Plse help am I stage 4?

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EshLou
EshLou Member Posts: 17
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello everyone, I was diagnosed in November 2010 with grade 3 IDC with significant lymph node involvement to armpit and collarbone reaching the base of my neck, they started me on neo chemo straight away FEC x 3 /Taxotere x 3 then the usual scans, I then had a lumpectomy and have just strated radio to breast/armpit and collarbone/neck area. The good news is I have had a complete path response to chemo and my pathology report following surgery was that there was no remaining cancer in breast or lymph nodes in armpit, no microscopic cells found out of 5 nodes and breast tissue. I have spent the last 3 weeks celebrating and feeling that I can finally start moving on, the breast surgeon was very positive about my future. I am BRAC1 and have said I want a double mastectomy in 6 months time. I went to see my oncologist yesterday who said that on my first CT scan there was what they called a small lesion (which they said not to be concerned about as it could be a bit of fat or blood vessel), since that time this has disapeared and she is now saying that it is highly probable that this was a very small met in my liver; she is now saying that despite my complete pathological response to chemo that I am now very high risk and it is "very likely" the cancer will recur within 2 yrs as i have "controlled secondary disease".  She told me she is recommending I dont have the double mastectomy as despite me being BRAC1 I should just go and have some quality time and worry more about metastatic disease than removal of my breasts. The nurse specialist and breast surgeon do not agree and state the spot on my liver is not conclusive and I am now seeking a 2nd opinion privately. They are all saying I am a unique case and none of them really know what my prognosis is, I asked her if this changed my stage to 4 instaed of 3 but she changed the subject. I am so confused, worried and feel isolated as they say I am a unique case, I am 31, triple negative and have genetic breast cancer and now my anxiety has been raised about mets to my liver 5 months after diagnosis, all beit they all agree I am in remission at the moment, does anyone have any views/advice or experience? Thank you

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  • LindaVA
    LindaVA Member Posts: 23
    edited May 2011

    Gosh, I hope someone responds that can give you answers. I'm glad you are going to get a second opinion. If you want you may go to the Johns Hopkins web site. They are one of the top Cancer Centers in the US. The site is called "Ask an Expert" If  You click on one of the categories there is a tab on the right where you can submit a question. I have done this before and they answer it within a week. They ask you to search the forums first to see if it has already been asked. I figure the bottom line question for you is, given your unique situation, would it be helpful to get the bilateral mastectomy. Let them know you are from the UK.

    Here is the link

     wwwhopkinsbreastcenter/services/ask_expert

    Keep Us/me posted!

    Linda

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  • carcharm
    carcharm Member Posts: 486
    edited May 2011

    If I were you I would find a surgeon that would agree to having your breasts and ovaries removed. Noone can say for sure if that spot was a liver met or even a glitch in your mri. You are cancer free but have a very high risk for reoccurance. Even if it was a met to your liver the  chance of reoccurance is very high due to your BRCA1 status.

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  • Nichola
    Nichola Member Posts: 402
    edited May 2011

    Hi Eshlou

    I am so sorry you are going through this, my heart goes out to you especially as you are so young. 

    I have a couple of small lesions on my liver, but they are not considered malignant because they have not increased in size.  

    I think that the reason they are presuming your liver lesion was malignant is because it has disappeared after chemo.  Normally a malignant lesion would be seen (hopefully) to reduce in size  after chemo, so that is why they are saying you are "unique", because yours has "disappeared".  If it was a benign lesion they would expect to still see it on the scans after chemo.

    The fact that you had such a great response to the chemo and it has disappeared from the latest scan is very good news on one hand, but the concern is, that since they are presuming that it was indeed cancerous and in an organ, that it will return at some stage...but no-one can truly predict when.

    Scans can be very misleading as I have found:  I hope and pray that there has been some sort of mistake, but for sure it is little comfort when you are battling with the anxiety and paranoia that this desease brings to us all.

    You are in my thoughts and prayers...sending big love and hugs,

    Nikki xx

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  • Nordy
    Nordy Member Posts: 2,106
    edited May 2011
    Eshlou - given your excellent response to chemo - I would get a second opinion. Who is to say that you are going to have a recurrance in 2 years time? Really. Does she really know this? And since you are BRCA positive - my understanding is that a bilateral mastectomy after a cancer diagnosis is pretty much standard of care. Please seek out another MD for a second opinion. In my honest opinion, no one can really say, without a doubt, when a cancer will come back. You need an MD who has your best interest in mind and one that has not given up on you already. And please - CELEBRATE your excellent response to chemo- this is a good thing!
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