Tongue Cancer - Diagnosed two days ago

Hi, I am a 32 year old single mum to my two year old daughter and I found out two days ago that I have tongue cancer.  I'm waiting for an appointment for an MRI scan and a CT scan which should hopefully be within the next few days and this can find out if the cancer has spread.  I then have to have an appointment to discuss a treatment plan but I have already been told that this will involve cutting out the lump in my tongue and a neck dissection to remove Lymph nodes.

It's all such a lot to take in and I'm trying to come to terms with the fact that in a few weeks time my life will never be the same again.  I have read some horrific stories about what I have to come and I am willing to face any of it so long as I stay alive for the sake of my daughter.  I have only told my parents and one friend so far, no piont telling everyone until I have more facts after the scans but I'm concerned at how far the cancer could have spread.  I have had this painful lump on my tongue for six months but the doctors kept giving me prescripotions for other things which has delayed diagnisis.  I have also had pain in my throat and more recently I've noticed ear ache and jaw ache and neck pain.  I'm trying to stay positive until I know more information from the scans but I know I will crumble if it has spread beyond repair.

From reading stories from others on here and other websites, I'm a little confused that I haven't yet been told what stage the cancer is at.  Isn't that something that could be identified from my biopsy?  How could the doctor be so sure that I will need a neck dissection before knowing what stage it's at?

None of this has come of much of a surprise.  I googled my symptoms of a persistent ulcer back in April, before I first went to the doctor and was alarmed to see the word "cancer" everywhere I looked.  I had all the symptoms but was just hoping I was wrong.  The first two doctors I saw about this reassured me that it was nothing more sinister than an ulcer, which put my mind at rest a little, how wrong were they?!  I am just glad that I stayed persistent and kept going back to the doctor about it.  I don't think they treated it as an urgency as I don't fit in with the usual risk factors, I've never smoked, I hardly drink and I'm not in the right age bracket.  I'm now feeling annoyed at the waiting game.  I want to know when the scan will be.

It helps to come on here and read other threads but I still don't think it has fully sunk in yet but when it does, positivity for the sake of my little girl will just have to get me through.  I would love to keep hearing stories from others or any advice would be greatly received.

Nicola xx

Parents
  • Hi Nicola,

    Thanks for sharing your case here. My mom also having tongue cancer which similar as yours. She just did surgery on 21/3/14 and 1/4 of her tongue cut. Doctor told her to follow up the radiotherapy. Can I get your advice whether radiotherapy is really good? do you have any serious side effect? Do you take any alternative medicine? Some tooth need to remove is to do radiotherapy?

    Sorry for asking so much. hope to hear from you soon!

    Take care

    Ping

  • Hi Ping,

    Firstly, sorry to hear that your mom has tongue cancer and well done to her for getting through the surgery.

    If her doctor has recommended radiotherapy then I would urge her to go ahead with the treatment. I won't lie, it is tough but the benefits far outweigh the side effects. The side effects aren't pleasant - sore mouth, throat and neck, blistered skin, some hair loss, ulcers in the mouth, oral thrush, loss of taste buds (temporary) and a very dry mouth. However, it's unusual for most of these side effects to be long term. I am ten weeks post treatment and I feel pretty good now, most of my side effects have gone but I was quite poorly during the last two weeks of treatment (I had 30 sessions over six weeks) and I was at my worst for a couple of weeks after the radiotherapy ended, but all of the side effects are manageable with pain relief, mouthwashes etc. I was taking strong painkillers to help with the pain and I was given some cream to help the blistered skin. Eating becomes a problem with radiotherapy to the tongue, I was unable to eat for a while, but your mom may not find this to be too much of a problem if 1/4 of her tongue has been affected. Mine was over half of my tongue so possibly a bit more tricky to eat.

    I had some teeth removed before radiotherapy but I understand that not everybody needs this, so your mom may not need to have any teeth removed. I took the advice of my consultant and allowed my teeth to be removed and to be honest, I don't miss those teeth!

    I hope I have answered all of your questions without putting you off but I feel it's best to be honest, I for one would prefer to know what to expect. The techniques of radiotherapy used these days is better than ever so in my opinion I would take all treatment on offer.

    I wish you and your mom all the best and feel free to ask me anything else.

    Best wishes,

    Nicola

  • Hi Nicola,

    Thanks a lot for answering my question. It's really helps. I feel so sad for the side effect on radiotherapy and I hope that she could cope. She's 50+ years old, I feel the pain for her even she not yet go for radiotherapy. My friends and family recommend her some health medicine such as Bio-Strath supplement and Sabah Snake Grass which is herbal cancer cure. I'm not sure whether those are really good for her.

    After your radiotherapy, there's nothing to follow up anymore? Can you now eat normal food (bite meat, vegetable, fruits)? My mom current condition only can eat porridge and soup, hardly can bite food.

    Best wishes for you too! Take care.

    Ping

  • Hi Ping

    Sorry about your mum's illness. I am sending you the link to our information on herbal remedies.

    There is currently no strong evidence from studies in people that herbal remedies can treat, prevent or cure cancer.

    Best wishes

    Jane

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