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?

@karenjf

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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Well done! It's a process and there's light at the end of the tunnel.

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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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Good morning @karenjf. My name is Merry and I am a Mentor for Connect, mostly lung cancer and smoked for 35 years. I am so sorry that you have to endure so much pain as a result of treatments. It just doesn't seem right, does it?
I'm 72 years old and have had 4 lung cancers. I have had 2 surgeries, chemo and both proton and photon radiation. I had Proton radiation about 2 years ago for my 4th cancer. It was my first introduction into SBRT. The machines are huge! It's scary too lie under them and hope they work but not fall on you! lol
I'm happy that you are feeling some relief. As was explained to me it will take a full 6 months for the fatigue to start to dissipate but then you will start getting back to "normal".

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Thanks for responding. It's getting better. But I sure hope it's not 6 months back to normal!

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@karenjf

Thanks for responding. It's getting better. But I sure hope it's not 6 months back to normal!

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@karenjf There are degrees of normal: okay normal and normal normal and some of us have the new normal. Sounds as if you are improving nicely.

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@karenjf

Thanks for responding. It's getting better. But I sure hope it's not 6 months back to normal!

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@karenjf– Good morning. I had the same reaction as you did and wrote to my Radiologist for an explanation. This is what he said:

My initial question:
"How radiation treatments keep working. In other words what does it keep doing to my tumor? How does it continue to work if treatment has stopped?"

Dr. Willers
"The goal is to have the last tumor cell killed on the last day of radiation. In that regard, radiation does not really work anymore after all the treatments have been delivered. However we have no test to directly measure tumor kill. We can only use a CT to see the delayed indirect effect of radiation where a dead tumor slowly shrinks over time as the dead tissue is being absorbed by the body."

Many of us think that our bodies will respond immediately to treatments and procedures, and why shouldn't we? We've never encountered any of this before and many doctors don't explain well. But it takes our bodies a while to respond and to work to heal us. Perhaps your recovery will be shorter? I think that it depends on our metabolisms too. I think that it also depends on what's left of our original organs, lol, because they have to chip in more to help with recovery.
Does this make sense? How are you today?

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I'm ok maybe normal looking forward to neonormal soon.
That's a good explanation………………..thanks!

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I was diagnosed with thyroid cancer 18 mos ago. Had surgery and radioactive iodine and that went well. My last checkup two days ago revealed a growth about .9 centimeters in my lymph node in my neck. I had Huerthle cell cancer which I know is aggressive. I'm scared.

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Sorry to hear this. It's a real shock when this happens when you assume it is all over. It's normal to be scared but you will feel better when there is a treatment plan. I assume that there will be radiotherapy and chemo options and have heard that these are becoming more targeted with fewer side effects.
Know that there are people out here who understand what you are going through and wish you all the best.

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So sorry to read this…good luck going forward with treatment..I believe in the power of prayer, and I am praying for you.

Liked by mybadthyroid

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@mybadthyroid

I was diagnosed with thyroid cancer 18 mos ago. Had surgery and radioactive iodine and that went well. My last checkup two days ago revealed a growth about .9 centimeters in my lymph node in my neck. I had Huerthle cell cancer which I know is aggressive. I'm scared.

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Hi, @mybadthyroid – I wanted to add my welcome to Mayo Clinic Connect. Glad you've connected with @alpaca and @skoshi. I also wanted to invite some of the other members in this conversation to comment on your recent Hurthle cell cancer diagnosis with the growth in the lymph node discovered in your neck, and the fact that you are feeling scared right now. Please meet @karenjf @merpreb @sepdvm @cpaulestep @jshdma.

@mybadthyroid – what is the next step for your treatment at this point?

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@lisalucier

Hi, @mybadthyroid – I wanted to add my welcome to Mayo Clinic Connect. Glad you've connected with @alpaca and @skoshi. I also wanted to invite some of the other members in this conversation to comment on your recent Hurthle cell cancer diagnosis with the growth in the lymph node discovered in your neck, and the fact that you are feeling scared right now. Please meet @karenjf @merpreb @sepdvm @cpaulestep @jshdma.

@mybadthyroid – what is the next step for your treatment at this point?

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Thank you. It's good to be able to express my fear. I will see the surgeon on July 9th to schedule surgery. That's all I know for now. I do know I have a very good surgeon so that makes me feel better.

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A good surgeon, a date in the near future … This is great news. I wish you well.

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Hi all,
I'd like to invite you to join us today, Friday, August 2 at 9 a.m. CT for a video Q&A with Dr. Eric Moore, head and neck surgeon, and Dr. Daniel Ma, radiation oncology, about the rising tide of HPV associated head and neck cancers. See more information and signup here:
https://connect.mayoclinic.org/webinar/video-qa-about-hpv-associated-head-and-neck-cancer/

Dr. Moore and Dr. Ma will answer questions during the broadcast.
Post your question before and during the broadcast. You can participate in the Video Q&A on Connect by returning to https://connect.mayoclinic.org/webinar/video-qa-about-hpv-associated-head-and-neck-cancer/
The video will be shown at the top of the page.

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