Results and questions; help!

percy4

Good news.  My lumpectomy results are in.  The surgeon was thrilled, but I have questions.  What was found was low and intermidiate DCIS, no invasion!  However, when I asked about ER status, necrosis, etc., she said they did that in the punch sample and don't re-do it for lumpectomy sample.  I pointed out that the intermediate hadn't even been in the biopsy sample, so of course I wanted all the evaluations done on the whole lumpectomy sample.  Path report does not even have the dimensions of the DCIS found.  She said I had clean margins, so they got it all, but could only tell me the dimensions of one margin (2 mm).  Of course I said that's great news, but I'd have thought they'd have (and I want) dimensions for all the margins (maybe they only supplied the narrowest one) and for the whole specimen to be evaluated for ER status, necrosis, the whole thing, and in fact requested that it be sent on to SF for those things, and a 2nd concurring opinion.  She sounded deflated, did say she would put in my request, but doesn't that sound like an incomplete path report?  Understand the great thing to take away from this is no IDC, and acceptable margins for feeling it's all gone.  Unfortunately, I also get that even one 2 mm margin, though "clean", isn't enough to forgo radiation.  As far as I understand, even Dr. Lagios would not feel that was a big enough margin to not have rads (any experience out there with him about that?). Input on all this really appreciated!

percy4

Also; if there is both low and intermediate grade DCIS there, can it still be "one" focus, or must that make it two?

Beesie

Hi Percy!

DCIS is often a mixed bag. I did have a couple of foci of DCIS, but within each area I had every different type of DCIS (comedo, solid, cribiform, papillary and micropapillary) and while most of my DCIS was high grade, one of the areas included some intermediate grade.

So having both low grade and intermediate grade together doesn't mean that there is more than one focus. I found this definition of multi-focal DCIS: "Multifocality was a pathologic feature defined as more than one distinct focus of DCIS, with at least 5 mm of intervening healthy tissue confined to a single quadrant of the breast." http://jco.ascopubs.org/content/25/35/5591.full

As for your pathology report, yes, that does sound incomplete to me. I am very surprised that more analysis was not done of the removed breast tissue, detailing the types of DCIS found, etc.. And to not include the dimensions of the amount of DCIS found is very strange. With a lumpectomy with clear margins they should be able to determine fairly precisely the size of the area of DCIS. It can be hard to be exact, particularly with larger areas of DCIS, because they section out the tissue to examine under a microscope, but my pathology report provided a 3-dimensional estimate of the size of the area of DCIS within each removed area of breast tissue. With regard to margins, in some path reports all the margins are noted, but sometimes they note only the closest margin and then say that all other margins are at least #mm from any identifiable cancer.

With regard to the 2mm margin, if you want to avoid rads, and if your area of DCIS is small enough that this can be done without adding a lot of risk, one option to consider is whether it's worth it to you to have a re-excision in order to achieve wider margins. There have been a number of women who've come through the board who have done that. My mother's situation was a bit different - she had invasive cancer and a T1b tumor (5mm to 1cm), and had one too close margin after her lumpectomy. Because she was 80 when she was diagnosed, her doctors and my parents all agreed that a small re-excision would be easier on her than the rads. So that's what she did. She had the re-excision - and it was really easy for her - and her surgeon got nice wide margins. So she was able to pass on rads. Something to consider.

ziggypop

Percy - so glad for you that there is no invasion and that you have beesie. We should all have a beesie, I think.

percy4

Thank you, and so, so true about Beesie.  At least all of us here DO have a Beesie.  So, now, I've taken off the bandage by feel, but have not looked at it.  Boy, can I be a little scardy-cat.  Felt the breast, and it feels about like before.  Of course, she said I'd be swollen (doesn't "feel" swollen) so if this is swollen then later would be smaller than the other.  Of course, I'm a really good healer, so maybe it's not swollen by now (three days after) and the size it is is the size it will be.  She did the incision around the nipple, so there won't be a visible scar soon, and she sewed it underneath in layers to avoid a dent, so there's no dent to be filled with seroma.  Can you believe I'm doing this unveiling in stages?  Hope the nipple is still pointing in the right direction.  I'll look at it soon.  Think all this mulling comes of being alone here in my apt. for days.  Am pretty unhappy about the once-in-a-lifetime rads.  Have emailed and asked for a real path report with dimentions,  ER and necrosis evaluations throughout (as they can be different in different areas of the lumpectomy), but it's starting to sink in that I'm probably REALLY lucky.  Even with the rads.

Rhiannon78

hi percy,

Great news that there was no invasive component found and that the margins were clean. I concur that the the 2mm margin is probably not large enough to forgo rads. (My margins were 9mm all around). That said, I think this is the time to send your surgical path samples to Lagios, he can give you his thoughts about the option of re-excision as well. My experience with my docs at Santa Clara Kaiser was that they actually resepct Lagios as a pathologist, even if they think he tends to recommend "undertreatment". I've heard from other women here in the Bay Area that their docs think he a wacko:-)

Good luck, keep pushing and keep us posted. Go ahead and look at the incision, but bear in mind that the glue they use to close the wound makes it look a lot worse that it ends up being!

Edited for typos!

ballet12

Hi Percy, as you know, I pm'ed you, but I will definitely second Rhiannon's comment about the glue to close the incision.  Having had the first lumpectomy at one hospital where they didn't use the glue I didn't really know about it.  For the second and third surgeries at hospital #2 they did, and I didn't realize that the glue was there.  I thought it was a really ugly wound closure until I realized that I could actually pull the glue off (after a week or so of healing).  Perhaps the surgeon will do that for you (I wasn't scheduled to see mine until 10 days post surgery).  I think you'll do just fine.  As I said, major distortion doesn't usually appear after one surgery.  Here's to good healing!

SJW1

Dear Percy,

What you really need to know, to determine if radiation is worth it to you, is what our your odds of recurrence without radiation are. If your risk is low like mine was (4%) you might decide the benefits are not worth the risks. However, if your risk is high, say 30% you might opt for radiation.

You can use the Van Nuys Prognostic Index and even with 2 mm margins your score might be low enough to indicate your odds of recurrence are low enough to opt out. To do this it is probably best to have a world renowned DCIS expert and pathologist like Dr. Lagios review your pathology. As an expert who has written many of the textbooks on DCIS, I find it amazing that he has a consulting service that anyone can use. You can also use the newer less tested and more expensive Oncotype DX for DCIS.

Interestingly enough, most oncologists do not talk about the fact that although radiation typically reduces recurrence by 50%, it does not improve survival rates. In fact in at least one study, the rate of invasive recurrence was higher for those who had radiation. A study by Dr. Silverstein also showed that there was no statistically significant benefit from postoperative radiation therapy among patients with margin widths of 1 to <10mm.

Please feel free to check out these studies plus more info on the benefits vs. the risks of radiation on a new website I have co-authored with another DCIS sister:

http://dcisredefined.org/choices/rads/

Ultimately you need to do whatever will give you peace of mind.

Wishing you all the best,

Sandie

percy4

Thanks, Sandie.  How many mms was your narrowest margin, did you consult Dr. Lagios, and did you have rads?  Thanks. xx

percy4

So.  Bolstered up the nerve to look at my breast. The woman is an artist.  She managed to get the disease out of my breast (the most important thing) and still leave it looking exactly as before.  After my losses of the last few years, I just couldn't handle feeling maimed.  The breast is perfect.  Can see no scar, no difference, nothing.  As a single woman who will have to take her clothes off with a new man someday, my confidence in that area is undiminished, thanks to my great BS (though I would have dealt with it if it had been different).  Not the most important part, here, but REALLY comforting.  Now for the more complete path report... xx

april485

percy, if you are forgoing rads, you might want to have that brilliant surgeon go back in and give you larger margins (at least that 2mm one) so that you can feel confident about not having the radiation. If you are having rads (which I did despite very large over 1cm margins after re-excision but I did a partial breast rads protocol) you still might want to get a larger margin that 2mm which is really narrow from my understanding. I do have a bit of a larger scar than I did initially, but my confidence is much higher that my cancer is all gone. Hugs and best to you!