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?

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

@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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@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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I am not from Mexico, but have always loved spicy foods. They definitely make LP worse. It has been extremely hard to give up almost everything I love to eat. Doc also told me it is mostly women who get LP. Strange.

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My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Hi @merryinman0811
Welcome to Mayo Clinic Connect. I moved your message to the Head & Neck Cancer group, in the introductions discussion. You may wish to browse that other discussions in the group as well: https://connect.mayoclinic.org/group/head-neck-cancer/tab/discussions/

But let’s get you introduced to some other members who understand. Please meet @alpaca @karly @angelag and @gaybinator

Merry, it must be hard to see your husband dealing with such worrisome symptoms for the past couple of months despite previous tests and scans coming back good. While Nov 30th and Dec 2 seem like a long way off, I’m glad you’re getting to see your oncologist next week. In the meantime, how are the two of you managing with his throwing up and difficulties swallowing? What changes have you been able to make to his diet to help?

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Hello, Merry. It must be a worry. Dec 2nd is not far away now and you will be relieved to get it sorted out. I wonder if your family doctor could arrange for him to be seen sooner? There might be some scarring causing the problem or any manner of things and he should not need to suffer this. Tell your husband that we wish you both well.

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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We thank you very much for your advice. I am trying not to show him how worried I really am. He worries about me all the time. He is my life and I don't know what I would ever do without him. 

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Thank you for responding and for directing us to the right group. We are trying to give him soft foods and having him drink plenty of fluids. He was so sick yesterday. He was dizzy, shakey, and running a low grade temp. His stomach hurts as well. Next week can't come soon enough. Thanks again.

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