Brand new diagnosis

Hi Pam,

I was also diagnosed with DCIS three months ago and am 31 years old (definitely not what I expected to be dealing with at this age).  I had a lumpectomy (also called partial mastectomy), but my doctor did not remove any lymph nodes.  My understanding is that lymph nodes are typically not removed during a lumpectomy for someone with DCIS because the cancer by definition is non-invasive.  That said, different doctors do different things.  I ended up going to three different breast care centers in the DC/MD/VA area before finding a doctor I was on the same page with.  My surgery went very well.  I love the team I'm with now, and I start radiation in January.

I just wanted to reach out and offer you some encouragement.  It all sounds very scary in the beginning, but in my experience things have not turned out to be nearly as bad as I originally perceived (my first doctor told me I had to have a mastectomy and that the treatment might cause me to go into premature menopause...both of which sounded traumatizing for me but neither of those turned out to be true).

I found the following info about comedo on this website:  http://dcis.info/biopsy-examination.html

Hope it helps!  Stay encouraged!  Kim

DCIS is divided into different subtypes: comedo, cribiform, micropapillary, papillary, and solid. It is important for the pathologist to identify the subtype to help to determine if the lesions are likely to recur and whether they are likely to become invasive. There is no classification system that can accurately predict which subtype is likely to recur as an in situ or as an invasive cancer.

Comedo type DCIS. Comedo looks and acts differently from other in situ subtypes. Comedo tends to be slightly more aggressive than other forms of DCIS. These cells are closer to invasive breast cancer cells in how they look and behave than other forms of DCIS. Comedo cells look different under the microscope because the center of the duct is plugged with dead cellular debris, known as necrosis. Necrosis seen under a microscope in DCIS usually means that the cells are fast-growing and are generally more aggressive or high-grade. Also, microcalcifications (small abnormal calcium deposits) are frequently seen in the areas of necrosis.

Cribiform. These cells do not completely fill the ducts. The pattern has little holes and slits.

Micropapillary and papillary. These two types have fern-like projections of cells into the center of the duct. The micropapillary type projections are smaller than the papillary type.

There are three factors that are most important in determining what the DCIS cells are likely to do. These are:

1. The extent of disease in the breast, or the size of the DCIS as measured by the pathologist.
2. The status of the margins of the biopsy tissue.
3. The grade of the DCIS.

The margins are important for treatment decisions — for example, surgery, radiation therapy and/or hormone therapy. Of the three pathology factors, the most important, uncorrected for margins, is grade. Grade is important for prognosis (prediction of probable outcome). Grading looks at the structure of the cancerous cells and their growth patterns.

Histologic grade refers to how much the tumor cells resemble normal cells (called differentiation). The lower the grade, the more the cells resemble normal cells. DCIS and low-grade tumors grow relatively slowly. High-grade tumors, in contrast, are thought to grow rapidly, and in the case of DCIS, are more likely to lead to invasive cancer in the future.

Nuclear grade refers to the rate at which the cells are dividing to form more cells (called proliferation). Cancer cells that divide more often are faster growing and more aggressive than those that divide less often. The nuclear grade is determined by the percentage of cells that are dividing. Cells have different grades ranging from 1 to 3.

Remember, the lower the grade, the more normal the cell. While high-grade DCIS is more likely to become an invasive cancer, it is also the easiest to contain. It tends to grow in a continuous pattern within the duct and is more localized within the breast. Low grade lesions tend to have more gaps and can be more widespread.

Hi Pam,

From what you wrote, nothing suggests you have anything other than DCIS, but there is no way to know for sure until after you've had the area taken out in surgery.  A pathologist will then test the whole area removed and provide a complete pathology report.  I wouldn't worry about it for now. 

One of my doctors described the difference between DCIS and other things that can be found in your breast as a spectrum where normal cells are on one end, and cancerous cells are on the other.  There are a few places you can fall in the middle (one of which is DCIS).  The pathology report is what tells you where you fall on the spectrum.

l--------------------l-----------------l------------------------l--------------------------------------l

  Normal Cells       ADH           DCIS (stage 0)           Cancer (Stages 1-4)

DCIS is definitely better than any form of cancer.  DCIS is non-invasive, which means it is confined to the milk ducts and has not spread any where.  (One of my doctors does not even consider DCIS to be cancer; instead, she explained it as a form of "pre-cancer".  However, different camps within the medical community disagree on whether to consider DCIS a stage 0 "cancer" or a "pre-cancer," so you will see it called both, depending on what you are reading.  DCIS only turns into invasive cancer 30% of the time, but the medical community does not know how to tell which forms of DCIS will fall into that 30%, so they always recommend taking it out). 

When you have surgery to remove the area of concern, the pathologist will test to see if there are any invasive cancer cells as well.  The reason for having a lymph node removed is to test for whether any cancer has spread through your lymphatic system.  You should ask your doctor if he/she will just be doing a sentinel node test, in which only the sentinel lymph node is taken out. 

If dealing with breast cancer, DCIS is considered the best form to have because (a) it is non-invasive, and (b) it usually does not require you to go through chemotherapy.  You usually have the option to chose between two surgical options:  (a) a mastectomy without radiation, or (b) a lumpectomy (partial mastectomy) with radiation.  Your doctors may or may not also recommend taking a 5-year course of tamoxifen for you.

It's normal to be in shock when you first get the diagnosis and then walk out and have tons of questions later.  You should  write down all of your questions and set up a follow-up appointment with your doctor.  Be sure to take someone with you who can take notes and serve as a second set of ears (even though I took notes during my appointments, I would sometimes forget details and it was helpful when I had gone with a relative or friend who would then remember what the doc said). 

I would also highly encourage you to get a second opinion, even if you love your original doctor.  I went to three different breast care centers before deciding on a treatment plan and chosing a team of doctors for treatment.  You don't have to get as many opinions as I did.  But I will say that it is the combination of what I learned from all three that made me the best informed.  My first two doctors said that patients typically go from diagnosis to surgery within 2-3 weeks.  However, I took 2 months to make up my mind, research things on my own, pray, find a doctor who I was on the same page with and then start treatment.  Your gut will let you know what feels right for you.  Don't move forward with anything until you feel comfortable and that you understand exactly what is going on.

pamallen.....hello. I know how you feel.I have been on rollercoaster ride since aug.just finished 33 rounds of rads.not really that bad.Lumpectemy means the same as partial mastectomy.All of these new terms to know. lucky us.This board helped me os much.Uusually, w/true dcis there is no lymphnode involvement which is a good thing. Hang in hthere girl.It could be a whole lot worse.

Why is radiation being given for DCIS?

pamallen -- "partial mastectomy and radiation"  Can you see another breast specialist?

Twiddle and pamallen,

The recommended treatments for DCIS are lumpectomy + radiation therapy or mastectomy.  Some doctors advocate lumpectomy without radiation therapy for selected patients with wide margins but that does not have as good a foundation of data to support the recommendation.  Four clinical trials show that radiation therapy after lumpectomy reduces the rate of recurrence by approximately 50%.

prektchr--No meds so far as I know.  But you're right: the "serpent" is out.  And may it never return.

barbcard2...amen to that sister.

Blondee - I replied to your other thread but did want to take this opportunity to let you know that I did 6 weeks worth of rads and have had zero -- absolutely zero -- regrets. My BC was on the left side and I'm fairly young (40s, thus hopefully a lot more time) so I faced the added concern about long-term effects on my heart. My treatments were in the prone (face down) position, which is considered safer for us lefties. I never really had the tiredness that I'd been afraid of and read so much about, and now in hindsight do truly believe that the mental anguish beforehand was the worst part of it all. My breast is still here and looks the same as before except for the lump. scar -- it's not harder, smaller, bigger, or whatever other things people have reported -- and I love it more than ever before. Whatever days or years I can keep 'em, I'm thankful for, and I view the rads as worth the risk (tamox. is another story). 

DCIS is cancer, plain and simple, just thankfully caught early. I had no risk factors, no family history, genetic testing came back negative, breastfed kids, never took birth control pills yada yada yada, sometimes we're just unlucky.  But then again, lucky that it was caught early.

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When I grow up I want to be an old woman. Jan.'10 lumpectomy:3+cm grade 2 DCIS+1.75mm grade 2 IDC found in final path (surprise),stage 1a,0/3 nodes,25 full+5 boost rad zaps.
Diagnosis: 11/1/2009, ER+/PR+