Confused about diagnosis of breast cancer

Hi all! Advice needed after mastectomy. It's a year since I had my first cancer appointment and I feel a bit lost in the system and don't know what to do. I felt a soft lump about 3 years ago but the GP said it seemed normal and repeated mamograms didn't show anything. Then I had discharge and got sent to the breast clinic, told it wasn't serious to come back if I was worried, which I did, and after a lot of faffing around I saw another consultant and they finally found something. After several biopsies they said it was DCIS and a mastectomy would be curative with no need for any chemo or radiotherapy. As the consultant was away for the summer a different one did the mastectomy and I was told there was no spread to the nodes under my arm. Then I saw a fourth consultant for the results and was told the MDT hadn't discussed it yet but from what they could see it was DCIS. I assumed I'd be notified if any different but now I'm not so sure. A few months ago I accessed my GP records online and looked at the list of conditions and they have recorded the diagnosis as mixed ductal and lobular cancer. I have previously had a very bad experience with getting the correct treatment for a child so I am somewhat distrustful of the system and know things don't always work properly. However, I don't want to over react to this. It's probably just a data input error or weird way of recording things by my GP surgery but I don't want to take the risk that something has fallen through the cracks and I should have possibly had different follow up and treatment.  A few months ago I phoned the specialist nurse and asked for more information about the diagnosis, copies of whatever they sent my GP, but have heard nothing. It's not easy to get a GP appointment. What do I do now? Should I try and chase this? Where do I start?

  • Hi Jane

    Looks like you've had a right time of it. I was diagnosed back in 2018, initial diagnosis was DCIS but post surgery, this was upgraded to invasive ductal and invasion lobolar. It made no difference to the treatment I had as all cancer had been successfully recovered from both breasts. I did have radiotherapy as I had lumpectomies.

    I'm guessing from your post that you are worried that your diagnosis has been upgraded to invasive and as such think you should have radiotherapy?

    If it were me,even if it's just to put my mind to rest, I would call the consultant's secretary and ask for a time to speak with your consultant to find out your post op diagnosis and if they feel you would benefit from radiotherapy/other treatment.

    Let us know how you get on xx