Fibroadenoma turned to be IDC (Tubular)

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DearMila
DearMila Member Posts: 3
edited June 2014 in Just Diagnosed


Hi All,


It all started couple of weeks ago when a mammography screening confirmed the presence of a lump in the upper outer part of my left breast. 3 months earlier I felt certain discomfort while wearing bra. I was also able to feel a lump with my hand.

At first, the prognosis was good - doctors were suspecting fibroadenoma, thus I was scheduled for incision biopsy (not needle biopsy). Now, when I have the biopsy result, this seems so wrong as I could have done lumpectomy instead..


It is hard to explain what I've been through for last 2 weeks. First it was the denial - I was not willing to accept that the tumor in the paraffin block I was holding was mine.. Then it was the second biopsy which I requested from another lab. Next it was the consultations with more than 5 surgeons, all claiming that their method is right. And I had different opinions of course, so it was impossible to believe there is a common practice for such cases like mine. Below are the results of the immunohistochemistry:


8 mm tubular invasive ductal carcinoma


HER2 1+ negative

ER 2+5=7/8 strictly positive

PR 2+5=7/8 strictly positive

TOP2A 2+ moderate positive

p53 1+ weakly positive

BRCA1 1+ weakly positive

p95 1+ weakly positive

Ki 67 1+ (5-10%) weakly positive


Bloom-Richardson: 1+1+1 = Total Score 3, Grade 1.


Most of doctors here in Bulgaria believe that I should go after an immediate surgery, which I already understood is the right thing to do. What I am not happy with is that none of them talks about breast conservation surgery and I am aged 34, no kids. Meanwhile I talked with couple of clinics abroad and they all wanted to start with a Pet-CT scan so to define the staging of the disease.

From everything I read the last days, I should be a good candidate for SLNB prior to ALND, but it seems nobody here in Bulgaria sees things this way. Signing for a treatment abroad seems to be the only reasonable thing to do, although quite expensive.


I found quite a lot valuable information on the forums, thus I decided to create an account. I think all I need now is someone to talk/share with, someone who has also been diagnosed with this horrible disease. Because now I need courage and I will need a lot more for what's coming next.

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    DearMila, it sounds as though you have a very small, low grade, non-aggressive type of breast cancer. Certainly with this type of diagnosis, normal treatment in North American (and most of Europe, I suspect) would be a lumpectomy + radiation, and a sentinel node biopsy. Tubular breast cancer tends not to move to the nodes so it makes no sense at all to do a full axillary node dissection. And with such a small tumor, it would also be unusual that a mastectomy would be considered medical necessary.


    The one issue with having a sentinel node biopsy is that you need to have a facility and a doctor who is experienced with the procedure, and that might be the problem that you are running into. I don't know where you are in Bulgaria, or what your options are to find a different hospital (perhaps a training hospital associated with a university) within Bulgaria or in another country in the EU. But if I was in your situation, that's what I would focus my effort on.... trying to find a hospital where I could avoid an unnecessary mastectomy and ALND. The good news is that tubular breast cancer is usually not aggressive, and you have a grade 1 tumor, so you do have time to see if you can find another place to have the surgery.


    One additional point for clarification. If I understand your post correctly, you never were actually diagnosed with a fibroadenoma - it was just suspected from the imaging.... but never confirmed by a biopsy. So it's not as though a biopsy-confirmed fibroadenoma evolved to become breast cancer. It's a small point, but a lot of women come through this board who have biopsies that show that they have a fibroadenoma. They often worry about misdiagnosis or whether a fibroadenoma can become cancer. I want to clarify (and be sure that I understand) that this isn't what happened in your case. Your doctors suspected you had a fibroadenoma, but it was just a guess based on the imaging; it was not a diagnosis, correct? Often doctors are right about what they think something is based on how it looks on the imaging, but sometimes they are wrong. That can happen and that's why biopsies are done.


    Sorry that you find yourself in such a difficult position. (((Hugs)))

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013


    Dearmila - Sorry to hear about your diagnosis. One good thing is that although any cancer diagnosis is scary and difficult, you have a very small tumor and it sounds non-aggressive. Beesie is really spot on about what she says (she is a wealth of info). The only thing I would add is that it looks like your cancer is er+ pr+ HER2 - . This is also a 'good thing'. In addition to the lumpectomy with a SNB, followed by radiation, my impression is that they would follow that up with Tamoxifin.


    As far as the biopsy is concerned, they will always do a biopsy to confirm that something is in fact cancer prior to doing more invasive procedures. More often than not biopsies return negative results & you certainly wouldn't want them to give you a lumpectomy and then find out that it was unnecessary. Did all five of the surgeons that you consulted with recommend a mastectomy and did they give you any reason as to why?

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  • DearMila
    DearMila Member Posts: 3
    edited December 2013


    @ Bessie

    You are correct, I was never diagnosed with fibroadenoma - it was just suspected from the imaging and never actually confirmed by a biopsy. The tumor was taken out during a planed incision biopsy and under local anesthesia. And then the results from the lab showed it is a carcinoma. I am not quite sure whether the doctors indeed suspected fibroadenoma at first or, they just didn't want to tell me the truth of what they see.. Anyway, I already have second biopsy confirming the first one, and a third biopsy which came with the immunohistochemistry.


    @ ziggypop

    You are right about the ER/PR being positive, together with the HER2 negative. Most probably I will have to go through a hormone therapy. But I am a bit worried as most doctors here talk about 4-5 years of treatment. And since I am 34 and with no kids, it looks like I will have to think of an eventual pregnancy at age of 40... I read the forums for some girls having hormone therapies for less than a year. How common is to have such short treatment?

    To your second question - it is a tough one to answer. Take it this way - things here are happening decades late. Most of the clinics (so as the doctors working in them) are following established/approved standards. And this is what I was answered - for your case we have to follow the procedure, which is mastectomy together with ALND. It really sounds sad. For me having an access to foreign literature and being able to communicate with clinics in Germany, France, Turkey, it not only sounds sad, but it also sounds tragic. And this is why I am more and more thinking in the way Bessie suggested - to try not to rush things so to be able to find a place where I will be able to avoid unnecessary interventions.






    What I am really happy with is that you both believe that SNB together with lumpectomy is the right way to go. I came to such conclusion myself couple of days ago but since I am not a specialist I was scared to share it with any doctor. Now I kind of feel happy that I gave myself time to think over everything. Unfortunately this is the sad reality in Bulgaria - no matter how early you are diagnosed and what kind of tumor you have, nobody offers you a personal approach, plus the highly limited options of treatments.


    Anyway, I have few tough decisions to take this week. One will be whether to go after a Pet-CT scan prior the surgery.


    Thank you girls for your support, i really needed it!

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013


    As to tamoxifin - given your cancer (as it looks now, things can change when the path report from surgery occurs) grade and size, there will be a certain percentage benefit (and if you have a baby, you want that benefit). When you have an oncologist who you feel you can trust, talk to him or her about pregnancy & tamoxifin - I know that it's not a good idea to be on it if you are trying to or are pregnant - but you might take a break for pregnancy & then get back on it (maybe skipping breast feeding in favor of formula). ((hugs))

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  • DearMila
    DearMila Member Posts: 3
    edited December 2013


    That's what I was advised today - that the best way is to go after a hormone therapy for at least 2 or 3 years, than think about pregnancy and if everything goes well, go back to the treatment for another couple of years.


    I am currently in Istanbul, Turkey. Decided not to waste my time with people guessing how to treat me in Bulgaria.

    I already had a consultation with both surgeon and oncologist. There are several things I have to do first before they give me their medical opinion though. Most likely, given the tumor being 8 mm HER2 negative, they will stick to SLNB together with lumpectomy. But before that:

    - Pet/CT scan

    - Breast MRI

    - Blood test, including tumor markers

    - Yet another biopsy of the tumor together with immunohistochemistry for HER2, ER and PR


    All results should be out by Friday when I will have the hospital's final opinion and recommendation for further treatment. They also said something about Oncotype DX, but only if all of the above tests show no reason to believe there are metastasis.

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    DearMila, thank you for the update!


    It sounds as though you are in much better hands now - everything you are hearing from them seems to be completely consistent with the standardized treatment guidelines that I'm more familiar with. It's interesting that this facility wants to redo the biopsy, but that's good because they will be able to confirm the diagnosis and then develop a plan of action from there. I'm glad that the option of a lumpectomy and an SNB is now on the table. Since it sounds like this is what you would prefer, I hope it's still a feasible option once all the new test results are in.


    Good luck with all the testing. Hopefully the only surprises are good ones!

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013


    DearMila - That is great! I am so glad that you got to a place that is running all the tests that should be run. I'm actually not all that surprised that they want to redo the biopsy. It sounds to me like things in Bulgaria are outdated & they just want to start from the beginning and make sure that they are doing exactly the right things. Please keep us informed as to how things go. I am looking forward to seeing pictures of a new little baby in a few years. : )

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