Meet others living with Head & Neck Cancer: Introduce yourself

Mantle cell lymphoma. Large lump under my left jaw and due to start radiation for it as well as prostrate cancer late next month which will take a total of 5-6 weeks of daily treatment. On the waiting list for the helping hands lodging at the Phoenix clinic but if anyone has suggestion for affordable lodging in the area in case the helping hands does not work out. Thanks and good luck to all facing any type of this disease.

I am 6 yrs, as of 23 March 2017, out from HPV p16 H&N cancer from an unknown site. But they thought it was under-my tongue and gave 35 radiation treatments that focused on that area. They found the cancer cells in 2 of 41 removed lymph nodes BUT apparently no cancer cells got out of those 2 nodes. Hence, I have no experience with the movement of cancer cells to other parts of my body as of my last checkup. I go in every 6 months. My response is regarding your question on whether scar tissue can have an affect on your swallowing? The answer is YES! I just had a swallow test and it was determined that the scar tissue caused by the intense radiation treatment affected the valve that opens and closes when I eat anything. It prevents food from going down the wrong hole to the lungs. Thus, eating is task but must done or use a feeding tube. I did that for 4 months but won't do again, unless needed. Sorry to say, you will need to learn how to swallow again with this permanent issue. Once you do that, life gets easier. God Bless!

Thank you for your input. It’s a good feeling to just hear someone else talk about the same side effects. You to know there are issues that will be with me for awhile. I have my next biopsy in 2 days. From the bottom of my right lung.

@rubagaddal, any update about the cyst discovered on the left jaw and lung nodules? How are you doing?

@shielashepperd, I hope your voice continues to get stronger. Are you working with a speech pathologist?

@apple32, what a relief that early treatments have already relieved your husband's pain. Has he started radiation now?

Thank you for your input. It’s a good feeling to just hear someone else talk about the same side effects. You to know there are issues that will be with me for awhile. I have my next biopsy in 2 days. From the bottom of my right lung.

I do apologize I am new to this group and I think I may have introduced myself in the wrong spot. This is what I posted.

Hello, my name is Erika. From Pennsylvania. I was diagnosed with Metastatic Squamous Cell Carcinoma HPV positive in my neck lymph nodes and they are not finding where my origin is. I was diagnosed on 3/14/23. I first noticed a small lump in my neck in November of 22. I didnt think anything of it until February when I had noticed it had grown considerably. I had my first appoint with PCP on Feb. 14. And since then I have had blood work, ultrasound of the neck, CT scan of neck and then chest, a biopsy of the neck, and then surgery to remove all or part of the node to be ran through the lab. It indeed come back as MSCC +HPV. The CT scan of my chest didnt show much significance. All that was put in the report was Minimal linear atelectasis in the right middle lobe. Few 1 to 2 mm punctate
subpleural nodules noted in the lower lobes. I since had a PAP smear and the results have not come back yet. But on physical examination they noted a few lesions on cervix. I have been set up with a oncologist, radiologist(4-10), and a gynecologist(4-18). My ENT doctor said that my kind of cancer has a good prognosis, but everything I read online says poor prognosis. He also said that it would be better if they didnt find the primary cancer origin. Anyone else have a similar story? Any advice on what to do in the waiting period? Or any advice at all with anything will be appreciated. Im sick with worry.

I havent talked to my oncologist or radiation oncologist yet. That is on 4-10. But I will be weighing out all options. I hope I dont need another surgery. I hate what the anesthesia does to me its so embarrassing. Some people are happy and giddy. I am a hysterical basket case and cry very loudly.

My biopsy came back positive.
This time on the bottom of the right lung.
Dr is suggesting radiation and
Keytruda.
I want to check on surgical options too.
What else can I say.

Hello singlelady61. I am 52 years old and had tongue cancer, with reoccurrence. My last surgery was in December 2020 followed by 30 doses of radiation and 6 chemo that end 2/22/22. I still can't put into words the heart dropping sensation at hearing the news. I just want to send you, though virtual, hugs and let you know you are not alone in this journey. I had radial forearm free flap surgery and radiation/chemo. I was told mine was an aggressive form of Squamous Cell Carcinoma. My heart felt best wishes for you.