Herceptin yes or no

bravenewworld,  I'm sorry that you've been diagnosed and are now faced with this decision.

Herceptin is not approved for those who have pure DCIS.  My guess is that while your initial biopsy showed DCIS, your final pathology must have included some invasive cancer.  Your diagnosis therefore would not be considered to be DCIS (even though DCIS was present) - it would be changed to IDC.  And your treatment will be based on the amount of and pathology of the invasive cancer, because this is a more serious condition. 

My suggestion is that you ask for a copy of your pathology report from your mastectomy and also ask your doctor for more information about your diagnosis.  The question as to how much risk you expose yourself to by skipping Herceptin depends to some extent on how much invasive cancer was present, and the pathology of that cancer. Current treatment guidelines (here are the NCCN Treatment Guidelines for patients) suggest that Herceptin be considered for those who have invasive tumors that are 6mm in size or larger (if grade 2 or 3 or if ER/PR-) but some doctors recommend Herceptin for even smaller tumors.  If your tumor falls into this smaller size range, then you are in the grey zone on whether or not Herceptin is indicated and there may be less risk in passing on Herceptin. However if your tumor is 1cm in size or greater, then there would be few if any doctors who would agree that you could give a pass to Herceptin. HER2+ breast cancer is very aggressive and Herceptin is effective at bringing the risk level back down to 'average' levels. 

Once you get a copy of your pathology report and more information about your cancer, I'd suggest that you pose this question again in the HER2+ forum on this discussion board. That's where you'll find all the women with experience with Herceptin.

Good luck! 

Donna, how you are feeling is perfectly normal!  A diagnosis of breast cancer brings out a whole new range of emotions and feelings and fears. It's overwhelming. The great thing about this website is that no matter how strange you think your experience or feeling is, chances are that there are others here who've had the same experience or felt that same thing.  

With regard to your question, I don't know much about Herceptin but my understanding is that yes, if you have some rogue cancer cells floating around in your body right now, the role of Herceptin would be to track them down and kill them off.  You'll find a lot more knowledge about Herceptin here: Breast Cancer Forum: HER2/neu Positive Breast Cancer  (I hope the links works).

Please check out the Her2+ board that Beesie mentions above. Herceptin has very few side effects, it is not a chemotherapy. Herceptin targets a protein that your particular cancer needs to grow, and it kills off that protein. It doesn't kill all the fast-growing cells in your body like other cancer treatments can.

I have been getting Herceptin for a year and a half now. I don't have any reaction to it at all. I'm sure others will share side effects that have happened to them, but overall this is a VERY tolerable drug. And it saves tons of lives!

Herceptin may not be approved for DCIS only, but doctors out there certainly use it for that. So please, talk to your oncologist and don't assume that you have microinvasions. You could certainly have a DCIS only, stage 0 diagnosis, and the Herceptin could be something your doc wants you to do as "insurance." Because Herceptin is easy to tolerate, it's worth considering.