1. < Head & Neck Cancer

What treatment options are available to reccurrence of H&N cancer?

Posted by ijones98280 @ijones98280, Mar 1 12:41pm

Can anyone speak to their experience with reoccurrences? THINKING that there are non-rad options that are successful, but just trying to get an idea of options. I currently don’t have a reoccurrence, but am headed in for my 6 month check next week. Thank you in advance for any experience or thoughts as this is probably a well written about subject.

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ijones98280 | @ijones98280 | Mar 1 12:53pm

I would also be interested to hear about re-radiation if anyone has experience with this.

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Mar 2 7:50am

Hi IJones,
If I recall you were staged at T1N1. Now you are coming up on a six month check and likely the worry and angst is keeping you on edge. I can honestly tell you I know of no one at your initial stage level who had reoccurrence within the first five years, let alone the first six months, and I have known quite a few patients. Stage 3 or 4 is an entirely different conversation.
I can also attest to knowing no patient who wasn’t on edge concerning the six-month check, years 1,2,3,4 and finally the five year check. And this is followed by the thousands of thoughts our brains try to convince us that practically every ailment, every oddity, every twinge is the reoccurrence of the cancer. For me it has been 24 years. I will let you know when that reoccurrence feeling finally goes away.
At my five year check my oncologist told me congratulations as now I was considered to have the same odds of having cancer as the general population, to which I responded “Great.” “That’s where I was when I got cancer!” Much to his dismay.
It’s normal to feel the way you do. I as well would be interested to hear of anyone who was re-radiated soon after stage 1 SCC P16+. In the meantime, would you let me know how your six-months check went and how you are doing with the overall recovery?
Good healing and of course “Courage.”

REPLY
4 replies
ijones98280 | @ijones98280 | Mar 2 11:08am
In reply to @hrhwilliam "Hi IJones, If I recall you were staged at T1N1. Now you are coming up on..." + (show)
@hrhwilliam

Hi IJones,
If I recall you were staged at T1N1. Now you are coming up on a six month check and likely the worry and angst is keeping you on edge. I can honestly tell you I know of no one at your initial stage level who had reoccurrence within the first five years, let alone the first six months, and I have known quite a few patients. Stage 3 or 4 is an entirely different conversation.
I can also attest to knowing no patient who wasn’t on edge concerning the six-month check, years 1,2,3,4 and finally the five year check. And this is followed by the thousands of thoughts our brains try to convince us that practically every ailment, every oddity, every twinge is the reoccurrence of the cancer. For me it has been 24 years. I will let you know when that reoccurrence feeling finally goes away.
At my five year check my oncologist told me congratulations as now I was considered to have the same odds of having cancer as the general population, to which I responded “Great.” “That’s where I was when I got cancer!” Much to his dismay.
It’s normal to feel the way you do. I as well would be interested to hear of anyone who was re-radiated soon after stage 1 SCC P16+. In the meantime, would you let me know how your six-months check went and how you are doing with the overall recovery?
Good healing and of course “Courage.”

Jump to this post

Thank you William. Absolutely it is the upcoming check up that is causing me to be edgy. Really appreciate your thoughts and input.

REPLY
Jody aka mojo244 | @mojo244 | Mar 3 7:06am

I know it’s a difficult time but try not to stress awaiting your upcoming checkup. Cancer thrives on stress and sugar so do your best to not feed it.
Wishing you clear results,
MOJO

REPLY
1 reply
ijones98280 | @ijones98280 | Mar 5 5:46pm
In reply to @mojo244 "I know it’s a difficult time but try not to stress awaiting your upcoming checkup. Cancer..." + (show)
@mojo244

I know it’s a difficult time but try not to stress awaiting your upcoming checkup. Cancer thrives on stress and sugar so do your best to not feed it.
Wishing you clear results,
MOJO

Jump to this post

Thank you Jody.

REPLY
1 reply
clevyjam | @clevyjam | Mar 6 11:32am
In reply to @ijones98280 "Thank you Jody." + (show)
@ijones98280

Thank you Jody.

Jump to this post

Hi there
I have/had salivary duct cancer. I was treated in 2015 with surgery and radiation at Mayo (Rochester)
I had my reoccurrence in 2021 and was again treated with surgery and radiation. They had to remove my facial nerve.
I don’t know which - the surgery or radiation - caused my troubles but I developed loud tinnitus which has not abated. I also got a bone infection that wouldn’t heal and ended up having to do trapezius flap surgery where they used muscle and tissue from my back to cover the open area on my cheek.

I’ve been free of cancer since then. It’s a little difficult socially but I’m alive and kicking. Life is a little different (as I used to teach) but it’s still good.

REPLY
1 reply
ijones98280 | @ijones98280 | Mar 6 11:58am
In reply to @clevyjam "Hi there I have/had salivary duct cancer. I was treated in 2015 with surgery and radiation..." + (show)
@clevyjam

Hi there
I have/had salivary duct cancer. I was treated in 2015 with surgery and radiation at Mayo (Rochester)
I had my reoccurrence in 2021 and was again treated with surgery and radiation. They had to remove my facial nerve.
I don’t know which - the surgery or radiation - caused my troubles but I developed loud tinnitus which has not abated. I also got a bone infection that wouldn’t heal and ended up having to do trapezius flap surgery where they used muscle and tissue from my back to cover the open area on my cheek.

I’ve been free of cancer since then. It’s a little difficult socially but I’m alive and kicking. Life is a little different (as I used to teach) but it’s still good.

Jump to this post

Thank you clevyjam.

REPLY
michgirv | @michgirv | Mar 7 10:54am
In reply to @hrhwilliam "Hi IJones, If I recall you were staged at T1N1. Now you are coming up on..." + (show)
@hrhwilliam

Hi IJones,
If I recall you were staged at T1N1. Now you are coming up on a six month check and likely the worry and angst is keeping you on edge. I can honestly tell you I know of no one at your initial stage level who had reoccurrence within the first five years, let alone the first six months, and I have known quite a few patients. Stage 3 or 4 is an entirely different conversation.
I can also attest to knowing no patient who wasn’t on edge concerning the six-month check, years 1,2,3,4 and finally the five year check. And this is followed by the thousands of thoughts our brains try to convince us that practically every ailment, every oddity, every twinge is the reoccurrence of the cancer. For me it has been 24 years. I will let you know when that reoccurrence feeling finally goes away.
At my five year check my oncologist told me congratulations as now I was considered to have the same odds of having cancer as the general population, to which I responded “Great.” “That’s where I was when I got cancer!” Much to his dismay.
It’s normal to feel the way you do. I as well would be interested to hear of anyone who was re-radiated soon after stage 1 SCC P16+. In the meantime, would you let me know how your six-months check went and how you are doing with the overall recovery?
Good healing and of course “Courage.”

Jump to this post

Hi William,

What would the conversation be if stage 4a, pT2, pN2b perineurial invasion, skeletal muscle involvement, extra nodal extension? The cancer is an unknown type, Mayo couldn't figure it out and final path is unspecified, high grade carcinoma. First scans are in April. A genomic panel was done and we have an appointment with genomic specialist April 1.
I am the caregiver and also concerned about the amount of muscle wasting that occurred very quickly. My husband is 3 weeks post radiation/chemo and we weren't told anything about this problem. Any info would be helpful.

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Mar 7 12:00pm

The conversation likely would not be the same. However, I am not a physician, I am an engineer so I only know what I know and I know that half of those stage letters I do not know.
All I will say is we have to face these health battles or give up and likely die. We have that choice. Would I know my choice if my cancer returns? Not at this time.
I think being the caregiver is more difficult than being the patient. You have little choice out of love or simple decency. The patient however is allowed to choose and fuss and complain.
Three weeks post radiation is often the bottom before the body starts to recover. Doctors, unless they have gone through this don’t really know how all of this battle effects our body and to that end, each of us have different post issues.
Scans, especially early on don’t really tell us a lot as scar tissue often resembles cancer clusters.
Hope for the best but prepare for the worse. I or others here can likely help you though this journey.

REPLY
1 reply
ijones98280 | @ijones98280 | Mar 7 12:28pm
In reply to @hrhwilliam "Hi IJones, If I recall you were staged at T1N1. Now you are coming up on..." + (show)
@hrhwilliam

Hi IJones,
If I recall you were staged at T1N1. Now you are coming up on a six month check and likely the worry and angst is keeping you on edge. I can honestly tell you I know of no one at your initial stage level who had reoccurrence within the first five years, let alone the first six months, and I have known quite a few patients. Stage 3 or 4 is an entirely different conversation.
I can also attest to knowing no patient who wasn’t on edge concerning the six-month check, years 1,2,3,4 and finally the five year check. And this is followed by the thousands of thoughts our brains try to convince us that practically every ailment, every oddity, every twinge is the reoccurrence of the cancer. For me it has been 24 years. I will let you know when that reoccurrence feeling finally goes away.
At my five year check my oncologist told me congratulations as now I was considered to have the same odds of having cancer as the general population, to which I responded “Great.” “That’s where I was when I got cancer!” Much to his dismay.
It’s normal to feel the way you do. I as well would be interested to hear of anyone who was re-radiated soon after stage 1 SCC P16+. In the meantime, would you let me know how your six-months check went and how you are doing with the overall recovery?
Good healing and of course “Courage.”

Jump to this post

Hi William,
I had my 6 month check yesterday. She indicated everything looked good. She only completed a visual, but there were no scans, which freaks me out a little.

REPLY
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