2nd cancer not tested for Her2

skimble

Hi all. As you can see from my signature, I had a triple positive IDC of 1.6m last year and a DCIS this year.

The surgeon told me that she would consider it a new cancer (not a recurrence or met). The hospital only tested ER so I know that this new cancer is DCIS and that it is strongly ER positive. They told me that they wouldn't test for Her2 or ki67 for a DCIS. Is that typical?

I would have liked to know whether the 2nd cancer is also Her2 positive and if it is it started (maybe) and grew while receiving Herceptin (2nd cancer was discovered after half a year of Herceptin infusion. I'm receiving my last Herceptin infusion next week).

I was thinking that if the 2nd cancer also was Her2 positive, I would ask my oncologist for Nerlynx after Herceptin. My oncologist did not recommend Nerlynx unless I absolutely wanted to do everything (his words).

I'm thinking of taking the biopsy sample/paraffin block to another hospital to test Her2 or is that unnecessary?

Thanks!

stephincanada

I would want to know if the dcis was Her2+. If you developed a new Her2 tumour while on Herceptin, I would seriously consider taking Nerlynx. Dual targeted therapy might be a good idea if that is the case.

Another relevant factor might be how close the dcis margins are. I had dcis that wasn't even tested because my margins were 4 mm. I wanted to know if it was er/pr positive, and if so, I would have taken an anti-hormonal. I was told because the margins were large, I didn't have to worry about invasive disease.

Keep us posted and good luck!

skimble

stephincanada, that's exactly what I was thinking.

I now see that her2 positive status may not mean the same thing for a DCIS -- a kind forumite directed me to more resources.

I could still choose to receive nerlynx for the IDC in the right breast but I wasn't sure whether the side effects would be worth the benefits unless there was evidence that herceptin was not as effective... I guess I'll need to know more before asking for the dcis sample to be tested for her2..