Tonsil cancer

[Lizzy123]

Hi, I have just been diagnosed with  cancer after the removal of a large lump in my lymph node. The Primary cancer is 1cm from tonsil or so they think after a PET scan.

Im just wondering why they don't offer you to have your tonsils removed? After I've been reading about the risk associated with radiation therapy. I would have thought having them removed would be a better option. Thanks, 

[Katekat]

Hi @Lizzy123 and welcome to the community!

Sorry to hear of your diagnosis, I hope you have been well otherwise? 

Has anyone out there had experience with cancer in or around your tonsil region and can assist Lizzy with her concerns?

[Jules2]

Hi,

I had base of the tongue cancer T4 N2 M0. I had chemo and radiotherapy which was combined with monoclonal therapy and am still around 8 years later. Yes, I do live with many side effects but on the upside I am still upright every day! 

Find out what your options are and then maske a choice. Don't be afraid to ask questions.

[Lizzy123]

Hi Jules, 

Thanks for your response. 

I ended up up getting my tonsils out, I am now doing a course of radiation therapy as a precaution starting tomorrow. 

I’m glad your healthy and got through it 8 years on. 

Regards,

lizzy

[Jolly]

Lizzy, had your cancer spread? I noticed a lump in neck first, so after a heap of scans, a biopsy and PET the theory is tonsil cancer primary and neck mass (lymph node) secondary. Looking at robotic surgery to remove both tumours with a margin. If successful, potentially no or limited radiation/chemo. 

[Andz]

Hi Lizzy, I had T1N2P1M0 and had only one tonsil removed by tors (robot) and a neck dissection to remove 24 lymph nodes. Only one node was affected. 5mm margin was negative. No rad or chemo as 3 DR's were happy with the margins. Cancer has returned to the other tonsil after 12 months. I would question the surgeon why not remove both tonsils.

[Mal72]

Hi mate sorry to hear about the second diagnosis, I’m at that point right now, left tonsil and 3 nodes I’ve had biopsy and 25 nodes taken, they are talking operation only if my chest CT returns ok! What a fricking mind ride it is! How did you go with the other tonsil? I take it rad and chem was done this time?

[MyheroCoolSpy]

May I ask if when should you go to the doctors for Tonsillitis. I have a high tolerance of pain and sometimes I get to ignore if I experience difficult in swallowing. 

[Jolly]

I have no idea, I never had any symptoms that were noticeable prior to the cancer diagnosis. I only found out that the cancer was in my tonsils after a PET scan when a secondary cancer was found in a lump on my neck. Sorry if this is of no use