Scared about everything

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lisajo6
lisajo6 Member Posts: 261

So I have bone mets, and some suspicious lymph nodes. I feel fine and have no pain. On another site I talk back and forth with a lady and I asked her when I was supposed to start feeling sick, progression ect. She replied, "It is going to kill you anyway, so just enjoy your time." I suppose that is true, but I though people were living longer, better quality lives. My tumor markers keep rising and falsodex did not work for me. I am now on femara. I have no idea if it is working or not.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited April 2016

    Lisa, someone will come along with more information.

    But, the way I understand it, ladies can & do live a long time with bone mets. Have they offered to radiate them?

    I was just dx with innumerable liver mets. Arrrggg. I was hoping, when this happened, and I knew it would, I would have bone mets. There are ladies here that have had super quality of life with bone mets. Some are not as lucky and need surgery on hips, pelvis or spine..

    Sorry your friend made that negative, downer statement. She was wrong to blurt that out. Last thing any of us need is another reminder of the seriousness of our situation.

  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited April 2016

    I don't have bone mets, but I do have liver mets. I have a wonderful quality of life and am expected to live a long time. I work full time, go to college full time (I graduate next year), and devote my time to family and church.

    What I'm trying to say is not to let anyone talk you down or depress you. This is a struggle, but it's what you make of it that counts. I am a firm believer that your attitude affects a lot of what goes on! People may think I'm blowing smoke, but it's just how I feel. Life is beautiful. Don't be afraid to live it!!

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

    Lisa, here's the thing: DON'T sit around waiting to feel sick. You are missing out on life if you do that. I know what it feels like to be scared of everything. I was that way, too, the first six or seven months. Then I got on a good antianxiety medicine. It took away the edge of fear that was paralyzing me. You should seek medical attention for anxiety if you feel fear is hindering your daily life.

    I am now dealing wth bone metastasizes for 5+ years. I go a bit slower and have learned to pace myself yet I definitely still have very good quality of life. I've experienced some of the best times of my life since the stage iv diagnosis, not because of it but in spite of it. Many of us look at this as living with breast cancer, not dying from it. I will deal with feeling sick and any downward turns when they come. Until then, I move forward dealing with what's happening with me today and try not to overthink about the far off future.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited April 2016

    Lisa, these ladies have given you great advice. I don't have much to add, but for me, I concentrate on the fact that at this time I am doing well and can still do everything I could do before my mets diagnossis.

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

    Lisa, I third those emotions. Don't let negative comments become your truth. One day at time and live each day to the fullest you can. Don't go looking for feeling sick. Appreciate every day of feeling well and expect to feel the same everyday until you don't. Worry and stress only make you feel crappy and unhappy. Lots of treatments and hope out there!

  • car2tenn
    car2tenn Member Posts: 515
    edited April 2016

    And hello 2.5 years after diagnosis of stage four from the beginning. There have been many many blessings amongst the fear, testing, radiation and chemo. The sooner you orient yourself to a new position in life the better off you will be. No one can predict your timeline of illness but you can take a strong stand and improve your trajectory. My motto is that you play the hand you are dealt. God bless all of us with this disease. Carolyn from Music City

  • lisajo6
    lisajo6 Member Posts: 261
    edited April 2016

    Thank you ladies for all your kind words and advice. I am so new to this (July) and I have never felt a pain or felt any different than I did five years ago. And I suppose I have a lot anger that I was first diagnosed in 1998, and I went years without any problems.

    I see my radiologist today. Then I see my oncologist in two weeks with blood work. He likes to use tumor markers. Ugh. I cannot wrap my head around this will eventually go to my organs and take my life. I have nightmares. I did up my antidepression meds and I have felt a bit better. But the reality of mets.....

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

    Lisa,

    We will be with you in spirit when you meet with you radiologist today and with your onc in two weeks. My onc also uses tumor markers. They are accurate indicators for some people and not for others, as I am sure you know. My onc thinks that the way I feel is also a good indicator of how things are going. Many things need to be considered.

    Try not to dwell on what will happen some day. Today you have breast cancer with bone mets. Period. Live your life and enjoyliving it.

    I was just diagnosed last June. I also have mets only to bones, and I also feel great. My goal is to live twenty years. Unrealistic? Who knows? Answer: no one. My onc and bs both support me in my plan, and that is important. Maybe five years from now I will change my goal to 30 years. By then there will probably be an entirely new class of treatments being developed.

    Let us know how you are doing.

    Lynne

  • pajim
    pajim Member Posts: 2,785
    edited April 2016

    Lisajo, yes it's true that some women have a lot of pain with bone mets. But there are many (me! me!) who have no pain, and live our lives as if this wasn't happening.

    Just thank your stars that you feel good and go out and live your life. Don't borrow trouble. Every time I have a scan and it shows that the cancer is growing a little bit, my onc says "but you feel well, don't you?" I say yes, and we wave goodbye without making any changes.

    You feel well. You are well. Or at least act that way. The future could be many years in the future.

  • lisajo6
    lisajo6 Member Posts: 261
    edited February 2017

    Hi ladies,

    So I have been on weekly taxol since mid June. I have bone mets and two lymph nodes. As of November my pet scan showed no bone mets, but the two nodes. My markers went down then went up. I get a pet scan next Tuesday. I am so worried it has progressed. I try to be positive and look at it as chronic-but I know the truth. I am so sad.


    Lisa S

  • artistatheart
    artistatheart Member Posts: 2,176
    edited February 2017

    lisajo, the ups and downs and uncetainty of this disease are the hardest part. It always helps me so much to go back and read about other women who have faced progression time and again and manage to spring back and keep on ticking! I don't think anyone can say anything to take away that fear. We all have it hovering like a big black cloud. After awhile it becomes like the annoying acquintance that won't go away so you just let them hover and sometimes you snap at them!

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2017

    lisajo, try to stay busy until you go for your pet scan. And do things that you really want to be doing. Try something new, try a new restaurant, or take a drive to somewhere new, go to a movie, to get your mind off the scan. Try to keep yourself entertained , find that which keeps your mind occupied on other things. Sure, it is always in the back of your mind, but you need to practice some tlc on yourself. Take it as easy as you can. Take deep breaths. Get out for a walk in nature. I understand your fear. It is okay to feel like that. Keep taking deep breaths.


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