Looking for similar cases - Breast Cancer showed on knee lesion

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kneecancer
kneecancer Member Posts: 5
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hello all, I'm new to this board (well, really new to all of this).  Earlier this year, I had a routine dermatology exam and had a bump removed from my knee (looked like an ant bite - but, had been there for about a year). 

3 days later, I got the call that crumbled my world.  The pathology came back as adenocarcenoma typing as breast cancer.  WHAT??  I have breast cancer on my knee??

It's been a tough 6 months trying to figure out what is going on.  I had a full PET scan head to toe that came back negative.  I had an MRI which resulted in 3 biopsies - all negative.  I'm scheduled for a Preventative full hysterectomy in November. 

So, i'm a Breast Cancer patient with no breast cancer.  I feel very lucky, as this is the best thing that could occur.  However, I'm scared to death.  With everything I've read - if you have Breast Cancer showing somewhere else in your body (in my case - the skin), there is an origin point.  However, we cannot find an origin point.  My oncologist has basically given me an all-clear bill of health.  But, how can that be. 

Honestly, I'm just looking for someone who may have advice for me.  I'm on a monitoring basis for now - Blood draws 2 times a year and MRI every 6 months.  I think my major fear is the unknown. 

While Googling - I keep finding that Metastic Breast Cancer is uncurable and generally deadly.  But, with no origin point - am I just a major anomoly? 

Thanks for your advice!!

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  • J9W
    J9W Member Posts: 395
    edited October 2013

    Wow, what a frustrating thing to go through.  Stop Googling...that will scare you more than necessary. If you have MBC, stay on this site and talk to others who also have MBC. That way you'll get info from people who walk the walk, so to speak.  Once the C word is associated with you, you'll always have a little fear of the unknown - it comes with the territory.  Regards,  Janine

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  • mdg
    mdg Member Posts: 3,571
    edited October 2013

    Can you go somewhere else and get a second opinion?  This is a strange one.  I can imagine how frustrated you are.  We are all scared to death it is going to come back. Unfortunately that is part of what we all experience once diagnosed.  I hope another doctor may be able to find the origin......good luck! 

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited October 2013

    Omg now that is crazy. Is it possible the lab messed up your first biopsy. Im so sorry for the grief this has brought you and by all means get another opinion

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  • bak94
    bak94 Member Posts: 1,846
    edited October 2013

    I just had to respond as this is such an unusal thing. I had a former coworker tell me that her mom had breast cancer. She found a lump on her scalp and had it biopsied and it was breast cancer, but like yours, there was no primary. She went through all types of testing and they never found anything else. I haven't talked to her in years, but do know for 5-6 years after she found the lump nothing else turned up, she did not do any treatment or surgery other than remove the lump on her scalp. It was so strange. I also kinda wonder if these weird things that happen are because of lab screw ups. When I had my mastectomy after I had done chemo, the lab had found a tiny less than 2 mm of cancer in the tissue, but it was in a wierd spot and didn't look right. They re tested and re tested and found that it was a piece from the previous slide that was not mine, the equipment did not get cleaned properly. They tested and the sample did not match my dna*cancer or anything. The doc apologized profusely for the lab's mess up, but the good news was they scrutinized every bit of my tissue and could not find any cancer, chemo had taken care of it all. So frustrating and I am sorry you are going through this, as I know all the what ifs are so scary. Hopefully you will find some answers.

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  • Racy
    Racy Member Posts: 2,651
    edited October 2013

    Hi and welcome to a wonderful site. Do you have the pathology report which will show the specifics of the cancer: ER, PR, HER2 status? That would help a lot in understanding the type of your BC and treatment options.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2013

    Hi, 

    We too are sorry for what you are going through. The women have mentioned so many good points: do you have a pathology report, did you get second opinions, what other tests have you had done? Sounds like alot of unanswered questions. 

    We are thinking of you!
    The Mods

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  • kneecancer
    kneecancer Member Posts: 5
    edited October 2013

    Thank you so much, I've searched the internet for similar cases and find 2 things:

    1. No other cancers are ever found

    2. It's a precursor to finding cancers elsewhere.

    it makes me feel a bit better to know something similar has happened to a real person (instead of just an idea of it).

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  • kneecancer
    kneecancer Member Posts: 5
    edited October 2013

    I am going to repull out my pathology reports today and take a look - I'll post findings here and would love ya'lls "expert" opinions.  I did have the mass tested 2 times - both with the same results.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • kneecancer
    kneecancer Member Posts: 5
    edited October 2013

    Tested at different labs. One a derm pathologist, one a breast cancer specialist. Looking into getting a second opinion. I'm in frisco tx. Any recommendations??

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited October 2013

    I concur.  With such an unusual and unique situation, definitely have a second opinion. I would try to get it done at an Academic Hospital - they are know for really leading the pack with the most innovative and up-to-date methodologies and technologies.  If you can't locate one, then go to a big cancer center, that may have seen this at one time or another before and have a better insight as to what it means in your particular case.  Best wishes and please post your updates!  Thinking of you! 

    PS - You can send your slides to any hospital you like.  You can send them to Memorial-Kettering in NewYork, considered amongst the best.  It's actually a very simple process and I believe they will e-mail you the results in full.  If I can find out how to do that in my saved PMs I will post it. Someone sent me info on it before as I had my slides tested by a 2nd lab as well.

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  • kneecancer
    kneecancer Member Posts: 5
    edited October 2013

    You guys are the best.  I really feel like i should have posted a long time ago - when I first found out.  Thank you so much.  Debra, if you can post the information - that would be fabulous!!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited October 2013

    If by some chance Debra can't pull the info re sending the slides, just call the pathology department, explain the situation and they will walk you through the steps you need to know.  This is really a weird scenario and I feel you really need to get some concrete answer- whatever it may be.  God bless and am wishing you all the best. 

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited October 2013

    You are in Tx. You have the best cancer treatment center in the country in Houston. MD Anderson. You can self refer or ask you current doctor to assist. If anyone has seen it all they probably have.

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  • Racy
    Racy Member Posts: 2,651
    edited October 2013

    Wondering if this is invasive lobular carcinoma, which can show up in unusual places. Your pathology report will show if it's ILC.

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