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Which stage?

Tobiassquidgey
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Hi There

I was initially diagnosed with stage I tongue cancer for which a 2cm tumour was removed by glossectomy and proved 6mm deep. So it was decided I required a neck dissection. 

However the results have come back showing 2 nodes containing cancer cells despite they did not show up on either an MRI nor CT.

I am due to start radiotherapy but does this mean because it is metastatic I am actually grade III?

The surgeon is surprised by the results as he was pretty adamant I would prove clear based on the scan results but hasn't explained what stage I realistically am. 

Because I have gone from thinking it had been caught early enough to suddenly understanding it had already begun to spread I'm not sure what to think. I appreciate 2 nodes is a very small percentage which is a good sign as such but am I to now understand my survival/reoccurrence prognosis has lowered?

I am also wondering how my SLE will react with missing lymphs and with radiotherapy. I am already on prednisolone and azathioprine for 34 years and cannot be put forward for chemotherapy. The surgeon cannot answer my questions as it isn't his area and my rheumatologist hasn't bothered to see me since 2019 despite I am supposed to be reviewed every 6 months.

Immunology also do not understand why I have lymphopenia but am not catching numerous viruses but haven't investigated. Could the lymphopenia be a cause of the long term immunosuppressive medication or the SLE and could the cancerous ulcers have come about because of the SLE which nobody paid any attention to despite I did alert people or because of the lymphopenia?

Really confused!

Thanks 

  • Hello and thank you for your post,

    I am sorry to hear about your diagnosis of tongue cancer and I can appreciate you have some questions. I will do my best to answer them.

    I am afraid that we are not the best people to know what stage of cancer you have. The stage is dependent on the size and locations of your tongue cancer and if it has spread to the lymph nodes and/or to another part of the body.  Your cancer may be seen as a locally advanced cancer and not an advanced (metastatic) cancer because it has not gone to another part of your body. However, I cannot be sure of this and I cannot tell you the number stage (1-4) of your cancer. Do discuss this with your specialist doctor or nurse. 

    Knowing the stage of someone's tongue cancer can be difficult so you may find our information about it helps, you can see it here.

    Radiotherapy is a local treatment which means it treats the area affected by cancer. Having it does not mean your cancer is necessarily metastatic (stage 4).  

    I am afraid that I am not sure how having cancer in your lymph nodes or having radiotherapy will affect your SLE if indeed it does. You tell us it has been some time since you have been seen by your rheumatology team so I do think it would be good that they know about your current situation.  They may also want to communicate with your cancer team. So please do contact them, if you have a rheumatology nurse specialist or you could contact your rheumatology consultant's secretary, and let them know what is happening. Hopefully, if the the two teams can discuss your case they can make decisions about how best to treat you. 

    You may also want to contact Lupus UK for information and support, you can see their website https://lupusuk.org.uk/

    I am afraid that I do not know why you have lymphopenia.  However, looking online at what causes it I can see that long term use of steroids can sometimes cause it.  It does not usually cause problems. I cannot see that it causes tongue cancer.  I also cannot see that there is a risk of SLE increasing the risk of tongue cancer.

    We have information about the risks and causes of tongue cancer on our website, you can see it here.

    I hope this information has been helpful. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline 

  • Offline in reply to CRUK Nurse Caroline

    Hi Caroline 

    Many thanks for your help. Knowing that it is most likely 'advanced' rather than metastatic is very reassuring as I understand the radiotherapy is to treat the area as precaution rather than actual tumour.

    This would make some sense to me!

    I also have spoken to my Rheumatology Team, who as you suspected, were not aware. 

    I have always had mouth ulcers since 17 due to the lupus and the Consultant believes the 125mg longterm use of azathioprine is most likely the culprit of it turning cancerous. Sadly because the dosage was increased before Covid then never followed up the situation most likely became a disadvantage. 

    We have now stopped the Aza, heart and lung test to be referred and follow up in 4 months. 

    Feel a lot more positive now as it seems more precautionary treatment rather than drastic. 

    Much Appreciated 

    Sam

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