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Found out this morning I have ductal carcinoma

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dallas115
dallas115 Member Posts: 21
edited April 2021 in Just Diagnosed

That is what my Dr. said, ductal carcinoma, that's all she knew at this point. That was from a needle biopsy I had last Wed. I have an appt. at a breast clinic this Friday. I get my IUD removed tomorrow. I am crushed and have cried on and off all day. I am considered "high risk", all the women(maternal side) in my family have had breast cancer, my mother had DCIS, had a lumpectomy and radiation, she was triple negative. She was 59 when it happened to her, I am 46. I have my breasts looked at every six months, I alternate between mammogram and MRI. A year ago after a MRI showed I had a suspicious area, it was biopsied through MRI(because it was so small), it came back as benign(sclerosing adenosis). Six months later at my mammogram, everything was fine in that area. A few weeks ago at my latest MRI, same spot, Birads 4. Before the biopsy the mass measured something like 1.0cm x 1.2cm x 0.7cm, something like that, I am so out of sorts right now its hard to remember. I do know that at the ultrasound/biopsy the Dr. told me that my lymph nodes looked good and that the MRI also showed that this mass was localized. I have so many questions...so I guess the first biopsy that was reported benign was a false negative...which I know I possible. I have also had pain in that area of my breast.

I just went to my chart, I had to:

MAMMOGRAPHIC FINDINGS: The tissue is heterogeneously dense which may obscure detection of

underlying small masses. There are no suspicious calcifications in either breast. No masses are

identified within the right breast. Currently, within the superolateral lateral left breast at

the approximate 1:00 -2:00 axis is a spiculated mass. There are no associated calcifications.

The axillary regions appear unremarkable without evidence of adenopathy. Recommend sonography

of the left breast and left axillary region.

In addition to standard review, the examination was analyzed for possible abnormalities using a

computer-assisted detection device.

SONOGRAPHIC FINDINGS:

Left breast:

Sonographic evaluation of the superolateral left breast was performed. At the 1:00 position 5

cm from the nipple, is a heterogeneous ill-defined mass measuring 1.2 x 0.7 x 1.0 cm. A biopsy

clip is noted in this region. The surrounding tissue is otherwise unremarkable as is the

overlying skin.

Comments

  • minustwo
    minustwo Member Posts: 13,162
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    Dallas - that's not clear enough to speculate. If it's DCIS (ductal carcinoma in situ), that's now considered a 'pre-cancer'. If it's IDC, that's invasive ductal carcinoma. There are a number of things that use the word "ductal".

    The biopsy report will also show whether you are ER/PR positive or negative. If it is IDC, they will also have tested for HER2 positive or negative. All of those have to be reported before you can discuss the path forward.

    The hardest is the waiting. Try to find something this week to distract yourself from worrying. Good luck

  • dallas115
    dallas115 Member Posts: 21
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    Thank you,

    I know I need more information, I just added to my post from my chart. Thank you for your reply. Tomorrow I will start getting things done. I just can't help but feel like a burden to my husband and family today. I know I need to keep this in perspective...thanks again:)

  • minustwo
    minustwo Member Posts: 13,162
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    Dallas - don't worry about getting things done. Just pick something you like do to ESCAPE. Binge TV, a good mystery novel, long walks, etc. You are not a burden & have valid concerns. And you don't need to even share anything yet until you really have something to tell.

  • moderators
    moderators Posts: 8,232
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    Dear Dallas115,

    Welcome to the BCO community. We are sorry for your diagnosis. We are glad that you reached out so quickly and joined our members. You will find lots of support and helpful information here. Please keep us posted on how things go. Along with our members we are here to direct you to finding the information that you need and the best ways to connect with others to support you along the way.

    The Mods

  • dallas115
    dallas115 Member Posts: 21
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    Just spoke to a nurse, she released the biopsy report, I know a little more, she said I have both kinds of ductal carcinoma. Will have genetic testing done Friday to see if I have the BRCA gene.

    Left breast mass, 1:00, 5 cm FN, biopsy:

    - Invasive carcinoma of no special type (invasive ductal carcinoma)

    - Tumor size: at least 5 mm (multiple cores involved)

    - Preliminary histologic grade: 1 (of 3)

    - Ductal carcinoma in-situ (DCIS), intermediate nuclear grades, cribriform pattern, without comedonecrosis

    - Lobular carcinoma in-situ: Not identified

    - Microcalcifications: Not identified

    - Breast cancer biomarkers are ordered and results will be reported as an addendum.

    Note: Immunohistochemical stains for p63 and SMMHC show retained and loss of expression of myoepithelial cell layers in the in-situ and invasive carcinoma, respectively.

  • lw422
    lw422 Member Posts: 1,404
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    Dallas115--so sorry to hear of your diagnosis; we all understand how you are feeling right now. Hugs to you. You have landed at a good place for information and people who are on this path we never wanted to walk.

  • beesie.is.out-of-office
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    Hi Dallas,

    Sorry to hear about your diagnosis but glad that you've found your way here.

    Having both IDC and DCIS together is very common. This is because most invasive breast cancers start as DCIS. The cells initially develop as DCIS within the ducts of the breast, and then a few of those cells undergo a further biological change that allows them to evolve to become invasive ductal carcinoma (IDC). Once the cells are IDC, they break through the wall of the duct and move into the open breast tissue. While some of the cells go through this evolution to become IDC often there are still cells left in the duct that never evolved further than being DCIS - and this is why DCIS and IDC are often found together. Because the DCIS cells are confined to the milk duct, they can't move out of the breast and metastasize. But the IDC cells are in open breast tissue and from there they can spread - and this is why the invasive cancer is the more serious condition. Therefore whenever someone has both IDC and DCIS together, the diagnosis is IDC, the staging is based on the size of the IDC and the treatment is based on the IDC. The DCIS needs to be surgically removed but otherwise can pretty much be ignored, since anything done to treat the IDC will be more than sufficient to treat the DCIS.

    The next important information is the ER status, PR status, and HER2 status. This will be critical to the treatment plan, and the information should be available from the biopsy report.

    Are you seeing a genetic counsellor for the genetic testing? And do you know if the genetic testing will be a full panel test? BRCA1 and BRCA2 are the best known breast cancer genes but there are actually many other genetic mutations that potentially increase breast cancer risk. BRCA genes are strongly associated with ovarian cancer and prostate cancer while these other genes have associations with other cancers. Often a family health history is taken by the genetic counsellor so that the most appropriate genes are tested for. A full breast cancer panel these days might include 30 genes or more.

    Let us know when you receive the rest of the pathology information from the biopsy, and we'll help you through it.


  • dallas115
    dallas115 Member Posts: 21
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    Good Morning Beesie,

    Yes, I am having my blood drawn for the genetic testing this Friday, I am pretty sure they test for a lot of stuff, the company is Ambry Genetics. I remember watching a video about the testing, I was kind of overwhelmed by the amount of genes that they would be looking at. I was supposed to get the test done months ago, but I just freaked out and rescheduled. I wasn't afraid of knowing the results of the BRCA genes but there were other genes, and they had different levels of certainty. There were like 50plus genes on there...some you could do nothing about if you knew...so I just ignored it....which I normally don't do.


  • dallas115
    dallas115 Member Posts: 21
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    Update:

    RESULTS SUMMARY

    ESTROGEN RECEPTOR (ER):

    Positive

    PROGESTERONE RECEPTOR (PR):

    Positive

    KI-67 PROLIFERATION RATE:

    High

    HER2 IMMUNOHISTOCHEMISTRY:

    Equivocal 2+

    RESULT DETAILS

    Estrogen Receptor

    Interpretation:

    Positive

    Cells with nuclear reactivity: 58 %

    Intensity: Strong

    Progesterone Receptor

    Interpretation:

    Positive

    Cells with nuclear reactivity: 96 %

    Intensity:

    Strong

    Ki-67 (MM1) Proliferative Index: 34 %

    HER2 Immunohistochemistry

    Interpretation:

    Equivocal 2+

  • beesie.is.out-of-office
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    Okay, so ER+ and PR+, but HER2 2+ equivocal, which means that they don't know yet and a different test is needed. That happens a lot.

    IHC pathology testing is quick and inexpensive but for HER2, it has a large range that is considered equivocal, or uncertain. HER2 0 and 1+ is categorized as HER2-. HER2 3+ is categorized as HER2+. HER2 2+ is equivocal and now the more expensive but more definitive FISH test will be run. If you look at people's signature lines on their posts, you will see a lot that say "HER2- (FISH)" and some "HER2+ (FISH)". So it can go either way, although I recall reading one study that found that approx. 30% of equivocals end up being HER2+ while 70% are HER2-.

    HER2 status is one of the biggest factors in the development of the treatment plan, so unfortunately you won't know more until the FISH test result is in.


  • LivinLife
    LivinLife Member Posts: 301
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    Just want to chime in here Dallas to send support and gentle hugs! You've received a lot of good info let alone support already... glad you're on the site!

  • dallas115
    dallas115 Member Posts: 21
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    Update:

    Just got back from seeing a breast surgeon, she says it is a T1 and is stage 1A, she does not believe it has spread. It is 1.2 cm. She is recommending a lumpectomy and radiation, followed by anti-estrogen therapy. We still need to wait for the her2 result, that might add chemotherapy. She *thinks* that will be negative, although she could be wrong. Also, she wants to see the genetic results. She did mentions mastectomy but believes breast saving will be enough. So...I mentioned to her that my upper arm has been hurting, like a dull ache, and off for about 10 months....she said she didn't think it had has anything to do with my BC, I also told her I have been feeling under the weather the last few days. So she sent me for a quick x-ray, when I saw the results I called her office, I am waiting for a call back. Not sure what to think?

    There is nonspecific heterogeneous lucency and mineralization along the proximal humeral

    diaphysis straight on the lateral projection. No periosteal reaction or extraosseous soft

    tissue component. Alignment is preserved. Bony mineralization is otherwise within normal

    limits. No displaced acute fracture or dislocation. Visualized lung parenchyma demonstrates no

    concerning abnormalities. There are no concerning soft tissue abnormalities.

    IMPRESSION:

    Nonspecific heterogeneous lucency and mineralization along the proximal humeral diaphysis

    without superimposed acute osteoarticular abnormality. Given the clinical context, if there are

    symptoms referable to this region, consider cross-sectional imaging for further evaluation.

  • moth
    moth Member Posts: 3,293
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    I think they're saying that if you're symptomatic - which you are - you should have further imaging so I would expect that. I believe the lucency can have many causes but they need to look at it more closely.

    Have you also had blood work already?


  • dallas115
    dallas115 Member Posts: 21
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    Hi,

    Yes, I had a CBC done this morning. Besides pain in my arm, and in my left side of my breast, I have swollen lymph nodes and have been feeling overall crummy for about the last week. The Dr. said "pain in my whole arm" does not sound BC related to her. I guess I am worried. She also told me my BC was grade 1, she just did not see it spreading to my arm....I am just so confused. When I left the appointment I was prepared for a lumpectomy and radiation...now this happens.

  • moth
    moth Member Posts: 3,293
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    just FYI Dallas, I think your bloodwork should also include calcium, serum protein & liver function tests etc, not just a CBC... if they're doing down the road of ruling out spread, you need more than cbc

  • beesie.is.out-of-office
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    Dallas, from my reading, which admittedly is far from expert, your x-ray result is good, in that nothing abnormal was found.

    I would agree with your doctor that the pain in the arm doesn't sound like it would be related to your breast cancer - there are so many things that can cause arm pain, and breast cancer metastasis would be pretty far down that list.

    You say that you have swollen lymph nodes. Where/which nodes?

    As for feeling crummy, it's pretty common after a breast cancer diagnosis (probably after any cancer or serious illness diagnosis) to suddenly start feeling crappy - that's a very normal psychosomatic reaction. The stress caused by a diagnosis can lead to a very real physical reaction, including headaches, chills, all sorts of aches & pains, nausea, etc.. Not saying that's what's happening in your case, but it could be.



  • dallas115
    dallas115 Member Posts: 21
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    Thank you ladies for responding, just reading your responses really helps. I just spoke to my Dr., when she saw the result she called the radiologist, he said, in his opinion everything looks fine. My Dr. says she feels confidant in is reading. Because I do have pain she will have me get an MRI, to look at my arm/shoulder, the radiologist is going to order it. She instructed me to relax, that I am getting this MRI to ease my mind, that this is not related to my BC and to possibly identify the cause of the pain. I agree that this week has been such an emotional roller coaster, that may be part of the reason I feel so run down. Thanks again for listening.

  • LivinLife
    LivinLife Member Posts: 301
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    You have a lot going on and thus a lot of thoughts and feelings about this. I agree with moth and Beesie that likely your arm is unrelated though great you can get the MRI to see if that can shed light on what's happening there. You seem to have good trust in your doctor which is really important. She seems to be looking out for you and your best interests - also really important! Please let us know about the MRI.... Wishing you the best with that and the labs...!

  • rah2464
    rah2464 Member Posts: 1,192
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    Dallas so sorry to hear about your diagnosis. I am really pleased you are in the hands of a physician who is being very thorough. The MRI will hopefully rule out anything scary. At my time of diagnosis I was exceedingly tired - it was one of the things that drove me to get things investigated. But as Beesie said, the emotional upheaval could be the source of how you feel right now. This is definitely the most stressful period as you are working towards a treatment plan and wrestling with the truth of a diagnosis. The anxiety and stress are real and highly impactful. Please take care of yourself, rest when you need to. Vent here if you are having a difficult day, we all understand. Best of luck with the MRI and labs!

  • dallas115
    dallas115 Member Posts: 21
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    Update: I received my her2 FISH results yesterday,

    HER2 (ERBB2) FISH analysis

    INTERPRETATION:

    Negative (Not amplified)

    Average number of HER2 gene copies per cell: 1.8

    Average number of chromosome 17 (CEP17) copies per cell: 1.8

    Amplification ratio (HER2/ CEP17): 1.0

    Also, yesterday I had my MRI, the my surgeon released the results to me charts right away, looking at the report the radiologist looked at also of stuff in my arm/shoulder area:

    IMPRESSION:

    Normal left shoulder and proximal upper arm without findings to explain pain or underlying

    marrow or soft tissue lesion to explain osseous heterogeneity within the proximal humerus on

    prior radiography.

    ACUITY LEVEL: 1. Routine: A normal examination or findings that are inconsequential.

    Now I am just waiting for my genetic results, I spoke with the genetic counselor and she said 7-10 days for the breast cancer genes to come back. I saw the Oncology Radiologist, he explained that the radiation will not be up against my chest wall, I was worried about that. The Cancer Center I go to is part of a huge hospital complex and is also a teaching hospital, not in Texas as my username would suggest(the Dallas Cowboys are my sons favorite team), so I had another Dr. come in and spend some time explaining some things first. Also. one more question, during my consult with the breast surgeon she asked how I would feel about a breast reduction and lift? I plan on asking more questions about that next time I go, just wondering if there are medical benefits to this? Thanks in advance ladies. I do feel so relieved about my MRI.

  • jons_girl
    jons_girl Member Posts: 444
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    Hi Dallas: You've gotten a lot of great support and info from those here. Just wanted to chime in and let you know I'm here to support you too.

    Also since you have heterogeneously dense breast tissue I thought I would share this website with you. Dense tissue is something to be aware of.

    www.areyoudense.org

    Here is the women’s stories page: https://www.areyoudense.org/stories/

    So much great info there and stories of women like us who have gotten breast cancer dx.

    Sending a hug your way

  • dallas115
    dallas115 Member Posts: 21
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    Thank you for the suggestion on the website for dense breast tissue, I learned a lot, I am going to pass it along to my daughter.

  • dallas115
    dallas115 Member Posts: 21
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    Hi,

    I wanted to give one last update, I received my genetic test results, all were negative. I also decided to get the lift/reduction at the same time as my lumpectomy, I have questions about that but will post in a new thread. Thank you ladies so much for helping me get this far.

  • melbo
    melbo Member Posts: 266
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    to answer your question about the bilateral reduction and lift surgery — that’s what I had. The plastic surgeon explained to me that it was better than just a lumpectomy because the incisions were bigger (basically cut from armpit to armpit), which allowed the surgical oncologist better access to the tumor sites, and allowed a better overview of the tissue in both breasts. Plus they were able to test the tissue they removed from my non-cancerous breast just to make sure there were no random cancer cells in that breast.

    The other advantage of the surgery was cosmetic — if I had done just the lumpectomy, my boobs would have been lopsided, and my left one likely would have been misshapen. Now they are the same size and much perkier than they used to be. I only ended up going down one bra size — from a 42F to 42DD.

    The disadvantage over a regular lumpectomy is a harder recovery — although still much easier than a mastectomy. I had a drain in each side for about a week and couldn’t take any of the bandages off for a week. Then I spent several weeks in a compression top that I hated. However, almost none of it was painful — just annoying and a pain to deal with.

  • dallas115
    dallas115 Member Posts: 21
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    Thank you Melbo for your story, it always feels better to hear someone that has/had something similar to you. Looks like my surgery will be April 1st.

  • sunshine99
    sunshine99 Member Posts: 2,663
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    Dallas113, I'm just chiming in here to say welcome, but I'm sorry you're here at all. As you've probably read, the hardest part is the waiting - waiting for test results, waiting for surgery, etc. The support and information on this site is wonderful - unlike Dr. Google who will convince us that we have less than 24 hours to live! Stay away from Dr. Google, if you can. He's not your friend.

    I'll follow this thread so that I can see how you are doing.

    Gentle hugs,

    Carol

  • dallas115
    dallas115 Member Posts: 21
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    Update:

    I am a week and a day out from my surgery, lumpectomy, tiny reduction/lift. I received the results today. I can see that the tumor grade went to a 2 from a 1. Not sure what to make of the other results...I know the surgeon told my husband afterwards that everything went fine, I have an appt. with her Monday. I saw the plastic surgeon a few days ago, she said that everything looks great. I guess I am wondering, did my surgeon get good margins? Did she get all of the cancer?

    FINAL DIAGNOSIS

    A. Left axillary sentinel node, hot, 41,000, sentinel lymphadenectomy:

    - One lymph node, negative for carcinoma (0/1).

    B. Left axillary sentinel node #2, hot, sentinel lymphadenectomy:

    - One lymph node, negative for carcinoma (0/1).

    C. Breast, left, segmental mastectomy:

    - Invasive carcinoma of no special type (13 mm), see synoptic report.

    - Histologic grade 2 out of 3.

    Glandular (Acinar)/Tubular Differentiation: 3

    Nuclear pleomorphism: 2

    Mitotic rate: 1

    Score: 6 (of 9)

    - Lymphovascular invasion identified.

    - Ductal carcinoma in-situ (DCIS), intermediate nuclear grade, solid pattern, with focal comedonecrosis.

    - Surgical margins are negative for invasive or in-situ carcinoma.

    Closest margin to invasive carcinoma: 1 mm to the anterior margin on specimen (final margin at least 10 mm)

    Closest margin to in-situ carcinoma: 5 mm to the medial margin on specimen (final margin at least 4 mm, see part F)

    - Biopsy site changes present.

    - Background breast tissue with usual ductal hyperplasia (UDH), pseudoangiomatous stromal hyperplasia, fibrocystic change, and apocrine metaplasia.

    - Pathologic stage (AJCC 8th edition): pT1cN0(sn)

    D. Left breast, additional anterior margin, excision:

    - Benign breast tissue.

    - Negative for carcinoma or carcinoma in-situ.

    E. Left breast, additional deep margin, excision:

    - Benign breast tissue.

    - Negative for carcinoma or carcinoma in-situ.

    F. Left breast, additional medial margin, excision:

    - Ductal carcinoma in-situ (DCIS), low nuclear grade, cribriform pattern, 4 mm from the medial margin.

    - Atypical lobular hyperplasia (ALH).

    - Negative for invasive carcinoma.

    - Breast tissue with usual ductal hyperplasia (UDH), columnar cell change, fibrocystic change, and apocrine metaplasia.

    G. Breast, left breast skin, excision:

    - Benign skin with no diagnostic alteration.

    - Negative for carcinoma or carcinoma in-situ.

    H. Breast, right, oncoplastic reduction mammoplasty:

    - Breast tissue with no diagnostic alteration.

    - Negative for carcinoma or carcinoma in-situ.

    - Benign skin with fibroadenomatoid change and fibrocystic change with apocrine metaplasia.

    I. Breast, right breast additional tissue, oncoplastic reduction mammoplasty:

    - Breast tissue with columnar cell change and cystic apocrine metaplasia.

    - Skin with no diagnostic alteration.

    - Negative for carcinoma or carcinoma in-situ.

    J. Breast, left breast additional tissue, oncoplastic reduction mammoplasty:

    - Breast tissue with no diagnostic alteration.

    - Skin with no diagnostic alteration.

    - Negative for carcinoma or carcinoma in-situ.

    Comment:

    Part C: Lymphovascular invasion is identified in slides C4 and C6.

    Part F: Immunohistochemical stains E-cadherin and p63 are performed on block F1, and ER is performed on block F9 with appropriate positive controls. P63 highlights intact myoepithelial cells, and E-cadherin shows patchy loss of membranous staining within scattered lobules, consistent with atypical lobular hyperplasia. ER shows strong and diffuse nuclear staining in the focal cribriform ductular proliferation, consistent with ductal carcinoma in-situ.

    Thanks ladies,

    Nicole

  • salamandra
    salamandra Member Posts: 745
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    That all sounds about as favorable as it can get :) Actually it sounds a lot like mine. I'm guessing you will wait for the oncotype now to rule out chemo for sure, and starting radiation pretty soon.

    I started hormonal therapy at the same time as radiation and it turned out to be a mistake because I couldn't tell what the side effects were from. In hindsight I would've just waited.

    It's a shlep but you're making it already!

  • LivinLife
    LivinLife Member Posts: 301
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    Dallas115 some of that made sense to me and many other parts I just don't have the knowledge... Salamandra seems to have a good grasp of the info! Go with that and I wish you well with upcoming treatment once you get a plan!