Please help!!! so confused about my margins

The issue of margins is very confusing, partly because there is a lot of controversy among cancer specialists about what constitutes an adequate margin.  10 mm margins are usually considered necessary for women not wanting to have radiation.  The reason most surgeons don't automatically go for 10 mm margins is that it means taking out a lot more breast tissue and thus potentially leaving you with worst cosmesis.  I think 2 mm margins are considered adequate by almost all doctors, if the patient is going to undergo radiation.  NCCN guidelines say 1 mm is adequate.  But you can read studies that say more or less.  I think European physicians tend to want larger margins that US doctors.  All this controversy means that the issue is just not settled among doctors (and is confusing for the patient).

 Margin size is a major predictor for recurrence, but so is age and grade and presence of necrosis.  All this has to be factored together.

 I have just gone through this myself because I ended with a margin that was only .5 mm.  I assumed I would have to have a re-excision, but my case was brought before tumor board at a comprehensive breast cancer center and they recommended against re-excision.  The main reasons they said not to re-excise was that I also had a small tumor and intermediate grade and they believed they had removed all the calcifications and the remaining DCIS was away from the clusters.  I didn't really understand it all (though I tried). Of course every case is different, and I'm not trying to say that my experience is the same as  yours.  But I think the bottom line is that these decisions are complex and involve lots of factors.  (I have a long post on this board about my experience.)

I think with 2 mm margins and under 60 you will be strongly advised to do radiation.  I know it's imperative for me with my small margins.  I talked this through not only with my breast surgeon but also with a medical oncologist and the radiation oncologist.  In the end, the radiation oncologist gave me the most detailed response.

I think you should ask the surgeon to tell you what your risk of recurrence is with your margins with and without radiation.  Then you will know what it is you are deciding.

Scorp,

I agree hat you will need to know your risk of recurrence with and without radiation to make an informed on whether you should have it. If your risk is 40 percent, you will probably want to have radiation, but if it is 6 percent, the side effects of radiation probably are not worth it for the approximately fifty percent reduction that radiation usually provides.

Since this is a big decision, my advice would be to consult with Dr. Michael Lagios. He is one of the world's foremost experts on DCIS. He has written textbooks and speaks on the subject at conferences worldwide.

With Dr. Mel Silverstein, he invented the Van Nuys Prognostic Index, which is a point system designed to predict which DCIS patients may benefit from radiation and which may be able to omit it. He is also a pathologist who offers a breast consultation service.

You can check out his CV and find out more about this at www.breastcancerconsultdr.com. He will review your pathology slides and tell you if he thinks you need a re-excision, radiation and/or tamoxifen. 

Because of him I was able to avoid a mastectomy, radiation and taking tamoxifen. I have referred several other DCIS patients to him and none of them have been disappointed. I can not say enough good things about the man. 

Please feel free to send me a private message if you would like to hear more of my story or have questions about how a consult with him works.

Best wishes as you make your next decision,

Sandie

Scorp,

With DCIS there is no real rush for re-excision. You can take your time researching your next step. In fact I have heard Dr. Lagios and Dr. Silverstein recommend waiting 3 months for the excision to heal before more surgery. So there are different thoughts on that too.

With DCIS there is also some thought that it is overtreated. Eash treatment has its side effects and risks. However, you must be satisfied that you have done enough to get your recurrence risk down to a comfortable level for you.

Sandie

Hello scorp- I can appreciate your frustration.  I was also diagnosed with DCIS stage 0 (1/8/2010).  The first surgery did not have clean margins.  The second did but very small 1 mm.  I opted to not have a third but because of my age, 46, and the small margin, radiation was bumped to seven weeks.  Radiation was not an option for my treatment but a must.

In factoring your risk of recurrence, they take into account margin size but also tumor grade and size,  your age, plus a bunch of other factors.  Did you have radiation after the first surgery?  Radiation decreases the risk of recurrence about 50%.  If you didn't, are you planning to have it now?  Most women who have a lumpectomy also have radiation.  The exceptions are women with very favorable pathology, particularly wide margins (i.e., 10 mm). 

 Edited to add, I don't know what they mean by "dotted."  I would ask the BS to go over your pathology report with you and explain what it means.

I think statistically margins are the strongest predictors of recurrence.  But If you only have .03 margins and high grade and comedo necrosis and multifocal AND you are not going to do radiation, then I imagine your risk of recurrence is quite high.  I think the standard of care is to do radiation after lumpectomy unless your margins are at least 10 mm and you have don't have other unfavorable prognostic factors (which you do).  Candidly, if I were you and I was not prepared to do radiation, I would have a mastectomy.  It seems to me that, from what you say, you have a lot of risk.