We are Macmillan. Cancer Support
I'm the wife of an 84 year old facing a partial glossectomy in a few days time. Although scans show no evidence of cancer in the nodes of the neck, he has been offered a selective neck dissection on a 'just in case' basis. Apparently, in around one in three cases of tongue cancer treated fairly early, some cancer cells will have migrated to the lymph nodes though they may not show up in tests.
I've been quite frightened by the possible extra risks of neck dissection, such as painful, stiff shoulder, droopy lower lip, loss of feeling in the tongue. We both feel it's a lot for an elderly soul to take on, in addition to losing part of his tongue, which will take quite a time to recover from. Basically, we're trying to make a tough decision, and we both want his time after surgery to give him the very best chance of a decent bit of living, and we both also accept that time may be short.
Any silver sufferers out there who have made this decision, or have any advice, experience to offer: we would be grateful for your input as we face this decision in the next very few days.
Hello Canada44. Welcome to the Macmillan community, although I am sorry that your husband's diagnosis of tongue cancer has brought you here. Well almost five years ago I was told that my mouth ulcer was indeed a well-differentiated squamous cell carcinoma and as it was on the floor of my mouth it required extensive surgery followed by radiotherapy to ensure it's destruction.
If you click on my name / avatar it will take you to my profile where there are more details.
Although I am younger than your husband, I am still a ' retired ' housewife who made it through the treatments .... admittedly I found the radiotherapy the hardest to get through, but I was unlucky and got a particularly bad reaction to the radiation. Do bear in mind that no one is the same and we are all affected in different ways to both surgery / radiotherapy and chemotherapy if that is also part of the treatments.
Yes, I had a bilateral neck dissection as part of my operation .... the surgeon wanted to make sure that there was no chance of any stray cancer cells there. So I was ' cut ' from ear to ear and to be honest it hasn't caused me too many problems .... any effects that are still noticable are nothing compared to the fear of the cancer recurring.
My earlobes were numb for a while, but to a point the feeling has returned. My scar line can sometimes feel ' tight ' but I was advised to use Bio Oil on my scars and they have helped both the appearance and ' feel ' of them.
My lower lip is slightly numb-ish on one side, but it doesn't bother me too much now and that could also be the consequence of the surgery when removing / replacing my floor of mouth.
I have found that the sides of my tongue feel rather numb too .... again it's put down to the surgery and possible RT damage to the nerve ends. Initially I had problems with my tongue manoeuvre but with the help of tongue motion exercises it has improved somewhat .... basically I am getting used to the ' new me ' and have more or less adapted to suit.
My advice would be to listen to your husband's Consultant and take it from there, I can't say which way to go but in my case I went for the long-term procedure and this year should see me discharged from my surgeon's care ....
Oh, we do a Head and Neck Cancer group here on site which you may like to join where we have all been through a head / neck cancer of one form or another and you can ' talk ' to others. There are also a couple of Carers groups too, where there are some lovely people who are going through much the same as yourself looking after their loved ones .... so have a look. Take care and best wishes to you both.
Do really appreciate your taking the time to share your own experience: you sound both brave and positive, and that is a help to us, who must face the surgery and after as an unknown. We feel properly grateful that he has had a good long life, and we have to be philosophical about the outcome of this.
Good luck with your own battles, and our best wishes.
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?