Mother just diagnosed- Stage zero Ductal Carcinoma

Roxy_89

My mom is 51 years old and had a mammogram recently. Her doctor had told her "Oh just do mammograms once every 2 years", but my mom told her doctoe she prefers to do them once a year. After her mammogram recently, they told her she has calcification and needs a biopsy. She did the biopsy and the result came back and they said she has stage zero ductal carcinoma.

I have no information about how big, small, how many mm's, the width, the length, etc...They just told her today during a brief phone call. They did not give us any specific details about it. They said she will go talk to a surgeon about this condition and he will discuss what will happen to her. They made no mention about meeting a radiologist or oncologist or anything yet. All they said is the surgeon will discuss all the issues during the appointment. I am guessing during their appointment he will tell her all of the details and I will have more insight about what grade it is and all the other specifics. I am hoping to be able to listen in through a conference call so I can ask him all the questions that I have.

She is 51 years old and has been on the birth control pill for years since she had a heavy period in her younger days. She stopped taking the birth control pill 2 months ago because her DR suggested she stop so that menopause could happen naturally. She hasnt had a period since February.

My questions:

1. I am wondering if going off the birth control pill has anything to do with her getting this ductal carcinoma. Since horomones are probably changing in her body and the body is getting used to being off the pill, maybe this has an impact? I dont know if she is going through menopause yet or not. She has not gotten her period yet, so maybe she is experiencing menopause?

2. Does being in the stage of menopause have any impact on her diagnosis? Is it better for her to have gotten this diagnosis when she is like 5 years post menopause or is it better she get this diagnosis now with the beginning of menopause arising? I dont know if this has any importance or is even relevant.

3. I am 28 years old, do I need to worry about this being a genetic thing that I may get when I am 41 or 45 or 50. Do I need to start mammograms now?

Her previous year mammogram was fine. So this cancer must have developed or was born recently. Im expecting it to be very tiny hopefully and not needing radiation.

LisaAlissa

Hi Roxy!

If it's Stage zero Ductal Carcinoma that means it's DCIS (ductal carcinoma in situ). You will want to read "A layperson's guide to DCIS" which was written (and updated by Beesie, a member here). You may even want to read it several times (there's a lot of information there ;-) ).

Your Mom is entitled to get copies of all of her test results and procedure reports. For instance, based on what you said, she should have (or get) a copy of her mammogram report (the report sent to her doc, not just the "patient letter)," the biopsy procedure report (from the person who performed the biopsy) and the pathology report on the biopsy sample (including any addenda to that report). She may also want a CD with the actual mammogram images so that she can provide them to another doc if needed at some point.

There is a booklet "here" which can help her collect information about her diagnosis. Some docs even provide the booklet to their patients (mine did).

Your Mom, of course, gets to decide who attends appointments with her. A second set of ears can be helpful, but even if she doesn't choose to have you with her, she might want to ask the surgeon if she can record the appointment (with a cell phone, for example) so that she can listen to it again later. It's hard to hear/take in the details when they're talking about "your" cancer. Many docs will be fine with recording.

About your questions. I'm not a medical professional, so take that into account:

1. This doesn't matter. She has DCIS now, so how she got it really isn't relevant.

If she were still taking birth control pills (or hormone replacement therapy), it is likely that she would be told to stop them immediately. One of the things the pathology report will tell you is whether her BC is ER+/PR+. If so, those hormones have the potential to "feed" the cancer. Which she will want to avoid.

2. Her menopause status can affect treatment. For example, aromatase inhibitors (AIs) can't be used with premenopausal women. Generally, menopause is determined by a year without a period. However in your mother's case, they may be able to utilize a blood test to determine whether she is in peri-menopause or menopause.

There is no point in thinking about whether it would be better to have gotten her diagnosis earlier or later. She has it now. Her docs will put together her treatment plan based on her current circumstances.

3. Your mother's doc may be ask her to consult with a genetic counselor about testing, given her relatively young age for a BC diagnosis. Each insurance company has it's own criteria about when genetic testing is covered. But it's something for her to consider. If your mother is tested, then you will have a better idea of your genetic risk (at least from your mother's side of the family).

As to the age of the DCIS? It may simply have not been sufficiently developed to be detectable on earlier mammograms...it may have been developing for many years. I don't think it's possible to know.

Finally, radiation is not necessarily something to be avoided. For example, it might let her choose to keep her breast. For some kinds of BC, lumpectomy + radiation has results as good as (or even slightly better than) a mastectomy.

I'd suggest you share this forum with your Mom. She might well want to talk with others who are walking the same path.

HTH,

LisaAlissa

mustlovepoodles

One good thing about DCIS is that it's not invasive. It is still contained within the ducts. If it is small, the surgeon will probably recommend a lumpectomy followed by radiation treatments and an anti-hormonal (your body continues to make estrogen even after the ovaries stop producing it.)  Of course, the tissue will be sent to pathology for a full examination to make sure there isn't anything else to be concerned about.

As for how quickly it developed, I can pretty much guarantee that it didn't start within the past 2 months.  Breast cancer is usually pretty slow growing, over years rather than months.  I've had mammograms every year since I was 40, along with multiple ultrasounds and extra mammo spot compression films. They never saw a thing. Starting 4 years ago, I started having mammos every 6mo because they were following some calcifications in the left breast. Imagine my surprise when something showed up in my right breast 2 years ago! Not only was it there, it was big as a cherry!  How in the heck did that get missed? All I can surmise is that because it was located high up in the breast, almost under the arm, it just didn't get captured on film until it got bigger.

My suggestion for you re: genetic testing is to discuss it with your doctor.  If you have a strong family history of breast cancer, you may want to have genetic testing. 

Artista928

Great info provided so far. My mom was dx'd last Oct. She's ER+ had a 2.5 cm tumor and HER-. Surgery is for sure as you need to get that thing out. Whether is mastectomy of one or both or lumpectomy needs to be discussed with the breast surgeon. My mom is 72 so she did lumpectomy and radiation and is now on aromatase inhibitor. No need for chemo at stage 0 so that's very good. With radiation depends on the size of the tumor and most who do lumpectomy do the radiation because even with a clear margin, some suckers still could be lurking. Mastectomy most don't do rads but some do. You get all the info, have the surgery, see the final surgery path report and figure out best treatment plan. It's really after surgery where you have a much clearer idea. Up till then they are giving best guess by exam and scans.

I got bc before my mom so when I told MO she had DCIS, I got the talk on genetic testing. Only her and I have it in our family that I know of (don't know all of my dad's sisters). I don't have kids. I'm 52 and am in permanent menopause. But MO is kind of pushing for it because the indicators they use is not just for bc but other female cancer and prostate cancer in men in your fam. This was news to me. It wasn't just a pass on to your dau or other females in your fam, but any blood male relative in your fam. My situation is a bit diff. I never told my fam I have bc because of anxiety issues all around. Bro knows because he's comforting. Bro told me about mom who told him not to tell me. lol. But he did since he wanted to get some advice from me to pass on to her along with the link to this board in the name of my friend went through this.

So I spoke to bro and he said don't bother. In our fam's case, bro said he doesn't want to know if he's high risk for prostate cancer, dad's 78 and doesn't need to be bothered at his age, and the rest of the fam both sides male and female young and old would freak out. I would have to let everyone in on the secret I've kept from them for all of our sakes because for males both sides of the fam, prostate cancer and for women both sides of the fam, bc, ovarian, and something else is in that panel---not just bc.

Angelina Jolie did the testing and after bilat mastectomies, she had her ovaries removed as well as that came back high risk as well. Not sure about the uterus.

My MO brings it up every appt. I see her every 3 mo now. No pressure. I told her not a good idea with my fam. All would freak, and no one would change habits nor get tested so no point. Bro is right. All it would cause is major chaos and anxiety/headache for me basically for the rest of my life. No thanks. I'll roll the dice.

So genetic testing is up to you. You are young. If it came back positive, which only roughly 10% of familial bc does come back genetic, what would you do? You can already eat, exercise, etc. Or maybe you would pull out the organs high risk as preventive like Jolie did. Things to consider. Hopefully you're not in my shoes with my fam status and can openly discuss things in a rationale way. I'd get a one way ticket to the psych ward this time if this came out to my fam (been locked up before). GL!

Roxy_89

Thanks for the helpful info. I read the PDF document and the laypersons guide. It really helps! I will re-read and re-read!

1. I am confused about one thing, if you have DCIS stage zero, do you refer to your "cancer" as a tumor or as abnormal tissue or just cancerous cells? Because what is the doctor going to be removing when he does a lumpectomy? Is he removing a tumor that is found in the milk ducts or is he removing tissue that has abnormal cells or what? I mean what is the correct terminology to use when speaking to the doctor. Do I say "Will you be removing my mom's tumor?" Do I say "Will you be removing abnormal cells" I just want to know the correct terminology so I can understand exactly what this is. Is it called tissue? tumor? cells? what the heck is it LOL.
2. Also, when people say they had grade 1, or when they say theirs was 2mm or 3mm etc.., is this something that is only known after surgery or can the doctor tell us right now what grade, size, etc...it is. Would it be ignorant to ask him now "so what is the size of it or what is the grade of it?

Regards,

Roxy

MTwoman

roxy,

The terminology people use with DCIS actually varies. Some call it pre-cancer, some cancer. There is actually a thread on one of the forums for women who've had DCIS to discuss what they call it. Researchers are still trying to better understand DCIS, and which characteristics have a higher probability of turning invasive, and which ones not. Some women who have DCIS have lumps (like me) and some have areas of calcifications that showed up on mammography. You can use the terms tumor/lump/DCIS/bc, the surgeon will understand I actually had a lump that go diagnosed, and then after my lumpectomy I had an mri (prior to radiation) that showed 2 more areas of concern that turned out also to be DCIS (which is why I had a mx and no radiation).

The grade is determined by pathology. They look at the cells under the microscope the grade is based on things like cell's organization (or lack thereof). More organized = grade 1 (less aggressive) Least organized = grade 3 (most aggressive) Moderate organization = grade 2 (moderately aggressive). sometimes you will get a grade based on the initial biopsy, which changes based on the remaining tissue that is removed and also biopsied. Her final stage/grade will be determined when all of the findings are considered together. It is possible that an accurate measurement (mm) was made during the imaging, but again, once the tissue is removed they may have a different (more accurate) measurement. So it wouldn't be ignorant to ask, but realize that these are provisional stats and could change after surgery.

BarredOwl

Hi Roxy_89:

On this site, I found this link (below) with illustrations to be helpful for understanding ductal carcinoma in situ ("DCIS"), which by determination of the pathologist appears to be physically confined to the inside of the ducts, and which by this pathologic criterion is considered "non-invasive" (i.e., has not broken through the wall of the duct into the surrounding breast tissue).

The page also includes some information about grade, and farther down (keep scrolling), there are explanations and illustrations of the terms used to describe the architecture or how "clogged" the duct appears (e.g., solid, cribiform), which you may see in pathology reports.

http://www.breastcancer.org/symptoms/types/dcis/diagnosis

In the US, DCIS is commonly tested for estrogen receptor ("ER") status and progesterone receptor ("PR") status. Here is a very short introduction from the main site:

http://www.breastcancer.org/symptoms/diagnosis/hormone_status

Treatment Options:

The majority of patients diagnosed with DCIS elect to treat it with surgery at a minimum, in accordance with current consensus guidelines for treatment of breast cancer. In general, the options are:

(a) Lumpectomy (without sentinel node biopsy), with radiation or (less commonly) without radiation

- Entails surgical excision;

- May entail possible re-excision(s) to obtain adequate surgical margins;

- If disease is very extensive, may lead to mastectomy;

(b) Mastectomy (with sentinel node biopsy), typically without radiation

- Many patients with DCIS can be treated by mastectomy alone (without radiation), and this may be one factor behind this choice. However, in a small percentage of cases, certain findings from the surgical pathology or sentinel node biopsy may lead to a recommendation for post-mastectomy radiation for DCIS.

Initial recommended surgical options are affected by a variety of factors, such as the extent of biopsy-proven disease relative to the size of the breast, as well as imaging results, and genetic testing results (if applicable).

Keep in mind that her current diagnosis of Stage 0 disease is an initial assessment only. Final "pathologic staging" will be determined after the pathology from all surgeries and biopsies is available. Following surgery, sometimes an area of invasive breast cancer (e.g., invasive ductal carcinoma (IDC)) is identified. According to the American Society of Clinical Oncologists (ASCO), in women diagnosed with apparently pure DCIS by minimally invasive biopsy (e.g., stereotactic core-needle biopsy), invasive cancer is reported in 10% to 20% of cases overall, approximately half of which are limited to microinvasive cancer (microinvasive or T1mi: Tumor ≤ 1 mm in greatest dimension).

Under current consensus guidelines for the treatment of breast cancer, those whose final diagnosis is pure DCIS (Stage 0) are never treated with chemotherapy or HER2-targeted therapy (e.g., trastuzumab (Herceptin)). However, those who have ER+ and/or PR+ disease (especially with lumpectomy) may be offered endocrine therapy (e.g., usually Tamoxifen, although some post-menopausal women may be offered the option of an Aromatase Inhibitor).

More General Information:

Many new members find these comprehensive posts from Beesie to be extremely helpful. You may wish to bookmark them, and return to them as you move forward to re-read, because it is a large amount of information to absorb.

A layperson's guide to DCIS (original post) (also linked above by LisaAlissa):

https://community.breastcancer.org/forum/68/topics/790992?page=1

Lumpectomy vs Mastectomy Considerations (see Jun 14, 2013 post from Beesie

https://community.breastcancer.org/forum/68/topics/806074?page=1#post_3589278

The implications for you of your mother's breast cancer diagnosis (a "first degree relative" of yours (i.e., a parent, sibling, child)); any additional personal or family history of breast cancer and/or certain other types of cancers; and the results of genetic testing of family members (if indicated and elected), may impact understanding of your risk profile. You can follow-up with your health care providers in due course (not an emergency) to seek advice regarding your personal risk profile and to obtain recommendations regarding screening, possible referral to a genetic counselor for a formal genetic/familial risk assessment, etcetera. Remember that your personal risk profile may differ somewhat from your mother's for a variety of reasons (e.g., your paternal family history and paternal genetic contributions are not identical; if present in a parent, then each child has a 50% chance of inheriting a single-gene mutation in a cancer predisposition gene from that parent).

You will find a lot of information and support here.

Best,

BarredOwl