Hi All,

Found this site recently after looking for some answers to help my mum-in-law. She was diagnosed last year with tongue cancer and had a partial glossectomy with removal of lymph nodes on that side of the neck. Now approximately a year later she has been diagnosed with a recurrent tongue tumour, opposite side to before with lymph node involvement. We don't know all the details yet but it sounds like a total glossectomy and laryngectomy are being advised. This is pretty radical surgery and I think my mum-in-law is considering not going ahead with the surgery. What is life like after this kind of surgery? It seemed bad enough for her before.

Any help/advice gratefully received

Hello Kirkby

Please read Kevin's story of his experience. Hope that helps.

Best wishes
Vinod (it's hot in Jakarta!)

Thanks for replying so quickly to mt question Vinod.

After a meeting with the clinical team my mum-in-law is now being offered the surgery or chemotherapy (the latter seems more palliative). Both of which she is considering. I know prognosis is on an individual basis but are there any estimates of survival after 1 year, 5 years with each treatment? What I worry about is her clinician has not given a prognosis which with this decision i think is vital. If there is little difference in survival times is it not better to go with chemotherapy rather than a major operation which would mean she could not speak or eat again? I guess it is a quality of life issue.

Many thanks

Hello,

My name is Alison and my husband underwent a total glossectomy and partial upper palate removal in July 2002, aged 53. It is certainly a complex and grim process, but can be coped with along with the right support network in place. We would be happy to share experiences with you if it will help, so please let us know.
This is only my personal view, but if surgery is recommended then I would seriously consider it, because should the treatment fail then the alternative surgery may be too late.
(We were told that Mike would die of asphyxiation within six to nine months without surgery, so I appreciate no real decision to make there!)

It is a rough road ahead regardless - I wish you all the very best.

Alison

Hi Alison,

Thanks for replying. It is great to hear that Mike had such a major operation and is still doing well nearly 5 years later.

My mum-in-law has now met with the multidisciplinary team and they have told her surgery is the only option, otherwise she only has 3 months left. She is still uncertain of what to do. I guess she is just tired and we have to encourage her to keep on fighting. I think she also wonders how she will cope with not being able to eat or speak anymore. But I guess there are many ways that she can communicate with us and we just need to find what is best for her. How does your husband communicate? How did you cope after your husband came out of hospital, is full time care needed or is it possible for patients to be quite independent? Did Mike have a PEG tube? I am wondering if one person is needed all the time or if different members can take it in turns to help out, if we all learn how to use the PEG feeding tube etc.

I think the all the family feel in limbo at the moment waiting for her to make a decision (hopefully for surgery) and then we can plan for the future.

Thanks for reading my post and the advice, it really is appreciated,