DCIS Intermidiate and High Grade

Hi Mikela, I'm so glad it went well.  Hopefully you will be back to being active soon enough.  Wishing you no surprises on path, and clean margins so you can move on!

Beesie is right -- go see the PS you are recommended to see, but know that s/he is not your only choice.  I'll send you a PM.

Mikela,

I had a UMX, and to help even things out, I had a small implant added to my 'good' side.  So I've had both augmentation and reconstruction.  The same (or a similar) implant is used for breast augmentation and breast reconstruction, but the two procedures are completely different and the results are completely different.  And there is much more to it than just appearance.  So often when women think about reconstruction, they think only about the appearance of the breast.  But once they have the reconstruction, they notice all the other things about breasts that they hadn't considered before - the feel and the movement and the feelings.

When you have augmentation, you have all your soft, natural breast tissue covering the implant. The result is simply a larger, but still very natural, breast.  When you have reconstruction, the breast tissue is completely removed and all you have to make up the entire breast is the implant.  So I have one natural breast, which is now slightly larger than it's original size, but it looks natural, it feels natural, it moves naturally, it has natural sensations.  And I have one reconstructed breast, which is the same size as my enhanced natural breast, but it is quite a bit firmer, it's much less squishy, it has absolutely no movement, and it has no natural sensations (except for surface skin sensation). 

From an appearance standpoint, either in clothing or even when I'm wearing just a very low cut bra, you wouldn't know which breast is natural and which is reconstructed.  I look great in a bra - better than ever, since I am a bit larger now. But, that aside, my reconstructed breast is not natural in any way. 

Because of the difference between a natural breast and an implant reconstructed breast (DIEP breasts are much more natural but still lack feeling), some women choose to have a BMX. Personally, I don't mind the differences and I'm glad to still have one natural breast.  For me, I prefer to have two breasts that feel and move differently from each other, rather than two breasts that are more similar but both lack natural movement and feeling.  But that is very much a personal choice.

And no, I was not able to keep my nipple.  Back when I had my surgery, nipple-sparing mastectomies were very rarely done.  But even if I had my surgery now, because my DCIS was so widespread and close to the nipple, I would not have qualified for a nipple-sparing MX.

Mikela, I'm confused.I thought that your breast surgeon had already recommended MX. Does your breast surgeon think that a second lumpectomy could be successful? Why do you need 3 surgeries with MX? Sorry to have more questions than answers! {{{big hugs}}}

gtgirl, I had a MX because I had to have one. Too much DCIS in a small breast - there was no way to remove all the DCIS and still have any breast left. If my situation had been different, I would have gladly had a lumpectomy + rads.

Just because you are reading about other women who needed to have a MX or who have chosen to have a MX doesn't mean that it's a better option - for you - than a lumpectomy. DCIS, whatever the grade, is always a Stage 0, pre-invasive cancer. DCIS in and of itself is harmless. The objective in treating DCIS is to ensure that it doesn't develop into an invasive cancer in the future. So what this means is that if all the DCIS is removed (surgically) and/or killed off (rads and/or Tamoxifen), you'll be just fine. If you have pure DCIS and you don't have a recurrence (and specifically, an invasive recurrence), the survival rate is 100% - and that's true whether you have a lumpectomy or a mastectomy.

Some women choose to have a MX for peace of mind, because they believe that it lowers their risk of recurrence. In some cases that's true, but it's not always true. Someone who has a MX but has close surgical margins (DCIS cells right near the chest wall, for example) might have a higher recurrence risk than someone who's had a lumpectomy + rads. And someone who's had a lumpectomy with good surgical margins, has rads (and possibly takes Tamoxifen) might have a recurrence risk that is as low as someone who's had a MX. Some women who have small areas of DCIS (I don't know how large your area of DCIS is) are able to have a lumpectomy that delivers very wide surgical margins, and as a result, they make the decision to pass on rads because they already have a low recurrence risk (a risk level they can live with comfortably) after the surgery alone.

There is no single 'right' answer about what you should do. If you are scared to have a MX and you don't want to have a MX, you certainly shouldn't feel pressured into having one because you see that other women have chosen this option. Your doctors would not be talking to you about a lumpectomy if they did not think that it was a good option for you. What's most important is that you talk to your doctors so that you understand what they think your recurrence risk will be under each of the options. Then you can make the decision that you are most comfortable with.

Have you read these two threads? They might be helpful to you.

A layperson's guide to DCIS

lumpectomy vs mastectomy - why did you choose your route?

gtgirl, intermediate is Grade 2. Congratulations on your clear margins -- that is great news!

gtgirl, often a diagnosis of DCIS includes many different types of DCIS and different grades.

My DCIS was mostly grade 3 but there was some grade 2, and I had mostly comedo-type DCIS but also had solid, papillary, micropapillary and cribiform. On top of that, I had a microinvasion of invasive cancer, and I had ADH and a whole bunch of fibrocystic conditions.

In your case it sounds as though your pathology included both some grade 2 and some grade 3 cells. Honestly, it's not anything to worry about. That's very common - I believe that anywhere from 40% to 60% of DCIS diagnoses are high grade. But even the most aggressive DCIS is still pre-invasive, so the goal is to remove the DCIS with sufficient surgical margins so that there is minimal chance for an invasive recurrence to develop some time in the future.

Grade is important for DCIS - with any DCIS, there is a risk that once the surgery is done and all the DCIS tissue is analysed under a microscope, a small amount of invasive cancer might be found hidden in the middle of the DCIS. Overall, the risk of this happening is about 20% for all women diagnosed with DCIS, but the risk is much higher for those who have large amounts of high grade DCIS with comedonecrosis (as I did; I had over 7cm of DCIS). The risk is considerably lower for those with low grade or intermediate grade DCIS, and for those who have small areas of DCIS. Once the pathology is confirmed to be pure DCIS, the grade may factor into some decisions such as whether the size of the surgical margins is acceptable, whether or not to have rads, and whether or not to take hormone therapy. So while grade is a consideration in some of the decisions for someone with DCIS, with DCIS grade is not nearly as important as it is with invasive cancer. With invasive cancer, a high grade tumor presents a greater risk that some of the cancer cells might have spread beyond the breast prior to any surgery being done. In other words, with invasive cancer, a higher grade means an increased risk of metastasis. That's a much more serious implication that anything with DCIS.

I hope that helps. And I hope you get your questions answered tomorrow when you talk to the breast surgeon.

I keep seeing people stating 0/2 nodes? What is this? I know lymph nodes, but how do you know? My path report didn't state any and I didn't have any nodes checked. Is this something I need to do. I would of thought my BS would tell me.