Triple Neg DCIS?

Eldub

My apologies if this is the wrong forum for this question.  I just found out (2 months post lumpectomy, 3 weeks into rads) that my grade 3 Comedo DCIS was ER-/PR- .  It had appeared weakly positive at initial biopsy, so this result was a surprise.  (Thank goodness I insisted they re-test for ER/PR.  The original biopsy was botched and they only got one tiny sample, so when the results were so weirdly weak (2%/10%), I wanted to have them confirmed and insisted they test the tissue removed at surgery.)  The cancer center I am going through does not test DCIS for HER2 status, as apparently there are no established treatment protocols to follow depending on the results.  And I'm told DCIS is usually HER2 positive - at about twice the rate of invasive bc, in fact.  My Oncologist (who I adore) is also nervous to test me for HER2 status because if it's NEGATIVE, then that puts me in a strange never-never land of having TN DCIS - which apparently no one knows anything about.  ??

Is there any information out there about TN and DCIS?

Thanks so much!

 Linda

cheranthia

Hi Eldub,

Sorry you had to join this club! I hope you'll find a lot of good info here on this site. I was originally diagnosed with a 4 cm tumor, Stage IIa. After chemo and radiation, it completely disappeared, but the pathology of the tissue taken during my lumpectomy showed a very tiny DCIS. Turns out it was also triple negative. My doctor likened it to a "weed" sprouting off the original. I'm no expert, but my guess is that because TN tends to grow so fast, most of us don't discover it at such an early stage. My oncologist told me that DCIS does not respond to chemo and that's why it was still there, even though the main tumor was gone. They removed it all with clear margins and I followed up with radiation- standard after a lumpectomy. I'm coming up on my 2-year anniversary and my status is still NED.

It's frustrating not having many treatment options, but it's really good that your BC was found at Stage 0. FInding it earlier rather than later is always preferable - triple negative or not. If it does turn out to be HER-2 negative, that's also good. Our HER-2 positive sisters can benefit from taking Herceptin, but it's better not to need it in the first place. 

I hope you find this helpful. Best to you!

Cherie 

Eldub

Hi Cherie,  Thanks for your response!  I appreciate your perspective a lot.  I think you are right - I am very, very lucky that this was found so early.  I'm so glad that your tumor responded so well to chemo and rads - fantastic!

You can bet I'm going to stay on top of all the follow-up screening they're recommending....

Thanks again!

Linda