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 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
