Meet others living with Head & Neck Cancer: Introduce yourself

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.

Hi @shielashepperd thanks for your response. So glad to hear you are making excellent progress, post- recovery! That is inspiring. Yes, I hear this cancer is much different than others. Praying for good test results for you in May and please share. He has one scheduled on 4/2, right before getting fitted for the radiation mask. Thank you also for the tips. I’ll be on the lookout for your results in May.

Thank you for your post. I am very sorry to hear about your husband. But he is lucky to have you as his advocate taking initiative to get information to cure him. I am actually a couple months ahead of your husband. I have Hypopharnyxgeal cancer stage 3a. Locally advanced. I also had Breast cancer 15 years ago. I can tell you breast cancer was so much easier to navigate than this. Mainly because there are many resources and awareness for BC. I finished my radiation 3 weeks ago. Cisplatain+35 rounds rads. No surgery. HPV negative (if you are + you are in luck). The treatment is like they say it is. Keep him active and do everything your doctor tells him to do. Keep his weight on with shakes and thick soups as long as possible. Also do the exercises. If they have not told you then ask or google them. 3 weeks post treatment my voice is coming back, I am eating & swallowing carefully and slowly. My radiated skin is peeling and I see new skin. No pain but I just have a cough that comes and goes. But that's fading too. My scans in May, so I too am nervous about my outcome. I am 57 years old, female, with kids in college.
I have many years planned ahead. I would love to meet someone in my situation, HPV negative, to tell me if it worked. For now I pray, exercise, eat healthy, and get hydration regularly. I finally having lunch with friends for the first time in months although I'll be whispering. I will post my scan feedback in May. Best of success. Feel free to reach out if you need anything. God Bless.

Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by an ENT for a few months with initial symptoms of a clogged left ear and those symptoms grew to excruciating pain which mimicked TMJ on the left side of his face, pain in his left ear and then numbness on the left side of his head and face. He was unable to eat and lost about 20 lbs. in the process. By the time he had a MRI on 12/30, they found a mass that was eventually staged as 3/4A. He is currently undergoing the initial 3 chemo cycles and set to begin radiation next month and continue with chemo once a week. We have had a few treatments delayed due to low blood counts as well. He no longer has the excruciating pain, but has not regained the weight, but is able to eat. He is also fatigued most days and having the typical chemo side effects after treatment. He is expected to have a PET scan at the beginning of April. Just curious for those of you who have had/currently have this diagnosis, did you see significant shrinkage of the mass on the first scan following treatment? Just curious since the pain is no longer, should we expect to hear some good news. We understand, regardless of what the scan shows, he’ll still have to undergo the 35 radiation treatments. The doctors have told us about all the side effects that he can expect as a result of the treatments. Also for those of you who have experienced radiation for this type of cancer, curious if these side effects are as bad as they are projecting? Were you able to work going to treatment daily? Thank you for any input you have. This is all so very new to us, as I’m sure it was to all of you. We are honestly still processing and trying to learn as much as we can. Thank you.

Thank you your post. I have just finished treatment for state 3A HypoPharnyxgeal cancer. 2 lymph nodes. Locally advanced cancer. Non surgically treatable due to size and location. I have never met anyone as of yet with the same diagnosis. Ones that have the same are also HPV positive which gives them a better prognosis. I never smoked but I did drink, for a period of 10 years. I did have breast cancer 15 years ago ( stage 3b). I had the works then including radiation to the chest which a theory lingers that this is what might have caused this cancer. I am a 57 yr old female. Good health ( besides the C's ), exercise and active. I am 3 weeks out from my last radiation. Speech is trying to come back and swallowing slowly and carefully but signs are there that things are recovering. My concern is really did I get this? We'll never know but if I could hear back from someone with a similar diagnosis and find out their prognosis and tips and tricks, I would love this. Thank you for reading my post.

Hello everybody here!
I wish all the best for you all brave cancer survivors.
I am diagnosed with stage II SCC of tongue May 2022. operated on the same month. I underwent a subtotal glossectomy, all neck lymph nodes dissected, and a tongue reconstruction was done with a flap from my breast.
the post operative phase went fine, NGT tube removed after 45 days and I started taking oral fluid diet.
After two months I received 30 sessions of radiation.
My suffering starts when I discovered that there is a defect beneath the tongue where food particles went and lodged there. It is very annoying and painful, I try my best to clean this pocket, but still some tiny particles stay there.
After radiation therapy I developed a mild neck lymphedema, but now I am fine, it is not progressing (Thank Allah).
The first MR image seems to be assuring.
Three weeks ago, I did A PET Scan, and it shows a cyst on the left Jaw, and two small lung nodules.
We are seeking different Professional opinions since some regard these nodules as suspicious, and others think they might not be that bad, and advised us to wait for a while and repeat the PET Scan.
We are waiting the opinion of the oncologist.

@nbkod7b for sure.

Thank you for sharing that. I am thankful to my Lord and Saviour Jesus Christ for each day.

@nbkod7b, I am not trying to lay my beliefs on you when saying that one day our bodies will be renewed in a spiritual realm.
Time is going so fast. Although your situation sounds unbearable, please know you really are in people's thoughts and prayers.
Hang-onto that hope, please.

Thank you for your response. I'm not able to swallow but I will try the swallowing exercises since that helped you. I can't move my tongue which happened after I started therapy which included the tongue exercises you described. That was before I was diagnosed with lymphoma which was the reason for radiation. The Drs hoped radiation would shrink the tumor and allow my mouth to open so they would be able to see what was going open but that wasn't the case. I have a face massager and will resume using it. I gave up on it as nothing seemed to be hapoening. I will look into red light therapy. I will try anything that has worked for someone else. That is why I so appreciate you taking the time to respond with your experiences and suggestions. Thanks again and best wishes for you.