Bi-Lat Mast what to do next?

I had extensive high grade DCIS with comedo necrosis, along with a microinvasion.  Due to the amount of DCIS, I had to have a mastectomy.  One margin was 1mm; the others were larger.  I had an SNB and fortunately my nodes were clear.  Because it was DCIS that was near the margin, my oncologist and surgeon both agreed that no further treatment was necessary. 

As it was explained to me, DCIS is confined to the milk ducts, and while there will always be a small amount of breast tissue left after a mastectomy, it's unlikely that any milk ducts will remain.  So whereas radiation would have been recommended if I'd had IDC near the margin (since IDC might be found within the remaining breast tissue) because it was DCIS and DCIS isn't found in breast tissue (only in milk ducts), my risk of recurrence is very low.  For this same reason, Tamoxifen wasn't recommended.  Numerous studies have shown that the recurrence rate after a mastectomy for DCIS is generally in the range of 1% - 2%.  While Tamoxifen can reduce recurrence risk by about 40%, if the risk is 2% at most, the benefit would be less than 1%.  Therefore my oncologist felt that for me, the risks from Tamoxifen would outweight the benefits.

Here is some information about this from outside sources:

- This site explains that radiation and Tamoxifen are options for those who choose lumpectomy but are less likely to be required for those who have mastectomies for DCIS.  For example, it says "If you choose to have a mastectomy, there's less reason to use tamoxifen. With a mastectomy, the risk of invasive breast cancer or recurrent DCIS in the small amount of remaining breast tissue is very small. Any potential benefit from tamoxifen would apply only to the opposite breast."  http://www.mayoclinic.com/health/dcis/DS00983/DSECTION=treatments-and-drugs

- This site talks in detail about the treatment options.  It explains that "If a simple mastectomy is chosen as treatment for DCIS, radiation therapy is not needed following surgery."  http://www.dcis.info/treatment-options.html   On another page, the following is said about the recurrence rate after a mastectomy: "Studies indicate that 1 to 2% of patients treated with mastectomy will have a recurrence of DCIS or invasive cancer, either in the same area or elsewhere in the chest wall."  http://www.dcis.info/treatment-mastectomy.html

- On the ACS site, the surgical options for DCIS treatment are listed as a "lumpectomy, usually followed by radiation therapy" and a "simple mastectomy".  It also states: "Recent research suggests that 5 years of treatment with tamoxifen can lower the risk of invasive cancer developing after treatment of DCIS with lumpectomy and radiation therapy" making no mention of Tamoxifen or radiation for those who have a mastectomy.  http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Breast_Cancer_Treatment_by_Stage_5.asp

I know that different docs view things differently, so your oncologist might recommend something different and only you can decide which approach you are comfortable with.   One other comment though.  I'm surprised that your pathology report says "DCIS grade 2-3/3 with foci suggestive of microinvasion".  Is this the final pathology report?  If so, I would expect more precision.  I can understand a statement about "foci suggestive of microinvasion" after a biopsy, but after a lumpectomy or mastectomy, when all the breast tissue is available to be examined, the pathologist should be able to say with certainty whether there were microinvasions present or not.  This is something that you might want to ask your oncologist about.  It probably wouldn't change your treatment, unless you happened to have quite a few microinvasions, but it is still something that's important to know.  If you have any microinvasions at all, you would be reclassified to Stage 1 rather than remaining Stage 0 and personally that's something I would want to know.

Hope that helps.  

I was dx with ADH (pre-cancer) once in each breast 18 months apart, after the 2nd dx my doctor put me on tamox (family history of BC and OC). 6 months after starting tamox I was dx with DCIS in the right breast. I had bilat mast, final path report showed no micro-invasions more ADH in the right breast and pre-ADH in the left breast. I was taken off the tamox because my doctor told me that he removed the majority of breast tissue there was no reason to stay on the tamox.

Good luck on your quest for an onc that will listen to you.

Sheila