1. < Head & Neck Cancer

Questions about de-escalation radiation

Posted by smittyfromcuse @smittyfromcuse, Feb 10, 2023

I was diagnosed with HPV+ OSCC in November 2022. I had a level 2 lymph node removed by my ENT that tested positive with less than 1 cm ECS. Then a left neck dissection with 31 lymph nodes negative. Next a TORS surgery to remove primary tumor of 1cm in left tonsil and base of tongue. All margins clear. I was classified as stage 1. My surgeon recommended a clinical trial of 2 weeks of radiation. However because I did not have a NavDX test before my lymph nodes were removed I don’t qualify. My NavDX was 95 before TORS and a zero score on the second test post surgery. I’m being worked up for 5 weeks of 50gy radiation. I’m having a hard time accepting this and if the only reason I’m not a candidate for 2 weeks at my current treatment center is an administrative issue with my test results I want to explore options. I read the Mayo Clinic will provide 2 week radiation therapy as a normal course of treatment for qualifying patients. Since I’m dealing with side effects from the surgeries I really want to minimize radiation side effects. Is it worth getting s second opinion? Is there a significant difference in side effects between the 5 and 2 week protocols? I was told I would only need radiation on my left neck and no throat structures. I think I’m going to call the Mayo Clinic in Florida today as my radiation simulation is scheduled for 2/16/23 at my treatment center and I may want to reconsider.

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

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 10, 2023

@smittyfromcuse, it is worth contacting Mayo Clinic to have them review your records. Click this link to submit a request for a second opinion http://mayocl.in/1mtmR63

I'm also tagging fellow members who have experience with oral squamous cell carcinoma (OSCC) like @loli @sepdvm @srm @jimthomasintl @calenbd @hrhwilliam @anybody10. Some also have experience with care at Mayo Clinic.

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1 reply
smittyfromcuse | @smittyfromcuse | Feb 10, 2023
In reply to @colleenyoung "@smittyfromcuse, it is worth contacting Mayo Clinic to have them review your records. Click this link..." + (show)
@colleenyoung

@smittyfromcuse, it is worth contacting Mayo Clinic to have them review your records. Click this link to submit a request for a second opinion http://mayocl.in/1mtmR63

I'm also tagging fellow members who have experience with oral squamous cell carcinoma (OSCC) like @loli @sepdvm @srm @jimthomasintl @calenbd @hrhwilliam @anybody10. Some also have experience with care at Mayo Clinic.

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Thank you. I called this morning and it was very easy to link my current patient portal to the Mayo Clinic so they can review my records. I already have a video consult with a medical Oncologist next Friday. My current care team is on board with me getting this second opinion.

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2 replies
chanderson | @chanderson | Feb 11, 2023
In reply to @smittyfromcuse "Thank you. I called this morning and it was very easy to link my current patient..." + (show)
@smittyfromcuse

Thank you. I called this morning and it was very easy to link my current patient portal to the Mayo Clinic so they can review my records. I already have a video consult with a medical Oncologist next Friday. My current care team is on board with me getting this second opinion.

Jump to this post

This is a great approach I am really glad you are getting a second opinion. My NAVDX score was similar to yours and I went through 7 weeks of radiation with significant side affects and weight loss.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 16, 2023
In reply to @smittyfromcuse "Thank you. I called this morning and it was very easy to link my current patient..." + (show)
@smittyfromcuse

Thank you. I called this morning and it was very easy to link my current patient portal to the Mayo Clinic so they can review my records. I already have a video consult with a medical Oncologist next Friday. My current care team is on board with me getting this second opinion.

Jump to this post

That's fantastic, @smittyfromcuse. I'll be interested to hear what you learn from your consult (if you wish to share.)

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smittyfromcuse | @smittyfromcuse | Feb 17, 2023

Unfortunately I am not a candidate for the de-escalation protocol. There are several factors in my disease progression that point towards having the standard course of treatment. I can't go back in time but If I had questioned some decisions made by my ENT and cancer surgeon late last year I could have spared myself additional treatment. Without going into details there were decisions made based upon false and/or unknown information that delayed my surgeries, including my own decision to delay a biopsy 2 weeks. So I'll be proceeding with 5 weeks of radiation and concurrent cisplatin chemotherapy. My disease journey so far involves pain and suffering from treatment, then just enough time to heal before more pain and suffering. This has repeated 3 times so far. If it means no evidence of disease and no recurrence it will be worth it but its at a cost of potentially permanent side effects. I know there are many cancer patients worse off than me and I'll improve my attitude and get back to being positive but I need a moment to absorb this news and adjust my expectations.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 23, 2023
In reply to @smittyfromcuse "Unfortunately I am not a candidate for the de-escalation protocol. There are several factors in my..." + (show)
@smittyfromcuse

Unfortunately I am not a candidate for the de-escalation protocol. There are several factors in my disease progression that point towards having the standard course of treatment. I can't go back in time but If I had questioned some decisions made by my ENT and cancer surgeon late last year I could have spared myself additional treatment. Without going into details there were decisions made based upon false and/or unknown information that delayed my surgeries, including my own decision to delay a biopsy 2 weeks. So I'll be proceeding with 5 weeks of radiation and concurrent cisplatin chemotherapy. My disease journey so far involves pain and suffering from treatment, then just enough time to heal before more pain and suffering. This has repeated 3 times so far. If it means no evidence of disease and no recurrence it will be worth it but its at a cost of potentially permanent side effects. I know there are many cancer patients worse off than me and I'll improve my attitude and get back to being positive but I need a moment to absorb this news and adjust my expectations.

Jump to this post

@smittyfromcuse, I appreciate your coming back with an update, although I know it wasn't the news you were hoping for.

Members of the Head & Neck Cancer support group (https://connect.mayoclinic.org/group/head-neck-cancer/) are here to journey with you as you prepare for 5 weeks of radiation and concurrent chemotherapy. Feel free to ask questions, vent, share a story or two any time.

When do you start radiation?

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1 reply
smittyfromcuse | @smittyfromcuse | Feb 23, 2023
In reply to @colleenyoung "@smittyfromcuse, I appreciate your coming back with an update, although I know it wasn't the news..." + (show)
@colleenyoung

@smittyfromcuse, I appreciate your coming back with an update, although I know it wasn't the news you were hoping for.

Members of the Head & Neck Cancer support group (https://connect.mayoclinic.org/group/head-neck-cancer/) are here to journey with you as you prepare for 5 weeks of radiation and concurrent chemotherapy. Feel free to ask questions, vent, share a story or two any time.

When do you start radiation?

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I start treatment on 3/13. My simulation is scheduled for 2/28 and I'll know more details but I was told 5 days a week for radiation and one for chemo. I have scheduled appointments with my speech pathologist for a barium swallow test, and a consultation with a nutritionist. I also engaged with a naturopathic doctor who is a cancer specialist to see what she can do to support my vitality during treatment. I'm as prepared as I can be and anxious to start treatment so I can finish.

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