyone come up with some more affordable creative solutions?

Hello @nandera and welcome to the head and neck group. This recovery shouldn't be so difficult but sometimes it is. And it takes time. My thoughts are to look for an anti-inflammatory but perhaps your oncologist should recommend something. Just because the treatments are done doesn't mean the doctors are done with you.
I had set-backs for many months however eventually all worked out the best it could. My eating took years to stabilize, years.
We will see if others have some ideas. In the meantime self-message before you climb out of bed and again in the evening if that what it takes. The red-light wands seem to help many as well and they don't cost much.

Hi everyone. I'm writing today on behalf of my 93 year old Mom who has been diagnosed with melanoma on the scalp. At this point only the biopsy has been done and I have been having the hardest time contacting people. She was set up with a plastic surgeon and they said that they can't do anything until the whole tumor on her scalp is removed and referred me to the Moh's surgery group affiliated with the dermatologists who did the biopsy. They have no appointments for her though someone in the Moh's group is trying to get more information for me. She mentioned that it might be too large a spot for Moh's but she'd find out and get back to me. That was a couple of hours ago. I'm writing here because I'm frightened for my Mom and frustrated with her health care. She is in Massachusetts by the way. Anyhow, I couldn't think of a better place to ask for guidance than here.

Hi @lauralb welcome to the Connect Head and Neck group. It seems that your mom is in that limbo of treatment area which happens all too often in some areas of the country sadly. My suggestion would be to hound everyone involved until someone takes action or gives you a solid answer as to why no one is taking care of her.
I have little experience with dermatology other than to realize it has been specialized primarily for acne and cosmetics for the most part. But when it comes to confirmed cancer, the oncologist should be getting involved and should take over driving the bus.
You might consider going outside your local area, a university hospital perhaps if you’re not getting any action.
Let’s see if someone else pops in here with some experience in MOHS on the scalp and the route forward. In the meantime make some noise and have courage on this path.

Thank you for your thoughts. I've been hounding everyone and finally determined that the mohs oncologists affiliated with the dermatology entity is in the network, that she is pretty much approved for a consultation (she hasn't even had that...) and all they have to do is make an appointment for a consultation. But it seems they prefer to just do the biopsy, tell her she has melanoma and then not answer phone calls or do anything. It took another hour and twenty minutes on the phone this morning just to determine that setting the appointment is all that has to be done. I have heard nothing. So today, I will have to tell my mom that we are still in limbo. She's a strong woman and can handle most any news - but she has a real hard time being left in the dark. So do I for that matter. I'll be calling the mohs folks again now...

Hi Laura, any update? Has your mom been scheduled for an appointment in the meantime? How is she doing?

I was diagnosed and treated for vocal cord carcinoma in situ of the left true vocal cird. Treatment was 28 treatments of radiation . 6 weeks after treatment I was told it was gone but it appears that my hoarseness still exist when I have a very vocal day. Anyone with tge same experuence?

Hi @gareygraham and welcome to the head and neck cancer group. Although I did not have cancer that far down in the throat, nevertheless my voice was affected by the radiation so much so that I sought out help from a speech and hearing pathologist. Camera down the throat and all those fun things revealed little. I resolved to sip water as I spoke and face the fact I no longer possessed the "stage" voice I once had. I often worked in noise environments instructing others. Had to find a different way. As with you, the voice changed and became hoarse as the day went on.
How long ago did you finish up radiation treatments?

I finished radiation therapy on 4/22/24

@ lauralb, I understand the frustration of waiting for response from a physician's office. You are smart to keep after them. I recently took my 97 year old aunt for a Moh's procedure for a Squamous Cell Carcinoma on top of her head. She had a biopsy in February and was offered surgery or a topical treatment. She chose the one and done surgery. They scheduled her in late May and it wasn't really a typical Moh's as he initially took a full thickness of scalp/skin and then looked microscopically. It was clear so that left her with a 2.5x 3 cm open lesion, since you cannot close a big round lesion like that without a graft. Healing by second intention with it granulating in and shrinking has been a long process as they explained, but it is now 2 months later and about a cm in diameter. Daily treatment to clean the wound and keep it moist with a layer of vaseline and a light layer of vaseline impregnated gauze has given her greasy hair but it has been relatively painless. She was finally able to have her hair washed and water on the wound after about 10 days due to discomfort, tho the nurse had said the next day would be fine. It will be completely healed in another 2 weeks at this rate, and for a 97 year old I think that is pretty good.
I know Melanoma is a more serious cancer and I don't know your Mom's age, but just wanted to share our recent experience. Specialists are so overwhelmed with patient load that they cannot see everyone as quickly as they want to, but perhaps this being a melanoma they might schedule her sooner. Keep after them or get a copy of the biopsy and find another Moh's surgeon. Any luck so far?