Meet others living with Head & Neck Cancer - Come introduce yourself

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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors @adriennef and @alpaca and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

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, soft tissue sarcoma or thyroid cancer.

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

My name is Benjamin Hartman. I was diagnosed with adenoid cystic carcinoma in 2012 in my rt parotid gland. I'd been clear for the past 6 years, but 4 weeks ago I learned that the ACC had spread to my lungs. Had surgery this past Thursday and will then undergo targeted radiation.

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@odikaflog

My name is Benjamin Hartman. I was diagnosed with adenoid cystic carcinoma in 2012 in my rt parotid gland. I'd been clear for the past 6 years, but 4 weeks ago I learned that the ACC had spread to my lungs. Had surgery this past Thursday and will then undergo targeted radiation.

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So sorry to hear of your recurrence. Good news that it was surgically removed, and is the radiation to that area of the lung? Were you able to have a VATS procedure or was it an open thoracotomy? I had SCC in my ear canal and have had two lung mets removed, 18 months and 3 years after my initial surgery. Both were removed surgically via VATS at Mayo but no radiation afterward. The second one was an extension of the first, so I wonder if your radiation will help to clear the area. What kind of side effects are expected from radiation? Good luck with your recovery.

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I have had Errosive Lichen Planus for about 35 years. I have it vaginally, and orally for 35 years. I have from time to time had very painful lesions. I have been tracked by oral Specialists with steroids and autoimmune drugs. I have been pain free for a couple of years and resist any oral steroids like Prenison because it makes me sick internally.

I one was prescribed medicine used to suppress the immune systems of organ transplant patients. I had a very severe reaction and had to take the aid car to the ER.

I am currently having very painful lesions. And cannot find any physician who knows how to treat my symptoms.

Tried to make a Mayo Clinic appointment but no one there was interested in talking to me. Others I have seen in AZ do not have knowledge about my disease including the dentist.

Any advice! Thanks Mary

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@maryz

I have had Errosive Lichen Planus for about 35 years. I have it vaginally, and orally for 35 years. I have from time to time had very painful lesions. I have been tracked by oral Specialists with steroids and autoimmune drugs. I have been pain free for a couple of years and resist any oral steroids like Prenison because it makes me sick internally.

I one was prescribed medicine used to suppress the immune systems of organ transplant patients. I had a very severe reaction and had to take the aid car to the ER.

I am currently having very painful lesions. And cannot find any physician who knows how to treat my symptoms.

Tried to make a Mayo Clinic appointment but no one there was interested in talking to me. Others I have seen in AZ do not have knowledge about my disease including the dentist.

Any advice! Thanks Mary

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I see a specialized Dentist in Orange Park (FL) for treatment of Lichen Planus. I use a Nystatin/Dexamethasone solution rinse 3x daily.

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My name is Paul. I was diagnosed with cancer inside my right cheek in June of 2016. I underwent a flap surgery followed by 33 radiation treatments (in addition to a clinical trial with Cetuximab, which I wasn't able to complete). I thought everything was fine until a recurrence the next year. I had another flap surgery (which was much more extensive than the first) but no other treatment. Then in 2018 it came back yet again, this time on the outside of my cheek. I wasn't given much hope, really, but I persuaded the medical team to try immunotherapy. It didn't work at all. So this past fall I started on chemotherapy, once every three weeks (carboplatin). My quality of life isn't too bad, really, as I can still eat on my own and other than the huge wound (which seems to be healing) and the chemotherapy side effects, I'm pretty well off. But the medical team keeps reminding me that this chemotherapy will not cure the disease, but will slow it down, at best. That isn't what I want to hear, as I'm only 52 years old and otherwise in excellent health. I'd be interested in hearing from other folks similarly situated. Of particular interest is the recent development at the Mayo Clinic of treatment with the measles virus, which I understand is headed for clinical trial with squamous cell carcinoma patients.

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@cpaulestep

My name is Paul. I was diagnosed with cancer inside my right cheek in June of 2016. I underwent a flap surgery followed by 33 radiation treatments (in addition to a clinical trial with Cetuximab, which I wasn't able to complete). I thought everything was fine until a recurrence the next year. I had another flap surgery (which was much more extensive than the first) but no other treatment. Then in 2018 it came back yet again, this time on the outside of my cheek. I wasn't given much hope, really, but I persuaded the medical team to try immunotherapy. It didn't work at all. So this past fall I started on chemotherapy, once every three weeks (carboplatin). My quality of life isn't too bad, really, as I can still eat on my own and other than the huge wound (which seems to be healing) and the chemotherapy side effects, I'm pretty well off. But the medical team keeps reminding me that this chemotherapy will not cure the disease, but will slow it down, at best. That isn't what I want to hear, as I'm only 52 years old and otherwise in excellent health. I'd be interested in hearing from other folks similarly situated. Of particular interest is the recent development at the Mayo Clinic of treatment with the measles virus, which I understand is headed for clinical trial with squamous cell carcinoma patients.

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@cpaulestep Dear Paul, You don't say anything about the background of this definitely unexpected cancer. Did they ever give you any ideas about why this happened? With prayers, J

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@jshdma

@cpaulestep Dear Paul, You don't say anything about the background of this definitely unexpected cancer. Did they ever give you any ideas about why this happened? With prayers, J

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I really had no explanation. For the past four or five years prior to diagnosis I occasionally enjoyed a hand rolled Cuban cigar, but I can’t imagine that was enough to cause cancer. I saw a dentist early on who thought it was lichen planas, and I’ve often wondered if maybe he was right and that turned to cancer. He also suggested maybe I was chewing on my cheek at night because of stress. Again, maybe he was right and that wound turned to cancer. I guess I’ll never know, but one oncologist told me it wasn’t uncommon for folks to contract a cancer that there was no reason for them to have, and I was just one of those who drew the short straw. I just want rid of it!

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@cpaulestep Cancer can be very much random. I had lichen planus, however, that over many years turned to cancer or maybe was cancer much earlier than was recognised. They do say that long term irritation (over decades) can cause it but as you say, you just want it gone. I wish you well in your search for further treatment.

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@maryz

I have had Errosive Lichen Planus for about 35 years. I have it vaginally, and orally for 35 years. I have from time to time had very painful lesions. I have been tracked by oral Specialists with steroids and autoimmune drugs. I have been pain free for a couple of years and resist any oral steroids like Prenison because it makes me sick internally.

I one was prescribed medicine used to suppress the immune systems of organ transplant patients. I had a very severe reaction and had to take the aid car to the ER.

I am currently having very painful lesions. And cannot find any physician who knows how to treat my symptoms.

Tried to make a Mayo Clinic appointment but no one there was interested in talking to me. Others I have seen in AZ do not have knowledge about my disease including the dentist.

Any advice! Thanks Mary

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@maryz, welcome to Connect. It must be so frustrating to not find providers knowledgeable about erosive lichen planus. In addition to the advice offered by @skoshi, I wanted to let you know about these active discussions on the topic in the Autoimmune Diseases group. Hopefully you find additional information and recommendations there. I also hope @loli will add her thoughts and experiences with lichen planus.

> Groups > Autoimmune Diseases
> Erosive oral lichen planus https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/
> Vaginal pain Lichen Planus https://connect.mayoclinic.org/discussion/vaginal-pain-lichen-planus/
> Lichen planus https://connect.mayoclinic.org/discussion/lichen-planus-2da636/

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Hello, my name is Lisa, and I have salivary gland cancer– adenoid cystic carcinoma. January 2016 I had a partial maxillectomy with a free flap and temporary trach. Radiation followed after I had healed a few weeks. Thankfully my dentist was able to make me up an amazing partial denture to fill up the hole left by taking half of my hard and soft palate along with my right jaw bone and teeth. I have my 3 year recheck this week, and the stress is real. But the world keeps on turning!! I am thankful for my 2 little boys that keep me running and keep my mind (usually) occupied on normal life stuff. So far no recurrences or metastasis. I am both optimistic and realistic. One thing my docs said I can do is to get into the best shape of my life to help fight when it comes back. Which it will. Is what I am told. Luckily I have always loved sports and working out!

I am new to Connect here, but looking forward to possibly meeting someone with similar stuff to mine. I am still figuring out how to deal with crazy dry mouth after losing a lot of minor salivary glands and then the radiation. Also sinus stuff, ear issues on and off, and dry eye. Mostly on the surgery/radiation side. I actually think mouths and all inner connected stuff is kind of gross. Kind of ironic that I have docs looking at all of that so much now??

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@thelisamarie

Hello, my name is Lisa, and I have salivary gland cancer– adenoid cystic carcinoma. January 2016 I had a partial maxillectomy with a free flap and temporary trach. Radiation followed after I had healed a few weeks. Thankfully my dentist was able to make me up an amazing partial denture to fill up the hole left by taking half of my hard and soft palate along with my right jaw bone and teeth. I have my 3 year recheck this week, and the stress is real. But the world keeps on turning!! I am thankful for my 2 little boys that keep me running and keep my mind (usually) occupied on normal life stuff. So far no recurrences or metastasis. I am both optimistic and realistic. One thing my docs said I can do is to get into the best shape of my life to help fight when it comes back. Which it will. Is what I am told. Luckily I have always loved sports and working out!

I am new to Connect here, but looking forward to possibly meeting someone with similar stuff to mine. I am still figuring out how to deal with crazy dry mouth after losing a lot of minor salivary glands and then the radiation. Also sinus stuff, ear issues on and off, and dry eye. Mostly on the surgery/radiation side. I actually think mouths and all inner connected stuff is kind of gross. Kind of ironic that I have docs looking at all of that so much now??

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Hi @thelisamarie, you are certainly not alone in having to figure out how to deal with the dry mouth stuff after surgery and radiation for adenoid cystic carcinoma. You might be interested in some of these discussions on Connect:

Saliva and dry mouth https://connect.mayoclinic.org/discussion/saliva-and-dry-mouth/
Teeth and Head & Neck Cancer https://connect.mayoclinic.org/discussion/teeth-1/

I'm also tagging @sylviapf @catlyn @loli @sepdvm @dakotapat @hoppy and @alpaca to bring them into the discussion.
LisaMarie, I like that you describe yourself as both an optimist and realist – good combination. What sports and physical activity do you like doing the most?

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Hi, I'm Karen. Diagnosed with SCC of the mouth in January '19, surgery in February '19, finished 6 weeks of proton therapy on 5/17/19. I'm wondering what to expect as far as pain and discomfort post proton. I was told to expect 2 weeks before healing would begin, but will I be in pain for that entire period? I'm really hurting now and trying not to overdo the pain meds, Proton therapy was the hardest thing I've ever had to endure and I hoped there would be some relief when it was over, but so far…….none. What have others experienced?
And, though I complain, I am eternally grateful to Mayo Clinic and everyone there.

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@karenjf I haven't had proton therapy but "ordinary" radiotherapy for SCC of the mouth. I think the side effects would be similar. The effects are ghastly with internal and external "burning" and difficulty eating. I just think you need to take the appropriate pain meds. They are not addictive if you need them. They're not harmful for a short period and it's bad for you to be in pain. You need to take the meds regularly so you don't get break through pain.
I was told two weeks too but I started to feel better before that – maybe because my radiotherapy was more limited than some. It was maybe 10 days before I noticed an improvement and after a short while I could stop the meds. Everyone is different though!
Please talk to you team about your pain and how to manage it. Wishing you well!

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@karenjf

Hi, I'm Karen. Diagnosed with SCC of the mouth in January '19, surgery in February '19, finished 6 weeks of proton therapy on 5/17/19. I'm wondering what to expect as far as pain and discomfort post proton. I was told to expect 2 weeks before healing would begin, but will I be in pain for that entire period? I'm really hurting now and trying not to overdo the pain meds, Proton therapy was the hardest thing I've ever had to endure and I hoped there would be some relief when it was over, but so far…….none. What have others experienced?
And, though I complain, I am eternally grateful to Mayo Clinic and everyone there.

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Hey @karenjf, it's been almost 10 days since your last proton therapy treatment. How are you feeling? Has the pain subsided?

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I'm still burning and itching and changing out dressing 4 times a day, but the intensity has subsided. Still doing the pain meds on a regular basis. Sleeping better, though…………………..So we're getting there! Thanks for asking……………..

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