prognosis

Living with Metastasis: The Emotional Toll of Breast Cancer (Stage 4) as a Chronic Illness

Laurie Kingston Health Guide June 30, 2008
  •   I have Stage 4 breast cancer. However, I am also in clinical remission, with no sign of cancer in my liver (which was once riddled with tumours).   What does this mean?   We can assume that there are still cancer cells in my body and that, eventually, we will find new tumors. Un...

20 Comments
  • Phyllis Johnson
    Health Guide
    Jul. 01, 2008

    My own cancer was Stage IIIB, so I can't speak from personal experience about the challenges of living with long-term chemo, but the list of suggestions you have received is great.  I did find living with a long treatment and very slow recovery that finding a moment of joy every day was important, and is addressed in several of the suggestions you received....

    RHMLucky777

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    My own cancer was Stage IIIB, so I can't speak from personal experience about the challenges of living with long-term chemo, but the list of suggestions you have received is great.  I did find living with a long treatment and very slow recovery that finding a moment of joy every day was important, and is addressed in several of the suggestions you received.  Deliberately taking time to listen to a beautiful song, to sit in the sun for a few minutes, or to enjoy an ice cream cone can be wonderfully restorative, but it's easy to get bogged down when you are tired and there is too much that you think you should do.  I'm glad you have no evidence of disease (NED) at this point and hope you continue that way for a long time.  In the ten years since my diagnosis, I've seen more and more Stage IV patients live for years NED.

    • Laurie Kingston
      Health Guide
      Jul. 01, 2008

      Thanks so much! Especially for that last sentence. I hope to be one of those women who live NED for a long, long time.

  • Anonymous
    Jan
    May. 23, 2013
    After being diagnosed with Breast Cancer in 2006, I have been lucky enough to survive it's spread to bone and marrow in 2011. A few weeks ago I learned the Breast Cancer has moved to my liver. This is a game changer for me as the liver is a "vital organ" and as such, is more threatening to my life expectancy. Where I have always delighted in " beating the odds",...
    RHMLucky777
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    After being diagnosed with Breast Cancer in 2006, I have been lucky enough to survive it's spread to bone and marrow in 2011. A few weeks ago I learned the Breast Cancer has moved to my liver. This is a game changer for me as the liver is a "vital organ" and as such, is more threatening to my life expectancy. Where I have always delighted in " beating the odds", this news has shaken my spirit and I determined to find my way back to "thriving", not "surviving". I am not afraid of dying because I have a deep faith in God, His promises and the relief of knowing I don't have the burden of dealing with by by myself. I mean, who could dread Heaven? No, the part of living with Stage 4 cancer is multi-fold: unexpected symptoms and more bad news, every little dinky Che and pain has to be reportd to my oncologist to determine if I have, for example gas, or if it is life threatening. Constant med changes, constipation or diarrheal, no hair, edema or dehydration - you get the picture. I waffle between feeling blessed and grateful to wanting to pinch someone' head off. The one thing that helps me each and every day to feel like a whole person not totally defined by cancer is a group of friends from high school and college who reconnected through social media about 5 years ago,. And an adorable llasa Apsa Poodle mix named Gabby. My friends fill my life with great memories, good talk and gossip, fashion needs, girlie getaways and then the days of just being there when I can't get out of bed. They inspire me to be a "thriver". So far I haven't needed an antidepressant, These wonderful friends/support provide the boosts I need on a semi regular basis. I am not sure how I found my way to this page and invitation to share my thoughts, but I really needed it! Would like to be a contributor, if possible. I would like to add it as a support tool fr myself and others who may feel like me!
    • Phyllis Johnson
      Health Guide
      May. 23, 2013

      Jan, what a blessing your faith and your group of friends has been for you.  Thank you for sharing how they are helping you cope with the liver metastasis.  We are glad that writing about this has been helpful for you.  You can add to any thread here at HealthCentral Breast Cancer.  You can also write a stand alone sharepost.  Just...

      RHMLucky777

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      Jan, what a blessing your faith and your group of friends has been for you.  Thank you for sharing how they are helping you cope with the liver metastasis.  We are glad that writing about this has been helpful for you.  You can add to any thread here at HealthCentral Breast Cancer.  You can also write a stand alone sharepost.  Just click on Share Your Thoughts and write about whatever aspect of breast cancer is on your mind.  

      One huge difference for Stage IV survivors is that treatment doesn't have a predictable end point like it does for people diagnosed at earlier stages.  So the phrase "a marathon, not a sprint" really does apply to you.  I wish you success in beating back those liver and bone mets.

    • PJ Hamel
      Health Guide
      May. 23, 2013

      Jan, I'm so, so sorry you're going through this - and you have my utmost respect for the wonderful strength you're showing. It's true, friends and family are critical when you're dealing with stage 4, and you simply can't predict form one day to the next what's going to happen. Hang in there; enjoy life as much as you can. And please, we'd love you to post...

      RHMLucky777

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      Jan, I'm so, so sorry you're going through this - and you have my utmost respect for the wonderful strength you're showing. It's true, friends and family are critical when you're dealing with stage 4, and you simply can't predict form one day to the next what's going to happen. Hang in there; enjoy life as much as you can. And please, we'd love you to post your thoughts here whenever you can. It helps other women SO much to hear from someone who's "been there," who's going through what they themself might be going through. I wish you all the best - PJH

  • diana
    Jan. 22, 2011

    I was diagnosed two months ago with breast cancer stage 4.  As u can imagine, i was shocked.  However, i am taking the bull by the horns and taking advantage of all the good things in life such as faith, family and friends.  In addition to treatments, keeping my mind strong requires more than what the medical professionals can offer.  I...

    RHMLucky777

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    I was diagnosed two months ago with breast cancer stage 4.  As u can imagine, i was shocked.  However, i am taking the bull by the horns and taking advantage of all the good things in life such as faith, family and friends.  In addition to treatments, keeping my mind strong requires more than what the medical professionals can offer.  I have a prescription for laughing with friends, praying to God and being thankful, and doing as much as possible with my family.  

    • PJ Hamel
      Health Guide
      Jan. 22, 2011

      Diana, I'm so sorry you''re having to face stage 4; but it sounds like you're bringing a really positive attitude to the challenge. May the love of family, friends, and faith buoy you up; and if you ever need a place to ask questions, or vent, or anything at all... we're here for you. PJH

    • Phyllis Johnson
      Health Guide
      Jan. 23, 2011

      Your good outlook on life will make however much time you have left meaningful.  You might find this article about a long-term Stage IV survivor inspiring.  While her story is not typical, it does demonstrate that no one can ever tell you how long you will survive.

  • Ana
    Ana
    Jun. 21, 2010

    I have the same as you.  I have no friends and no family.  I am physically alone, but I have a family waiting for me when it it my time.  I am not afraid.  I am not lonely, sad, or any of the other stuff.  I am blessed with so much.  For example, I have not had any side effects.  None.  Well, just one, I lost my hair. ...

    RHMLucky777

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    I have the same as you.  I have no friends and no family.  I am physically alone, but I have a family waiting for me when it it my time.  I am not afraid.  I am not lonely, sad, or any of the other stuff.  I am blessed with so much.  For example, I have not had any side effects.  None.  Well, just one, I lost my hair.  Other than that I feel great and live my life as I was before the Chemo.  Have not had surgery, other than to put a port in.  That well well, too.  For me, just keeping my faith alive is all I need.  What will be, will be, no matter what we do, say, or wish for.  God Bless You.  You will be in my prayers forever.  Ana

  • Anonymous
    E Lancaster
    Nov. 19, 2009

    It is an emotional ride, hard on my husband, he drives me crazy, I'm in a weekly

    treatment its been three years in January. As my body has rejected so

    many of the drugs. I say a Hail Mary every night for him and my son so may-be

    they will survive. And keep on fighting this.

  • nikole
    Nov. 09, 2009

    Your post has brought a little bit of hope to my situation. My sister has been dignosed with stage 4 breast cancer and by the time it was found the cancer was already at the bones. my sister is in so much pain and can not walk any longer. We are being told that the chemo is not working and that we have maybe a year left with her. What can...

    RHMLucky777

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    Your post has brought a little bit of hope to my situation. My sister has been dignosed with stage 4 breast cancer and by the time it was found the cancer was already at the bones. my sister is in so much pain and can not walk any longer. We are being told that the chemo is not working and that we have maybe a year left with her. What can I do?? Any suggestions will be so helpful. I have no idea what she is going through and since you have walked in those shoes any information would be appreciated.

     

    Thank you and god bless you 

    Nikole

  • Anonymous
    Jill Aldrich
    Jul. 01, 2008

    Hey there,

     

    This post is so well-written and so full of good information that it could be published. You really opened my eyes to what it's like to live with metastatic disease and how you've found ways to cope. I'm beyond impressed. Would you cross-post this to Mothers with Cancer?

     

    xo

  • PamelaLy
    Jul. 01, 2008

    I sometimes wonder if I live in my own private world.  I try to stay "normal", but some words/things make life harder.  I am 50...my girlfriends in the 50-60's and a lot of talk is around retirement in the next 5-10 years.  I hate to think that far ahead and instead think of what may not be.

    Reading a book which includes death etc can start...

    RHMLucky777

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    I sometimes wonder if I live in my own private world.  I try to stay "normal", but some words/things make life harder.  I am 50...my girlfriends in the 50-60's and a lot of talk is around retirement in the next 5-10 years.  I hate to think that far ahead and instead think of what may not be.

    Reading a book which includes death etc can start me crying.....how do you talk to people about this when I am trying to show the world a mostly smiley face?  The tears and fears come later...alone.

    I too had to quit a very high level job that involved much time in the community, politics and the business world.  I love my home, friends, family, flower gardens, but I left work 7 years before I wanted to and sometimes I feel very resentful that I lost that piece of my life.  In many ways it defined who I am.

    Sooo...back to my original piece....sometimes I live in a private world that others can not understand, or you get the "how lucky you don't have to work." etc.  It is very good to hear from another that this is a very difficult stage of diease ....the unknown is very scary and you become someone else during this part of the "journey."

    Please keep sending posts all my Stage IV friends

    • Laurie Kingston
      Health Guide
      Jul. 01, 2008

      I know what you mean about feeling like you live in your own private world. I was first diagnosed when I was 38 and had only returned to work for three weeks when I found out I was Stage 4. I am now 40 - and although there is much hope and joy in my life there are hard times, too. It needs to be OK to say that we are sad - and I love the internet for connecting...

      RHMLucky777

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      I know what you mean about feeling like you live in your own private world. I was first diagnosed when I was 38 and had only returned to work for three weeks when I found out I was Stage 4. I am now 40 - and although there is much hope and joy in my life there are hard times, too. It needs to be OK to say that we are sad - and I love the internet for connecting me with other women who know exactly what I am going through.

      Take good care (and be good to yourself).

       

    • Sharon Ganes
      May. 12, 2010

      Hey Laurie,

       

      I was diagnoised in July 2006.  I was 49.  It took me a long time to realize what that ment.  I have been treated ever since.  Some drugs have worked and some haven't but the combo I'm on now is working.  I'm Her2+ so am on Herceptin and Xeloda.  It has been very effective.  I am cancer free at the moment...

      RHMLucky777

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      Hey Laurie,

       

      I was diagnoised in July 2006.  I was 49.  It took me a long time to realize what that ment.  I have been treated ever since.  Some drugs have worked and some haven't but the combo I'm on now is working.  I'm Her2+ so am on Herceptin and Xeloda.  It has been very effective.  I am cancer free at the moment but am doing 3 more rounds of treatments and then will take a break.  I had a break from April 2008 'till Aug 2009 and had NED but then it came back.  It was nice to have a break though.  I will take another break now at least for the summer. My oncologist will let me have a break but always says we know it will come back. Have you ever been offered a break? I find it helps to not have to deal with treatments all the time.  I still had to have CT scans every 3 months but that was better than constant treatments every 3 weeks.  It is hard to get it out of your head though and live like I used to.  You had some very good ideas in your little post.  I printed them to share with my oncologist.  It seems like he never talks about long term treatment. He doesn't seem to get the emotional stuff so well either. I don't think that Herceptin has been around long enough to know the long term outcomes with it.  I tell my chemo nurses that if I have to live with this so be it at least I'm here.  I have been able to be at both of my kids weddings and now have an almost 1 year old granddaughter.  Can't beat those blessings.  I try to always remember even the small blessings every day and that helps.  I have been able to work through all this.  I get tired some and feel off some but really through it all have remained well.  I have all my treatments on Friday so that I have the weekend to recover. Anyhow, just thiught I'd give you some background and let you know there are others that are doing this too.  Getting it out of my head is the hardest part.  It can lessen the joy of many things 'cuz it is always in the back of your mind.  Thoughts like if I'm still here I'll do ..... whatever the occasion is.  I belong to a support group and that helps.  Anyhow, thanks for your encouraging post.  May God bless you with many more years of NED and give you the strength to do what you have to do.

      Sharon Ganes

    • PJ Hamel
      Health Guide
      May. 12, 2010

      Sharon, since Laurie's post was 2 years ago, it's probably unlikely she's looking here. Best bet would be to click on her name, and send her a private message if you like, OK? Best of luck to you as you continue your journey - PJH

    • Sharon Ganes
      May. 12, 2010

      Thanks!

    • Laurie Kingston
      Health Guide
      May. 13, 2010

      Thanks so much for taking the time to add your thoughts and your experiences. I am hungry for stories of women who understand.

      My oncologist is opposed to me taking a break for more than a month but I am hoping, in the next couple of years, to change his mind. I am feeling worn down but you're right - it's a wonderful thing to be here.

      Sometimes, I need to...

      RHMLucky777

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      Thanks so much for taking the time to add your thoughts and your experiences. I am hungry for stories of women who understand.

      My oncologist is opposed to me taking a break for more than a month but I am hoping, in the next couple of years, to change his mind. I am feeling worn down but you're right - it's a wonderful thing to be here.

      Sometimes, I need to be reminded of that. :-)

       

      I am so glad that my post was helpful to you. It means a lot when my words resonate with others - that telling my story is helpful to others.

       

      I was very happy to hear from you, Sharon. I wish you continued remission and much happiness. Please stay in touch.

       

      Laurie

    • Sharon Ganes
      May. 13, 2010

      Hi Laurie,

       

      It is good to talk with someone who understands.  I really appreciated

       

       having a break.  The chemo pill I take is really hard on my feet and hands.  Walking is very hard sometimes.  As long as I'm careful and apply lots of salve and don't walk too much I do OK.  I think the break mentally even more than...

      RHMLucky777

      Read More

      Hi Laurie,

       

      It is good to talk with someone who understands.  I really appreciated

       

       having a break.  The chemo pill I take is really hard on my feet and hands.  Walking is very hard sometimes.  As long as I'm careful and apply lots of salve and don't walk too much I do OK.  I think the break mentally even more than pyhisacally is helpful.  Hopefully your oncologist will go along with a longer break.  Mine watches me carefully with CT scans. 

       

      We do need to enjoy each day even if it isn't easy. I don't always do so well at that but I try.  Hope you can do that.  Having treatments for so long is hard.  When I had a break before I had just gotten to the end of my rope and really needed to not do more treatments, appointments etc.  It was good.

       

      Good luck to you with all this.  May God give you the patince and strength to go on.  Take care and we'll be in touch

       

      Sharon