Doctors can't find primary

Hi,

So I originally went to the GP with a lump on my neck. Following blood tests, biopsy, ultrasound CT, MRI the ENT consultant concluded this was a secondary cancer and he was struggling to find the primary. I then had a TORS procedure where they removed a tiny part of my tongue and tonsils. These tissues came back clear, so still no primary. I then had a pet CT scan which also didn't show up any primary site. The lump is still there. 

The next part of treatment will be fitting of a feeding tube and having some teeth taken out Then radio/chemo therapy which will put me out of action for 2-3 months. 

I'm 50, fit and healthy with very little life experience with cancer. The surgeon and cancer nurses have been brilliant, but they seem so overwhelmed. 

My wife and me are confused and stressed by all this and I'm just wondering if this pain and expense will be all for nothing. 

How common is it for there to be a secondary cancer site without a primary? Is it possible that the biopsy can give a false positive? 

Thanks in advance. This site has been really useful for me to get my bearings a little bit. 

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  • Hiya.

    Not sure about the false positive thing. But biopsies are generally accurate (I'm not saying they don't have a failure rate, i genuinely dunno). They usually fall within 3 categories, positive, negative and inconclusive. The inconclusive ones tend to be the most time-consuming ones because whilst not the positive or negative outcome doctors are looking for, it means they can still be highly suspect. This is common with biopsies that only take a small part of the tumour/lymph, rather than the entire thing. When they look at biopsies, they're looking at the cell structure. For example, my wife's breast cells came back as highly irregular, thus cancerous. Even amongst the irregular findings, there's varying degrees. I think that's how they decide how aggressive the cancer is. The more irregular, the more aggressive, if i recall correctly.  Not saying this is how it works in all cases, but it's how it was explained to us.

    As for finding your primary, your body's lymph system usually drains in a certain way, so if one node is enlarged, and cells are found within, it points to a certain area being the culprit. But as you are finding out, it's not always a straight forward task.

  • Another problem with cancer, it needs to be a certain size before it will get picked up with scans. So your primary might be very small, thus they can't locate it.

    Sometimes the primary is never found. That is usually referred to as cancer/carcinoma of unknown primary [CUP]

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