I have stage 4!

lisa36718lisa36718 Member Posts: 9
edited September 2016 in Metastatic breast cancer
I was diagnosed with early breast cancer in December 2013 and recently diagnosed with stage 4 breast cancer metastasized to my liver.

I was devastated with this coz i thought it was all over...i had chemotherapy and radiation and I was just on Herceptin. Now I have to go through chemo again. They started me on Kadcyla which is a new drug so I really don't know if its going to work.

I often asked myself why this is happening to me....even my Doctors are wondering why it had spread so fast despite all the treatments I had.

I'm wondering if they have done the right treatments.....

Comments

  • lisa36718lisa36718 Member Posts: 9
    edited March 2015
    thank you for your positive comments about the drug.i am really worried that i will lose my hair again... i have been called names when i was wearing a bandana before at work....i have been told as well that i wont be able to find another job because of my cancer..she said no one will accept me....
  • Barbara.Smith.Barbara.Smith. Member Posts: 9
    edited March 2015
    Hey Lisa you poor darling, my heart goes out to you. My journey is only just starting, who knows where it will end!
    A friend recommended a book to me explaining breast cancer treatments and the percentage of difference it makes to your recovery.
    Breast Cancer Your Treatment Choices by London Oncologist Terry Priestman. I haven't read it as she only told me today but it may have some useful info.
    Take care, sending love your way,
    Barbara
  • Barbara.Smith.Barbara.Smith. Member Posts: 9
    edited March 2015
    Hey Lisa you poor darling, my heart goes out to you. My journey is only just starting, who knows where it will end!
    A friend recommended a book to me explaining breast cancer treatments and the percentage of difference it makes to your recovery.
    Breast Cancer Your Treatment Choices by London Oncologist Terry Priestman. I haven't read it as she only told me today but it may have some useful info.
    Take care, sending love your way,
    Barbara
  • Barbara.Smith.Barbara.Smith. Member Posts: 9
    edited March 2015
    Hey Lisa you poor darling, my heart goes out to you. My journey is only just starting, who knows where it will end!
    A friend recommended a book to me explaining breast cancer treatments and the percentage of difference it makes to your recovery.
    Breast Cancer Your Treatment Choices by London Oncologist Terry Priestman. I haven't read it as she only told me today but it may have some useful info.
    Take care, sending love your way,
    Barbara
  • Sarah54Sarah54 Member Posts: 164
    edited March 2015

    So sorry to read Lisa of your secondary cancer. Can you tell us how they found it or why they found it.

    Cyber hug

    xsarah

  • lisa36718lisa36718 Member Posts: 9
    edited March 2015
    before they started me on chemotherapy i did ask my med oncologist if after the treatments will do they a scan just to make sure it didnot spread.they told me they dont do scans for breast cancer. they said that is why they are doing chemo,radio & hormone therapy for me.. i have an aggressive type of breast cancer that is why i was worried. So i trusted them. after my radiation in August 2013, my skin started to blister and i was getting high fevers.Since I was scheduled for a routine blood test I went to have one on 9 Sept. I went to see my Med oncologist on the 15 Sep. That's when they found out my liver enzymes were elevated. They did a repeat again on the 16 Sept and they are still going up. So they ordered an ultrasound. They called me to say they found "something" but not to worry ,but i need to do a CT scan of my liver. i saw them on 22 Sept telling me i have a 8.6 cm mass on my liver..they need to do a liver biopsy. 29 Sept that is when they told me it did metastasize on my liver...We were shocked....My first words were... Is it terminal?... doctor said yes...i asked why...she said because most of the patient with liver involvement dies...so i ask how long will i live....she couldnt say...
    I was so Angry at them that i reminded them that I did asked them if they can do a scan just to make sure...but they didnot listen to me...All the time they say ...that is why we are doing all the treatments....BUT LOOK WHAT HAPPEN TO ME NOW..??? who knows that tumour on my liver might have been there before i even started chemo....
    My question is...how come the chemo wasnt able to cure it?.... my radiation oncologist theory was.. it might have been there before.... and she said that actually radiation does elevates the liver enzymes(LFT). so i thank radiation for doing that..otherwise i wont know that the cancer have spread already on my liver...
    There were no symptoms indicating that it affected my liver.... only the high fevers and chills i was getting evry now and then....
    With what happened to me...don't you think they should do a whole body scan for patients diagnosed with early breast cancer even though there are no lymph nodes involvement????
  • PamelamaryPamelamary Member Posts: 190
    edited March 2015

    Dear Lisa,

    I also have mets in the liver and the bones, and am currently living well almost 3 years after Stage IV diagnosis.

    I can understand your anger, confusion and pain. It is important to remember the situation is nobody's fault - shit happens! Also that this is not a death sentence, there are many treatment options available and many of us manage as if living with a chronic disease. There is no point beating yourself up about what has happened and acceptance will come.

    You are clearly Her2+ and there have been excellent clinical trial results from Kadcyla, which is a targetted therapy and so relatively easy to handle. 

    Best wishes for successful treatment..... Pam

  • Julia44Julia44 Member Posts: 361
    edited March 2015

    I totally agree with you that your medical team should offer a scan at the beginning of the journey if you would like one.  None of my medical team offered it but I ask for one and did it.  It cost me around $750.

    Doctors need to provide us with all the options/choices for us to decide between.

    Wishing you well!

    Julia

  • Tilly14Tilly14 Member Posts: 19
    edited March 2015

    Hi Lisa,

    I am in the same boat only I dont know yet where I'm at I had a a bone scan today and see the oncologist on Monday.....it has spread to the liver and I am so scared, but I am slowly feeling better reading the posts and support from others on here...I am just hoping that something works for me and its not the end............I thought 6 years on it was just a bad memory......but its now the begining again..... Ihave never said why me, cause this happens to so many and innocent children......but I do cry and say its not fair.....I just hope they keep finding treatments to help keep us alive...

  • Daina_BCNADaina_BCNA Administrator Posts: 883
    edited March 2015

    Hi Lisa,

    It looks like you have had a very warm welcome from some of the beautiful women who have been through what you are now.

    In case you don't have a copy - I wanted to let you know about the Hope & Hurdles pack which is a free resource especially  for women diagnosed with secondary breast cancer and it has some really useful information. You can either order it online (www.bcna.org.au/hope-hurdles-pack), or by phoning BCNA on 1800 500 258.

    Also, you might want to connect in with the private online group 'Living with secondary/advanced breast cancer' there are over 200 members who share their experience and offer support - know exactly what each other are going through.

    ~ Good luck and sending good vibes :-)

  • Daina_BCNADaina_BCNA Administrator Posts: 883
    edited March 2015

    Hi Lisa,

    It looks like you have had a very warm welcome from some of the beautiful women who have been through what you are now.

    In case you don't have a copy - I wanted to let you know about the Hope & Hurdles pack which is a free resource especially  for women diagnosed with secondary breast cancer and it has some really useful information. You can either order it online (www.bcna.org.au/hope-hurdles-pack), or by phoning BCNA on 1800 500 258.

    Also, you might want to connect in with the private online group 'Living with secondary/advanced breast cancer' there are over 200 members who share their experience and offer support - know exactly what each other are going through.

    ~ Good luck and sending good vibes :-)

  • lisa36718lisa36718 Member Posts: 9
    edited March 2015
    i know the grade on my breast cancer.its a grade 3 tumour and they said i have the aggressive type of breast cancer....
    thanks for your post. it boost my faith and hope... my auntie gave me this soursop leaves to try. its herbal drink..but i was talking to my counsellor today and she told me to better ask my doctor first before drinking it...

    i am hoping that kadcyla will work for me....
  • lisa36718lisa36718 Member Posts: 9
    edited March 2015
    Thank you for your post.I will visit the website and will speak to my medical team about the herbal meds.
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