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STAVE IV METASTATIC BREAST CANCER LONG SURVIVORS

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Comments

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited March 2017

    I am now categorized as an outlier. Original diagnosis was back in 2005. First progression in 2010 so I am almost 7 years out from that progression. First 5 years was easy. It is now getting a bit less so. I do believe that our cancers have a personality, and some simply respond well to treatment while others don't. I know that I am lucky. However, that luck will only take me so far.

    Your family is gorgeous! Fight with everything you have. You clearly have lots to live for. Well, we all do.

  • stagefree
    stagefree Member Posts: 360
    edited March 2017

    bum

  • LENAGREECE
    LENAGREECE Member Posts: 23
    edited March 2017

    hello sisters,

    Sorry I didn't reply earlier but I am in Vienna/Austria this week in a cancer medical center specialized in immunotherapy and I try very hard to make decision for my future treatment. I really learned things about cancer Treatments I had no idea. Now the point is how can I convince my MO that I refuse chemo and want an easier way of treatment. I have to meet doctors new labour tests and much research when I return. By the way there is in Vienna now a meeting of oncologists from all over the world and I will be in a meeting tomorrow. I will understand nothing possibly but the highlight of the symposium is the immunotherapy.

    I will let you know about everything.

    Believe me that your stories and your support gives me the strength to fight for my life with everything I have.

    Thank you

    PS My dear neighbor Ebru I could give everything for a cup of coffee in your beautiful Istanbul. I have great memories from there




  • gonegirl
    gonegirl Member Posts: 1,022
    edited March 2017

    I am 5.6 years out gate stage IV, Mets covering liver. Grateful to be alive.


    Susan

  • stagefree
    stagefree Member Posts: 360
    edited March 2017

    Hey Lena,

    I'll be moving to my summer house by the Aegean sea by early May, as the oxygen and mountain environment make huge difference in my condition. Always welcome!

    :)

    Hug

  • artistatheart
    artistatheart Member Posts: 1,437
    edited March 2017

    Welcome Lena! You will find a lot of wonderful advice and support here. I hope so much to travel to Greece someday soon. And Istanbul would be GLORIOUS as well! Nice to see you Ebru! I too find great strength and hope in reading about all the women who persevere on this sight. When I am feeling especially down I always find comfort in the comments and wise words here. I am thankful for every day that I can continue on and feel fairly well but will never get enough of this life I love!

  • jamie2007
    jamie2007 Member Posts: 1
    edited March 2017

    They say five years till I'm dead. I won't except that. I was diagnosed with stage 4. Just wondering how long everyone has been living with stage 4. Anyone past five years?

  • tina2
    tina2 Member Posts: 758
    edited March 2017

    Jamie,

    Lots of people! I'm cruising on six years. Look around this forum.

    Tina


  • dlb823
    dlb823 Member Posts: 2,701
    edited March 2017

    jamie, there are many women on BCO and posting in other groups who are well past 5 or more years! It depends somewhat on where and how extensive your mets are, as well as how well you respond to treatment. Any oncologist or medical team that gives you that kind of prognosis at the get-go, clearly does not have much faith in their own ability to help you become a long term survivor. RUN to different doctors! And don't believe the stats you might read on-line. There has never been a proper count of Stage IV women, plus most stats are sadly outdated and based on old treatment information. We have treatments this year -- in fact this week! -- that weren't available last week, no less 5 years ago. And who knows what will come along in the next 5 years?

    I don't know where you're located, but please consider getting a second opinion at an NCI-designated cancer center. They're the top notch medical facilities that see the most breast cancer patients, have the most specialized, experienced oncologists, and are either actually doing or are plugged into the most current research and treatment options. Here's a list of them: https://www.cancer.gov/research/nci-role/cancer-ce...

    Hugs, and I'm glad you've found us! Deanna

  • faith-840
    faith-840 Member Posts: 926
    edited March 2017

    There are many women on BCO who have been stage IV for more than five years Jamie. My doctor said I could live till I'm 90 and I was 75 when he said that. Never accept a diagnosis like that, only God knows when we will die. This looks like your first post and I'm sorry you find yourself here. You are probably in shock right now but things will look better when you have a treatment plan in place. It would help us to help you if you put your stats in your profile and made it public. It would also help you to find the thread that relates to your specific case such as bone, lung, liver, etc. Knowledge is power!

    There are so many women here who will help you get through these tough times, they have helped me and we will all help you too.

    Hugs, Faith (in the future)

  • JFL
    JFL Member Posts: 1,373
    edited March 2017

    Although I have met many Stage 4 women since original, early stage diagnosis over 10 years ago through the Young Survival Coalition and BCO, I have only met two at my cancer center, whom I met 10 years ago. Both were originally diagnosed with aggressive, Stage 3 in late 20s. One went from Stage 3 to Stage 4 very quickly (and developed brain mets pretty early on). The other didn't become Stage 4 until 10 years after original diagnosis, which started in her abdomen/peritoneal cavity. First one lived 15+ years with Stage 4 and the second has lived over 12 years and is still kicking. There is hope, even with aggressive cancer.

  • JeanneR
    JeanneR Member Posts: 38
    edited March 2017

    Thank you so much for giving me hope!!!!

  • artistatheart
    artistatheart Member Posts: 1,437
    edited March 2017

    Without hope there is nothing! There is SO much hope out there. Deanna is correct that research marches on and we just may well be recipients of the next new thing that keeps us going and going. Some days you have a right to be sad, scared, MAD! But then we move on and keep on living another joyful day.

  • bright55
    bright55 Member Posts: 146
    edited March 2017

    hi jeanne

    A cute koala pic ..some koalas near me...but we never see them

    Mets is a dark companion it is contastanty with us BUT we have to work very hard to let the sunshine side of life dominate.As others will tell you we live in an amazing time for medical research and we are very lucky to live in countries that for the most part support the supply of new drugs..i am very hopeful that ibrance will be made available in australia

    As we say ..be kind to yourself

    Big huggs Bright

  • kimt179
    kimt179 Member Posts: 13
    edited March 2017

    I am 43 old mother of 13 and 9 year old girls and former police officer who was recently diagnosed with stage IV Breast Cancer. In the last two month I had a mammogram with a biopsy performed same day, been to a surgeon, received my pathology reported saying I'm triple positive with undefined cells, and told I was stage 2 with high survival rate. Then called into to our local oncologist to be told that the routine body CT revealed I have mestasis disease in my lungs and liver and am Stage IV. My husband and I flew to Houston from Detroit for a second opinion at MD Anderson. All of that after a cleared mammogram in Aug of 2016.

    I was shocked by the diagnosis, I had mammograms starting at 30, 35, and every year after turning 40, due to family history. A couple spots were biopsied and marked in Jan 2015, as non-cancerous. In Aug 2016, those markers had faint shadowing, which was believed to be scar tissue, not cancer. Finally, they discovered 2.5 mm tumors near the markers in Feb 2017

    As I said I was shocked by the diagnosis, but even more shocked by one of the original statements an oncologist told my husband and I. She told us that on average, women with my factors will survive a year or two even with treatment. I then explained the following to her with a great sense of disapointment.

    I have had enough incredibly dangerous things happen to me over my 20 year career as a Police Officer, that I don't scare easily. In the last five years, in addition to a shoot out with suspect who shot a fellow Officer right in front of me, I had my knee severly bitten by a pit bull while chasing an armed robbery suspect into a backyard, I have injured my sciatic nerve taking a suspect into custody who outweighed me by 100 pounds.

    Even worse, I had to also overcome a horrific scout car accident that ended my career with a traumatic brain injury broken right hip socket, pelvic cradle breaks, and broken foot. I was told I would never walk without pain again, if at all.

    I was in a wheelchair for 6 months, couldn't do conventional physical therapy because I couldn't stand or put weight on either leg for five months after my reconstructive surgery. I sought out and completed five months of aquatic therapy to keep moving without weight bearing in a pool. Then I had 6 more months of physical therapy 5 days a week to learn to walk again. Completed 2 years of cognitive therapy for my brain injury because of short term memory issues, emotional libality, and vertigo. Tell me what can help me and I commit 100% and never give up. I'm also the most positive optimistic person you'll ever meet with a strong faith.

    I told her that if I were an anxious person with any type of negativity and despair, I may take 1 to 2 year average and give up.

    I then asked her what the record for the longest survival with my factor would be because I intend to surpass it. I would not take average when I have spent my entire life exceeding expectations. There was no answer. She told me that she felt compelled to let me know the average survival rate.

    When she left the room, the nurse practitioner told me that they have a patient with my similar factors who is still being treated after 10 years of her diagnosis. Thank goodness for those who are willing to give you hope. I was very pleased to find this site and see the support. I begin my treatment plan tomorrow and intend to live with cancer.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited March 2017

    Jimmy Christmas KimT, is anyone has the perseverance, determination and audacity to prevail you sure do! You have been through the ringer already and came out swinging. Welcome to our fine little club here. You will fit in very nicely!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2017

    (I moved my comment to Kim's thread. But I asked her when she will see her NEW ONCOLOGIST.)

  • jackboo09
    jackboo09 Member Posts: 780
    edited March 2017

    Hi

    I am newly dx and ER and Her2 positive. I was told ( didn't ask) that the average was 6 years but have since read of plenty of women who have reached that and beyond.

    I would seriously question the 1-2 years comment because the truth is that no doctor can accurately predict how any of us will respond.

    It is incredibly hard and if you look back on my recent posts you will see how I have struggled with this news in the past month. However I do know that I owe my sanity to the women on this board and that aiming everyday for positive thoughts will help you face treatment. It sounds like you already have an inner strength and I wouldn't let that doctor strip it away. My doc told me of a patient who has just retired and is now on Herceptin only,

    Much love and support

    Liz

  • Delvzy
    Delvzy Member Posts: 454
    edited March 2017

    Kim I am a newbie to stage Iv so I know the shock of the diagnosis and coming to terms with a new life. I am on meds and take painkillers twice a day and have gone from full time work to part time but apart from that life is relatively normal.

    Bright55 I am also here in Aust take Letrozole (been told the brand Femara has less fillers and side effects not sure if it is available here ) I missed out on a trial at Peter Mac in Melb for ibrance but am doing very well on Letrozole and have gone to stable Healing normal tumour markers . The downside of Letrozole is feeling like a 90 year old in the morning

  • bright55
    bright55 Member Posts: 146
    edited March 2017

    Hi Delvzy

    Seems we both started out with dcis and no lymph node involvement ..so a real bummer to turn into mets. Mine was after 41/2 years . I was diagonised june 16 ,am plodding along .very fit at moment on leterozole have tried all brands but will stick to femara. Only side effects are prickly heat and late afternoon leg stiffness if i have been sitting too long. Have had no chemo or radiation so not alot to communicate with asssisting others on these therapies..there seems to be alot of info for this on the aust bcna noticeboard.

    All the best with treatment

    Cheers Bright


  • daywalker
    daywalker Member Posts: 77
    edited April 2017
    Hi Kim, I am a South African, and was also diagnosed in the last two months, and my pattern of diagnoses mirrored yours..initially stage 2 then no stage 4 with some spots on the liver. I get that shock, the emotions, urgh the whole bag...but my onc looked at me, and said that with herceptin and chemo I have at least an 80 percent chance of surviving 5 years, and if I can handle herceptin, ten years is very possible. He told me to take control, and to ignore the stats. And my doctor is one of the best in my country. So no, your doctor is wrong. Just to encourage you..
  • artistatheart
    artistatheart Member Posts: 1,437
    edited April 2017

    Right on Daywalker. No one knows when any of us will succumb to anything.......

  • Suja
    Suja Member Posts: 1
    edited April 2017

    Hi Jacque1102,

    My Aunt 55years old, has been detected with Stage IV bc with two small lesions in liver and one in bone.She is ER/PR neg and Hers2 Positive. I would like to know what treatment were you on and does chemo help to reduce liver mets?

    Thanks,

    Suja

  • moderators
    moderators Posts: 8,633
    edited April 2017

    Dear Suja,

    You also may want to send Jacque1102 a private message. That might be an easier way to communicate with a particular member who has posted on the boards. Let us know if you need help navigating here. The Mods

  • moderators
    moderators Posts: 8,633
    edited May 2017

    Sharing some of our members stories here on living with Stage IV Breast Cancer

    Member's Metastatic Breast Cancer Stories

    Thanks to all our special members for sharing a piece of their lives with us

    Heart

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