Diagnosed with DCIS ER+/PR+...need suggestions..

BTW - I just noticed that SHARE in Manhattan has a program called Young Women and Breast Cancer: The Empowerment Series.   http://www.sharecancersupport.org/services/educational_programs/young_women_and_breast_cancer_th/?lang=en

Last month, (oops, too late!) it featrured Dr. Tessa Cigler, an oncologist at Cornell, who talked about hormone therapy and young women.

Here's her bio page if you want to contact her for a consult (and another opinon):  http://www.weillcornell.org/tecigler/index.html 

You might be interested in that or the other programs at SHARE, or Gilda's Club NYC (in the village) or the Young Survival Coalition.... 

 SHARE main page:  http://www.sharecancersupport.org/  - there are specific support groups for for Young Women w/BC:

http://www.sharecancersupport.org/services/support_groups/you_wom_s_con/

and also for DCIS:

http://www.sharecancersupport.org/services/support_groups/dcis_support_group/

 Gilda's Club NYC and/or Northern NJ:  http://www.gildasclubnyc.org/  and http://www.gildasclubnnj.org/  (Hackensack)

 Young Survival Coalition - also NYC and Northern NJ   http://www.youngsurvival.org/   there's a message board, etc. on the main site   http://www.youngsurvival.org/newyorkcity  and  http://www.youngsurvival.org/northernnewjersey  (office in Paramus, they also co-sponsor a monthly meeting with the Hackensack Gilda's Club, held at Gilda's Club)  I know some people from this site who are also involved with YSC in NYC.

DCIS is always stage 0.  this means that it has no invasive component--it's only in the ducts and can't go somewhere else. It can,however, turn into more serious invasive cancer (stage 1, 2, 3, or 4), so this is why it's important to get it out. 

 DCIS is divided into 3 grades (how normal/abnormal they look and how fast they're growing).  1 is low-grade (the cells are the most like normal cells and probably less like likely to turn into invasive cancer); 3 is high grade (most abnormal); and 2 is in between. 

So with DCIS (always stage 0) and Grade 1 (least worrying), you've got the best pathology you can have and still technically have breast cancer.

 The margin is the amount of healthy tissue around the DCIS in the part they excised (took out).  The wider the margin, the more likely it is they got all the DCIS out with the surgery.  The smaller the margin, the more possibility some DCIS may still be there (residual DCIS).  So the size the margin is really critical in determining what kind of further treatment you might need.

 It's hard for me to imagine the pathology report didn't include the size of the margin, but I am not a doctor, so who knows.  But if it were me (and it is me), I would want to know how large the margin was.   I think this is something you should ask the doctor at Sloan Kettering about.  

Hello.

I'm sorry that you're having such a difficult time.  I see that you have had second opinions, but did you have a second opinion on the actual pathology slides?  Even though your surgeon said that the margins are clear, I would not trust that information unless it was confirmed in a pathology report.

Unless you have this information on a pathology report, you cannot be entirely certain that all of the DCIS was cleanly removed.  If you do not want to have your slides evaluated again, I would strongly urge you to consider the re-excision or radiation at a minimum.  I had both.  I won't call this process easy, but it is doable.

Also, I am angry that anyone has to go through this situation.  Sweatyspice is right; it is BS!  I cannot believe that your pathology report is incomplete.  We cannot possibly make informed decisions when we are only given minimal information.

I don't know how far you want to travel but Doctor Michelle O'Shea of Summit Breast Care, in Sparta, NJ is a good doctor. Very personable.  Her number is 973-729-6517.