NED 10 years; liver mets

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Trixie50
Trixie50 Member Posts: 1
edited October 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hi Ladies

Haven't been on here in years, but I knew I needed to, because when I was dx with liver mets, I needed a long term survivor to say, "we're out here and doing ok" I was dx with mets right out of the box; you could have knocked me over with a feather. No history of any cancer in my family and I didn't even know I was stage 4 until a second opinion doc told me I wouldn't live to see 50. My regular Onc told me the liver "was a long term problem". I had no idea what stage 4 even meant. In retrospect, it was the right thing for me to hear, at the time. The second doc told me to go get my affairs in order; I was 44 years old. Despite a full response to chemo and all the tumors clearing up, what that 2nd Onc said has haunted me ever since. I'm now 55. But I want you all to know that there are long term liver mets ladies out here. I used to be on these boards constantly, searching, begging for long term survivors. I was desperate, as I know some of you feel. I have no idea why I had such a great response; I've only been on Tamoxifen and Arimidex. I had some Herceptin, but my Onc didn't like my Muga scans, so he pulled me off of it. I almost croaked, thinking that's what was keeping the cancer at bay. He said no one knows what's keeping it at bay. And he was right. I did have a heart "event" in July 2014, which they're blaming on the Adriamycin; I'm now the proud owner of 4 stents. But thankfully I listened to my body and got to the hospital when something felt wonky. Please promise me you'll do the same.

I asked God to please help me live to see my 12 yr old grow to be an adult; I don't know what God's plan is, but I figured I'd ask. That young man is now in grad school. He still doesn't know I'm stage 4; I'm planning on telling him when the time is right, but I don't know when that is yet. My husband is leaving that up to me. My son and I are very close and I'd rather he get thru school before he freaks out, as he's going to med school. :)

So I wanted to let you all know, this week when I'm 10 years out from my first clean scan, that there is hope. Lots of it. Some doctors will try to pack us away and stick us in a statistical bucket. My Onc once told me that doctors only have surgery, drugs, education and statistics. That's it. And they can be wrong.

I haven't been here because my psychologist asked me to get off this site because I was on it so much......and women died. They did. So I'm not on much for my own psyche, but I know like me, 10 years ago, there are ladies looking for hope. So here's yours for today and I pray many years to come.

Bless all of you.

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Comments

  • LindaE54
    LindaE54 Member Posts: 2,054
    edited September 2016

    Trixie - What a thoughtful and wonderful post! I am so happy for you!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited September 2016

    Trixie, thanksfor sharing your story of hope and perseverance.

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  • mara51506
    mara51506 Member Posts: 5,088
    edited September 2016

    Wonderful post. You are right. When you are first dx, we do need to hear from longterm people. Hope is so desperately needed and stories like yours help so much. I hope someday I can be a long term survivor.

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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2016

    Awesome post and congratulations. Thank you very much for sharing your story in hopes that it will give hope to others. I hope you continue to do as well as you are.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Trixie-

    Thank you so much for returning and sharing your inspiring story! We love to hear stories of hope. Wishing you continued good health!

    The Mods

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  • Beverly11
    Beverly11 Member Posts: 443
    edited September 2016

    Thank you for posting your story Trixie. I was dx with stage 3 in Dec/08 and dx in April/2016 with liver mets. I too felt like I was given no hope from the medical society. I was even told to accept my reality and get a wheel chair. I have had a good response with Xoleda but some days thoughts that I don't want in my head are there.

    You will never know how many women and families you have helped by posting. I related to your post on so many levels.

    God Bless,

    Bev

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited September 2016

    Welcome back, Trixie and thanks for the inspiration! 10 years NED, woohooo!!

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  • reflect
    reflect Member Posts: 576
    edited September 2016

    Thanks Trixie, it's so helpful to hear your story. I have a 15 yo I am hoping to see grow up.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2016

    Heartening message, Trixie! Thank you for your thoughtful, inspiring post.

    Tina

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited September 2016

    Trixie, Thank you so much for your post. It has brought both hope and joy to me. You have not underestimated the value of informing people like me about your successful treatments. I hope you remain NED for many more years. Continue to enjoy living your life.

    Hugs from,Lynne

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited September 2016

    Wonderful! Congrats Trixie!

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited September 2016

    Trixie, thank you for coming back to share your inspirational story with us. I am sure a great many of us appreciate it. I am 5 years out, stage 4. My son just started college. Looking forward to seeing him in grad school, as well.

    Stefanie

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited September 2016

    Wonderful news to hold on to!!!! I'm nearing 4 years, stage 4...7+ altogether. As a stage 2 gal, I stayed away from the stage 4 board (which was posted clearly...and I learned why!). This can be a daunting place, but a place where we learn & share & grieve & celebrate. When I logged on the first time...it was Denny who gave me hope, as she was celebrating 10 years with liver mets! You are certainly giving hope to many...and in turn, receiving hope for even more years!!!

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited September 2016

    Thank you for sharing. Congratulations on 10 years NED!

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  • DeeDee45
    DeeDee45 Member Posts: 30
    edited September 2016

    Trixie, You don't know how much I needed to read a post like yours today.  I found out Aug 5th I have liver mets after being stage IIb for two years.  It has been so hard to wrap my head around this diagnosis and today was my lowest point yet. I give thanks to God for your post, it was what I needed, thank you, you have definitely given me hope.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited September 2016

    Trixie50, it was so thoughtful of you to share your encouraging story with us. It will go a long way in reassuring those in need!

    May you enjoy many happy decades to come!

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  • zarovka
    zarovka Member Posts: 3,607
    edited September 2016

    Thank you trixie!. I was diagnosed with mets to the liver and bone in January. Planning to be here in 10 years, just like you.

    >Z<

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2016

    Thanks Trixie for giving us hope. It's so needed by all of us. I was originally dx 8/2012 at stage 3 and was dx stage 4 in January 2015. Im hoping to be stage 4 for a good 10 years!!!!

    Bab

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited October 2016

    Yes, thank you Trixie! We all need to know that long term survival can and does happen. I know what you mean about having to limit your time spent reading about and talking about cancer as sometimes I let myself get too engrossed at the detriment of other things I can be doing. On the other hand the ladies (and a few gents!) here have been so uplifting and encouraging for me I cannot imagine not having this site to come to for comfort, inspiration and knowledge. Thank you and long may you run!

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  • KSkier
    KSkier Member Posts: 467
    edited October 2016

    Thank you. How right you are.

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  • HopeFaithCourage
    HopeFaithCourage Member Posts: 156
    edited October 2016

    Thank you

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  • intothewoods
    intothewoods Member Posts: 449
    edited October 2016

    Thank you for this wonderful post, Trixie. Having just had progression to liver it's a welcome boost of hope.

    Lisa

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  • Mab60
    Mab60 Member Posts: 487
    edited October 2016

    Trixie, thank you so much for popping in with this post!!!!!

    Mary Anne

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  • sharethehope
    sharethehope Member Posts: 115
    edited November 2016

    are you er/pr pos or neg? what is your her status?


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  • Lauriesh
    Lauriesh Member Posts: 692
    edited November 2016

    in case Trixie doesn't come back on to answer your question, you can tell that she is triple positive. She mentions she was on herceptin, which is used for her2+, and she says she was/ is on tamoxifen and arimidex, which

    is used for er/ pr +

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Trixie - thankyou thankyou thankyou - your post has really made my day. I was dx last week with mets to my liver. These being (surprisingly as I was originally TN) strongly ER+, I had been prescribed hormonal treatment, Arimidex. I was feeling a bit deflated expecting a full warship to be unleashed for me.

    I have a sophomore at college and senior at HS and wish to be here for them as long as I can.

    I wish you continued health and happiness.

    Sarah

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited November 2016

    Trixie

    Thanks for your post and big congratulations! My status is similar. I was stage IV out of the gate too. I was 41 and had an 8 year old and 12 year old. I have been on Herceptin continuously now for 8 1/2 years and want so much to stop taking it. I have been NED over 8 of these years with an immediate complete response. I had liver and bone mets. I also did some years of Tamoxifen and Arimidex as I was slightly ER+. My first oncologist told me also that he would treat me for quality of life and I had about and 8-12% chance of living 5 years. That just knocks you straight down. LIke you it has always haunted me. My second onc (and current) told me I will live a very long time. I didn't tell my girls about my stage IV until last year and only because I have been getting more involved in the movement for more research for Stage IV and didn't want them to find it out online somewhere. Like you, I didn't want them to worry needlessly all these years. it is true that sometimes ignorance is bliss.

    Wishing you 10 more years of NED and to many more like you.

    Jen

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited November 2016

    Trixie, great to see how well you are doing.  I just popped in recently to let people know I am 10 years out with mets and just had another clean scan.  I do believe God is the only one that knows what is store for us but I do pray for more and more success with cancer all the time.  Keep on getting those NED's and I will check on you when I check in.

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  • ardyrankin
    ardyrankin Member Posts: 6
    edited December 2016

    20 years ago, I was diagnosed with left breast cancer and had a left mastectomy, chemo and radiation.

    3 years ago they found metastatic breast cancer in my liver. The CT scan shower innumerable lesions, the

    largest one was 18mm. I've been taking Letrozole for 3 years.

    Today I got my CT scan results - no evidence of metastatic disease.

    I was shocked! My last CT done 6 months ago just showed that the lesions were not growing or multiplying.

    Has this ever happened to anyone else?

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  • MelZ
    MelZ Member Posts: 9
    edited October 2017

    I hope this tread isn't too old to post on... diagnosed today with liver mets and happy to hear the stories on here. I am 41 with 2 girls who are my world, ages 4 and 6. I hope everyone on here is doing well! I am so terrified.

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