High Grade DCIS - followed by recurrence??

[hermiracles]

Hope you dont mind me asking this question but it is something that keeps playing on my mind - and although I can't change the past, I'm just wondering how many women have been in this situation? I guess probably a lot - otherwise we wouldn't be here? yes?

Why I'm asking is that in 2003 I was treated for high grade DCIS (with comedo necrosis) - with partial mastectomy and 6 weeks of radiotherapy. 6 of 6 nodes were clear and I was pronounced "98% cured" and a few years later when I was considering becoming pregnant I was informed that there was less than "1% chance of the cancer returning"

Well the cancer did return (HER2 +++) and I quickly progressed to Stage 4 with mets to bone. When I sought a 2nd opinion re treatment I was reassured that the recurrence had nothing to do with the pregnancy. That was good because that was also something playing on my mind.

What did concern me though was reading back over the original pathology reports there was some indication then that there may have been an invasive component. Either way I was not offered chemotherapy at the time (though the Onc. I did get the 2nd opinion from recently said she would have given me chemotherapy at the time.)

As an upsetting side-point, the original surgeon when asked to do a referral letter to another doctor, said that I had been offered chemotherapy but had refused it!!?? Why I don't know - but it makes me wonder now whether he knew I should have been offered chemo, when I wasn't and he was just covering his tracks. Does that make sense? (When I questioned him about his statement in relation to chemotherapy and myself - he refused to see me!!??)

Anyway the point I'm trying to get at is - how can doctors say so confidently "98% cured" etc, etc - without testing for HER2 staus or any further treatment than what I was given? I dont understand this. My current Onc. says "oh we don't test DCIS for HER2 status" but I notice a number of people on this board have had their DCIS tested for their HER2 status - which would certainly affect what sort of treatment one is given.

Also I'm thinking if the DCIS comes back consistently "high grade" - its should be tested for HER2 status. Isn't that possible? Maybe it wasn't in 2003 in Australia??? Maybe my tumour sample is still there and it might be possible to test it now - I don't know.

I hope the questions I'm asking are making some sense. I just feel I wasn't properly investigated or treated in the 1st place... and as I said I realise I can't change the past... it's just disappointing!

Maybe someone can help clarify the situation for me or identify if something similar has happened to you. I feel a bit stuck on this point and would appreciate any suggestions that might bring some closure for me or help me move on.

Thank You! for listening.
Blessings
Hermiracles