Warning and thanks for giving me courage!

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Nichola
Nichola Member Posts: 402
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis
Warning and thanks for giving me courage!
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  • Nichola
    Nichola Member Posts: 402
    edited May 2010

    Hi Girls

    On a previous post by Karenmarie "(Recurrence after 9 years)" - I was advised to demand a biopsy for some scar tissue that was bothering me on  edge of my diep.  I lost my first LD reconstruction because of a multiple skin recurrence 2 years ago...

    My onco-plastic surgeon was absolutely positive that there was nothing suspicious, but i perservered  and asked him if he could be 100% sure...he said no, so I demanded a biopsy...

    It's not the best news as yes I have my second local recurrence and 7th tumour in as many years.  I feel proud of myself for insisting, but because the recurrence is low grade, feel like a walking timebomb.  The problem is that I'm not sure if they'll do chemo because of the low grade of tumour, so just waiting for the 11th June lumpectomy and subsequent pathology.  It's resisted radiotherapy and tamoxifen so now on Arimadex.

    Thank God for this site and all your support,

    Nikkix

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2010

    Nikkix -

    You probably don't remember me, but you were the first person I ever PM'ed with when I came on this site two years ago.

    I am so sorry that you have to fight the beast again, but so glad that you caught it early!

    Will be thinking of you in June.

    If there's anything I can say or do, just let me know.

    Sue

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  • Nichola
    Nichola Member Posts: 402
    edited May 2010

    Thanks Sue

    I do of course remember and reading your profile again glad to see you are doing well?

    I'm still trying to get my head round this.  We don't seem to do oncotype DX here in the UK to see if chemo might help.  Did you have that text done?

    Nx

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited May 2010

    I'm so sorry about  your recurrence...it's so unfair. Thank goodness you were proactive in getting it checked.

    It seems to me that if you've had multiple recurrences, chemo might be one hope to get rid of this thing forever. I wish you the best.

    hugs,
    Jen

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  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2010

    Nichola ~ I'm so sorry to read about your reoccurance.  Since your bc seems to be quite resistant to Tamoxifen, one question I might ask is, are you absolutely certain that they have your hormone stats and Her2 stats correct?  Could there possible be a question about your original dx, or could this new lesion be different than your first? 

    In the US, they do something called a FISH test on the Her2 factor when it's at all a close call.  Do you know if they do that in the UK, and if it was done on yours?  I'm not a doctor, but it just seems like your bc is acting pretty aggressively for a Grade 1.  If I was in your situation, from what I've learned here and from extensive reading, I think I would ask them to double check all of those hormone stats -- just to be sure you're getting the right treatment.

    There was a recent article about this in the New York Times.  I'll see if I can find it and will add it to this post if I do.   Deanna

    It took some searching, but here you go!  http://www.nytimes.com/2010/04/20/health/research/20cancer.html?scp=1&sq=breast%20cancer%20targeted%20treatment&st=cse

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  • Nichola
    Nichola Member Posts: 402
    edited May 2010

    Thanks Jen and Deanna,

    it's mad, but chemo doesn't seem to work on low grade usually. 

    I was originally and on first DX and subsequent skin recurrence, highly estrogen and progesterone pos. HER2 neg.    I spoke with my Onc on Friday and he said it would be important to see what pathology we get this time as he suspects it might have changed ER status.  They are all agreed this is extremely unusual.  I feel really angry with my onco-plastic surgeon though, because I had to insist on the biopsy and now he is trying to minimilise it saying he doesn't think it will have metastised...and questioning whether it's even worth me getting staged, because I've got no symptoms and because of the repeated low grade status:  It makes me mad because I know that each tumour has the propensity for mets as I have seen numerous accounts from ladies on this site saying they are stage 4, yet were low grade and node negative.

    I also read that  that you are more likely to get metasteses if the recurrence is within 2 years.  Both mine were!

    I'm sorry to vent, but I'm scared that because of the low grade they will not take this seriously.

    Nikkix

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2010

    Like you, I am grade 1 - I was told by my oncologist that they didn't recommend the oncotype for grade 1, because they weren't going to give me chemo if I had negative nodes.
    Got a second opinion, and got the same answer.

    But where you are, I wouldn't just be demanding an oncotype, I would also be asking about some of the new experimental tests that determine what type of chemo your individual tumor responds to. If you're interested, I'll see if I can find out some more.

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2010

    It's called chemo sensitivity testing, and is more like to be done on Stage 4 - but heck, 2 recurrences in 6 years = you guys need more information to treat me properly, doc!

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  • Nichola
    Nichola Member Posts: 402
    edited May 2010

    Hi Sue

    Please please, if you can find out anything more I would be eternally grateful.  My Onc said that the oncotype DX was contraversial in the UK and in any case would normally only performed on first DX tumours.  I really don't understand what difference it would make to do it on my current tumour.

    Nikkix

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2010

    Here's an interesting citation:

    http://www.oncolink.org/resources/article.cfm?c=3&s=8&ss=23&Year=2003&Month=1&id=9326

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  • Nichola
    Nichola Member Posts: 402
    edited May 2010

    Hi Sue

    Please can you send that link again as I can't access it?

    Nx

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2010

    See PM - got the info on testing lab

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  • Nichola
    Nichola Member Posts: 402
    edited May 2010

    Thanks so much Sue...Defo going to look into this...

    Nx

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