Just diagnosed and overwhelmed

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natsera
natsera Member Posts: 63

I got the call on Thursday, Jan 26, 2017 and as of this writing (Jan30), it's been 4 days. I haven't gotten the path report and all I know is that it's small (7mm) but invasive. A lot of people try to reassure me that it will be OK, but I don't find that comforting. And I still don't have a surgeon or an oncologist and feel alone in the dark.


I just don't know how to organize everything and get it done in good time.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2017

    Dear natsera,

    First, we're so sorry for the circumstances that bring you here, but we're very glad you've found and joined our community! You've come to a wonderful place for information and support.

    The beginning is truly overwhelming, we all know, but it will get better! Until you get responses from other community members here, you can start by reading through the pages of our Breast Cancer 101 section, designed for those just diagnosed and help them understand test results, the individual characteristics of the cancer, treatments that are recommended for you, and more.

    Hope this helps! Please, keep us posted on how everything is going.

    The Mods



  • dtad
    dtad Member Posts: 2,323
    edited January 2017

    Hi there. So sorry you have to be here but welcome. I know you will find this forum both informative and comforting. You are presently in the worst part of this process. The beginning is horrible. I promise you will feel better once you have all the facts and a treatment plan. So far the fact your tumor is very small is good. You will have more information once the path report comes back. Please feel free to ask me any questions. We are all here for you...

  • Variable
    Variable Member Posts: 77
    edited January 2017

    Hi Natsera-I appreciate your frustration with those who tell you it will be ok, when little is yet know about what is going on or how it will be treated. Whoever found it should be working to refer you to a preliminary treatment team. Keep on them about those referrals. Hang in there! This is a scary time, but you have support here! Keep us posted!

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2017

    Hi natsera:

    Sorry to hear of your recent diagnosis. Regardless of where you are located, you should have been told what the next step will be. If you do not know, please call the person who informed you of your diagnosis to inquire what happens next (e.g., appointment with breast surgeon), when it will happen, and what if anything you need to do to set it up.

    Typically, once you have been informed of the result of the biopsy, the pathology report is released to you. In the USA, the reports are required to be released, because they are copies of your medical records. Unfortunately, the full report may not be available by patient portal, and you often have to request it. For example, I got the paper copies of the pathology reports from the "nurse navigator" at the center where the biopsies were done. Later, I obtained them via secure email from the administrative assistant to my breast surgeon. Another option is via the Medical Records Division of the institution. In the latter case, I had to call Medical Records ahead of time to request specific items, obtain information re when they would be ready, pick them up in person, show photo ID, and sign for them. Check with your facility for the best way to obtain a copy.

    With invasive disease, it is possible that further studies are in progress, including additional testing for estrogen receptor (ER), progesterone receptor (PR), and HER2 statuses. If these are are not included in your pathology report, be sure to follow up and request any addenda or supplement(s) containing this information.

    As others have said, this is one of the most disorienting times in the process. I felt much better after I met with the breast surgeon and had a better idea of what I was dealing with.

    Best,

    BarredOwl

  • IrishKatie55
    IrishKatie55 Member Posts: 33
    edited January 2017

    Natsera, Please know this site and these forums have been a wealth of information and support. Being diagnosed only months ago, and being stunned, I felt exactly where you are now. Deep breaths. Once you connect with the first line of doctors and get information on your own situation you will form a plan. Moving forward will give you relief and strength to do what you will need to. Small tumor is a good place to have too start. In only a few months I have had surgery, radiation and found I am going to start the next phase of treatment. Mostly I have learned it will be ok, no matter what comes. Learn all about the diagnosis's below each poster and you can see about different treatments, options and outcomes. That has been most helpful to me. You will see. Day at a time as you will get lots of information, and things will change just when you think you have it all down. It's ok. I have found folks here will answer and advice on anything needed to be asked. Start your timeline/journal. I already had to backtrack to remember dates of dx, tests and so on and its only been months. wishing you peace and strength as you get started.

  • LADYnKY
    LADYnKY Member Posts: 58
    edited January 2017

    I remember the overwhelming sadness and my mind spinning in ever direction May 2016. Diagnosed w IDC. Very small stage 1. I met w breast surgeon and nurse navigator. I even met w plastic surgeon to help w decision making. My plastic surgeon actually helped me get there in my mind. So I crossed the bridge of double mastectomy and did skin nipple sparing on non cancer side. I wanted to have as much of me as I could. I kno it was the right decision for me and my circumstance. I got immediate TE and had my exchange surgery in oct 2016.

    The first 3 months were overwhelming to say the least but you will make it.

    I creeped on this board for months reading and reading. Do NOT google stuff or do images. Just look for your friends and family support and support on here. This was the greatest source for me. Ladies asked questions I wanted to kno about and the ladies always answered. I felt better by reading posts from ladies that went through what I was about to.

    It will get better.

  • Vicki63
    Vicki63 Member Posts: 3
    edited January 2017

    OMG I just got diagnosed with same on January 20, 2017!!! Invasive mammary carcinoma, high-grade DCIS - Did you have an MRI yet - I did and now I have suspicious lymph nodes in right axillary. I just submitted my short term disability, have appointments with plastic surgeon and breast surgeon oncologist for right mastectomy. Have you recd your results from your markers? Mine are estrogen and progesterone receptive. I even had a spit genetic test performed to rule out risk for other cancers since breast cancer, thyroid and liver cancer run in my family. I am numb, angry, sad all at once!! I can't even focus on work, I just want to stay in bed and sleep! Sometimes I just cry and want to withdraw - thankfully I have a great husband who I include in everything and every appointment. I just started a new job and can't even focus on learning anything new right now. Sometimes I don't even remember what day it is or what time my next appointment is. I feel your pain - I feel like I live in a world of uncertainty - it feels like my body has control over me...

  • Vicki63
    Vicki63 Member Posts: 3
    edited January 2017

    I look forward to your posts and sharing our experiences, learning from others and getting past this initial phase of our diagnosis. I just turned 54 this month and it was the last thing I expected to hear just 2 weeks after my birthday, new job role, and new grand baby!!

  • natsera
    natsera Member Posts: 63
    edited January 2017

    Hi, Vicki,

    I saw your post when I first got on the site yesterday or the day before. And I thought that yours sounded a lot like mine. I haven't had an MRI -- they're going straight to surgery. I don't yet know what they'll recommend -- it may just be a lumpectomy but if the lymph nodes are positive, I think I'd like a double mastectomy.

    The cancer is strongly estrogen positive and moderately progesterone positive. I don't know about the Her2 yet.

    I don't know about genetics but both my sister and my cousin and the daughter of another cousin have all had it. Plus we're Jewish and therefore at higher risk.

    My consult with the surgeon is on Feb 8, so I'm still playing a waiting game, but at least there's a plan of action.

    And yes, I cried too

  • Moderators
    Moderators Member Posts: 25,912
    edited February 2017

    Vicki-

    We're so sorry you find yourself here, but we're glad you've joined our community. We know the first days and weeks are scary and confusing and overwhelming, but just know that you are not alone! We're all here for you.

    Please keep us updated as you move through your appointments, and if you have any questions, please ask! That's what we're here for!

    The Mods

  • natsera
    natsera Member Posts: 63
    edited February 2017

    Update: I found out that there is a Cancer Institute at the hospital which I have to use because of my insurance (we only have 3), and I called them, and a nurse navigator called me back. She already had my records, and was able to recommend a surgeon, so I have an appt. for Wed. Feb. 8. I was also able to get a copy of the pathology report, and it answered a lot of my questions. It IS invasive, not DCIS as my PCP believed, and at least 0.7 cm, possibly larger, but if so, I doubt by very much. They also said it was at least stage 1b, and I hope not more than that. I won't know about the lymph nodes until surgery, which we will discuss at that appt. I hope it's soon after, and that I don't have to wait a long time. It's strongly estrogen positive, moderately progesterone positive, and I don't yet know about HER2. I will most likely require radiation, but I can deal with that.

    There is a library at the Cancer Institute, and volunteers there who will talk to a person who has questions. I will probably go on Thursday or Friday.

    So I finally feel like I am making progress. It's STILL scary, but I'm not as upset as I was when I first wrote the post. :-)

  • IrishKatie55
    IrishKatie55 Member Posts: 33
    edited February 2017

    Information is power, and you already sound empowered from even your earlier post. Good for you. Forward motion as you make your decisions with your team.

  • Lisey
    Lisey Member Posts: 1,053
    edited February 2017

    Natsera, did they specifically say Stage1b? The (b) in that means lymph involvement. your size is small and without lymph involvement you'd be a 1a. I'm just wondering why you think 1b?

  • natsera
    natsera Member Posts: 63
    edited February 2017

    Hi, Lisey,

    I don't know -- it was on my pathology report and I don't know why because they didn't take any lymph nodes so far as I can tell. I guess I won't find out until they do the surgery. The cancer is in the bottom of my breast and I THINK they're going to have to do a separate incision to sample lymph nodes. I will be very happy if they're negative!

    Meanwhile, what should I do on my profile?

  • Mamasha
    Mamasha Member Posts: 104
    edited February 2017

    lisey,

    I was told 1b because tumor was 8mm. Under 5mm was 1a. You got me nervous when you said b meant node involvement.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    Lisey is correct.

    Nodal status is required to distinguish between Stage IA and Stage IB.

    Stage IB requires a certain level of lymph node involvement, specifically pN1mi (i.e., Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm). Node-negative ("N0") disease cannot be Stage IB.

    The confusion arises from the use of "B" in stage designations (e.g., Stage IA, Stage IB) and the use of lower case "b" in tumor size designations.

    Under the currently used AJCC staging manual (7th Edition) summarized here, tumor sizes for invasive breast cancer are as follows:

    https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

    T1 Tumor ≤ 20 mm in greatest dimension - includes any of the following:

    T1mi Tumor ≤ 1 mm in greatest dimension

    T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension

    T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension

    T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension

    T2 Tumor > 20 mm but ≤ 50 mm in greatest dimension

    T3 Tumor > 50 mm in greatest dimension

    It is not possible to know the stage of a person who has an estimated "T1b" sized tumor, is clinically node-negative (prior to surgery), and has not yet had a lymph node biopsy. This is because the actual size of the tumor and the lymph node status are required to determine T N M status and accurately assign pathologic stage.

    Mamasha:

    Please confirm it with your team. If you were clinically node negative, and found to be purely node-negative (N0) on sentinel node biopsy, with an 8 mm tumor ("T1b" in terms of size only), and no evidence of metastasis, that would be pT1 N0 M0 or more specifically pT1b N0 M0, both of which are Stage IA as shown on line 2 of the chart below. Please confirm it with your team.

    image

    BarredOwl


  • Mamasha
    Mamasha Member Posts: 104
    edited February 2017

    BarredOwl

    Thanks so much for info! Have an email into nurse. Freaking a little

    PATHOLOGIC DIAGNOSIS:

    A. RIGHT AXILLARY SENTINEL NODES:

    Three (3) sentinel lymph nodes, negative for tumor (three H&E levels examined).

    B. RIGHT BREAST, UNORIENTED SEED LOCALIZED EXCISION:

    INVASIVE DUCTAL CARCINOMA, moderately differentiated (modified Bloom-Richardson

    grade II/III: tubule score=3, nuclear score=3, mitoses score=1), 0.8 cm

    measured on the glass slide (B6).

    Lymphovascular invasion is not identified.

    No in situ carcinoma is present.

    Clip site is present.

    AJCC Classification (7th edition): pT1b N0(sn)

    NOTE: Immunohistochemical analysis for estrogen receptor, progesterone

    receptor, and HER2/neu will be performed and reported in an addendum.

    C. RIGHT BREAST SUPERIOR MARGIN:

    Benign breast tissue, negative for tumor.

    D. RIGHT BREAST INFERIOR MARGIN:

    Benign breast tissue, negative for tumor.

    E. RIGHT BREAST LATERAL MARGIN:

    Benign breast tissue, negative for tumor.

    F. RIGHT BREAST MEDIAL MARGIN:

    Benign breast tissue, negative for tumor.

    ADDENDUM:

    Immunoperoxidase studies were performed at BWH on formalin fixed tissue with

    the following results for invasive carcinoma (block B6):

    ESTROGEN RECEPTOR POSITIVE (90%, strong)

    PROGESTERONE RECEPTOR POSITIVE (30%, weak to moderate)

    HER2/NEU (C-ERB-B2) NEGATIVE (0)

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    Hi Mamasha:

    I am glad you have an inquiry in. However, I think you will be reassured in due course. About half-way down, the report sets forth the T and N status:

    AJCC Classification (7th edition): pT1b N0(sn)

    In other words, pT1b - "p" on pathologic staging, the tumor size of 8 mm or 0.8 cm is pT1b, where T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension

    N0(sn) - node-negative (N0) by sentinel node biopsy (sn)

    There is no "M" status, because the surgical pathology did not assess distant metastasis. Typically, with such early stage disease, scans are not recommended (in the absence of symptoms). In this situation, rather than assume "M0" status when not specifically assessed, some pathologists leave the M status blank (as yours did) or indicate this as "Mx". With no evidence of distant metastasis, pT1 N0 (or pT1b N0) disease would be generally be considered Stage IA.

    BarredOwl

  • Vicki63
    Vicki63 Member Posts: 3
    edited February 2017

    Hello again! I cannot believe it - I have an appointment with my breast surgeon oncologist Wednesday, February 8th, at 1:30 p.m. We will be meeting to schedule my right mastectomy, review labs and ekg. I meet with the plastic surgeon this Friday. There is a family history as well in my family - my mother and aunt. However, they were both diagnosed at ages 70 and 84. The oncologist inquired about eastern European ancestry. Unfortunately, we do not have much information available to know if this is possible. I am looking forward to the genetic test results. Hopefully will have results in 7 to 10 days. I requested xanax as needed to help me when I become anxious, worried and tearful. Some days I just feel angry, confused and sad. My lymph nodes will be biopsied during surgery. Until I received this diagnosis I did not have a very close relationship with my brother or 2 sisters. In some odd way we are beginning to form bonds and say to each other "Love you! " It seems you cannot take anyone for granted - I am looking forward to recovery with the support of family. Hopefully you will receive the same from your sister, cousin, and cousin's daughter. I look forward to reading your posts, Hugs!

    My breast cancer is also invasive and stage 1b. The MRI findings: proven malignancy spans 5cm in all three dimensions and extends from my implant capsule to involve the skin . The MRI showed no cancer detected in the left breast.

  • natsera
    natsera Member Posts: 63
    edited February 2017

    This is so similar. I'm seeing my surgeon on Feb 8 also. But it will almost surely be a lumpectomy and radiation. I do have E. European Jewish ancestry and my sister, cousin and another cousin's daughter have all had it. My cancer is smaller than yours 0.7 cm) which is a good thing and probably why they're planning a lumpectomy. But I'm still nervous and scared. But we will get through it,eh

  • natsera
    natsera Member Posts: 63
    edited February 2017

    What do tubule score, nuclear score and mitosis score mean

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    Hi natsera:

    Those are components of the determination of "histologic grade" for invasive breast cancer using Nottingham Histologic Score ("Elston Grade"). See this page from Johns Hopkins:

    http://pathology.jhu.edu/breast/grade.php

    BarredOwl

  • natsera
    natsera Member Posts: 63
    edited February 2017

    Thanks, Owl. My Tubule score is 2, and the Nuclear and Mitotic scores are 1 each. So it doesn't seem like the worst case scenario but still, I need to get it taken care of sooner than later. It's easy for others to say it's not worth worrying about because it's easily cured, but it feels different when it's YOU and not some statistic. It's hard to wait but no choice. I appreciate the fine ladies here who are patiently answering my questions and guiding me to information

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