Re-excision margin report - need help

I understand how you feel.  I am awaiting a second surgery this Thurs 1/21/10.  The margin on one edge is not cleared.  I have DCIS-type 2 cells with necrosis, but is considered Stage 0.  I think a mastectomy is so overkill for this, but I am told if they don't clear this time I need one.  I cannot rap my head around this.   I am 49, active, I lift weight, I am in great shape.  I also have implants, which pose a problem with the rad.  I just want this to go away, and I know it won't.  I feel as though my life has changed forever.  I try to be grateful b/c it is so early.  Hang in there!!! 

My second surgery showed that all margins all not clear.  1 piece had 8 of 11 slices not clean.  the second had 6 of 17 not clean.  The third was clean.  When my surgeon called me she focused on the 1st piece of tissue.  She feels there could be more.  She had said before the DCIS is multifocal, (or scattered).  In my opinion it seems like they did get most of it.  I will see her on Tuesday, Feb. 2, 2010.  She is recommending mastectomy.  I WILL ASK THEN WHAT IS THE ROLE OF RADIATION?  CAN'T THE RADIATION ZAP THE REST?  All of the calcificed areas have been resected.  I had a mammo preop before the second lumpectomy to confirm there were no further calcifications. She said that she cannot tell me that in 10 years it will not come back, either as DCIS or invasive cancer.  One thing she said on the phone was that it will increase my chances not having clean margins, but by 17%. I will have to ask the %risk again. The risk of lump w/ rads is 10-12%.  Then why can't I just have rads. Half can be DCIS and half can be invasive.  They just don't have the data to back up recommendations.  I have read some studies, and I still think a mastectomy is overkill at this point.  I have scheduled an appointment, (Feb 18), at Sloan Kettering in NY to  see a breast surgeon that does quite a bit of research on DCIS.   I will have a mastectomy at some point if it is strongly recommended, but I will not mutilate my body by scare tactics and insuffiecient data.  I don't mean it against the medical community or the surgeons, it's just I want piece of mind if I have the mastectomy.  I don't want to do it and then wander if I shouldn't have.  I have a great surgeon that trained at John Hopkins and I respect her recommendations, but I want to educate myself and feel confident about my decision. 

Happy to hear you are being offered rads. God Bless!

Diagnosis: 12/17/09, DCIS, 1cm, Stage 1, Grade 2/necrosis, ER+/PR+, nodes were not checked.

VinRobMom:

Thank you for responding.  I feel alone sonmetimes.  The frustrating thing too is that the need for more studies has been going on for quite a few years.  It seems as though studies stratifying cells types, rads without clean margins etc need to be looked at.  I understand 25% of BC cases are DCIS..  Or atleast a regristry for people who opt out of mx.  I will look into UCSF.

Take Care!

VinRobMom and lisamcknito,

Although your situations sound similar on the surface, there seem to be 3 distinct differences.  Lisa, your DCIS is multifocal, includes necrosis and it appears that you have a lot of DCIS still in the margins.  

VinRobMom, although your closest margin is less than 1mm, it sounds as though there is a least a tiny margin - maybe 0.5mm.  If your DCIS was all contained in one area, your doctor seems to be judging that all the DCIS has in fact been removed, and that's why he is sending you on to radiation.  Additionally, since your DCIS is not overly aggressive, he is judging that radiation will be effective at killing off any DCIS cancer cells that might be remaining.

Lisa, with multifocal DCIS, it means that there are several areas of DCIS, with spaces in between. I had that too. Given that you have several dirty margins, your doctor clearly feels that there's a good chance that there could be another area of aggressive DCIS still in your breast.  Radiation is used to kill off any random cancer cells that might be left but radiation doesn't replace surgery - it's just not as effective.  In fact most radiation oncologists won't start radiation until clear margins have been achieved.  Have you had an MRI?  In my case, while my mammo showed a lot of the calcifications, my MRI showed a much larger area of concern.  After my excisional biopsy (which resulted in lots of dirty margins), I was resisting the recommendation (by two different surgeons) to have a mastectomy, but my MRI convinced me that it was my only option.  In the end the MRI turned out to be correct, as I in fact did have DCIS throughout my breast, much of it not visible on my mammo.

I'm a numbers person and I make my decisions based on facts and stats, plus my instincts.  I agree too that there is "plenty of scare going on on this board " and when I come here (which is less frequently than I used to) I try to do what I can to counter that by presenting studies and data that I've found.  While it's true that there is a lot that isn't known yet about DCIS the fact is that there have been many very large studies done on women with DCIS, so there is a lot that is known - there actually is a lot of reliable information out there.  To me the most important known fact about DCIS is that it is not a single homogeneous disease.  The variations in DCIS can be huge and it's wrong to think (or suggest, as some do) that when it comes to treatment, one size fits all.  For some women with tiny amounts of low grade DCIS, watchful waiting might be the most appropriate treatment.  For other women, a lumpectomy might be all that's necessary.  Others are best served (medically) by having a lumpectomy plus radiation.  And then there are some, like me, who simply have too much high grade DCIS and who require a mastectomy.  I had to have a mastectomy - it was a medical necessity - but I would never suggest that it's an appropriate treatment for most women with DCIS.

Lisa, good luck with your meeting at Sloan Kettering.  I hope that you get the news that you want. But if you don't, please understand that the decision to recommend a mastectomy for those who have multi-focal DCIS and dirty margins is based on lots of good data relating to recurrence risk (remember too that 40% - 50% of all DCIS recurrences are not found until the cancer has evolved to become invasive).

VinRobMom, good luck with your meeting with the radiation oncologist. I hope that he agrees with your surgeon that radiation is your next logical step.

By the way, here are a couple of websites that talk about DCIS recurrence rates based on the type of diagnosis, the size of margins and, in one case, whether or not radiation is given.  The first of these talks to the Van Nuys Prognostic Index Scoring Index, which Bless referenced in her post.

http://www.breastdiseases.com/dcispath.htm

http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2