Navigating my way through throat cancer

Posted by rllampton @rllampton, Mar 8 4:14pm

Hello, my wife discovered this site a little over a week ago after I was diagnosed with HPV+ tonsil cancer. I had a couple of throat issues over the winter but just chalked it up to seasonal allergies or a cold. I don't get sick very often. about 10 days ago I called my family because I noticed an infection on my throat. My Dr. did some tests and a CT but referred me to an ENT Dr. which I saw the next morning. She did a biopsy and that Friday I found out I had Cancer. Already been a rollercoaster ride but still don't know much. I am heading to the Mayo in Rochester this Wednesday for a PET scan and meet the medical care team. I have been a bit anxious, but time will tell. I do appreciate all the questions and comments on this site; it has been very helpful as I navigate through this journey. One question for the group, I am sure it varies but were you able to continue working during radiation? Not physical labor, I did those days, but more of an office job.

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

Profile picture for thomason @thomason

Hello @rllampton. After finally discovering the cause (cancerous tumor near vocal cords) of my increasing one-sided ear and throat pain, I was scheduled for radiation sessions. This was almost seven years ago now.

I used to eat at Subway a few times a month, and about one week into the sessions, the radiation began causing noticeable side effects. One of those was increasing difficulty swallowing. I remember going into Subway, ordering a foot-long sandwich, and slowly eating my half. As my husband ate the other half, he seemed even more upset than I was! We both knew that would be the last sandwich I could eat for a long while.

It was over a year later when my voice and swallowing ability finally returned. It was a slow process that involved throat exercises and neck massages to decrease the swelling in my lymph tissues.

Please consider getting a red-light therapy wand. Red light is proven to decrease tissue swelling and promote healing. I am so thankful you found this site. You are in my thoughts. Best wishes.

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@thomason thank you for sharing, my wife and I always shared a subway also. I was/am very nervous about the treatment. I truly appreciate all the wonderful support and advise I have received from this group. So happy that my wife discovered it and showed me.

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Profile picture for rllampton @rllampton

@sandy8043 I know the feeling. I have had total anxiety attacks just thinking about an MRI. I have also had CT but this will be my first PET scan. Heading to the Mayo tomorrow and my PET is scheduled for 6am Thursday.

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@rllampton Tell the tech you're nervous. I think they'll give you something. As I recall its a more open machine than an MRI or CT. Good luck. If you're hungry we love the food at the Hollandberry Pannekoken Broadway. Just a few blocks from Gonda. Use the valet parking. Less stress. Take care.

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Profile picture for rllampton @rllampton

@sandy8043 I know the feeling. I have had total anxiety attacks just thinking about an MRI. I have also had CT but this will be my first PET scan. Heading to the Mayo tomorrow and my PET is scheduled for 6am Thursday.

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@rllampton You are in our prayers if that is okay! Nowadays, a person has to be careful what they say to another person. Oh, well. My husband and I have been together since 1976, and we pray all the time. It is the only thing that has gotten us through this life. Everyone on here is rooting for you.

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If you have the opportunity to receive proton radiation versus traditional photon (x-ray), you should seriously consider doing so. Search these boards, or better yet as AI to explain the difference, specifically for your diagnosis. There are major advantages - worth traveling for if financially workable.

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Profile picture for rllampton @rllampton

@sandy8043 I know the feeling. I have had total anxiety attacks just thinking about an MRI. I have also had CT but this will be my first PET scan. Heading to the Mayo tomorrow and my PET is scheduled for 6am Thursday.

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@rllampton By now you have already had your PET scan. I am just shy of 3mo out from my chemo radiation at Mayo and scheduled for my first PET scan / NavDX on March 24th. I am, like many others, nervous about recurrence. In regards to anxiety with going in to the scan, Ativan is something I took 30min prior to my radiation treatments x 2 / day in December. I'm not claustrophobic but when my face was compressed under the mask plus mouth guard, I experienced anxiety in a very new way. The Ativan plus mental imagery and breathing helped center me for all 20 treatments. Good luck and let us know how you're doing.

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Profile picture for rllampton @rllampton

@sandy8043 I know the feeling. I have had total anxiety attacks just thinking about an MRI. I have also had CT but this will be my first PET scan. Heading to the Mayo tomorrow and my PET is scheduled for 6am Thursday.

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@rllampton Pet scan usually involves a preliminary CT scan followed by you getting a slightly radioactive cocktail to consume. Then you wait alone in a room until your systems have moved the radioactive material through your body where cancer cells often collect this material in abundance. Then you are rescanned and the results are compared. The whole thing takes about an hour.
The scan results will also show scar tissue, which will give you a false impression. Don’t be alarmed from results of a single PET scan. A second or third scan gives a better idea of reality.
You will be somewhat radioactive for a day or two until you wash the material through your system. Some clinics advise you should sleep alone and stay by yourself for 24 hours.
And you fear an MRI? That’s just a big noisy magnet spinning around you in a cylinder. No radiation whatsoever. No one ever glowed in the dark after an MRI. Okay, you will not glow in the dark after a PET scan either. Just trying to lighten the mood. You will be at Mayo. It doesn’t get better that that. Good healing.

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Profile picture for thomason @thomason

@rllampton You are in our prayers if that is okay! Nowadays, a person has to be careful what they say to another person. Oh, well. My husband and I have been together since 1976, and we pray all the time. It is the only thing that has gotten us through this life. Everyone on here is rooting for you.

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@thomason I to believe in prayer and also that we all need to do what ever it is that helps keep us strong and positive. It is hard to do life on your own.

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Profile picture for rebgen @rebgen

@rllampton By now you have already had your PET scan. I am just shy of 3mo out from my chemo radiation at Mayo and scheduled for my first PET scan / NavDX on March 24th. I am, like many others, nervous about recurrence. In regards to anxiety with going in to the scan, Ativan is something I took 30min prior to my radiation treatments x 2 / day in December. I'm not claustrophobic but when my face was compressed under the mask plus mouth guard, I experienced anxiety in a very new way. The Ativan plus mental imagery and breathing helped center me for all 20 treatments. Good luck and let us know how you're doing.

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@rebgen actually my PET scan is happening this morning. I am T the Mayo now. PET scan at 6am and then Dr appointment at 1030. So by lunch I should at least know the plan.

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Had my PET scan this morning and met the surgeon along with a few other members of the team at the Mayo Clinic , will be having surgery in about 10 days on March 23 to remove my left tonsil with about a grape size tumor and a couple cancerous lymph nodes. I will be in a test study on low-dose radiation for tonsil cancer so hopefully if everything goes right, I won’t need the full six weeks. We’ll know more once the surgery happens and the lymph nodes are examined. Glad it was caught early and confident of a good outcome. There is a chance of no chemo or radiation, fingers crossed, but will deal with whatever comes.

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Profile picture for rllampton @rllampton

Had my PET scan this morning and met the surgeon along with a few other members of the team at the Mayo Clinic , will be having surgery in about 10 days on March 23 to remove my left tonsil with about a grape size tumor and a couple cancerous lymph nodes. I will be in a test study on low-dose radiation for tonsil cancer so hopefully if everything goes right, I won’t need the full six weeks. We’ll know more once the surgery happens and the lymph nodes are examined. Glad it was caught early and confident of a good outcome. There is a chance of no chemo or radiation, fingers crossed, but will deal with whatever comes.

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@rllampton
Who is your ENT at Mayo?

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