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Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

singlelady61 | @singlelady61 | Mar 26, 2023
In reply to @apple32 "Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by..." + (show)
@apple32

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.

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Good morning, so sorry for your diagnosis. I have HPV16.
It was on the back of my tongue with cancer in both lymph nodes. My treatments were done at the same time.
5 chemo and 35 radiation treatments.
Unfortunately I had a feeding tube for 4 months and did not work. The side effects were worse than I was told. It wasn’t until I was experiencing the side effect that the Dr would say “yea that can happen.”
Side effects, over abundance of saliva in the beginning. Causes choking. Then suddenly you dry up. NO saliva, swallowing is a struggle. Drink something besides just water for hydration. Sorry this isn’t the news you wanted. If I can give you any other tips, please reach out.
God Bless

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erikabcs84 | @erikabcs84 | Mar 26, 2023
In reply to @smittyfromcuse "Hi Erika, my story is similar. I had a bump on my neck which was eventually..." + (show)
@smittyfromcuse

Hi Erika, my story is similar. I had a bump on my neck which was eventually diagnosed as HPV+ SCC. The lymph nodes were at level 2. I also had no obvious primary but the tonsils drain to that area of the lymph nodes so a biopsy of my left tonsil confirmed a small primary tumor there. This was in December 2022. Since then I’ve had two surgeries and am now undergoing radiation and chemotherapy. I was also told the prognosis is very good for HPV+ cancer as it responds to treatments better than HPV- cancers. There is a blood test called NavDX that detects HPV+ tumor cells in your blood. Ask your doctors about it. I had a positive score before surgery and after surgery the tests detected no circulating tumor cells at all. I’m receiving radiation and chemo to make sure no microscopic cancer cells spread anywhere else. It’s a long process and I recommend finding a comprehensive cancer center to be treated at. They will coordinate your care and all your treatments. God bless you and stay positive as you will beat this.

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Thank you for replying. I had my tonsils removed in march of 21. When they diagnosed me with this they took a look back at my pathology report for tonsils, and it was clear. before this surgery i had 3 large lumps in my neck. The removed one fully and i do believe the other 2 are in there still. I will ask my doctors about what you suggest, ty. I am just hoping that the cancer hasnt spread to my cervix, or maybe it came from there, i have no idea. Im thinking my radiology appointment is going to talk about my treatment options. And i really hope i find out more answers. I have to wait until 4-10 for those appointments and the wait is driving me insane.
Again, ty for replying and I wish you the best of luck with your treatment plan. I will send good vibes your way as I dont believe in a higher power. Thank you.

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erikabcs84 | @erikabcs84 | Mar 26, 2023
In reply to @kozl741 "Hi! My bf had a similar diagnosis and surgery as well. He also had a negative..." + (show)
@kozl741

Hi! My bf had a similar diagnosis and surgery as well. He also had a negative result with the blood test. His doctors seem to be on the fence about any further treatment. I’m curious as to what benefits the radiation and chemo treatments provide. Did the doctors give you a choice to undergo further treatment just to be sure? Did they talk about percentages etc?

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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.

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1 reply
new1 | @new1 | Mar 26, 2023
In reply to @erikabcs84 "I would go see your PCP. Good luck with getting anyone to reply here, my post..." + (show)
@erikabcs84

I would go see your PCP. Good luck with getting anyone to reply here, my post has been on for 18 hours and still no replies.

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Thanks. From what I read
It seems like there is one
specialist for inner cheek
and a different specialist for the lip. I would rather start with a specialist because I do not trust pcp
for this, but thanks for responding. I hope this site has some people with similar conditions.

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shielashepperd | @shielashepperd | Mar 31, 2023
In reply to @erikabcs84 "Hello, my name is Erika. From Pennsylvania. I was diagnosed with Metastatic Squamous Cell Carcinoma HPV..." + (show)
@erikabcs84

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.

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I am very sorry to hear about your new possible illness. But much of what you read is dated and you really don't know the history of these patients. A lot has progressed with HPV. There is a protocol that is in place that is very successful I hear. I'm not a doctor but a cancer patient myself with HPV negative. Everyone I talk to that has successful outcomes are all HPV positive. Stay cool and dont read online too much. Best of success.

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bcu | @bcu | Apr 1, 2023

I had rare angiosarcoma 10 years ago in the skin on my cheek treated with surgical removal and radiation. It has reoccurred adjacent to old site but closer to eye and nose. They could not get clear margin close to my eye. I will have surgery to remove that tissue but no reradiation.( Concern for blindness,no clear margin). I was wondering if anyone has had adjunct therapies anywhere since radiation is off the table. The Sarcoma clinic I go to is not offering it in my situation.

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michael3319 | @michael3319 | Apr 1, 2023
In reply to @singlelady61 "I am 16 months out from my treatments. For HPV16 I got 5 chemo treatments and..." + (show)
@singlelady61

I am 16 months out from my treatments. For HPV16 I got 5 chemo treatments and 35 radiation
treatments. My cancer has moved to my right lung for the second time. I had 10% removed last November. The next surgery has not been determined yet.
Now I am beginning to have swallowing problems again. Does anyone know if scar tissue can be an issue in my throat? I had lymph nodes on both sides of my neck radiated.
Or has anyone had their esophagus stretched?

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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!

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1 reply
westand731 | @westand731 | Apr 1, 2023

Will you please tell me how I identify or go to the latest posts?
Right now I'm on an iPhone I could go to the computer, but typically I use the phone . Thank you, best

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 1, 2023
In reply to @westand731 "Will you please tell me how I identify or go to the latest posts? Right now..." + (show)
@westand731

Will you please tell me how I identify or go to the latest posts?
Right now I'm on an iPhone I could go to the computer, but typically I use the phone . Thank you, best

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@westand731, You can view the messages in chronological order (Oldest to Newest) or you can choose to see the most recent messages first by selecting Newest to Oldest. The default order is Oldest to Newest. To see recent posts, you can skip to the last page of a discussion or change the sort to Newest to Oldest.

Learn more here:
- [TIP] Customize the Order You View Posts - See New Posts First https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 1, 2023
In reply to @rubagaddal "Hello everybody here! I wish all the best for you all brave cancer survivors. I am..." + (show)
@rubagaddal

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.

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@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?

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