Cancer of unknown primary - Although it was never found I worry everyday that it's still in my body

I was diagnosed of cancer of unknown primary about 8yrs ago ,  it was  metastatic squamous cell carcinoma I had a radical neck dissection followed by radiation ,although the primary was never found myself oncologist discharged me and just said if I noticed any changes to get referred back to him ,has this happened anyone else ,I worry everyday  that the primary is still in my body 

  • Hello CIRVANNAH, 

    It must be a bit unsettling when you're diagnosed with cancer of unknown primary and even though that was 8 years ago and you had treatment, there is understandably this worry that comes with the not knowing where the primary was as it was never properly identified. There is useful information on our website on coping and support when you have cancer of unknown primary which I hope will be helpful to you. 

    If you ever have any questions or simply wish to talk things through with our cancer nurses, they have a helpline you can ring and it is a free service. The number to call is 0808 800 4040 and it is open Monday to Friday from 9am to 5pm. 

    It is very distressing to have to live every day with this uncertainty but I think it's important to follow the doctor's advice that if you notice any changes to get referred back to see him. It sounds like you are doing very well after treatment and that it was successful if the oncologist discharged you which is very promising and if you notice anything you are concerned about make sure you flag it as soon as you can. 

    Best wishes, 

    Lucie, Cancer Chat Moderator 

  • Thankyou that is very helpful ,I will speak to the nurses also