CRAZY RIDE

canuckgirl

Hi everyone,

First let me acknowledge all of the wonderful women on here - so brave.  I admire every one of you!  The wealth of knowledge on these boards is invaluable.  Beesie, you are amazing.

Second, my story.  I'm 49 years old and was diagnosed with DCIS in July of 2014 after undergoing a biopsy due to an abnormal yearly mammogram.  After meeting with my breast surgeon, she recommended a lumpectomy followed by radiation.  I had the lumpectomy on August 25th and then played the waiting game for the path report to come back.  Path report came back, diagnosis DCIS in one area, 9 mm, mixed intermediate and high grade with comedonecrosis.  Tumor is completely excised, but with close margins - one is 1 mm the other is 2 mm.  NON-INVASIVE.  Met with surgeon and was advised no more surgery - so off I go to radiation treatment.  Enter RO.  Doesn't like the way my path report was read - not enough info for her - so I had to play the waiting game for the new report to arrive.  New report is basically the same - with a bit more info:  ER+ and again non-invasive.  So the mapping of the left breast begins and the first rad appointment is made.  Then she put this bug in my ear:  IF you have re-excision surgery to gain larger margins - your recurrence rate will drop to around 5% (rads and TAMOX) and your rads will be cut from 4 weeks to 3.  Also, you will have a pass on Tamox if you can't tolerate it.  No brainer:  I agree to have the re-excision surgery and have just had it this past Monday, Oct. 27th.  Met with surgeon before surgery and asked for 1 cm to be taken out.  Surgeon visited after surgery and told me all went well and that she didn't see anything of concern while she was in there.

Oh - I this was also on my path report:  "The expansile ductal epithelial proliferations and radially arranged ducts have an intact outer layer of myoepithelial cells:  ie non-invasive."

I have two questions:  can the surgeon actually tell if there is anything concerning to her?  Can my RO actually give me those types of odds?  I've researched her and she does specialize in breast radiation with a focus on DCIS.  She is knowledgeable - is a prof at a major university where I live, including having written articles on DCIS.   

I've been pretty sane during this journey, but now I'm kinda freaking out and I'm not sure why.    I'm on a short term leave from my office and have wayyy too much time to think about this.  Overthinking is more accurate.  Thank you all in advance for any responses or insight you might have. 

     

wrenn

I think the surgeon could make a pretty accurate guess but of course the pathology is the final word. I would try not to worry....easier said than done. Is the RO at the BCCA by any chance?

canuckgirl

Hi wren, She sure is! 

ballet12

The only thing a surgeon can actually "see" during the surgery would be something that looks like a solid tumor, which might look different from the surrounding area.  The surgeon can't actually see DCIS or microcalcifications.  I do have to say, that my surgeon, when going in for a re-excision, had to guess where to operate, as the previous surgeon had not marked or "inked" the margins in the pathology slides.  She had to estimate where the previous surgery had happened, so I guess she did look at some physical features (but not looking for DCIS).  

As for the risk of recurrence, there are several risk recurrence models around that do factor in things like close or wide margins, without or without comedonecrosis, high grade vs. low grade, tamoxifen or no tamoxifen, etc.  Memorial Sloan Kettering has a "nomogram" which you can find on their website, which gives estimates based on plugging in the various factors.  There is a nomogram specifically for DCIS.  Of course, this isn't your ACTUAL recurrence risk. No one actually knows this. It is an estimate, based on studies of many women with those characteristics to their DCIS.

canuckgirl

Thx for the response ballet12.  I'll do the nomogram and see what type of risk recurrence rates I get.  I agree with your comment re. the surgeon  - I didn't think that she was able to "see" DCIS.  I see that your grade is the same as mine and you chose lumpies and rads. 

 

MillyQ

what's BCCA

canuckgirl

Hi MillyQ

I live in Vancouver - Canada and that's abbreviation for :  British Columbia Cancer Agency