Diagnosed at 24 and not able to find comparative data

I was diagnosed 9/02 with a high grade, comedo-type DCIS w/necrosis.  I had at least 3 large lumps, very painful, the largest being about 4cm in size.  Very aggressive also ... it only took 6 months for the tumors to develop from barely palpable to enveloping the entire breast.  Mastectomy was my only option, so I opted for bilateral to avoid going through this again in the future.  Initial findings on the lymph node biopsy were clear, but an experimental stain noted cells present on 1 lymph node.  My tissue samples then went out to Vanderbilt for a 2nd opinion on pathology.  My oncologist does not believe that I should receive chemo because my margins of invasiveness are < 1cm.  I have been told that I am everything from stage 0 (because it is technically DCIS) to stage 2 (due to a multitude of walnut to lime sized lumps in my left breast)  The final breast surgeon I settled on says I am closer to stage 1.  Based on the above info does this seem correct?  

Doctors say that they do not understand how the tumors had become so large, but not largely invasive.  I am now 16 weeks pregnant.  My ob/gyn and oncologist are watching me closely for any problems.  I know even being node - I have a %30 chance of recurrence, and am worried that being pregnant & not having had the chemo will decrease my chances of living to see 30.  I read of DCIS not being painful, or palpable, not being dangerouse etc ... but I do not think these statements apply to what was going on in my body.  Can you please help shed some light on this?  Thanks!

[CCF-RN,MSN-JS]

Dear jwhitfie, When determining adjuvant treatment any degree of invasive cancer would take precedence over DCIS.  Also taking into account the positive lymph node.  Staging is based on tumor size, lymphnode involvement and whether or not there is evidence of metastasis (tumor spread).  If what is meant by "margins of invasiveness are < 1cm" is that the area of invasive cancer is less than 1 cm. the tumor would be rated a T1, one positive lymphnode that is not large is an N1, and no metastasis, then your cancer would be staged at stage 2 (because of the positive lymph node).  

At this point, being so far from surgery and with the pregnancy, keeping a close watch makes sense.  The pregnancy itself does not promote cancer growth, the concern with pregnancy is the need to delay needed treatment due to concerns of harm to the baby.

[truelori1]

Hi there -- I just wanted to invite you to our online group called Sisters in Survivorship for young breast cancer survivors -- you may find a lot of help and support there.  Most of the women are in their early 30s, we have had some younger and some a little bit older.  If you go to the groups on yahoo you can find it under Sisters in Survivorship.  If you have any questions you can email me at ***@****

Lori