HER2

SpTeach

My wife has been fighting Invasive Ductal Carcinoma since October.  She finished her last chemo on April 7th and had her bilateral mastectomy on May 5th.  The mastectomy was very rough and she still has two drains in.  We kept being told, "It's a good prognosis".  When they did her mastectomy they removed her port, I questioned it at that time because we had not received the final pathology reports.  They said it was fine and took it out.  This past Tuesday we went for an oncology apt and were told that her Cancer had become HER2 positive and that she is now facing another year of infusion every three weeks.  She now has to have surgery this coming Tuesday to replace the port they removed.   This has been such an emotional roller coaster.  We thought we were out of the woods and then everything topples over.  I'm angry they didn't listen about the port.  I am angry that they didn't prepare us for the possibility of an HER2 diagnosis.  Am I out of line or is this normal?

Thank You

mjm1

Hi Sp,

Mum didn't have a port so i can't comment on that, but I did meet a lady who was fitted with a type of expander for her reconstruction when she had her mastectomy that blocked the view of the heart when they do the heart scans - seems like no-one thought about the fact that she might have her2 and need heart scans. these sorts of things are soooo frustrating - there's enough stress without additional avoidable surprises.

I'm confused about the comment "it's become her2+"? does this mean that they didn't know what type she had when giving her chemo? Or that they found different results from the surgery pathology compared to the earlier biopsy? I don't know how rare it is to have HER2+ found in the whole tumour after surgery when not found in a biopsy - if its rare perhaps they had enough reason to think they knew it wasn't her2+ - I don't know.

My family found any changes in plans pretty traumatic, at least til we got used to them, so I can imagine thinking treatment is over then finding it not would be very upsetting.

On a positive note, Herceptin affects some people more than others, but is probably going to be easier on your wife than the chemo was. And in case you've read any scary old stats on her2+ breast cancer, since herceptin and the other targetted treatments have been developed, HER2+ often has a good prognosis these days.

Best wishes!