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.

becsubur | @becsubur | Jan 17 4:30pm
In reply to @alpaca "Hello everyone. I am Maureen, a New Zealander. I've had head and neck cancer since 2007...." + (show)
@alpaca

Hello everyone. I am Maureen, a New Zealander. I've had head and neck cancer since 2007. A small tongue lesion the first time and then recurrences in 2009 and 2014. The last two have necessitated reconstruction so i have a free flap for half my tongue and a small part of my inner cheek. Both these were on the same side so I had radiotherapy in 2014 to try to stop it recurring. The last surgery left me with a scarred chin and severed facial nerve which means I can dribble saliva (and food) out of my left lip if I'm not careful.
My cancer was a result of long term oral lichen planus, a usually harmless condition that can turn to cancer in rare cases.
My life with cancer has been eased my active participation on online forums. I help run a Facebook group in NZ and used to be actively involved in the Oral Cancer Foundation in the US. Helping others has helped me more than anything else has!

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Mine started out as lichen planus as well. I’ve had 6 surgeries and will soon be having my 7th. It was on my tongue, now it’s in the floor of my mouth. I wish I knew what to expect.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 17 6:17pm
In reply to @anythingispossible "Nice to meet everyone...receiving support from a therapist right after my diagnosis was the best thing..." + (show)
@anythingispossible

Nice to meet everyone...receiving support from a therapist right after my diagnosis was the best thing I did to help with the stress and anxiety before my two surgeries and treatments. Also seeing an integrative doctor at the hospital to help with my diet was a life saver. my academic medical center had all these added support services at the hospital. the only missing piece was not getting connected to a peer mentor after asking my doctors to connect me to someone from the community who was a survivor.

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Welcome, @anythingispossible. You've come to the right place to get connected with peers. I look forward to getting to know a bit more about you and your diagnosis to introduce you to other survivors.

What type of head and neck cancer do you have? When were you diagnosed? What treatments are you having?

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1 reply
kathyheidt | @kathyheidt | Jan 20 11:22am
In reply to @colleenyoung "Hi Kathy, I'd like to add my welcome. Here is a list of discussions where members..." + (show)
@colleenyoung

Hi Kathy, I'd like to add my welcome. Here is a list of discussions where members are talking about sinus cancer:
https://connect.mayoclinic.org/group/head-neck-cancer/?search=sinus&index=discussions

Click the link and post a comment in any relevant discussion to connect with others like you. 🙂

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I had more tests ie pet, ct, mri.. cancer not spread in lymph or orbits but in bone and cheek tissues and inferior antrum. After reading so many comments and hearing cancer came back within two years, was flap maxillectomy worth it? Or better to do just radiation and chemo. All cases unique but low stage 4a

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emoser12 | @emoser12 | Jan 21 7:03am

I am recovering from cancer treatments for tongue and lymph node cancer. Mine was a .9 centimeter size on the back of the tongue that was inoperable due to being too close to my breathing tube. I had 33 radiation treatments and 6 chemo treatments. I am 6 months in recovery and definitely getting stronger. My recent pet scan showed no suspicious activity anywhere which was a relief. I just received my first PT treatment for lymphedema. I have lymphatic drainage towards the front of neck. My physical therapist is suggesting I order a machine that will help with drainage along with exercises. Does anyone use one of these? I’m not sure if it’s necessary and whether it is covered by insurance. Thank you for this open forum. It really is so beneficial to so many of us.

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2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 21 8:10am
In reply to @emoser12 "I am recovering from cancer treatments for tongue and lymph node cancer. Mine was a .9..." + (show)
@emoser12

I am recovering from cancer treatments for tongue and lymph node cancer. Mine was a .9 centimeter size on the back of the tongue that was inoperable due to being too close to my breathing tube. I had 33 radiation treatments and 6 chemo treatments. I am 6 months in recovery and definitely getting stronger. My recent pet scan showed no suspicious activity anywhere which was a relief. I just received my first PT treatment for lymphedema. I have lymphatic drainage towards the front of neck. My physical therapist is suggesting I order a machine that will help with drainage along with exercises. Does anyone use one of these? I’m not sure if it’s necessary and whether it is covered by insurance. Thank you for this open forum. It really is so beneficial to so many of us.

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Hello @emoser12 Welcome to our Head and Neck group.
I am curious about a machine to help with drainage beyond the standard mechanical spring powered vacuum canister commonly used for drainage.
Several patients including myself have had salivary gland reroute due to radiation caused by the direct effects of radiation damage. In my case it is into the nasal passage on the left side causing my nose to run when I eat. A friend in MN has saliva flow from her neck when she eats.
Now I will look into lymph node drainage to see what that entails after radiation. Is this clear liquid or opaque?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 21 4:35pm
In reply to @becsubur "Mine started out as lichen planus as well. I’ve had 6 surgeries and will soon be..." + (show)
@becsubur

Mine started out as lichen planus as well. I’ve had 6 surgeries and will soon be having my 7th. It was on my tongue, now it’s in the floor of my mouth. I wish I knew what to expect.

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@becsubur, I'm sorry to hear that you have to undergo yet another surgery. I'm tagging @alpaca to ensure she saw your message. When are you scheduled for surgery?

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becsubur | @becsubur | Jan 21 5:45pm
In reply to @colleenyoung "@becsubur, I'm sorry to hear that you have to undergo yet another surgery. I'm tagging @alpaca..." + (show)
@colleenyoung

@becsubur, I'm sorry to hear that you have to undergo yet another surgery. I'm tagging @alpaca to ensure she saw your message. When are you scheduled for surgery?

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I’ll find out on Feb 14.

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becsubur | @becsubur | Jan 21 5:45pm
In reply to @emoser12 "I am recovering from cancer treatments for tongue and lymph node cancer. Mine was a .9..." + (show)
@emoser12

I am recovering from cancer treatments for tongue and lymph node cancer. Mine was a .9 centimeter size on the back of the tongue that was inoperable due to being too close to my breathing tube. I had 33 radiation treatments and 6 chemo treatments. I am 6 months in recovery and definitely getting stronger. My recent pet scan showed no suspicious activity anywhere which was a relief. I just received my first PT treatment for lymphedema. I have lymphatic drainage towards the front of neck. My physical therapist is suggesting I order a machine that will help with drainage along with exercises. Does anyone use one of these? I’m not sure if it’s necessary and whether it is covered by insurance. Thank you for this open forum. It really is so beneficial to so many of us.

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God bless you. I hope you feel better soon.

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becsubur | @becsubur | Jan 21 5:48pm
In reply to @kathyheidt "I had more tests ie pet, ct, mri.. cancer not spread in lymph or orbits but..." + (show)
@kathyheidt

I had more tests ie pet, ct, mri.. cancer not spread in lymph or orbits but in bone and cheek tissues and inferior antrum. After reading so many comments and hearing cancer came back within two years, was flap maxillectomy worth it? Or better to do just radiation and chemo. All cases unique but low stage 4a

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My Dr said it’s best to keep removing surgically, unless it metastasizes.

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brad78 | @brad78 | Jan 21 7:29pm

Found out 2 weeks ago I have p16+ due to a swollen node on left side. Will have surgery on the 31st. Shocked, scared, you name it. Doctors assure me this is very curable but I'm sure it will be a bit bumpy. Looking like radiation but most likely no chemotherapy. Hard to say until data comes in after the surgery.

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