Help needed...2 recurrence...

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Nichola
Nichola Member Posts: 402
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hi

I have recently been DX'd with 2nd recurrence ... now chest wall.  This is my 7th tumour...3 x first time, 3 x in skin 2nd time and now isolated 6mm under arm.  The problem is that this is incredibly rare as each time the tumour is still grade 1 and Er+ Pr+ and Her2-.

Has anyone out there been given chemo for grade 1 tumours?  Onco type DX is apparently only used for primary and this tumour is too small for independent testing.

I am waiting to see onc and have also asked for 2nd opinion at the Marsden...but I'm trying to do as much research as I can as I am feeling like a time bomb!

Any advice or similar experience stories much appreciated...

Nikkix

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  • sam52
    sam52 Member Posts: 950
    edited July 2010

    Sorry to hear of your predicament, Nikki.I can't give you any help from a personal perspective, but I am sure others will come along who can.

    As things are done differently in UK you might like to try asking the same questions on a UK forum - bcpals.org.uk is one where I am sure you will find people who have had a similar experience.You are definitely doing the right thing by going for a second opinion to the Marsden as they are really at the forefront of treatment.

    Best wishes,

    Sam

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

    Nichola ~ Do they test for Her2 with FISH (the acronym name for the most sensitive Her2 test) in the UK?  Looking at your stats, that's the one thing I might want double-checked.  There have been some recent articles in the US about the importance of this (getting the Her2 dx right), and how sometimes the basic test isn't sensitive enough (my layman's term).   I will try to find a link to a recent article from one of our major newspapers (I forget if it was the New York Times of Wall Street Journal) about this and add it to my post.  But that's the one thing that I thought of that just might explain the so far unexplained aggressiveness of your bc -- that it was borderline (-) per the test, but perhaps would have been (+) if tested by FISH.    Deanna

    Here's that article:  http://www.nytimes.com/2010/04/20/health/research/20cancer.html?scp=1&sq=breast%20cancer%20targeted%20treatment&st=cse

    P.S.  It looks like I've already suggested this possibility in a previous post to you on another thread.  Sorry for the duplication if you've already checked into this.

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  • Nichola
    Nichola Member Posts: 402
    edited July 2010

    Thanksfor the responses...

    Will do Sam, though my BC team have already told me this is incredibly rare and indeed suggested the 2nd opinion from the  Marsden:  So as the UK sites don't have such a diverse and large membership, I'm actually praying the great ladies on BC.org can help.

    Deanna...yes the FISH test is done here...however I will ask them to make a second test as I know the HER2 status is somewhat evasive!

    Nikki

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited July 2010

    I agree with Sam. Granted the pals site is small-but several girls have had lengthy experiences with the Marsden. You really need to discover what is accepted protocol in the UK-what happens in the US, doesn't always happen in the UK-and vice versa.

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  • tpillsbu
    tpillsbu Member Posts: 8
    edited July 2010

    I was diagnosed last March with multi focal, grade 1, ER+, HER- on left breast. I did receive 4 rounds of AC followed by 4 of Taxol.  Hope that helps...

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  • navygirl
    navygirl Member Posts: 886
    edited July 2010

    Nikki...please, INSIST on the HER2 FISH test. Minus that, everything else doesn't add up. There has to be a missing link and it seems to me, that this would be the most likely candidate! I will say a prayer that you get someone who is ready to jump through hoops to figure out what is going on to give you these reoccurences. Please let us know how you make out with Marsden, and getting a re-do on the HER2. (((hugs girl)))

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  • Nichola
    Nichola Member Posts: 402
    edited July 2010

    Thanks Girls

    Tpbillsbu - Wondering what was your tumour loading was?  (ie. longest length ofeach tumour added together)?  Also what was your staging?....And...(sorry to be so inquisitive, but it's such a relief to find someone with the same initial DX) - Did you have a mastectomy and was your chemo a lesser amount because it was grade 1?

    Navy Girl - spoke to my onc who says they can only do the FISH test if the pathology shows a protein uptake of 2 or more.  Mine was defo minus ie. not even borderline!  He is recommending chemo, which I can do, however he also says possible removal of my second reconstruction and more second targetted radiotherapy.  I can grow my hair back, but I can't grow another boob so this is freaking me out as it was absolutely awful losing my first LD flap reconstruction, helped only by knowing I could have the tram diep that I now have.

    I'm going on holiday on Thurs to try and relax for 12 days and will go for 2nd opinion when I get back.

    Thanks again

    Nikkix

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

    Hope you can relax, Nichola.

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