Secondary cancer in neck lymph primary playing hide and seek!

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Went to the doctors with a lump in my neck, after a tonne of tests it was confirmed that the lump is a secondary cancer. They have been doing tests to try and find the primary to be able to target the treatment. Last was a biopsy of base of tongue under general anaestetic which I will hopefullty hear the results of this coming Friday. (Though the surgeon said they didn't get a visual on it.)

A couple of questions that some people may be able to help with:

  • The fact that there is definately a secondary and that it's moved into the lymph nodes: does that mean that it's stage 3? I can't seem to get my head around the 'staging.'
  • The nurse said if they couldnt find the primary they'd treat as 'no known primary.' Does anyone know what that might mean? I'm a primary teacher on a one year fixed contract and am worried this is going to put off the school from extending the contract. (The people I work with have been incredibly supportive it's the business heads that I am concerned about.
  • She said if they found the primary in the base of the tongue then the most likely treatment would be 6 weeks radiotherapy at a hopsital an hours drive away. Would driving there and back after radiotherapy be feasible?

If anyone has any thoughts I'd really appreciate it.

Also I guess anyone in here is going through/has been through something similar so I'm really sorry and hope you are getting good treatment and support.

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    It sounds like you've been going through a lot to try and identify what type of cancer you have.

    The online community is divided into different support groups so I'm going to recommend that you join the head and neck cancer group, which is a great place to ask questions, share experiences and get support. 

    This information from Macmillan explains what cancer of unknown primary is. There is also a group for that which you could join if you wanted to by clicking here.

    To join the groups, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could put something about your diagnosis and any proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Brilliant. Thank you for your quick reply. I shall g join that group now and post there. Have a great day.

  • Hi, nice to meet you on here. It sounds like you have the same as me, or it will turn out to be the same as I have. I was diagnosed with 'head and neck cancer the generic term. They found a lump down near the base of my tongue after I noticed what was initially a small lump in my neck on my lymph nodes. I did one session of chemo and then seven weeks daily radiotherapy sessions. If you're not having chemo you will be able to drive yourself in the early days, but I only did 40 mins up and the same back. In the middle to latter stages the painkillers will make you feel rough so driving yourself may be a no no. Don't stress about stages. That's a medical term. It just means its moved from one place to another. But I dont there is lymph nodes cancer as they clean stuff out so the cancer travels there from somewhere else. Hope this helps. Feel free to ask anymore Q's

  • Thank you Doug. Very helpful. Thank you for taking the time,

  • Hi  and a welcome to the online community to you too.

    Thanks very much for taking the time to reply to Rincewindcoco and sharing your experience.

    Can I suggest that you also join the head and neck cancer group, which is a great place to ask questions, share experiences and get support. 

    To join just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"