Rare Tongue Cancer

Hi just got the news, I have a very rare tumour at the very back of my tongue that's not operable due to its location. I'm waiting on MRI and PET Scan appointments. Radiotherapy and maybe chemotherapy has been mentioned. Has anyone this rare tongue cancer......

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  • Hi Mary,

    After a visit 2 weeks ago to the ENT department at my local hospital I was also  diagnosed with a cancer behind the tongue, I've just been informed that I'm going for  MRI and CT scans next week but not sure what happens after that, I would presume a biopsy is next but I've not had any notification of when that might be or what the treatment options are, I have heard though that biopsy results are taking up to 5 weeks to come back, hopefully this might be an exaggeration, with luck I'll get some news soon.

    I'll keep you updated on my progress but I do hope all goes well with you.

    Best wishes

    Peter

     

     

  • Hi sorry you've found yourself here but if  I can help I will. Yes ct scan mri then biopsy.  Cancer results are reviewed  at m d t meeting once a week so  usually it's a 2 week wait then you see oncologist to discuss next stage. In my case I was 63 days from being put on cancer pathway ti treatment starting seems a long tkne but there's a lot of behind the scenes planning. . My blog is www.radioactiveraz.Wordpress.com it will give you an idea of what to expect. If I j can do it anyone can 

    Hazel 

     

  • Hi Hazel

    Thank you giving a breakdown of the time scale on how things progress, I have read your blog and it has been an inspirational read and your right about Google, it does send you into despair and I now avoid it as much as I can!

    I think the main worry most of people have when newly diagnosed is the side effects of the forthcoming treatment, which after reading many of the blogs seems to be quite uncomfortable, I just hope being an older man of 69 that I have the courage and stamina to get through it.

    Best wishes.

    Peter

     

  • Hi Peter thank you for reading my blog glad d you found it helpful. I did it originally just for me snd our family but just it's reached over 50,000 people scary fir a little lass from Yorkshire. Best advise is remember your won't get all the side effects the most common is dry mouth it's not pleasant  but it doesn't last forever. I have limited saliva but it's still improving now I am at approx 95 % during day  What you need to remember head and neck cancers are eminently curable ok treatment is hard but outcome is good. 
    don't stress about the lump in your neck it's your lymph nodes doing what they should do. When I think about it my lump  was there in February 2018 I just ignored it whilst in  Spain and home jn May then treatment started mid July by then I had several more nodes that were affected. I know ladies in their mid 70 s who have successfully completed treatment and recover so at 69 you are a spring chicken. If I can help just ask. 
    dovyoy know your h p v status ? It's a question to ask along with your T n m status I was T2N2NM tumour size 2-4 cm nodes 2 nodes later 3 no metastasis. 
    Hazel x

Reply
  • Hi Peter thank you for reading my blog glad d you found it helpful. I did it originally just for me snd our family but just it's reached over 50,000 people scary fir a little lass from Yorkshire. Best advise is remember your won't get all the side effects the most common is dry mouth it's not pleasant  but it doesn't last forever. I have limited saliva but it's still improving now I am at approx 95 % during day  What you need to remember head and neck cancers are eminently curable ok treatment is hard but outcome is good. 
    don't stress about the lump in your neck it's your lymph nodes doing what they should do. When I think about it my lump  was there in February 2018 I just ignored it whilst in  Spain and home jn May then treatment started mid July by then I had several more nodes that were affected. I know ladies in their mid 70 s who have successfully completed treatment and recover so at 69 you are a spring chicken. If I can help just ask. 
    dovyoy know your h p v status ? It's a question to ask along with your T n m status I was T2N2NM tumour size 2-4 cm nodes 2 nodes later 3 no metastasis. 
    Hazel x

Children
  • Hi Hazel,

    Thank you for the reassuring words and side effects information, your blog is an essential read for all of us afflicated with this awful cancer.

    I've not had a biopsy yet, in fact I've had no communication from my doctor at all except a letter from the hospital saying I've to go for a CT scan next week, so not sure what my status is as yet, what the ENT doctor did show me however was a photo of the cancer at the base of my tongue taken when they put the camera down my nose, it's a picture I'll never forget!

    Hopefully all the status details will come after the biopsy.

    Best wishes

    Peter

     

     

  • Hi Peter sorry for delay we're just at Portsmouth waiting for ferry to Spain yes life does go on after this waft cancer. Just to give you some hope it will feel doom n gloom just now I know I've been there. The ct scsn will help pin point where to do the biopsy so don't worry it's a week trodden path. I know it seems slow but it's hiw the planning etc is. Like I've said I was 63 days from putting on pathway to treatment starting. If I can help I will. Thsnk you for kind words re blog. 
    hazel 

  • Hi Hazel,

    It's great to hear your getting your life back on track again, hope you a safe journey to Spain.

    Had a rough day today with the sporadic sweats that seem to be a regular feature now plus the pain under my armpits which I presume will be lymph nodes trying to cope, at least I hope that's what it is!

    Once again thanks for your reassuring words, my two scans are next Tuesday and Wednesday so hopefully things will start to get moving soon.

    Enjoy your stay in Spain.

    Best wishes

    Peter