Anyone opted out of surgery for DCIS

Lindan123,

I will disagree with you on one point.   

"About 95% of women with DCIS do not require a mastectomy."  

In fact because DCIS cancer cells are confined to the milk ducts, as DCIS spreads, it tends to spread out within the breast. This differs from an invasive cancer, which tends to form an ever increasing lump in one location.  Because of this, it is more likely that DCIS will be wide spread and found in more than one location in the breast.  And in cases like that, most often a mastectomy is the only way that all the DCIS can be effectively removed.

Generally any area of DCIS that is 4cm or larger requires a mastectomy.  The exception would be someone who is very large breasted.  And sometimes adequate margins can't be achieved all around the tumor when the area of DCIS is 2.5cm - 4cm in size. So in some of these cases, a MX will be recommended.

I will have to dig around to find the studies I've seen before that show that approx. 20% of DCIS cases are 4cm or more, but basically the net of all this is that a mastectomy is the only viable option in about 20% to 30% of cases of DCIS.

"Since up to 70% of women with newly diagnosed DCIS have disease that can be managed with breast-conserving surgery..." This would suggest that as many as 30% of women of with newly diagnosed DCIS do require a mastectomy.  http://jncimono.oxfordjournals.org/content/2010/41/197.full

I'm not pitching for anyone to choose to have a MX instead of a lumpectomy, but for all of us who had no choice but to have a MX to address large amounts of DCIS or dirty margins after a lumpectomy, I think it's important that the medical requirement for this surgery not be underplayed.  

Do you have DCIS?  And what surgery/treatment did you have?   

Edited:  The post from Lindan123 that I was responding to here has been removed by the moderators but I decided to leave my post in place in case the information is helpful to anyone.  

Lee, 

Honestly, I don't know why your surgeon is concerned.  These days there is a lot of discussion about over-treatment of DCIS and in fact there are some who believe that low grade DCIS doesn't even need to be removed - it can just be closely monitored with mammos and maybe MRIs.   Personally I wouldn't do that - I would have the surgery if only to ensure that the final diagnosis really is low grade DCIS - however if my final diagnosis was just a small amount of low grade DCIS, I don't know that I would do any more than surgery.

The fact that some are questioning the need for surgery for low grade DCIS certainly would suggest that waiting 2 - 3 months to have surgery presents little if any risk. 

Is there something more to your diagnosis?  Do you have what appears to be a very large area of DCIS in one or both breasts?  Have you had an MRI that has indicated that something more serious than low grade DCIS might be lurking?  

Many women with much more serious diagnoses wait a month or two or even more before they have surgery.  I had an excisional biopsy - a surgical biopsy - so a lot of my DCIS was removed during that procedure. But I had dirty margins all around, and then had an MRI that showed that there was a lot more DCIS still in my breast.  My DCIS was high grade with comedonecrosis and my excisional biopsy had uncovered a microinvasion of IDC, proof that my DCIS was right on the verge of converting to become IDC.  Yet I waited 2 1/2 months between my excisional biopsy and my mastectomy, and my surgeon wasn't worried at all about that. It turns out that there was a lot more high grade DCIS in my breast, but no more microinvasions.  So the wait didn't change my diagnosis one bit.

In your case, with low grade DCIS, the risk of anything happening over a couple of months is extremely low.  Unless there is something else going on that raises the risk.....

Hmmm.... if one pathologist said invasive and another said grade 1 DCIS, I think I'd opt to get a 3rd opinion, just to be on the safe side. 

Is the pathologist who said 'invasive' associated with your surgeon?  That could explain her desire to get the surgery done sooner rather than later.