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?

@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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I really love that, its very true. Our “normal” day to day lives can trap us into inward thinking, I honestly believe that people just don’t realize the effect it can have on us and those around us, its unintentional. I did meet some very kind nurses my journey who brought me in fuzzy socks and pajamas. One nurse in particular I will never forget her kindness. I was in quarantine for 3 days due to the high level of radioactive iodine and was not allowed visitors. Most of the nurses came to the front of the room and wouldn’t cross the “line,” I would get up to greet them. This one nurse put on a suit and came and sat with me on my bed during her lunch breaks and I was just amazed with her generosity, she made a positive impact on my recovery.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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She does use screen reader software, I will certainly let her know. Thank you.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Lichen planus was diagnosed about ten years before my squamous cell carcinoma diagnosis. My dentist was very careless in watching the developing cancer. It was only after my bugging him for two years, that he sent me to a specialist, thinking that it was only the lichen planus. But that is water under the bridge and I decided to be proactive and only look at the future. But learning from the past is very important. If you have an open wound in your mouth that does not heal in two three weeks, have it looked at. Bear in mind that only about 2% of lichen planus will turn into cancer. It is very rear. I did not have any treatment for the lichen planus because I did not have any discomfort with it. Only after the open wound did not heal I started having discomfort. I hope this helps.
Loli

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@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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I like your post very much. It brought back memories of all the kind nurses that I had contact with. This are the kind of memories we need to remember every day. Having positive memories is healthy, and also being thankful every day is healthy. I am thankful for you all. I am very happy this group has been brought back to life. Thank you Colleen

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Thank you so much. For me LP was extremely painful from the beginning, but no open sores. All I read about LP says “NO PAIN.” But this is far from true. I wonder where this myth comes from.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Hi @jshdma, can you tell us a bit more about your experience with lichen planus — if you’re comfortable doing so of course? How did you get diagnosed? Were you diagnosed with cancer as well?

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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About lichen planus, my situation was similar to Loli’s except that I had a very painful lesion which I think was called erosive lichen planus. In 2007 after many years of pain, I had it diagnosed as squamous cell carcinoma. Maybe it had been that for a long time. Very rare for it to turn to cancer which is why my GP and dentist believed the LP diagnosis that the oral surgeon gave – for years. Like Loli, I regard it as water under the bridge BUT I’d hate anyone else to go through what I did. As she says, any sore that doesn’t heal for 2 – 3 weeks insist that it is seen by a specialist.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Yes, mine was painful too. Had to take steroids to kill the pain while I was on an overseas trip. But initially, when it consists of a white stripy rash in your mouth, it isn’t very sore – just makes certain foods sting.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Began as extremely painful sores under tongue– came and went. Quickly diagnoses as LP. Only treatment was steroids, which i didn’t want to do. It came and went a couple of times. Doc said cancer does not come and go. Eventually settled down to minor irritation, but that is still there. It changed my entire life. No spicy food (which I love), had to give up green peppers (possible trigger), which i used to eat every day. Hot liquids hurt somewhat.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Began as extremely painful sores under tongue, so I had to get some answers. Doc diagnosed pretty quickly. Not cancer, which he said was very rare. But I am quite nervous because it is still there to an extent. Interestingly, the medical books and other info always stress this is rarely painful.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Does LP ever go away?

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Mine went away when the cancer was removed and I haven’t had it since which makes me wonder if it really was lichen planus in the end if that makes sense. I was told it usually goes away by itself after a few years.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Yes, it does make sense. Doctors do not always have all the answers or sometimes, they have the wrong answers. But YEARS– that’s a long time. Thank you for your information.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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That is interesting. I remember having jalapenos for the first time when Subway came to NZ about 15 – 20 years ago (?). I’m terrible at remembering time frames. It was agony and that is when I first remember having oral lichen planus. I’ve heard of people having “light” treatment for lichen planus of the skin. It’s a tricky condition. We have an oral medicine specialist in our group. I’ll ask her what the latest info is on oral lichen planus.

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@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Interesting about the jalapenios. As I said before, I am from Mexico and have had spicy food all my life. I think the jalapenios exacerbate the LP. Now that Maureen mentions it, my oral LP disappeared after surgery. But my LP was fully blown. This were the words of the first specialist I saw. I just had to open my mouth, and he new immediately I had cancer right there, where the LP was very obvious. But I had other symptoms. In my nails and vagina and scalp. Not on my skin though. I had forgotten about it. Hmmmm

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