DCIS, grade 2, 5mm.....anyone know what all this means?

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PAYTONnPRESLEYSmomma
PAYTONnPRESLEYSmomma Member Posts: 17
edited July 2015 in DCIS (Ductal Carcinoma In Situ)

Hello all, I unfortunately find myself here at 34 years old after a biopsy done after finding calcifications. I had a meeting with a surgeon and he said he wanted to send me for an MRI, chest X-ray and blood work prior to discussing treatment this Wednesday. Now when I met with him he never went into detail about what exact type of cancer I had, he just said I have it. Upon reading on here it seemed everyone at time of consult was told what kind, stage and a whole slew of other info. So I called his nurse this morning and she told me I have DCIS, stage 2 and it's 5mm. I don't really know what any of that means and I don't think I can take any more googling. Was just wondering if any of you can shed a little bit of light onto what all that means. Thank you so much!

Jenny

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  • PAYTONnPRESLEYSmomma
    PAYTONnPRESLEYSmomma Member Posts: 17
    edited June 2015

    not sure I belong here after all. I called and had them fax me over my path report. Here is what it says, any and all help dissecting this is much appreciated! Thank you!!!!!

    Right breast 10 o'clock, stereotactic-guided core biopsies:

    Invasive ductal carcinoma, 1.2 mm focus, Nottingham grade 2/3 (histology grade 3, nuclear grade 2, motor of grade 1), in a background of areas of ducal carcina in situ, intermediate to high nuclear grade, solid and cribriform types with extensions into lobes, showing focal central necrosis and calcification

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited June 2015

    Hi Payton:

    Sorry for your news. Below are some introductory facts and a few links to some very good materials, which can help you understand this.

    I see in the title you say "Grade 2" and in your message you say "Stage 2". I think you mean Grade 2. "DCIS" stands for "Ductal Carcinoma in Situ." It is a non-invasive form of breast cancer that is confined to the ducts. It is by definition a "Stage 0" cancer, or the lowest stage with the best prognosis.

    Here is a short intro to DCIS on this site:

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

    DCIS comes in three grades: Grade 1, 2 and 3 (or mixtures). Grade 1 DCIS cells appear most like normal cells, Grade 3 are the least like normal cells, and Grade 2 is in between.

    Here is a short summary about grades with pictures, also from this site:

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

    5 millimeters is quite small, but a biopsy only takes a small sample, so this is likely to be a preliminary assessment of size. Sometimes if they sampled two different areas in the biopsy, the distance between them gives a minimum estimate of the size. The additional diagnostic testing you are having (MRI) may provide more information about size/extent of disease. The smaller it is, the more options you have when considering surgical removal in due course.

    Do request a copy of your pathology report and other reports. Call the office or nurse navigator and ask how you can get a copy. If they do not have an e-portal or won't fax it to you, you can stop in and pick up a copy in person some time (e.g., on a future visit, which is what I did). Don't worry if you don't understand it all; understand what you can, and feel free to ask your doctor questions.

    For a more detailed introduction to DCIS, please read Beesie's excellent post here:

    https://community.breastcancer.org/forum/68/topic/...

    You may need to read it a few times, and some of it may not apply to you, but it's one the best things I've read.

    Best to you.

    BarredOwl

    Dx Right: DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Stage 1a; Grade 2 (IDC); 0/4 nodes; ER+/PR+ (DCIS);

    Dx Left: DCIS (5+ cm); Stage 0; Grade 2 (majority) and 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)); ER+/PR+.

    Bilateral mastectomy with sentinel node biopsies (without reconstruction) 9/2013

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  • april485
    april485 Member Posts: 3,257
    edited June 2015

    Not for sure positive, but it sounds like you have DCIS with a small invasive component. Not sure if it is DCIS Mic or DCIS and IDC. Hopefully someone who knows more about this will come along soon. Hugs...this is not what  we expect but we all get through it and we will help you as much as we can.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    All great info, BarredOwl! Thanks for reaching out.

    Jenny, we're sorry to hear of your diagnosis, but you will surely get all the answers and support you're needing here in our wonderful Community. Please don't hesitate to reach out if you need more answers or assistance.

    We're here for you!

    --The Mods

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited June 2015

    Hi Payton:

    Sorry for your news. I deleted my original post due to your updated info. Here are revised comments, with the same links for you.

    "Ductal Carcinoma in Situ" or DCIS is a non-invasive form of breast cancer that is confined to the ducts. It is by definition a "Stage 0" cancer, or the lowest stage with the best prognosis. Over time, the cells can break through the wall of the duct, becoming "invasive", and once they do, the rogue cells are "invasive ductal carcinoma" or "IDC". When there is a mix of DCIS and invasive disease present, the treatment is based on the stage of the invasive disease. A 1.2 mm invasion would be "Stage 1", and would still have a very favorable prognosis.

    Here is a short intro to DCIS on this site:

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

    Here is a short summary with pictures about DCIS and how it can progress to invasive cancer (breaking through the wall of the duct), also from this site:

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

    1.2 mm is very small. The additional diagnostic testing you are having (MRI) may provide more information about size/extent of disease. The smaller it is, the more options you have when considering surgical removal in due course.

    For a more detailed introduction to DCIS versus invasive disease, please read Beesie's excellent post here:

    https://community.breastcancer.org/forum/68/topic/...

    As Beesie notes, it is very common to have DCIS and IDC together, like you. You may need to read it a few times, and some of it may not apply to you, but it's one the best things I've read.

    Best to you.

    BarredOwl

    Dx Right: DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Stage 1a; Grade 2 (IDC); 0/4 nodes; ER+/PR+ (DCIS);

    Dx Left: DCIS (5+ cm); Stage 0; Grade 2 (majority) and 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)); ER+/PR+.

    Bilateral mastectomy with sentinel node biopsies (without reconstruction) 9/2013

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  • PAYTONnPRESLEYSmomma
    PAYTONnPRESLEYSmomma Member Posts: 17
    edited June 2015

    thank you all for your quick and very detailed responses. Barredowl thank you more then you know, you have eased a lot of my wondering mind and given me some much needed hope! I especially liked the "favorable outcome" part! Thanks again I will keep you all posted as I have another meeting with the surgeon on Wednesday.

    I was thinking of having a second opinion because I am not to confident with this hospital and plus I live in Chicago, a perk of living in a big city lots of medial options. But on the other hand I feel the urgency to just start whatever he suggest and get the ball rolling. Any thoughts on 2nd opinions?

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited June 2015

    Hi Payton:

    I was also thinking that in your Wednesday meeting, be sure to ask about whether any other testing of the tumor samples was or will be performed, including testing for the estrogen receptor (ER) and the progesterone receptor (PR). ER and PR testing is typically done for all DCIS and invasive tumor samples. For more info on hormone receptor status (ER, PR), see the info on this site:

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

    Also, for invasive tumor samples, ask if HER2 testing was or will be performed, or if not, why not. (HER2 is the human epidermal growth factor receptor type 2.) (Sometimes, small invasions are not able to be tested, maybe because of a limitation on sample availability.) So be sure to include ER, PR and HER2 status in your question list, and if results are available, be sure to understand what tissues were tested (DCIS, invasive, or both). For more info on HER2 status, see the info on this site:

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

    Regarding a second opinion, once you have a recommendation from your current team, I strongly support obtaining a second opinion from a top notch hospital breast cancer center. Check with your insurance company to see if a second opinion is covered and if the hospital/doctors are in-network. (I have also read that if surgery is proposed, some insurance plans actually require a second opinion.)

    I understand the desire to get those bad cells out ASAP! But a book I have, written by a breast surgeon who had breast cancer herself, says: "Don't be too shy or feel to rushed to do so [get a second opinion]." There may be special circumstances where time is of the essence, but I would not think this to be the case with what you know so far (Stage 0 and 1).

    The second opinion will entail a review of all your imaging (mammograms, ultrasound, and MRI (if any)), all associated written reports, and a fresh review of the actual pathology slides (which are sent overnight to the other institution), plus an independent recommendation regarding your surgical treatment options. There may be additional testing recommended. This process can give you confidence in your decision-making, makes you better informed, and can make some decisions a lot easier.

    When setting up the second opinion or in that consultation, you may want to inquire whether in view of your family history, age and presentation, you should consider genetic counseling and possible genetic testing. (Consult with your insurance at appropriate points, of course).

    I was initially diagnosed in a community hospital, and sought a second opinion in Boston at Mass General (MGH). I am extremely glad I did. It ended up changing my treatment plan, because MGH recommended a further diagnostic mammogram and they found DCIS on the other side. This led to a bilateral mastectomy, instead of unilateral mastectomy. (Keep in mind I had 5 centimeters of DCIS, which was pretty much the whole thing!). Because surgery sometimes finds additional issues (your diagnosis can change after the pathology is performed on surgical samples), I decided that if I ended up having to have chemo or something down the line, I'd rather have a relationship with and be treated by the heavy hitters in Boston.

    By the way, if you're interested, the book I quoted above is: Carolyn M. Kaelin and F. Coltrera, "Living Through Breast Cancer", 2012. It's available as an eBook in iTunes and Amazon. It was published in 2012, so it is not perfectly up to date on specific therapeutic regimens or every mode of reconstruction, but it's a great starting place and the author is both a breast surgeon and patient

    It is a lot to absorb, but you will get through it step by step.

    BarredOwl



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  • april485
    april485 Member Posts: 3,257
    edited June 2015


    ThumbsUp Great information Barredowl.

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  • PAYTONnPRESLEYSmomma
    PAYTONnPRESLEYSmomma Member Posts: 17
    edited June 2015

    yes barredowl thank you more then you know for all the info and comforting words. It's much better to read your information as opposed to the stuff I google that sends me straight into a panic attack.

    Also thank you for the reassurance on the 2nd opinion. I was refereed to a general surgeon and I am sure he is excellent at what he does but I would like a second opinion by someone who specializes in this only. I actually have gotten rave reviews from a few people about a single Dr I am gonna try and get in with ASAP. He is with A breast care center and his online reviews are all great. I am shocked at the amount of people who have been through this battle of breast cancer in my life that I didn't know about. And it's encouraging to hear there stories and see them here strong and healthy so many years later!

    I am sitting waiting for my chest X-ray and MRI and I feel it's gonna be a loooong wait....kinda seem disorganized here! :) thanks again for all the useful info!

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  • FemaleAthlete
    FemaleAthlete Member Posts: 38
    edited July 2015

    Hi, if you are uncomfortable with your doctor than by all means get a second opinion. It is not uncommon to request one and if your doctor objects to it....than you really might want a second opinion. If for nothing else other than a piece of mind. Most doctors will support your decision for getting one. Check with your insurance plan and make an informed decision.

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  • newlydx15
    newlydx15 Member Posts: 20
    edited July 2015

    Myself at age 35, diagnosed with Infiltrating Ductal Carcinoma grade 2, and am curious about how stage relates to grade, also why is chemo recommended before a lumpectomy when the tumor is a 2.5cm?


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  • newlydx15
    newlydx15 Member Posts: 20
    edited July 2015

    Jenny, as young women, we need all the support, information and advice we can get during this overwhelming time, I'm sorry at such a young age you are facing this, you are not alone


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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2015

    Hi Newly:

    Grade is a measure of how different the cells look compared to normal cells. The higher the grade, the more different. Stage looks at size of tumor and whether there has been any spread. This site has brief intros to both concepts:

    Grade:

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

    Stage:

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

    As for your question about chemo before lumpectomy, hopefully someone knowledgeable on that can comment. The term for chemo before surgery is "neo-adjuvant" chemotherapy. You might want to start a separate thread with an informative title (neo-adjuvant chemo for 2.5 cm tumor?) in the IDC forum or another more relevant one:

    https://community.breastcancer.org/forum/96

    Sorry you are dealing with this.

    By the way, at the bottom of the page about grade is a link to a great pamphlet, which you can get in pdf.

    BarredOwl


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