Hello,
About 5 months ago I found a lump in my neck. I was sent for a CT scan and they found a lump on my neck (cervical) lymph node 2.3cm and on both of my ovaries, the largest being 5.3cm.
My blood test came back as normal.
My core biopsy of the neck lymph node came back as suspicious for cancer and my immunohistochemistry confirmed evidence of malignancy but they didn’t know the source. The consultant said I’d be passed over to ENT and oncology for cancer of unknown primary.
I visited my ENT yesterday who looked down my nose and throat and said he didn’t think there was cancer in my throat or nose.
i then had my PET scan, which I was told was to find the primary source of cancer.
24 hours later I’ve logged into my NHS app, and it has listed ‘carcinoma in situ of skin and neck- within nodes’.
I now don’t know if I have cancer of unknown primary or carcinoma in situ? I feel like a fraud and a liar for making my family upset, because carcinoma in situ means it isn’t cancer? Am I right in thinking that?
But surely the PET scan results wouldnt have come through so quickly? Is it carcinoma in situ because they haven’t found the primary source or because there is no primary source?
im being discussed in oncology MDT on Friday but I’m literally tearing my hair out… I don’t know what to believe.
i very clearly asked the ENT consultant yesterday if I had cancer of unknown primary and he said yes. The only thing that could change that would be the PET scan… which again, surely wouldn’t have come back to quickly?
From a super upset 28 year old.
PET/CTs are reported very quickly. It’s quite possible that the results are through and if you are being discussed at the MDT today it will have that report. MDTs by virtue of their moniker are made up of many specialists. The carcinoma in situ description, typed into your notes by a clerk, has to be taken in context which is what the meeting is doing. I know waiting is rubbish but I’m sure you will get an answer soon
Best of luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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