1. < Head & Neck Cancer
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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.

Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 10, 2023
In reply to @new1 "I recently noticed a dark spot on my inner cheek and scaly Red and white spots..." + (show)
@new1

I recently noticed a dark spot on my inner cheek and scaly
Red and white spots on my lip.
If this is lip cancer and inner cheek cancer what kind of doctor treats this and where is
the best place to go?

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Your primary should take a look at what you have going on with your mouth. Mouth sores can have many causes but it would be a good place to start.
We don’t give out direct medical advice here on this site but many of us have been through things most folks can’t imagine. So if your primary finds cancer such as squamous cell or others, this would be the place where you can find help and advice to deal with the next steps. Go see your doctor and good luck.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 10, 2023
In reply to @vasolino "I received 35 proton neck treatments for squamous cell on root of tongue. Just lucky it..." + (show)
@vasolino

I received 35 proton neck treatments for squamous cell on root of tongue. Just lucky it was caught early and needed, no chemo. Reading about the symptoms all of us who have under gone radiation, I am sorry but I believe we are not being properly cared for. Some of us will never get our taste back or never find relief from dry mouth. And heaven forbid if we should ever need a tooth extraction. It probably will never heal. Mayo Clinic offers a freezing option vs radiation for prostate cancer. And I can’t for the life of me figure why no one American institution offers this easy to get to no side effects for the tongue. There is one Mexican institution that offers it. I raised the question with an ENT and he said Well, it comes back to which I responded And whoever said it couldn’t come back with radiation? And I went on ‘So what? Even if I offers only a couple of more years without this discomfort , it’s worth it, just ask anyone of us. It seems to me freezing should be the first option offered all patients. It would be kess lucrative but a lot better than 7;weeks of radiation and the discomfort that follows…no better time to start.

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You may have a good argument here. Our current radiation treatment is basically a refined treatment from around one hundred years ago. It does however usually work. We need to find a better way I agree and someday we will. And we will look back and wonder what the heck was medicine thinking.
In the meantime…… Dry mouth. Twenty plus years I get up in the night to sip water. Can’t eat white rice and white meat poultry. Toast is better than bread but with butter not margarine. The point is we find ways to cope. There are many of us on this very feed who live with the new normal that cancer and its treatments have left us with. And for most of us it’s okay to live again.
Let me know how long it has been since your radiation. Let me/ us know specifically what you are trying to cope with and likely someone here has been through the same thing and can help.
And it is okay just to vent here too. We cannot carry you but we can talk with you, help you cope, and understand you.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Apr 10, 2023
In reply to @erikabcs84 "I do apologize I am new to this group and I think I may have introduced..." + (show)
@erikabcs84

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.

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I have had MSCC for the past 11 years. Not HPV since external ear origin. My diagnosis was done at the University of Michigan when I asked local ENT for referral and all followup of surgeries and rechecks at Mayo Clinic Rochester MN. We live in Ohio but the quality of Mayo makes the travel worth it. I highly recommend a big cancer center/referral center for their opinion, if not also treatment there. Memorial Sloan Kettering and Johns Hopkins are perhaps closer for you than MN. I have been told that MSCC is not curable, only controlled, but mine has been gone for 2 years on a newer Immunotherapy Cemiplimab. I know that HPV SCC is much more responsive to traditional treatment. It is all very scary and the stress induced by your worry does not help. A couple of books I found helpful are How Not to Be MY Patient by Edward Creagan, a MAyo palliative care physician, and Radical Remissions by Kelly Turner. These books help you realize what additional things you can do to help yourself through this terrifying process of cancer. For a little different approach, The Rebel's Apothecary by Jennifer Sansouci is full of information. Good luck to you in this battle. Positive attitudes will keep you going.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 10, 2023
In reply to @bcu "I had rare angiosarcoma 10 years ago in the skin on my cheek treated with surgical..." + (show)
@bcu

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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I was hoping someone who reads this feed would have a similar experience now that we are ten days since you first posted. Some of the larger clinics and hospitals may be to your benefit. Ultimately we all must take our healthcare into our own hands as only we are our best advocate. Do-overs are not in our favour.
The question I have for you, where are you located?

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bcu | @bcu | Apr 10, 2023
In reply to @hrhwilliam "I was hoping someone who reads this feed would have a similar experience now that we..." + (show)
@hrhwilliam

I was hoping someone who reads this feed would have a similar experience now that we are ten days since you first posted. Some of the larger clinics and hospitals may be to your benefit. Ultimately we all must take our healthcare into our own hands as only we are our best advocate. Do-overs are not in our favour.
The question I have for you, where are you located?

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I go to the Duke Sarcoma Clinic in Durham N.C . ( Had original radiation there and have been being followed there every since. ) I have my surgeries at University of North Carolina Health Systems by the Oncology Surgeon there that originally did my surgery in 2012. We live about an hour and a half outside of the area.

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new1 | @new1 | Apr 10, 2023
In reply to @hrhwilliam "Your primary should take a look at what you have going on with your mouth. Mouth..." + (show)
@hrhwilliam

Your primary should take a look at what you have going on with your mouth. Mouth sores can have many causes but it would be a good place to start.
We don’t give out direct medical advice here on this site but many of us have been through things most folks can’t imagine. So if your primary finds cancer such as squamous cell or others, this would be the place where you can find help and advice to deal with the next steps. Go see your doctor and good luck.

Jump to this post

Primary care Dr here does
not perform any exam in the mouth.
I also have read issues in the mouth are handled by
an oral surgeon and or a
nose/throat specialist.
I also have the issue with my lip and who knows which Dr deals with that???
I was trying to avoid wasting time by going to the proper Dr first but it seems that is more challenging than it needs to be.

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ronaldwessman | @ronaldwessman | Apr 10, 2023

Has anyone with HPV used the Reduced chemo radiation procedure to treat base of tongue cancer

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 10, 2023
In reply to @singlelady61 "My biopsy came back positive. This time on the bottom of the right lung. Dr is..." + (show)
@singlelady61

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.

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@singlelady61, while I can't give your that heartfelt, first-hand experience that @leelee70 so kindly sent you, allow me to connect you with this discussion:
- Keytruda for Head & Neck cancers https://connect.mayoclinic.org/discussion/keytruda/

I suggest asking your questions about Keytruda in that discussion by clicking the link. I'll make sure you get connected with others.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 10, 2023
In reply to @new1 "Primary care Dr here does not perform any exam in the mouth. I also have read..." + (show)
@new1

Primary care Dr here does
not perform any exam in the mouth.
I also have read issues in the mouth are handled by
an oral surgeon and or a
nose/throat specialist.
I also have the issue with my lip and who knows which Dr deals with that???
I was trying to avoid wasting time by going to the proper Dr first but it seems that is more challenging than it needs to be.

Jump to this post

Perhaps your PCP or staff can refer you to an Ear Nose Throat aka Otolaryngologist who I would be certain would not be afraid to look in your mouth. Your Dentist might also be able to get you help as well. Sorry to hear you are being treated this way by a primary. We all must take our care into our own hands at times because we have to get it right.
It may be nothing but you need to get a diagnosis. Let us know how you are doing. .

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 10, 2023
In reply to @bcu "I go to the Duke Sarcoma Clinic in Durham N.C . ( Had original radiation there..." + (show)
@bcu

I go to the Duke Sarcoma Clinic in Durham N.C . ( Had original radiation there and have been being followed there every since. ) I have my surgeries at University of North Carolina Health Systems by the Oncology Surgeon there that originally did my surgery in 2012. We live about an hour and a half outside of the area.

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If you are getting nowhere with a University teaching hospital, perhaps try Greensboro or Charlotte. And consider that Mayo is down in Jacksonville, FL as well. We know firsthand how health care, particularly cancer can disrupt your entire life. But this is a battle that you did not start but you must finish on your terms. Try to get the best help you can. Take charge of this once again and beat it. We are here to listen and hold your hand if needed.

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