1. < Head & Neck Cancer
Moderator

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 1, 2023
In reply to @cowpoke43 "Mantle cell lymphoma. Large lump under my left jaw and due to start radiation for it..." + (show)
@cowpoke43

Mantle cell lymphoma. Large lump under my left jaw and due to start radiation for it as well as prostrate cancer late next month which will take a total of 5-6 weeks of daily treatment. On the waiting list for the helping hands lodging at the Phoenix clinic but if anyone has suggestion for affordable lodging in the area in case the helping hands does not work out. Thanks and good luck to all facing any type of this disease.

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Hi @cowpoke43, you will find helpful tips about lodging and more in the
- Visiting Mayo Clinic support group

You may wish to repeat your question in this discussion:
- What are your housing recommendations for Mayo Clinic in Phoenix, AZ? https://connect.mayoclinic.org/discussion/housing-for-mayo-phoenix/

REPLY
singlelady61 | @singlelady61 | Apr 1, 2023
In reply to @michael3319 "I am 6 yrs, as of 23 March 2017, out from HPV p16 H&N cancer from..." + (show)
@michael3319

I am 6 yrs, as of 23 March 2017, out from HPV p16 H&N cancer from an unknown site. But they thought it was under-my tongue and gave 35 radiation treatments that focused on that area. They found the cancer cells in 2 of 41 removed lymph nodes BUT apparently no cancer cells got out of those 2 nodes. Hence, I have no experience with the movement of cancer cells to other parts of my body as of my last checkup. I go in every 6 months. My response is regarding your question on whether scar tissue can have an affect on your swallowing? The answer is YES! I just had a swallow test and it was determined that the scar tissue caused by the intense radiation treatment affected the valve that opens and closes when I eat anything. It prevents food from going down the wrong hole to the lungs. Thus, eating is task but must done or use a feeding tube. I did that for 4 months but won't do again, unless needed. Sorry to say, you will need to learn how to swallow again with this permanent issue. Once you do that, life gets easier. God Bless!

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Thank you for your input. It’s a good feeling to just hear someone else talk about the same side effects. You to know there are issues that will be with me for awhile. I have my next biopsy in 2 days. From the bottom of my right lung.

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2 replies
michael3319 | @michael3319 | Apr 1, 2023
In reply to @singlelady61 "Thank you for your input. It’s a good feeling to just hear someone else talk about..." + (show)
@singlelady61

Thank you for your input. It’s a good feeling to just hear someone else talk about the same side effects. You to know there are issues that will be with me for awhile. I have my next biopsy in 2 days. From the bottom of my right lung.

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Stay positive and have someone come with you so that you have someone else hearing what is being said by the doctor. I will say a pray for you and keep fighting your issue.

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cowpoke43 | @cowpoke43 | Apr 2, 2023
In reply to @colleenyoung "@rubagaddal, any update about the cyst discovered on the left jaw and lung nodules? How are..." + (show)
@colleenyoung

@rubagaddal, any update about the cyst discovered on the left jaw and lung nodules? How are you doing?

@shielashepperd, I hope your voice continues to get stronger. Are you working with a speech pathologist?

@apple32, what a relief that early treatments have already relieved your husband's pain. Has he started radiation now?

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Thank you for the information. I am currently on the waiting list for The Village at Mayo Clinic. If that does not work out an RV park may be possible since the winter visitors should be thinning out toward the end of the month.

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debdoc101 | @debdoc101 | Apr 2, 2023

I would get in touch with the Sarcoma team at MD Anderson. They might have something to offer you.
I know they use proton beam therapy for eye cancer and possibly can precisely isolate the area near your eye without damaging your vision.

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singlelady61 | @singlelady61 | Apr 8, 2023
In reply to @singlelady61 "Thank you for your input. It’s a good feeling to just hear someone else talk about..." + (show)
@singlelady61

Thank you for your input. It’s a good feeling to just hear someone else talk about the same side effects. You to know there are issues that will be with me for awhile. I have my next biopsy in 2 days. From the bottom of my right lung.

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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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2 replies
singlelady61 | @singlelady61 | Apr 8, 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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So sorry for the appointments you have coming up. But they are covering all the bases. I was diagnosed with HPV16 in August of
2021. I had 5 rounds of chemo, 35 radiation treatments. I was good for 6 months. Then it moved to the right lung. Surgery to remove that.
I feel it is good to know the origin for some piece of mind.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 8, 2023
In reply to @erikabcs84 "I havent talked to my oncologist or radiation oncologist yet. That is on 4-10. But I..." + (show)
@erikabcs84

I havent talked to my oncologist or radiation oncologist yet. That is on 4-10. But I will be weighing out all options. I hope I dont need another surgery. I hate what the anesthesia does to me its so embarrassing. Some people are happy and giddy. I am a hysterical basket case and cry very loudly.

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After your oncologist appointments if you need help, advice, or encouragement there are a lot of us here to talk to. And please, when it comes to anesthesia we all get a free pass to be as crazy 😜 as we will ever be. Keep us posted.

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leelee70 | @leelee70 | Apr 9, 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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Hello singlelady61. I am 52 years old and had tongue cancer, with reoccurrence. My last surgery was in December 2020 followed by 30 doses of radiation and 6 chemo that end 2/22/22. I still can't put into words the heart dropping sensation at hearing the news. I just want to send you, though virtual, hugs and let you know you are not alone in this journey. I had radial forearm free flap surgery and radiation/chemo. I was told mine was an aggressive form of Squamous Cell Carcinoma. My heart felt best wishes for you.

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2 replies
singlelady61 | @singlelady61 | Apr 9, 2023
In reply to @leelee70 "Hello singlelady61. I am 52 years old and had tongue cancer, with reoccurrence. My last surgery..." + (show)
@leelee70

Hello singlelady61. I am 52 years old and had tongue cancer, with reoccurrence. My last surgery was in December 2020 followed by 30 doses of radiation and 6 chemo that end 2/22/22. I still can't put into words the heart dropping sensation at hearing the news. I just want to send you, though virtual, hugs and let you know you are not alone in this journey. I had radial forearm free flap surgery and radiation/chemo. I was told mine was an aggressive form of Squamous Cell Carcinoma. My heart felt best wishes for you.

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Did you start taking Keytruda.
That is my Dr’s suggestion.

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