Dear Cyber Family

I would like to share with you some good news about my mum's MRI Scan results which we received today.

The cancer has been caught early!!

My mum has been diagnosed with a primary base of tongue cancer which is 2.2cm in size. A meeting of doctors etc was held last week apparently and it has been decided that the best course of treatment in her case will be to remove the tumour by surgery. At the moment they think she may not need radio therapy. I am keeping my fingers crossed.

I can't describe the relieve mum and I felt when he told us. We had prepared ourselves for the worst news.

The guy whom we saw today was actually quite puzzled to see us. He said that he was the Radio therapy specialist and according to mum's notes she will hopefully not have to see him. We tried to ask him questions about mum's forthcoming surgery but he said we have to speak to the consultant/surgeon at mum's appointment on 7th January.

On 14th January mum has to be admitted to hospital to have a PEG inserted. (I am a little worried about this still, although from your posts which I have read the PEG is a good thing to have).

On 22nd January they are admitting her at 6pm, then the operation to remove the tumour is on the 23rd January.

I am relieved that the cancer has been caught early and that mum will hopefully not require radio therapy however I do still feel concerned about the surgery side of things. I am worried about how much of her tongue will they remove? will they rebuild it? how? will she be able to talk and be understood? I know they will need to do speech therapy with her. How long will it take before she gets better? etc etc.

Please if any of you could write to me about your experiences of how you felt before surgery and post surgery and how you are coping now I would be most grateful.

Thank you so much for being there. I don't know how I would cope without the support of kind people, total strangers on this web site. Actually, I don't feel like you are strangers. To me it feels like I have known you forever.

Thanks again and hope to hear from you soon.

My love and prayers for you all.

Kathleen

Kathleen, that is wonderful news! I cannot answer your questions as my tumor was elsewhere, but there are many tongue patients on this forum who will be checking in soon, I am sure.

I am SO happy for you and your mum! If that isn't an early Christmas gift, I don't know what is.

Joanna

In June, I was diagnosed with Stage 3 cancer and had over 60% of my tongue removed. The amount they removed depended on the tumor....they kept taking little slices off until they knew they had removed all cancerous cells. It was rebuilt from muscle in my arm, but there are other areas on the body that can donate the muscle. My speech has only been slightly altered. I am clearly understood by everyone, and even got back to singing with my church choir. I didn't require any type of speech therapy at all.

Most survivors that I know can speak very clearly, and they had alot more tongue removed than what your mum is facing. I even know a man who had his entire tongue removed and rebuilt and he speaks very well.

The biggest problem I have deals with lack of saliva, but that was brought about by my radiation therapy. Your mum will be lucky to not have to go through that experience.

I want to warn you...the description of the surgery sounds much more graphic than what it looks like when it's all over. The scars I have are barely noticeable. People wouldn't know I had anything done if not for the gauze I have to wear due to a side effect that's still lingering on.

It sounds like everything is turning out great for your family. I will keep praying for you all so that it keeps going well.

Kathleen,

I will try to post more tomorrow, but briefly, my daughter had base of tongue cancer also. Her tumor was 3 cm. They actually only removed a small portion of the tongue itself and she has very little trouble with her speech. I wouldn't let that aspect of it worry you.

Also of little concern is the scarring. Her scar is really not all that bad and the doctor says they can fix most of it with surgery later if it does start to bother her. Again, not a big concern.

One thing that does seem puzzling is why they would insert a PEG tube if she is not having radiation. My daughter just had a nasal feeding tube after her surgery. I believe she had it in for about 12 days after surgery. It wasn't very pleasant, but for a short term use, it seems more appropriate than a PEG tube. I think I would question that.

Right now, be glad it was caught early and try to enjoy the holidays. I'm sure other people will post more reassuring answers to your questions in the next few days.

Rosemary

Kathleen,

I too had tongue surgery (1/3 removal), removal of the floor of my mouth and a neck disection to remove the lymph nodes. I didn't have radiation and/or chemo. I had the nose feeding tube for seven days after my surgery and it was removed when I went home. If you have specific questions, please feel free to write to me. Take care.

Anne.