Worried

Diagnosed with breast cancer Recently diagnosed with breast cancer
1

Hi 
After a diagnosis for DCIS In March and a very difficult ( Covid delayed ) route to a simple mastectomy I finally had my pathology results last week . They found a larger area of DCIS than anticipated 90mm and sadly a 2mm invasive ductal cancer that is HER2 positive and hormone receptor negative . Clear lymph nodes .

I was advised on 11th May that the MDT recommendation was no further treatment and was elated . I was simply expecting to wait my reconstruction.
However yesterday my nurse contacted me and said the oncologist now wanted to see me and was referring me back to the MDT meeting tomorrow . she seemed surprised at this as the original recommendation was in writing and mentioned he had now done a Predict test .

i am now waiting and worrying to be contacted further. I thought I was done for treatment but who knows now . Is this usual ?

why would they change their mind ? I cannot sleep or focus on anything . I have no further appointment - they anticipate it may be by telephone -and must simply wait.

is this usual ? What can have changed since the last MDT meeting ?

(I am 58 and post menopausal .)

thank you 

2

Hi nicolaruth, sorry to hear things have been on the move again and you’re back in the anxiety boat.  In my experience it isn’t that unusual for people to have a second appearance of cancer with further investigations and revised plans.  For HER2+ the usual treatment is herceptin.  Was that mentioned to you?  I wonder if perhaps your case could have been borderline and has been through a second review panel?  That’s just me speculating but the decisions are never as clear cut as we realise.  They will always have your best interest at heart but it’s a lot for you to cope with mentally.  I hope you get your results soon. Sending hugs. Xx

I recommend you post a message to the nurses if you want to get a better understanding of what happens behind the scenes: forum.breastcancernow.org/t5/Questions-about-primary-breast/bd-p/primarybc 

3

I had this almost exact scenario. They told me no further treatment but then changed their mind once they realised it was Her2 and advised I start on herceptin - which means it has to be given alongside chemotherapy. That was all fine actually. Bit of a shock tho.