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Just diagnosed IDC

LI77
LI77 Member Posts: 68
edited February 2022 in Just Diagnosed

Hi Everyone,

I just got my biopsy results back and I have an appointment with an oncologist tomorrow. I am super worried about the lymph node involvement. I’ve had lowerback pain (not severe, more nagging) since around Halloween, and I thought I just pulled a muscle (and re-aggravated it when I lifted a heavy suitcase around Christmas). But now I’m freaking out about it. It looks like I’m at least stage 2 here, right? I copied and pasted the biopsy results below, hopefully it worked

DIAGNOSISYour ValueA. LEFT BREAST, 11:00, 4.3 CM MASS, ULTRASOUND GUIDED BIOPSY:

- INVASIVE DUCTAL CARCINOMA WITH NEUROENDOCRINE AND MUCINOUS FEATURES

- NOTTINGHAM HISTOLOGIC SCORE: 6 OF 9 (GRADE 2)

(TUBULE FORMATION: 3, NUCLEAR PLEOMORPHISM: 2, MITOSES: 1)

- SIZE OF INVASIVE CARCINOMA: 17 MM IN GREATEST LINEAR DIMENSION WITHIN A

SINGLE CORE

- INVOLVING MULTIPLE CORES

- NO LYMPHOVASCULAR INVASION IDENTIFIED

- NO IN SITU CARCINOMA IDENTIFIED

BIOMARKERS (PERFORMED ON BLOCK A2)

- ESTROGEN RECEPTOR: POSITIVE, 91-100%, STRONG INTENSITY

- ALLRED SCORE: 8

- PROPORTION SCORE:5/5

- INTENSITY SCORE: 3/3

- PROGESTERONE RECEPTOR: POSITIVE, 21-30%, STRONG

- ALLRED SCORE:

- PROPORTION SCORE: /5

- INTENSITY SCORE: /3

- HER 2 OVER-EXPRESSION: EQUIVOCAL (SCORE: 2+)

- HER 2 FISH: PENDING

- KI-67: ~40% (CUT-OFF 20%)

B. LEFT AXILLA, 1.8 CM, ULTRASOUND GUIDED BIOPSY:

- METASTATIC CARCINOMA INVOLVING LYMPHOID TISSUE

- SIZE OF METASTATIC FOCUS: 5 MM IN GREATEST LINEAR DIMENSION WITHIN A

SINGLE CORE

- INVOLVING MULTIPLE CORES

Comments

  • ab45
    ab45 Member Posts: 153

    HI

    I am so sorry you are here but you are surrounded by women and men who have traveled this path...I was diagnosed with IDC in November 2020 with multiple positive nodes. Try to take one step at a time...do you have a follow up scheduled with your doctor to discuss a treatment plan?

    Sending virtual hugs

  • parakeetsrule
    parakeetsrule Member Posts: 605
    Sorry you're here! Hopefully you find a lot of helpful advice and support.

    Have you mentioned the back pain to them yet? If not, you'll want to do that soon.
  • moderators
    moderators Posts: 7,888

    Welcome, LI77. We're so sorry you find yourself here, but we hope this community can be a source of support for you!

    The Mods

  • minustwo
    minustwo Member Posts: 13,070

    L177 - sorry to hear about your diagnosis. Once you get the treatment decisions settled, it really does get mentally easier.

  • ZakiaSalim
    ZakiaSalim Member Posts: 1

    My cousin has been diagnosed with Breast Cancer grade 2, it is around 4.5cm so we opt for chemo before surgery. Her 1st Chemo has been done on 31st January 2022 and 2nd will be on 14th February 2022. His husband is now looking to continue chemotherapy from another Oncologist/Hospital due to the high cost. Currently, her diagnostic, tests and treatment done at Liaqat National Hospital Karachi, under the supervision of Prof. Roofina Soomro and Oncologist Dr. Naila Zahid. Now, he interested to move chemo treatment at Cancer Foundation Hospital Karachi where Dr. Lubna Saleem (Oncologist) looking after and also treatment cost is half from LNH.

    So, kindly suggest is this good idea to move chemo cycles between treatment only for the reason of cost?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,742

    Salaam Zakia,

    I think your cousin is in a situation that may be unique to Pakistan. Most of us are covered by individual health insurance or national health care systems and generally have no reason to price shop for our care. All I can advise is that your cousin choose the best care that she can afford but if quality of care is equal then choosing the less expensive option shouldn’t be a problem, inshallah!

  • LI77
    LI77 Member Posts: 68

    Thanks, this article is interesting. I’m 44 and premenopausal, so it seems that it’s even more unusual to have this mucinous/neuroendorine type.

    I met with the oncologist today and we’re still waiting for the FISH and Oncotype results before there can be a treatment plan in place, so it may be a the couple of weeks before before I know. She did order a PET scan, I think mainly to ease my anxiety about the back pain. She also thinks that if more lymph nodes were involved, that they would have seen something on the ultrasound.

    So basically, I know that right now that I’m at clinical stage IIA and that I’ll need surgery, radiation, and hormone suppressing drugs, but not sure whether I’ll need chemo yet.

  • pato58
    pato58 Member Posts: 5

    HI, were you ordered an MRI too?


  • LI77
    LI77 Member Posts: 68

    Yes, they ordered an MRI but I don’t have it scheduled yet

  • pato58
    pato58 Member Posts: 5

    take care :)


  • msphil
    msphil Member Posts: 185

    sweetie here some of my story to Inspire those now fling thru it and hearing those Words. You have cancer. We were planning our 2nd marriages when I found the lump in my left breast..Things moved pretty fast I worked in O R as inst tech then had own office in Pediatrics med records when this All took place. Had needle biopsy and saw look in my colleagues faces I know then. Got 2nd opinion and wanted lumpectomy going into new marriage But decided with oncologist Lmast best course. Had 3 mo chemo before and after got married then 7wks rads 5 yrs on tamoxifen. Praise God im thus yr a 28yr Survivor. Faith Fiance now Husband family lots Hope Positive thoughts even when I cried first few times. Hold on sweetie pray this gives you Hope also. msphil idc stage2 0/3 nodes Lmast chemo rads tamoxifen.

  • obsolete
    obsolete Member Posts: 333

    Hi LI77, you may wish to reconfirm with your Pathologist on specific subtype of Neuroendocrine in tumor & also molecular subtype (Luminal A vs Luminal B) for treatment discussions. Please read below FYI and remember you had presented with NO LVI & LOW Mitosis which are excellent prognostic indicators. Wishing you well. Hugs...

    Neuroendocrine Carcinoma Of The Breast With A Mucinous Carcinoma Component: A Case Report With Review Of The Literature

    https://www.spandidos-publications.com/10.3892/ol.2012.678

    Neuroendocrine Tumors of The Breast

    "In 2 studies, ...patients who received chemotherapy had lower OS and disease-free survival than those who did not. The poor response to chemotherapy is hypothesized to be due to either chemoresistance commonly seen in neuroendocrine tumors of other sites, or the lack of an appropriately determined regimen. No consensus has been reached on the prognosis for NETs of the breast."

    https://meridian.allenpress.com/aplm/article/141/11/1577/65380/Neuroendocrine-Tumors-of-the-Breast

  • GodblessU
    GodblessU Member Posts: 2

    Hi All,


    I'm writing on behalf of my wife oversea currently awaiting treatment plan & surgery from Dr.

    We are so anxious what is expected from below biopsy result. Do you think that we can get away from the Chemo?

    FYI, size of the tumor was 2.2cm and the surgery is scheduled in early May.


    Estrogen Receptor alpha : Positive in 90%

    Progesterone Receptor : Positive in 20%

    Her-2 : Negative (+/3)

    Ki-67 : Positive in 4%

    MICRO (1 HE)

    DIAGNOSIS

    Breast, left, 12H", needle biopsy:

    INVASIVE DUCTAL CARCINOMA with

    1) nuclear grade 3/3

    2) histologic grade II/III

    3) DCIS component: not identified


    Thank you for your support !

  • moderators
    moderators Posts: 7,888

    Dear GodblessU,

    Welcome to the BCO community. We are sorry for your wife's recent diagnosis. We are glad that you reached out on her behalf. Here is a link to some resources for those Just Diagnosed, including How to understand the pathology report and Questions to ask the doctor. It sounds like there is some concern about the possibility of chemotherapy. Perhaps you can say more about that. Another tip might be to start a new topic so that your story and questions stand on their own. We will send you a private message with more information as to how to do that.

    The Mods

  • Mememee
    Mememee Member Posts: 33

    hi LI77

    There is so much information and technical jargon during the diagnosis and treatment decisions. It is very overwhelming.

    Ask questions when you don’t understand, ask them to repeat an answer so you can write down the information and keep asking why, how, when. The docs and nurses are there to give you the information you need to make the best choices for you.

    I have a blog, one talks about making decisions that we aren’t used to making. Give it a read, might be helpful.
    https://www.ibeatbc.com/post/thinking-about-how-to-make-treatment-decisions

    There are so many of us who are experience breast cancer and we are here to support one another.

    Mememee

  • minustwo
    minustwo Member Posts: 13,070

    God - A lot will depend on the final results of the pathology after the surgery. Even if chemo is recommended - you (or rather your wife) can do it. You didn't say her age, but plenty of us have been through this over age 70 and are now NED (no evidence of disease)

  • salamandra
    salamandra Member Posts: 736

    Hi GodBlessU,

    For many of us, the time between the biopsy results and the first doctor's appointment is absolutely excruciating. And, for most of us, that first doctor's appointment is a huge relief, even if the news isn't great. The unknown is so very much more scary than the known. I know for me, it was the first time in weeks I felt like I could exhale. (Although it is worth remembering that the information won't be fully known until after a full pathology, which for most of us is after surgery).

    My understanding is that standard of care is to only use chemo if an oncotype or other genomic testing shows that the cancer type is likely to respond well and that the chemo is likely to do more good than harm. So the upside of a recommendation for chemo is that it's a medicine that's known to be helpful and effective (for the right cancers). I didn't have chemo myself, but from reading these boards I have also read that many women find chemo to be easier than expected. This is both because the treatments for side effects have gotten much better and because the popular depictions of chemo in movies and TV can be somewhat dramatized. Many women are able to keep working through chemo nowadays, for example, which surprised me based on my own prior misconceptions.

    That said, for many cancers, chemo is not recommended. I had a hormonal cancer for which I take hormonal treatment. That can also be hard - for example, the first drug I tried had pretty severe quality of life side effects (for me, other women take it with absolutely no negative effects) and it took me almost a year to find an alternate drug that I feel fine on.

    For what it's worth, most cancer is early stage cancer. Early stage cancer is treated with curative intent and many, many women do indeed go on to live long lives and/or die of other, unrelated causes. I remember feeling like if my luck was bad enough to have cancer, then surely my luck would also result in advanced stage cancer. But that is flawed human grasping at straws trying to make sense of an arbitrary world. It is very possible and in fact likelier than not that though your wife was unlucky enough to get cancer, she will be lucky enough to get a treatable cancer that will turn her life upside down for some annoying length of time but eventually recede into the background.

    When is her doctor's appointment?

  • GodblessU
    GodblessU Member Posts: 2

    Moderator, Minus two : Thank you for the encouraging words and helpful info ! FYI, my wife is 43 yrs old. I'm sure she can handle this !

    LI77 : Sorry for hijacking your board. Just found out the forum and didn't know how it works. I understand what you are going through now and god bless you !!

    Salamandra : Thank you for the detailed info. I also found out about Oncotype and the Dr mentioned that there's a possibility that this test might be required.

    FYI, her surgery is scheduled around mid April @ Seoul National University Hospital in Korea and she's currently undergoing different tests.

    We also have considered having surgery here in the state but after research, we are pretty confident what SNUH can do.

    Only thing is the price of Oncotype ( Around $4k which is not covered through local insurance ) and I'll need to find out if our US insurance, CIgna open access plus, is willing

    to pay for the test. SNUH will send the specimen to the US company for result so I think we have some possibility.

  • LI77
    LI77 Member Posts: 68

    The FISH results came back negative. So ER/PR+ HER2- . My doctor told me that they’d need to get oncotype if HER2 is negative, so I guess I’m still waiting for a treatment plan. I had a PET scan yesterday, and have an appointment with my MO tomorrow morning.

  • jo-jo2018
    jo-jo2018 Member Posts: 139

    Oh LI77, I'm so sorry to hear about your diagnosis.