What is the probability of reccurrence with T1N1 tonsil cancer?

Posted by ijones98280 @ijones98280, Dec 4 11:43am

Can anyone speak to the probability of reoccurrence with T1N1 tonsil cancer?

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Hi ljones98280. I'm not sure anyone will be able to communicate a probability of recurrence. As background, I had left tonsil cancer in 2008. Both tonsils and 1 lymph node were removed. 33 radiation and 6 chemo. I seem to recall being told I was stage 4.

For what it's worth, there are a fair amount of long term survivors on this service. I think there's a message in that although there are no guarantees.

Early on I remember periods of "calm" when I was in between follow ups. My mind would then race when I had a check up pending or follow up scan while I was waiting for results. Given what you been through, that will be normal. It took a number of years for me to allow the "calm" to dominate. But given radiation side effects, not a day goes by where I don't remember what I've been through.

Stay vigilant with your checkups, swallowing and neck exercises. Checkups, especially early on, are critical to ensure treatments were effective and to have any issues addressed. If something doesn't feel quite right, ask. As an example, my jaw swelled a year or two after treatments. Obviously concerned me greatly, to put it mildly - it was an infection.

Be well and as patient as you can as you recover. It is a process. Hope this helps

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Hello @ijones98280. I think that question is best answered from your oncologist with known statistics. Everyone is an individual in the way that their body 's immune system fights cancer. So many things can influence that scenario like diet, smoking, alcohol consumption, exercise, stress........ My cancer was T3 N0 and SCC starting in my ear, not tonsil but I have had 4 different metastases over 12 years. As ljones98280 says, keeping up with your recheck scans and visits is so important to catch any recurrence early for further treatment. Any new pain or swelling causes me plenty of stress worrying so I don't delay in having it checked out. Scanxiety is a very real thing, but better than having a new tumor go untreated. I felt quite worried when my original surgery, chemo and radiation were complete as we were no longer treating the cancer, just waiting. So I do an immunotherapy protocol and researched many complementary treatments that I can do to support my immune system in fighting this cancer. Just improving diet, continuing exercise, and taking some supplements like Beta Glucan can give you a boost of confidence. Attitude is also important in this battle and some people benefit from therapy at this point to help hope and faith to overcome worry.
Are you getting regular rechecks since you have finished treatment?

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Mine was close to T1N1 but after almost 23 years it has not reoccurred. I have had more issues relating to the radiation treatments than anything else. However, it is certainly understandable to be concerned / worried about reoccurrence. Everyone who has gone through this nightmare likely thinks about reoccurrence of the cancer, particularly in the first year where as I understand it if the cancer comes back it is more than 70% likely in the first year after treatments. Second year takes the next 20% roughly.
Eat healthy if you can. Stay healthy. Avoid crowds and health risky behaviour. The success rate for cure of this cancer you had is rather high compared to other more common cancers. Try not to dwell on "what if?". Live well with your second chance at life. But if something doesn't feel right or is getting worse as the weeks go by, then certainly get to your doctor or oncologist to have a look-see. Courage.

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@jcl2018

Hi ljones98280. I'm not sure anyone will be able to communicate a probability of recurrence. As background, I had left tonsil cancer in 2008. Both tonsils and 1 lymph node were removed. 33 radiation and 6 chemo. I seem to recall being told I was stage 4.

For what it's worth, there are a fair amount of long term survivors on this service. I think there's a message in that although there are no guarantees.

Early on I remember periods of "calm" when I was in between follow ups. My mind would then race when I had a check up pending or follow up scan while I was waiting for results. Given what you been through, that will be normal. It took a number of years for me to allow the "calm" to dominate. But given radiation side effects, not a day goes by where I don't remember what I've been through.

Stay vigilant with your checkups, swallowing and neck exercises. Checkups, especially early on, are critical to ensure treatments were effective and to have any issues addressed. If something doesn't feel quite right, ask. As an example, my jaw swelled a year or two after treatments. Obviously concerned me greatly, to put it mildly - it was an infection.

Be well and as patient as you can as you recover. It is a process. Hope this helps

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Nasopharyngeal and lymph node Mets. 20 yrs out from radiation/chemo. Now at 68 yrs old battling 2nd bout. Radiation damaged something called vestibule thereby swallowing issues became worse over time. Now biopsy base of tongue cancer, Removed back 1/3 if tongue, Neck dissection, feeding tube. This is tough this time I am alone, trying to do things myself. Shaky, granuloma around PEG tube hurts all the time. I spill, I drop things, can barely take care of myself let alone laundry, and household. Trying to get to appts. Can’t get back to surgeon over an hour away. No family. It sucks. This time after going through 6 mos. There is nothing they can do for microscopic severe dysplasia left behind from surgery. So the say watch and wait…for it to turn to cancer. Not very pro active. Then what more cutting and mutilating of my body. Hell no.

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@hrhwilliam

Mine was close to T1N1 but after almost 23 years it has not reoccurred. I have had more issues relating to the radiation treatments than anything else. However, it is certainly understandable to be concerned / worried about reoccurrence. Everyone who has gone through this nightmare likely thinks about reoccurrence of the cancer, particularly in the first year where as I understand it if the cancer comes back it is more than 70% likely in the first year after treatments. Second year takes the next 20% roughly.
Eat healthy if you can. Stay healthy. Avoid crowds and health risky behaviour. The success rate for cure of this cancer you had is rather high compared to other more common cancers. Try not to dwell on "what if?". Live well with your second chance at life. But if something doesn't feel right or is getting worse as the weeks go by, then certainly get to your doctor or oncologist to have a look-see. Courage.

Jump to this post

Thank you William. Much appreciated.

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