DCIS confusion

TJF

I was recently diagnosed with DCIS, nuclear stage 3 with microinvasions. What I have read states that DCIS is treatable with a high survival rate. I also have read where so many have had reoccurrence of invasive in the same breast, DCIS in the other breast or mets. I don't have a size, only a location, 1 (the larger of the 2) is 4 com from the nipple at 12:00 and the other, smaller area is 3cm from that, so 1 cm from the nipple. I am worried that a mastectomy is going to be my only option due to not being able to get clean margins that close to my nipple. I haven't met with my surgeon, Rad Onc or Onco MD that comes next week. I am just wondering if anyone else has had a similar diagnosis and what their options were.

AMLMom

Hi TJF, I had a similar diagnosis. I had a lumpectomy with oncoplasty (reconstruction using remaining breast tissue to create a smaller breast). If all goes well, my other breast will be reduced in size in the new year to balance them. I am very happy with the result. I was able to save my breast and avoid having to get an implant, and my breast looks good considering how much was removed (the total dcis tumour was 10.5 cm and I had two areas as well).

Good luck.

Ingerp

Not sure if this helps but I had a *large* chunk taken out in 2016 (8cm x 6cm x 3.3cm). I didn't bother with any reconstruction or trying to get the other side to match--I figure we're lopsided anyway and you can't tell when I have clothes on. Re: the recurrence, I did have genetic testing done after I finished all of my treatment this year, but nothing was found. Keep in mind they're always finding new genetic links--I think they used to test for only a few genes but now it's over 40. My RO said maybe there's something in me that just doesn't fight off cancer too well (besides my dx's below, I also had ALH on the right side about 10 years ago). She also said it just might good old-fashioned bad luck.

Beesie

I'm sorry that you've had to join us here, but glad you found us.

I had a similar diagnosis, DCIS-Mi, with 2 areas of grade 3 DCIS. You don't say what type of biopsy you had. I started with a stereotactic biopsy, but the Radiologist was only able to reach one of the areas of concern. That biopsy came back with ADH, which is a high risk condition often associated with the presence of DCIS. So off I went for a surgical biopsy. I had both areas of concern removed - quite a lot of breast tissue, and that's when the diagnosis became DCIS with a microinvasion.

Despite being small breasted and having had quite a chunk removed, my breast looked okay. The problem however was that there were no clean surgical margins, so there likely was still more DCIS left in my breast. My first surgeon automatically recommended mastectomy. I wanted a lumpectomy and went for a second opinion. The second opinion surgeon sent me for an MRI. The MRI showed that my breast was full of "stuff". That's what the surgeon called it, because until surgery it wasn't possible to know if it was benign fibrocystic stuff (I had a lot of that) or more DCIS. He was willing to try a re-excision lumpectomy but my guess, and his, was that the MRI was showing more DCIS, so I made the decision to have the MX. Turns out the MRI was right and my breast was full of DCIS.

All that to say that I'd suggest an MRI before you make the surgery decision. While no guarantee (no screening can be certain to be fully accurate), MRIs are good at 'seeing' high grade DCIS so if it only shows the areas you know about now, you can attempt a lumpectomy. But if it shows a greater area of concern, that might suggest that a MX is necessary.

As for recurrence, with a large amount of high grade DCIS that is multi-focal, you will likely have a high recurrence risk after a lumpectomy - you have all the factors that increase recurrence risk. Achieving wide surgical margins is key. Radiation will be critical to reduce this risk (by about 50%), and endocrine therapy (if the DCIS is ER+) will also be important (a further ~50% reduction in recurrence risk). After a MX, assuming no close margins by the chest wall, normally rads is not required and endocrine therapy is usually optional, although this could change because you have multiple microinvasions.

This article about the Van Nuys Index is helpful in understanding recurrence risk after a lumpectomy for DCIS under various conditions (size of tumor, grade, surgical margins, age of patient): https://academic.oup.com/jncimono/article/2010/41/193/891277

And the following thread provides information about DCIS, with one important note. With the microinvasions, your diagnosis is DCIS-Mi, not DCIS. DCIS-Mi is Stage IA invasive cancer, unlike pure DCIS that is Stage 0. With just one or a small number of micronvasions, usually the treatment is the same as it would be for pure DCIS. But if more invasive cancer is found in the final pathology, or if the microinvasions are particularlyaggressive (HER2+), the treatment plan could change considerably.

https://community.breastcancer.org/forum/68/topics/790992

Rrobin0200

beesie,

Did you have a mastectomy with no further treatment?

Beesie

Rrobin, yes. UMX and that was it.

TJF

Thanks everyone for your replies and support. Beesie, I also had a stereotactic biopsy, your dx sounds very much like my own. My mammogram didn't mention size, only location, the radiologist did say it might all be 1 area DCIS but she felt it was 2 different areas. I do get mammograms yearly and 13month ago it was negative so I was surprised by the fact there was already 2 areas. As I am sure all of you know the fear and uncertainty seems to be all encompassing. I have only told my husband and he didn't take it well, so now I am waiting until I have a plan to tell my kids and boss. The waiting to see my surgeon just seems fuels more fear and anxiety. Just trying to be as informed as I can be when I meet with the surgeon, rad onc and oncology next week.

Rrobin0200

beesie, how big was your microinvasion? Her2 status?

Beesie

By definition, a microinvasion is an invasive tumor that is 1mm or smaller in size. Mine was 1mm. It was not tested for HER2 status - back when I was diagnosed, single microinvasions usually were not HER2 tested and even today often they are not. HER2 becomes relevant when the tumor is larger (3mm or more) or possibly if there are many microinvasions.

Rrobin0200

ok. Seems as if we had the same diagnosis, albeit mine was pr/er negative. And you've been in remission for how long?

TJF

Does anyone know the percentage of originally diagnosed DCIS cases that change to IDC after surgery? Especially for the ones with a nuclear grade of high?

ItsHandled444

I have no idea what the percentages are other than what Google says. My IDC was detected in surgery so what was said to be DCIS is now DCIS and IDC. The treatment plan remained the same as lymph nodes were clear and we got clear margins after reincision. Lumpectomy, Radiation, and Anastrozole.

Hugs!

Beesie

TJF, since your biopsy pathology already includes microinvasions, your diagnosis is already IDC. DCIS-Mi (DCIS with microinvasion) is actually an invasive cancer diagnosis, Stage IA with a T1mi tumor.

Breast Cancer: Stages

T1: The tumor in the breast is 20 millimeters (mm) or smaller in size at its widest area. This is a little less than an inch. This stage is then broken into 4 substages depending on the size of the tumor:

• T1mi is a tumor that is 1 mm or smaller

.

Stage IA: The tumor is small, invasive, and has not spread to the lymph nodes (T1, N0, M0).

.

To your question: "Does anyone know the percentage of originally diagnosed DCIS cases that change to IDC after surgery? Especially for the ones with a nuclear grade of high?", most studies I've seen over the years put the figure in the range of 20% - 25%, although some studies do reflect a higher percentage.

High grade and a large area of DCIS are two factors that increase the risk that an initial biopsy that found DCIS will turn out to be IDC upon surgical excision. The risk level for high grade DCIS isn't well documented but appears to be in the range of 40%, particularly if the lesion is large.

Upstaging to invasive ductal carcinoma after mastectomy for ductal carcinoma in situ

Fifty-one (22.6%) of 226 lesions were upgraded to IDC after mastectomy. Preoperative factors associated with upstaging to IDC included patient-reported signs and symptoms, a clinically palpable mass, ultrasound findings classified as category 4 or 5, the ultrasound appearance of a mass or widely distributed non-mass abnormality (NMA), and a high Ki67 index.

Evaluating the frequency of upgrade to malignancy following surgical excision of high‐risk breast lesions and ductal carcinoma in situ identified by core needle biopsy

In our study, 51.1% of CNB samples were diagnosed with DCIS. About 76.1% of samples with a CNB diagnosis of DCIS underwent excisional biopsy. About 80.4% had concordant diagnosis of DCIS, and 19.6% of samples were discordant upon surgical excision.

Factors associated with upstaging from ductal carcinoma in situ following core needle biopsy to invasive cancer in subsequent surgical excision

The overall upstaging rate was 42.7% (216/506). Multivariate analysis found that a palpable lesion, a lesion size >20 mm, a high grade lesion, and use of the 14-gauge needle method were independently associated with upstaging (p < 0.05 for all variables).

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Rrobin, I had not seen your last question. I absolutely do not consider myself to be in remission. According the the National Cancer Institute, this is the definition of remission: "A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body."

With a diagnosis of a breast cancer that has a relatively high local or distant recurrence risk, "remission" is reasonable term. For DCIS or DCIS-Mi treated with a MX, I find the term to be completely inappropriate. After my MX for DCIS-Mi, my risk of local recurrence was 1%-2% and my risk of distant recurrence was at most 1%. To me, remission means that I am waiting for a recurrence to happen. To the contrary, based on those extremely low recurrence risk figures, I have always consider myself cured until proven otherwise. I of course recognize the risk and remain vigilant, and I know that I could be that 1%, but I don't live my life expecting a recurrence or thinking that it is likely, which to me is what the word "remission" implies. So to your question, I had successful UMX surgery for DCIS-Mi just under 14 years ago.

TJF

I go in tomorrow for a lumpectomy and sentinel node biopsy, they are going to also put in brackets to make sure they get the area in-between the larger and smaller areas of calcifications. Does anyone know how long that will take? Is either painful or uncomfortable?

Shemariewil

Beesie-

I love this!

“With a diagnosis of a breast cancer that has a relatively high local or distant recurrence risk, "remission" is reasonable term. For DCIS or DCIS-Mi treated with a MX, I find the term to be completely inappropriate. After my MX for DCIS-Mi, my risk of local recurrence was 1%-2% and my risk of distant recurrence was at most 1%. To me, remission means that I am waiting for a recurrence to happen. To the contrary, based on those extremely low recurrence risk figures, I have always consider myself cured until proven otherwise. I of course recognize the risk and remain vigilant, and I know that I could be that 1%, but I don't live my life expecting a recurrence or thinking that it is likely, which to me is what the word "remission" implies. So to your question, I had successful UMX surgery for DCIS-Mi just under 14 years ago.“

I am 23 days post op BMX and am doing everything possible to remain positive and not let the creeping shadows of the recurrence word enter my mind as I focus on healing and getting on with life. I'd like to thank you for your words. Very uplifting. Congratulations on being cured.