Misdiagnosis

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marly588
marly588 Member Posts: 2
edited June 2014 in Second or Third Breast Cancer

Hi there.  I had a recurrence of breast cancer in Jan  2008, having had a mastectomy in Jan 2004.  This second time around the cancer had changed from eostreogen driven to triple neg and I was told it had metastasised and was in the bones.  I've been in treatment ever since, 7 months of chemo and then avastin every 2 weeks. A few weeks ago my oncologist, who is puzzled that I am doing so well suggested to me that actually they got the diagnosis wrong and I didn't have metastatic cancer after all.  I'm having various tests and scans now to try to establish whether this could be true. Obviously I'm delighted to have a better prognosis but pissed off at having had three years plus of unnecessary treatment that has exhausted me and made me ill and lots of decisions made on the basis that I had very litttle time to live.

Has anyone else experienced something like this and if so do you have any advice for me? I've stopped the avastin anyway.  It's not available on NHS and I was only getting it because I was in a trial and the drugs company continued to supply it after the trail finished.

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  • belleeast
    belleeast Member Posts: 653
    edited October 2011

    bump

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  • annafrederik
    annafrederik Member Posts: 66
    edited October 2011

    I doubt very much they got a metastatic diagnosis wrong. I'm assuming since they found out the hormonal status they did a biopsy of whatever they found in your bones.....that would have to be conclusive (unless the pathologist is seriously unqualified).  I would thank my lucky stars that I was doing so well. Even though I can't get in your oncs head, he's probably shocked because most aren't so lucky. Just my thoughts. What a gift you've been given!

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited October 2011

    hi marly...what a hell trip you've been on..I have had just a tiny taste of what you must have gone through/are going through. When dxd last year with stage IV..i got a call to go back into oncs. They said they werent 100% sure they were mets (there was disagreement at the conference they have)..but not to get my hopes up as it was a winning lotto chance that it wasnt mets..(!what the f*%^ do you mean dont get my hopes up!).... they ordered a bone biopsy on rib lesion which was then cancelled due to it being a 'risky spot'..so they then decided a spinal MRI would confirm met. disease. from MRI results they said, 'sorry, you have inumerable spinal mets, sorry we got your hopes up'...even that small amount of chaos on dx has played on my mind (and now whether denial or wishful thinking, i sometimes wonder if they got it wrong..

    I wanted to respond to you as i am very interested in the tests you mention that they believe will confirm one way or the other. What do they mean by you 'doing so well' ?..and have you been presenting as 'stable'..no progression or shrinkage etc.?..did you have a bone biopsy at dx?..i havent had one, and they keep trying to put me off when i ask if possible...sorry for the questions... I cant believe what you are going through!

    Im sure you will be overjoyed if the results are no mets. But it will probably take a while to get over the shock, and the head space we force ourselves into to deal with stage IV disease. I feel for you so much, but also wish you luck!

    misdiagnosis is a very good topic to bring up. I hope you hear from some others..crossing fingers for you Marly x

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  • tarry
    tarry Member Posts: 156
    edited October 2011

    Bumo

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  • marly588
    marly588 Member Posts: 2
    edited October 2011

    thanks for responses. That's life, - I'm having CAT scan, after the bone scan and the x-rays and possibly MRI and then mammogram of remaining breast. Biopsy of the bone would be definitive they say but I'm not keen on that. I had a very large tumour just under collar bone that they did biopsy and that plus bone scan is what gave original diagnosis. Oncologist is honest that they just don't know now but they are asking the questions because with  a triple neg diagnosis I have outlived their expectations.  Yes, I have been reported as 'stable' and no progression for over 3 years.  I know I am lucky to get this reprieve and that's what eveyone will focus on but I'm left without a carear, disabled because I haven't been able to have medication or treatment for arthritic joints and probably bankrupt having spent lots of money enjoying what I thought were my last few years! Actually, in myself I'm fine and have learnt to live with the uncertainty, just wanted to see if there are other people out there who have had similar experiences.  I'm sorry to hear what happened to you.  It feels like a rollercoaster doesn't it and its hard to get your head round it all.

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  • Pamh123
    Pamh123 Member Posts: 2
    edited October 2011

    I was diagnosed in 2009 and went through the whole chemo, mastectomy and radiation process (basically to hell and back). I was then told I was clear and could do the reconstruction - 2010. Now in June this year I was told it's back - metastatised in my spine and liver - I was only sent for bone scans and a sonar to confirm this.

    I have started on hormone blockers and bone builders (Zometa).and the back ache has gone away, but why do I feel so good if I am supposed to be so ill? Is it possible that I have been misdiagnosed (or am I just getting my hopes up?)

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