Several questions, really need opinions

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barrthorp
barrthorp Member Posts: 7
edited January 2018 in Just Diagnosed

I was diagnosed with a 10 cm IDC triple negative breast cancer. Prior to this we thought it was a cyst. It was soft a "squishy", and it was a perfect looking circle of dark skin that outlined it. NO nipple discharge, NO nipple retraction. I had a mastectomy, and 0/12 lymph nodes were involved (thank goodness), and NO vascular invasion. Surgeon said it was very aggressive since my ki67 was 95%. Also, the tumor broke through my skin and was leaking so bad, that i went through 5-6 thick surgical bandages an hour. So my question is, could it of been misdiagnosed since i let it go so long that it was hard to tell if it was benign or cancerous, so they went the safer route saying it was? How in the world can a tumor so "aggressive" and so large, not affect any nodes or lymph vessels? And since it didn't that means no spread correct? It just stumps me how a tumor that took up 80% of my breast just kind of "sat" there. I really don't buy that. However a cyst or something benign would. And chances that a tumor that large would not result in nipple changes that most women get? I am just second guessing it. Any advice or answers would be greatly appreciated. Thanks.

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

    Oh barrthorp, I am so sorry that you're here and still in the early stages of sorting out just what exactly is what! I'm hoping others can come along and share their knowledge with you, but I'll start you off with the answer to one of your questions: "could it of been misdiagnosed since i let it go so long that it was hard to tell if it was benign or cancerous, so they went the safer route saying it was?" I'm sorry, but no. They've given you specifics about your cells, like the hormone receptor and HER2 neu status, as well as ki67 percentage. There are women on these boards who've had smaller bc with less aggressive stats than yours that did have lymphovascular invasion or other types of spread, and ones your size (or bigger) that did not. That is one of the awful and confusing things about bc. I'm sure you are still reeling from the unexpected news. Do you have meetings scheduled with an MO? That might help get some of your questions answered and get you moving forward in your treatment. Sending you warm thoughts and gentle ((hugs))

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  • beach2beach
    beach2beach Member Posts: 996
    edited October 2017

    Hi barrthorp,

    Welcome but sorry you find yourself here. I wasn't sure if you were asking whether they misdiagnosed you from the beginning. Of course anything is possible unless they were to have done an aspiration if they thought it was a cyst. Obviously if they did a sono(I assume you have had many done if they said it was a cyst) that the features suggested it was benign to them. How long were they following this supposed cyst? I would ask the surgeon at follow up, all your questions. Glad the surgery part is behind you. I don't know how far you would want to go with this, since you were misdiagnosed, but you could ask for all your imaging from when it first came up until recently (if you have not already done so) and maybe your breast surgeon could point you in the direction of getting another opinion on your images to see if indeed it may have been clear that you had something resembling more of cancer than a cyst. Thank goodness your nodes are clean,,that's great. I hope treatment is minimal for you also.

    As MTwoman said, smaller bc's can be very aggressive and larger sometimes not..and of course vice versa.

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  • Icietla
    Icietla Member Posts: 1,265
    edited October 2017

    Hi barrthorp, and welcome to BCO. I am so sorry about your diagnosis. A breast cancer diagnosis is always stunning, a terrible shock.

    >>"[...] nipple changes that most women get?"

    I am not sure most have nipple changes at time of diagnosis. Understand, all those conditions we are told to look for in breast self-examinations are some possible indications, but not nearly universal. There are other possible indications, but not so readily raising suspicions for breast cancers, because they are not specific to breast cancers. In many cases, there are no apparent changes -- no clues whatsoever, until routine screening imaging detects the cancers, some of which are not so likely to be capable of detection thereby at the earlier stages. In some breast cancer cases, the primary tumor/s cannot be found.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited October 2017

    You just never know, based on size or aggressiveness. I had a 1.2 cm "nonagressive" tumor (based on cell biology--but with a high Ki67), but it had already spread to one lymph node by the time they took it out. My surgeon was surprised. So you just never know. In any event, definitely be relieved that you didn't have any signs of spread.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2017

    Let me also chime in and say it’s not an one size, fits all disease. There are so many variables. These ladies have given you some useful information and advice. This website was my lifeline. Still is except we talk about so many other things besides BC now.

    I don’t think it was a misdiagnosis either. I know of women who waited to have a lump checked only to find out it had spread like wildfire.

    We all know hearing the grim DX is a shocker. Still research and treatments have come a long way even since I was DX 6 years ago.

    I always rule on the side of caution. I’ve had several cysts aspirated. The thing is I knew I had BC when I got the call that one breast was larger than the other. Never happened before.

    You’ll be okay. We are all living proof of that.

    Diane



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  • swg
    swg Member Posts: 461
    edited October 2017

    There seems to be NO rhyme or reason to this disease. Many drs don't even have the answers to questions like these.

    Someone with a 1 cm tumor could end up with several lymph nodes..I'm amazed at your stats, and the fact you have no invasion. That's..incredible. I'd imagine some university would want to study you.

    Best wishes for good health from this point on!

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  • barrthorp
    barrthorp Member Posts: 7
    edited October 2017

    Thanks everyone for the replies. You are correct! My surgeon got my permission to take photos and sign off on my tumor. He said they were going to send it to Barnes Hospital to have it studied. He said to have a tumor that large without lymph node or vascular invasion is unheard of.

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  • Texgirl
    Texgirl Member Posts: 211
    edited January 2018

    I just noticed on another post you stated you wanted no chemo or rads......is that still your feelings ? Sounds like you were very fortunate with the outcome of neg. nodes,etc....but are you aware that you have only chemo/rads, and surgery as a course of treatment in Triple Neg. breast cancer ? you can't take AI's etc. Don't be scared .Be your best advocate and read and study then make that determination. If ,you have already done so...please ignore my suggestions : )

    Letha

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