Recurrence results question

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Sopho
Sopho Member Posts: 41
edited November 2017 in Just Diagnosed

Hi all. I was recently diagnosed and had two types of cancer: a larger papillary carcinomaand a tiny invasive ductal carcinoma. My recurrence test results just came back at a 0, which was awesome to hear. However, when I looked at the actual test record it stated that they only tested the papillary carcinoma, I am guessing because the invasive ductal carcinoma was too small to test?

From my understanding the ICD is much more concerning because, unlike the papillary carcinoma, it would spread to other parts of my body. So how much stock should I put in the recurrence results if they only tested the type of cancer I am less concerned will reoccur?

(Before someone jumps in with "you should really talk to your Dr." Please don't bother. I have seen two oncologists and neither one is answering my questions. My insurance won't pay for a third opinion so I am kind of stuck figuring out things on my own here.)

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  • obsolete
    obsolete Member Posts: 466
    edited September 2018

    Hi Sopho, so sorry that your diagnosis brings you here, but you are not alone. I can empathize with your frustrations & disappointments because I'd been down that same road. Given your rare dx presentation, your best resource might just prove to be your Pathologist. I would suggest that you call & visit them to get more detailed clarification on your pathology or independently seek a 2nd opinion on your pathology (which is what I had done...it actually took 4 pathology opinions to straighten out my mess).

    What size and where was your IDC lesion located in proximity to your papillary tumor? At the outside of your papillary tumor's wall? Any IDC cell infiltration(s) entrapped within the papillary wall itself? What grade was the IDC? Mitosis value of IDC? Have you viewed your slides? Any LVI (lymph-vascular) invasion seen? Any isolated malignant cells or clusters observed in your nodes?

    The answers to these questions from your pathologist might help determine the infiltration & proliferation tendencies....which is what had been explained to me by Breast Pathologists with whom I had consulted? (I also had conventional IDC cells mixed into a good size invasive & solid papillary tumor.)

    Papillary tumors are usually described with a variant of "invasive" or "encapsulated" or "intracystic" or "intraductual" or "solid". And as such can be any of the molecular subtypes (Luminal A or Luminal B or TN or HER2+, etc.), so you may wish to quiz your Breast Pathologist on this also. Please consult with Breast Pathologist experts in your situation, as rarer Papillary with invasive components can get pretty complicated.

    And Papillary Carcinoma can be invasive or occur in multiples, so it's important to drill down a little deeper into your pathology. Some Papillary can spread regionally. Wishing you the best....


  • Sopho
    Sopho Member Posts: 41
    edited October 2017

    Thanks for your answer, obsolete, it is very helpful. I haven't even been given the option of talking to the pathologist directly. I believe that the pathologist consulted on my case is out at Mayo, which is a days drive away, but perhaps they would do a phone call or a video visit. Person who wrote the report in my chart out of Mayo's number is on my chart...but I don't know if this was the pathologist or a lab tech? If I call them directly would they even talk to me?

    I know that the two tumors were in different parts of the sample from my lumpectomy. The pappilary tumor is described as "encapsulated" in the results in my chart. The IDC is described as a "microinvasion in a background of extensive DCIS" (there was also a paploma...but I have been told those don't really matter).

    They have not tested my lymph nodes, they have said that they will be doing a Sentinel node biopsy with the follow up surgery (lumpectomy or mastectomy, I need to decide but feel like I can't get the information needed to make the decision).

    I don't understand if the microinvasion of IDC is fundamentally different than the cells of the DCIS? From what I am reading it sounds like they are the same thing...but then why was the recurrence test only run on the papillary carcinoma? They also about there being a lot "pre-cancerous cells" and I don't know what relation those have to all this... And I am getting different reports and explaination each time I see a Dr....

  • obsolete
    obsolete Member Posts: 466
    edited September 2018

    Hi Sopho, please feel entitled to speak freely to any professional directly who consulted on your case. Most pathologists are more than happy to speak by phone or even give a tour of their lab and walk you thru your pathology slides. The pathologists had been very receptive to my questions, except one lab insisted that I speak only with the Director or Pathology on questions.

    Regarding your unusually low genome assay recurrence risk of "0", your lab was responsible for submitting that block or slide(s) which presented the most aggressive cells. If your lab possibly messed up, you may be possibly be entitled to a repeat assay, so you may wish to consider consulting with your hospital's patient advocacy or customer service dept. to obtain a credit for the costs of your original genome assay or obtain a repeat assay at no cost to you. (Me too.) However, I would speak with your Pathologist directly first.

    That's good news that your papillary tumor was entirely encapsulated, meaning the papillary tumor was enclosed within a duct inside a capsule.

    Regarding your need for follow-up surgery, were your tumor's margin(s) dirty with only DCIS or also dirty with more IDC micro-invasions & papillary cells? Knowing this answer might help you to decide on which type of further surgery.

    DCIS, IDC and papillary tumors can present with different grades within the same breast. You should have been given grade values for each subtype of cancer, which may help you to decide on your final surgical plan. I would also press the pathologist for the molecular type (Luminal A or Luminal B, for example). Luminal A tumors are much less aggressive and are often lower risk for recurrence.

    If you have a copy of your pathology report, look for the name of the pathologist who signed your report and please give them a phone call or schedule a phone consult in advance with the department clerk. Good luck.


  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    You may also want to know the total volume of IDC, as if it is only a small micro-invasion (MI) the implications can be quite different. You can read more here: https://www.researchgate.net/publication/11370013_Breast_ductal_carcinoma_in_situ_with_microinvasion_A_definition_supported_by_a_long-term_study_of_1248_serially_sectioned_ductal_carcinomas


  • Sopho
    Sopho Member Posts: 41
    edited October 2017

    Whelp, I was told "no" by my local team when I asked to speak directly to the pathologist. ("It's not an option. I don't even know how we would begin to do that.") I apparently had two, one consulted through my local hospital who I can't even get the name of and one at Mayo who did the Dx. They won't connect me to either, but I have a call out to Mayo to see if I can talk with the person there.

    I am just so sick of my Dr.s right now I can't believe it. I would almost rather just keep my shitty margins and risk it than see them again. Last week I asked for my exact diagnosis as it would be written in the research to help me know what to look for...and I was told that "i don't know exactly what you are asking for, but we don't give out that kind of thing to patients" and told to contact medical records to get the reports.

    My insurance is specific to this one local hospital group and everything else is "out of network." I doubt I could get a refund on anything because the hospital and insurance are one and the same. We are thinking that there may be some possiblity of just going through Mayo since there is some sort of agreement there...but that may just be for the lab and not the rest of the care. I just can't imagine going through all this with these people who won't even provide me.with basic information and cant answer any questions honestly.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2017

    Sopho - That's ridiculous! You are employing them! They work for you! I would definitely consult with my insurer to see if there were any other options. Any diagnosis of cancer leads to an ongoing relationship with your providers. You need to have both confidence in them and a sense of comfort from them. It's a long haul.

    You have every right to your reports and imaging studies from any provider. It may just be a situation where you need to contact the right office or fill out a form. I met with 2 breast surgeons, 2 radiation oncologists, and had my pathology reviewed by 2 different centers. Having all of the info is crucial to your peace of mind and decision-making ability.


  • Sopho
    Sopho Member Posts: 41
    edited October 2017

    I have an appt. with a Dr. at Mayo and this is one of her 100+ published studies! Jumping for joy right now!

    Mac Bride MB, Neal L, Dilaveri CA, Sandhu NP, Hieken TJ, Ghosh K, Wahner-Roedler DL. Factors associated with surgical decision making in women with early-stage breast cancer: a literature review. J Womens Health (Larchmt). 2013 Mar; 22(3):236-42. Epub 2013 Feb 21.

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2017
  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2017

    I called up the pathology department directly, said I wanted the pathology sent for a second opinion and why. Chief of staff called me back and said he would be happy to pull my slides and take another look. So helpful. I never did send it for another opinion. Also member Beesie had a similar diagnosis to you re:microinvasion. Her posts are incredibly knowledgeable.

  • beach2beach
    beach2beach Member Posts: 996
    edited October 2017

    Hi Sopho,

    I remember whenever I have had biopsies, I have gotten an actual copy of the pathology report. On there is the pathologists name and wherever it was analyzed. Get all your copies. You have a right to everything, no matter private paying or HMO, PPO whatever the case may be. That would turn me off also to have medical professionals who are playing stupid with me when I'm asking questions or make me feel like I don't have the right to know or would not understand.

    So glad you have an appt!

  • Sopho
    Sopho Member Posts: 41
    edited November 2017

    Just an update: Mayo has been great but they found a second site with DCIS through another core needle biopsy. Surgery is set for the first week of Dec.

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