Post-lumpectomy, invasive spot found, now what?

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amsunshine111
amsunshine111 Member Posts: 7

I'm here and I guess I need some support. I went in for a routine mammogram in April, and they found microcalcifications. They told me I needed a biopsy, so I had that. They found DCIS, Stage 0. My [new] oncologist (ackkk I have an oncologist now) recommended a lumpectomy but as I was scheduled to go to a relative's wedding out of state and shortly after start a new job, he advised me that it would be OK to wait a month to do all that and then have the lumpectomy. I had the lumpectomy 1.5 weeks ago, Despite my telling my surgeon AND my oncologist that I feel twingy sometimes under my left arm, they elected not to check lymph nodes. Pathology from the lumpectomy revealed a spot that's more invasive. The surgeon broke the news to me at the Friday wound/drain recheck. I have an appointment this Thursday with my oncologist to discuss this further.

My oncologist had said before the surgery occurred that I most likely would not need chemotherapy with this type of pre-cancer, as he calls it, at this stage. So I have some questions:

1. How likely is it that I'll have to have chemotherapy now?

2. Is this cancer now, or still considered pre-cancer?

3. Should they have checked the lymph nodes given what I told them about feeling twingy?

I'm quite frustrated with the process. If I have to have aNOTHER surgery/chemo in addition to the radiation already planned, it's going to mean more time off work and more money, energy, and time devoted to this DEMON...and what does that mean for me being able to keep my job? I am in a mood to have both of these things cut off and call it a day. I like my job and we need the money and it pays well and I am already so sick of spending my resources on THIS. Thanks for listening and any advice/support. I've been pretty weepy today and don't want to give this thing space inside my thoughts. My mind is tempted to go to some pretty dark places, but I won't let it.

Comments

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited August 2017

    to my understanding, any type of invasive portion (even microinvasion) is considered stage 1. I definitely could be wrong, so don't quote me on that. Hoping someone else chimes in. Do you know the grade? I had BMX for DCIS, and a sentinel node biopsy was done. Not sure why they didn't check your lymph nodes, especially if you're feeling "different." I definitely would place a call into the Dr. about that.


    As for treatment, have they checked for hormone receptors? I believe standard tx for DCIS (pure) is radiation followed by hormone tx (if +), or a mastectomy.

    Wishing you all the best on this crazy ride. Let us know what your dr says and what will follow.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited June 2017

    Sorry about the nasty surprise. It happened to me, too. It is a real kick in the teeth. My surgeon went back in for a sentinel node biopsy three weeks after my initial surgery. I had an additional test on the tumor (ugh - hate that word) called the Oncotypedx test. Results from it often assist in determining the need for chemo.

    I imagine you're in shock right now. Things are tough right now but you're gonna get through this. Take it a day at a time. Whatever it takes things need to be all about you for a bit. I suspect that you'll be able to work through most if not all your treatment. Hang in there. Big hug.

  • amsunshine111
    amsunshine111 Member Posts: 7
    edited June 2017

    Wow, you ladies are a wealth of information. At this point I haven't even known the questions to ask, but you are arming me with information for my appt. on Thursday. I have to go to sleep now but will check in after work tomorrow. Thanks again. I am very grateful.

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

    Hi amsunshine111:

    Your title says "invasive spot found," but then you mentioned they found "a spot that's more invasive" as if there might be some uncertainty or question of degree?

    The pathologist looks for signs of tumor cells breaking through the outer "myoepithelial" layer of the duct and into surrounding breast tissue (i.e., "invasion"):

    >> If there is uncertainty as to whether there is invasion or not, the pathologist notes "suspicious for microinvasion".

    >> On the other hand, if "invasion" is clearly present, they will note the presence of invasion (microinvasion or larger invasion) and separately specify the size of the invasive disease.

    To understand exactly what was seen, be sure to request copies of the complete pathology reports and all related testing from all biopsies and surgeries. The results of these are considered together.

    DCIS is typically tested for ER and PR status. The size and grade of the DCIS should be specified, and the "architecture" within the duct (e.g., cribiform, solid) should be described. The "margins" (i.e., distance between the DCIS and the edges of the lumpectomy sample) should be specified.

    Invasive breast cancer (e.g., IDC, ILC) is also typically tested for ER, PR and HER2 status, if feasible. The size and grade of the IDC should be separately specified. The "margins" for the IDC (i.e., distance between the IDC and the edges of the lumpectomy sample) should be separately specified.

    (I found it helpful to make a sheet of paper with two columns, one for the DCIS and one for the IDC, and the to note all of the features of each separately.)

    Here is some information from the main site re surgical margins. You can also download a pdf version of the pamphlet "Your Guide to the Breast Cancer Pathology Report" at the bottom of the page:

    >> Margins and Pathology Report: http://www.breastcancer.org/symptoms/diagnosis/margins

    If Invasion is Deemed Present:

    If invasion is deemed to be present (in a biopsy sample and/or surgical sample), then regardless of the size of the invasion, the pathologic diagnosis is "invasive" breast cancer (Stage IA or higher), and the diagnosis is no longer Stage 0.

    Stage is determined by the size of the invasive tumor ("T"); lymph node status ("N"); and evidence of distant metastasis ("M").

    >> Summary of staging (7th Ed): https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

    When DCIS and "microinvasion" are both present, it is sometimes called "DCIS with microinvasion" ("DCIS-MI"). However, despite the name, DCIS-MI is considered to be an "invasive" breast cancer diagnosis, where the invasive tumor is ≤ 1 mm in greatest dimension ("T1mi").

    Sentinel Node Biopsy ("SNB"):

    Under clinical guidelines, with apparently pure DCIS on minimally invasive biopsy and lumpectomy (breast-conserving surgery), sentinel node biopsy ("SNB") is not typically recommended, so it is not surprising that you did not receive a recommendation for SNB.

    However, if the surgical pathology reveals the presence of invasive disease, then SNB is typically recommended and is done in a second procedure. Please inquire about this with your team.

    If you still feel twinges, please include it on your question list to discuss this with your oncologist. If the twinges first started after your biopsy, they could be a benign consequence of biopsy. If the symptoms preceded any invasive procedure, be sure to emphasize that. In either case, do not hesitate to request a fresh clinical exam of your axilla, and inquire whether any imaging of the axilla should be considered (or not).

    Lumpectomy plus Radiation:

    Be sure to consult with a Radiation Oncologist to discuss your local recurrence risk and available options for radiation therapy, in light of relevant clinical and pathologic factors in your case.

    Systemic Drug Treatment:

    If the DCIS or IDC is hormone receptor-positive (ER+ and/or PR+), you may be offered "endocrine therapy" (also referred to as "anti-hormonal therapy") with either Tamoxifen or an Aromatase Inhibitor (if post-menopausal). Such treatment can reduce the risks of same breast local recurrence and of new contralateral (opposite) breast disease. It can also reduce the risk of distant (metastatic) recurrence due to the presence of invasive disease. You can request estimates of each of these three risks either with or without endocrine therapy from your medical oncologist.

    With invasive disease, the question of whether chemotherapy and/or HER2-targeted therapy (for HER2-positive disease) would either be considered or recommended depends largely on your estimated risk of "distant" (metastatic) recurrence. Distant recurrence risk is related to certain key features of the invasive disease, including tumor histology (e.g., ductal, lobular); invasive tumor size; lymph node status; and ER, PR and HER2 status. Additional clinical factors (e.g., age, co-morbidities) and pathologic factors (e.g., grade; presence of lymphovascular invasion) may also be considerations.

    With invasive disease that is both hormone receptor-positive and HER2-negative, and where the Tumor >0.5 cm, additional testing (e.g., OncotypeDX for invasive disease) may be recommended to inform the question of whether to add chemotherapy to endocrine therapy.

    Please confirm all information above with your medical oncologist.

    BarredOwl

  • YazMar74
    YazMar74 Member Posts: 21
    edited June 2017

    Hi amsunshine, I am basically in the same predicament. I was diagnosed early May with DCIS stage 0 - after my lumpectomy the pathology reports came back my margins were not clear and there was evidence of microinvasion - now up to Stage 1 and scheduled for a second lumpectomy on June 15 and my surgeon is biopsing a lymph node. I have high grade ER/PR positive. I hope there is no more invasion and I can move on to radiotherapy and so on. My surgeon did still did not think I needed any more aggressive treatment.

    It can be nerve racking, unfortunately it is not until they go in that they really understand the characteristics of the cancer. BarredOwl gave you a ton of great information. First order of business is getting a copy of your pathology report. I have both of mines and through research I was able to understand exactly what was going on.

    Thinking of you, hang in there.

  • MickeyB17
    MickeyB17 Member Posts: 117
    edited June 2017

    Hello amsunshine -

    I got a call from my surgeon earlier today hollowing lumpectomy for DCIS on 5/22 - and- IDC was also found. My follow-up appt is Wednesday - plan is for lymph node biopsy next and I'll meet with a medical oncologist.I went from Stage 0 to Stage 1. Hard to trust the Stage 1 until the nodes are checked.I understand how they want to take this all one step at a time, but it is so stressful to not know clear answers. I am working full-time and haven't said anything at work, just took time off for the surgery. Now going to be out again, I'm stressing over work time off. Feeling the loss of control is hard. I think I'll feel better when I see the path report and have more information. Hang in there, all!

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited June 2017

    Hi,

    Sorry for all of you. I can tell you that until you know all your pathology you can't make decisions. Your ER/PR status and HER2 status will help determine chemo needs. If you do OncoDX or a similar test it will help as well. I attempted lumpectomy first and then had to do re-excision and then ended up with mx in the end. I had dense tissues and the size the tumor that they thought was only .7 was over 5! Every cancer is different and getting that pathology is the first thing you need. Read through all those pages on this site as well. It has so much information. Best wishes during your treatment.

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