DCIS

"During surgery, the breast surgeon sent x-rays of the mass to the radiologist who inserted the wire and confirmed that the margins were clear and the breast surgeon sewed me up."

As I understand it, the tests done during surgery can't assure clear margins, they can only give sort of an educated guess. I think they must do frozen sections, or something like that, to be sure of clear margins. Anyway, it takes more time than just the time period of surgery.

Someone else will have to answer your question about atypia DCIS since I've never heard of it.

"As I understand, DCIS is not an invasive cancer....could I have been misdiagnosed?" 

When a biopsy is done, a large portion of the tumor may be removed but possibly not all of it. The diagnosis that's based on the biopsy is a tentative one, because the most accurate diagnosis can only be done when the full tumor is examined. A certain number of women are told they have DCIS stage zero after biopsy, but the lumpectomy (or mastectomy) reveals a small invasive component that wasn't found in the tissue that was biopsied.

If this happens, strictly speaking what you have is a larger area of DCIS with a smaller area of (probably) IDC (invasive ductal cancer). Usually it's what's called a "microinvasion," meaning that the number of invasive cells is quite small and localized. Sometimes it's bigger, and not a "micro" invasion.

Sometimes the microinvasion is so small that it doesn't affect the treatment protocol, particularly in older women. Sometimes it means that more treatment will be recommended.

It's actually somewhat unusual, even with pure DCIS stage zero, not to be told you should have radiation and hormone therapy. I had a tiny pure DCIS tumor but was told that if I didn't have radiation I'd need a mastectomy. (Fuggedaboudit!) My oncologist is suggesting, but not pushing, Tamoxifen (hormone therapy). So your situation is pretty average.

"Were my margins actually not clear?"

Hard to say, based alone on what you've written. It's not uncommon to need a second lumpectomy ("re-excision") to get clear margins. 

"I have to wait another 10 days for the results." 

Again, not uncommon, but not still not reasonable or acceptable. If I were you I'd call them on Monday and ask several things.

1) Were your margins not clear?

2) If not, why didn't the tests done during the surgery indicate it?

3) Why was the specimen sent to Boston? (Seattle's a big place with good medical facilities. What's so special about Boston?)

4) Why will the results take 10 days? What can you do to get them sooner? 

You might also want to go over to the "DCIS with microinvasion" forum and talk to the ladies there.

However, the most important thing is this: YOU ARE NOT ON THE TITANIC. Though you may need a mastectomy, and you may have invasive cancer, it's very likely that the invasive component is small. I didn't have a mastectomy so I can't speak from experience, but hundreds of women on these boards have them and, while a MX is not exactly a cause for celebration, it's also not the extensive, disabling surgery that it was many years ago.

After my surgery I told my friends I was going to have to find something else to die from -- in about 40 years. And so will you.

The waiting is certainly the hardest part, and I'm often amazed at how much better the posters here feel after they "know," regardless of the outcome!

You're going to be just fine. Hang in there. August is usually the nicest month of the year in Seattle, so enjoy it. 

Katherine -

the radiologist and the wire guidance - It would seem that all the radiologist could affirm was that the surgeon removed the area which was intended to be removed. DCIS is funny that way, it isn't necessarily a visible lump. I get the feeling that the surgeons are almost going in blind, that is why they need the wire guidance. The ducts with the cancer inside probably don't look diffferent from normal ducts when the surgeon looks at them.  Anyway - it is only the pathologist who can tell if the margins were adequate.  Your chunk of tissue is actually rolled around in dye - so there is no question as to where the outside margins are - it is looked at under a microscope and the distance between the outer dyed edge and the first cancer cells is measured - from the skin side, chest wall side and I suppose left and right. Your BS getting a second pathology opinion - that is great. Maybe he/she knows someone in Boston who is doing groundbreaking work on DCIS.

It sounds like you have been very brave and now all these questions just when you want to focus on your new job.I think no matter what the diagnosis - you will feel much calmer and in control once you KNOW what it is and what your options are and certainly when you have a treatment plan in place. 

At least arrange to be seen immediately by your breast surgeon when the pathology results from Boston are in -  and in the meantime, get and read copies of your biopsy pathology report, the surgical report and the pathology report from the Swedish pathologists. And though difficult, I think you are right in not telling your son until you actually have something to tell him. 

Hugs to you.

Julie E

 i had a lumpectomy and it was sent out for a 2nd opinion on path, so i did wait 2 weeks for the result. also had a re excision to get clear margins. completed rads now on tamoxifen. your doctor wants all the info before they give you the options.  i know the waiting is the worst! 

If I can add to what another poster said above about maybe waiting til November break for surgery--my original lumpectomy was May 20th and my mastectomy wasn't until July 25...its just how events fell into place. So its very likely that if you end up needing surgery, it won't occur before then anyway. Also, when I consulted with the radiologist, she told me that I had up to about 12 or so weeks to start rads after lumpectomy, so you will maybe have some time if you go that route too.