Oncology appt advice - base of tongue

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Hi all,

I'm here as a my husband has recently been diagnosed with cancer in his tongue. He is now 3 weeks post Op , after the removal of the mass. He's recovering really well. 

It is apparently an extremely rare type of cancer in the tongue we are told, mucinous adenocarcinoma, that could be mets originated from his bowel. But they have yet to find any other ca on a Pet scan. Awaiting further investigations and referral to colon team.

In the post operation appt the surgeon said that the margins were not wide enough due to the location of the tumour by O.8 cm. So that my husband may now need radiotherapy. We have an oncology appointment next week. 

I have lots of questions and would value your input and advice from your past experiences if you would like to share.

We have not had any type of staging information, did you receive staging/prognosis at your first oncology appt?

What questions would be useful to have in mind ready for the appt?

What types of radiotherapy/chemo/Immuno did you receive for base of tongue?

What side affects short and long term have you had after these treatments?

Has anyone had a false clear pet scan? 

Any info would be great , thank you in advance

  • Hi  welcome. 
    Staging is completely different in HPV positive oral and oropharyngeal cancer so might not be of much help. We do get tumour and number staging but HPV isn’t graded. 
    I was T2N0M0 which means my cancer was less than 4 cm with no nodal spread or distant metastasis. Because I had no nodes involved I was stage 2 which meant I avoided chemotherapy. 
    I was told to avoid googling survival statistics but that HPV positive cancers are largely curable and that my radical radiotherapy was aimed at cure ( cure rates are 90%but I wasn’t told that exactly) 

    I had a base of tongue cancer and had six weeks of radiotherapy 

    Have a look at my blog linked below. There are some details on what to expect. 
    Long term I have reduced saliva but that’s liveable with  

    I can’t help with the PET. I had a false positive after treatment. 
    Macmillan have info on what to ask at appointments. It’s a bit generalised but still helpful


    I would suggest that you go in with your husband and take notes or even records the session. 
    Finally take a look round the group. There are members at various stages along the road. Reading some of their posts might be helpful too 

    Best of luck 


    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 


    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Morning, thank you for replying it is much appreciated. Yes i think the max fax team have struggled to give us in-depth information as the cancer type is not known in head and neck.

    The mass was 7cm by 5cm. My husband is only 35 so I'm concerned about long term affects of radiotherapy....

    I've had a look at your lovely blog and I'm glad your longer term symptoms are manageable. 

    Hope we get some positive news next week, 


  • Hi Dani  has covered the basics. Radiotherapy is hard it was  61 and I did it so am sure your husband will cope. Best advise trust your team stay off dr Google any questions as here or ask his team. Take treatment one day at a time and before yiu know it he will be in recovery. I was given staging as such at first oncology meeting but HPV tumours are staged differently. 
    my blog below gives my experience of radiotherapy there’s a few pointers in there. 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Thank you muchly, I will take a look at your blog