DCIS - Hospital won't do HER 2 testing.

MotherofFour

I was dx with high grade (comedo necrosis) DCIS and probable Paget's Disease. It is very early. . .microcalcifications, vice tumor, that they suspect are multi-focal as there are a lot of new ones that have appeared, though they only biopsied one set. The other micro calcifications look similar on the MRI. The tissue tested as PR-, ER+. . .but only 15% positive (some people said that was low, another said that was actually pretty high so I'm not sure which is correct). They do not plan on testing for HER 2 as they said it is not required, because it is DCIS. They said they (military hospital) use to not test for anything for DCIS, but the standard of care changed so now they test for PR/ER. If it is determined that it is invasive, they will test for HER 2, but they don't consider Paget's invasive even though it is on the nipple and not the duct. I am concerned because I read that most Paget's Disease is HER2+, and if I have a recurrence or mets later in life won't they need to know if the original cancer was HER 2+? Is this something they can test later or do they need to do it now?

SpecialK

One of the drivers for whether or not to do Her2 testing is whether it will change your treatment.  If you are not requiring chemo and targeted therapy for your diagnosis now, the question becomes whether testing is warranted.  If an invasive component is found they will test that for Her2 status.  If you have an invasive recurrence or mets down the line, that tissue will be tested and your treatment would be dependent on what it shows, but I am not sure knowing whether you are Her2+ now would have any bearing at that point either, because again, it wouldn't change treatment at the time of that diagnosis. On your question regarding your ER return at 15% - your percentage is determined by looking at 100 cells under the microscope, for you 15 out of 100 stained for estrogen receptors, thus the 15%.  That is not a super high number - many here have 100%, but is still considered positive.  I am guessing that your MTF is testing for ER/PR now for those with non-invasive diagnoses because there is a school of thought that there may benefit from hormonal therapy for certain patients.

april485

They did not test my DCIS for Her2 status and told me they never do because as SpecialK stated above, it would not change my treatment.  As for ER positivity, I was GREATER than 95% ER+ so I am thinking that I am what you would call on the high side. But, any positivity and they may ask that you try to take an AI or Tamoxifen. Tamoxifen is the only drug approved for DCIS but many MO's prescribe Aromatase Inhibitors like Arimidex off label if tamoxifen is contra-indicated (which it is with me due to family history of strokes and cerebral hemorrhage.

HuntingtonNY

April485, Hello,

I was looking at your history and noticed you had two surgeries one month apart on the same breast. How did they decide to do a second lumpectomy? I has my first ( and hope only) 2 weeks ago. DCIS. I am a bit confused about the future and how to proceed.

Thanks,

M

GoodConstitution

My surgeon said the standard clear margin is 2mm which she has never got because more DCIS keeps showing up with each re excision. The last margin was clear at .5mm, a posterior margin near my chest wall. So she can do another re excision but...

Have you received your pathology report from the surgery yet?

april485

Hi Huntington -  one of my margins was very close after the first surgery (less than 1mm) and since I was doing a partial breast rads clinical trial, they required a minimum of 3mm in every area of the lumpectomy. So, unfortunately, I had to go back in again. Hope that answers your question!