Confused

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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.

  • Hi  Confused.com.95 and a warm welcome to the forum though sorry you have to be here., Getting PET scan results in a day is very unusual, they are usually sent to your MDT to be reviewed first at their weekly meeting. My understanding of carcinoma in situ is that it is cancer that it has not spread, and has been caught very early and is unlikely to be malignant. As for cancer of unknown primary  the cancer may be too small to detect, it may be in a place where it is shielded from the scan or your body's immune system has taken care of it and it no longer exists. please remember though i have been in healthcare15 years  I am not a professional. take care.

    Eddie

  • Thanks for your reply and time Eddie, I appreciate it.

    The letter my consultant sent me says biopsy and immunohistochemistry ‘showed evidence of malignant cells in cervical lymph node but however the specific source has not been found. You will be discussed by the cancer of unknown primary MDT team on 1st of March’.

    Which is why I’m so confused that the NHS app (which I assume the GP updates?) has listed it as carcinoma in situ.

    Any ideas? Or is it just that it hasn’t spread to my other lymph nodes?

    Thanks again for your time.

  • Hi  and welcome to the community.

    I can understand your upset and confusion with what seems like contrary messages when you’ve read the information on your nhs app. The best person to help with clarification would be your consultant rather than your gp. Carcinoma in situ in my understanding is that there are malignant cells which haven’t yet invaded into tissue. However as malignant cels have been identified in a lymphnode, it would be standard practice for the MDT to discuss this to decide on the most appropriate course of action to try to identify the original source of these cells.

    The Petscan results wouldn’t be available on your app the next day-they need to be reviewed by a radiologist, and this typically takes a bit of time. 

    I appreciate that this is a very worrying time for you, but I think you just just have to hang in there and wait to see what the mdt decides on next. Please come back and update us when you can, and there will be support for you within the community with whatever diagnosis you are given.

    Sarah xx


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  • Hi Confused.com.95, it really is not my place to say what i think as it would just be a guess, your MDT meeting tomorrow, who will have all your results will hopefully have the answers for you. I know it's a worrying time for you, It was for us all and the waiting is awful and the not knowing is the worst, but your team is the right place to get your answers which should be soon, take care.

    Eddie