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Metastasis to bones, so scared.

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lam
lam Member Posts: 77

Hi, It's been a while since I was on BC.org, like many I thought that after 5 years I was done.  However I now know I have bone mets (hip, pelvis & spine).  I have been reading as much as I can so that I can make informed decisions about my treatment.  However I am still in full blown panic mode.  Reading through a mountain of info has left me feeling very discouraged and more afraid than I ever was going through the initial breast cancer diagnosis.  I just read an article that stated that the survival rates after a bone met. diagnosis was between 24-36 months.  I have not yet had the opportunity to ask my oncologist about this but would love to hear from any of you who have more encouraging info on this.  Thank you and blessings to all who read this.

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Comments

  • Stormynyte
    Stormynyte Member Posts: 179
    edited April 2012
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    So sorry you have to join us here. So very happy you found this site tho! There is so much info here! 

    I did the same thing when I was told I had bone mets, googled survival rates, was not a good idea. Sounds like you found the same info I did. I lost it, had a complete freak out. My DH went and read the rest of the page, I didn't make it past the point it said 27 months. After he got me calmed down he read me the dates. The one I read had stats from the past 50 years. Things have improved soo much since then the numbers are much higher now. 

    As is often said around here, we are not statistics and none of us came with expiration dates. 

    I'm sure more will chime in in the morning, or the night owls might be around at some point. In the meantime, read about bone mets here on this site. Google is scary! I think there is no better place to find the information you need right now than here. 

    Sending hugs and good wishes to you. :)

  • Leah_S
    Leah_S Member Posts: 1,929
    edited April 2012
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    Iam, I'm sorry to hear about your dx. As Stormynyte said, the stats you've read are very outdated. I'm another bone metster and I plan to be around for a long time. My onc calls this a "chronic condition". I know the fear you have now and it seems like you are drowning in it but just know that you will come to deal with this.

    A week after I got the scan results that showed the mets one of my granddaughters was born. I held her and prayed very hard that I would dance at her wedding. I told my onc this and he said, "Then learn to dance".

    Sending love.

    Leah

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2012
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    Iam, I'm a bone metster and I read all that twaddle as well and I can tell you it scared the pants off me!  That was May 2009 and I'm still here, if fact so much still here I've just recently had a knee replacement and they don't do those for dying people!!!  Chin up my girl, I'm sure you will get those little boogers under control and be around for many years to come!

    Love n hugs.  Chrissy

  • barsco1963
    barsco1963 Member Posts: 879
    edited April 2012
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    Iam - sorry that bone mets have been discovered. I'm sure we have all been freaked out by Google and the stats posted there. Meeting with your onc should give you some comfort in finding that bone mets are treatable and you can live a full life in spite of them.

    Hang in there - keep us posted.

    ((hugs))

  • Scrappygrl
    Scrappygrl Member Posts: 9
    edited April 2012
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    Less than two months ago I did the same thing.  I'm at MD Andderson in Houston and was told by my regular Oncologist that my chances are 36 months tops.  I felt like she gave me my death sentence.  Then I went to my Radiation Dr and both she and the nurse were very optimistic that since it had not attacked a vital organ, I had a higher chance for survival longer.  Of course, this was after finding out that they suspect that I've had the bone cancer since 2008 when I was diagnosed with Breast Cancer.  It went dormant with the Chemotherapy and then then Tomixifen.  I was switched over to Arimidex in the past two years and apparently it was not as effective as the tomixifen to keep it dormant and showed up.  So it's 2012 and I have had it since 2008 and I am still kicking and planning to keep on kicking.  I've realized now that I need to make dietary changes as well as increase my levels of activity/working out to help add on more years to my life.  But I wouldn't go by the stats...they are a general range which includes those who have metasis to the lungs, liver etc.  We all know that death is imminent anyways, you could be hit by a car tomorrow.  I know the shock of it is overwhelming, I was there.  But I am gonna live life the best way I can, fighting to be here for my kids to grow up.  Keep the fight in you!  Hugs, Amira

  • cookie97
    cookie97 Member Posts: 13
    edited April 2012
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    Dr Google is a scary fella! I did the same as you and many others before us. My Onc described it as a marathon and not a sprint, when a drug fails we switch to something new. Fortunatley or unfortunately there are many new drugs that can keep this beast stable for many years. This forum is a great resource for inspiration, information and support. I rely heavily on the ladies and gents on this board.

    Deep breaths and keep coming round for support,

    Edie

  • 33skidoo
    33skidoo Member Posts: 42
    edited April 2012
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    I was diagnosed with bone mets almost 5 years ago.  In retrospect, I think I had them for a long while before they were discovered.  Each of us is an individual.  Those outdated statistics reflect the entire population of stage IV breast cancer patients as of a number of years ago.  Bone mets patients on average do better than patients with organ mets.  Everyone does better now than they did when those stats were collected.  I'm pretty sure you have a lot of living to do yet.

  • CoolBreeze
    CoolBreeze Member Posts: 250
    edited April 2012
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    Like others have said, those articles you are reading are outdated.  The way an article gets moved to the top of google is how many links it gets.  The older articles have more links and end up being on the top.  There is newer research and many women with bone mets live for years. Some are treated as if they have a chronic disease.  Our very own board member, Kathy Rich, made it 19 years with mets.  She recently died but keep in mind, she began treatment 19 years ago and they have much better treatments now.  There is no reason to think you won't have many years left.

    There is a section of the forum for those of us with mets.  Stage IV.  YOu will get a lot of help and advice there.  When you know your treatment, there is surely a woman who has experienced it!  You will also see that many have been around a while, especially the bone metsters.

    It's not fun and I'm sorry you have to experience it.  (I have mets to my liver).  But, there are a lot of wonderful women here who can help you. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
    edited April 2012
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    I have nothing to add to the encouragement you've already been given, but just wanted to say there is lots of cause for optimism. My RO and MO said I should have many years ahead of me and I believe them. I returned to work several months ago, just welcomed my first grandchild, take my Arimidex daily, Aredia monthly and am getting on with my life. I won't condemn myself based on stale stats and neither should you. It will get less scary as you digest this news and get on with treatment. Take good care of yourself. Caryn

  • nikibird
    nikibird Member Posts: 8
    edited April 2012
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    Hi,

    i am right there with you!  just found out today, after 8 years of what we thought was clear, i have bone mets. i am terrified too!  no idea what to expect yet, haven't had meeting with docs.

    i have lower back pain, do you?

    let's hold hands and walk this path together!!

  • lam
    lam Member Posts: 77
    edited April 2012
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    Hi Sharon, I am so sorry you too...  However, if nothing else, thanks to this great website I have made some wonderful new girlfriends going through all of this. You are clearly going to be one of those. Kiss  I do have back pain.  In fact when this first started I thought I had pulled a muscle or possibly cracked a vertebrae thanks to a bad fall.  However instead of getting any better the pain started to radiate from my hips & pelvis too.  I have had one MRI, another one tomorrow and then a petscan on Friday.  I see my onc. next Tuesday to get the full picture of what I am facing and what my treatment options are.  My blood work showed elevated tumor markers.  I suspect this has all been developing for a long time.  However chemo left me with such bad arthritis in my knees and hands that I also attributed some of my pain to the arthritis just setting up in new areas.  I was a runner until about a year ago when my knee just could not take the pounding anymore.  Right now I am feeling sick to my stomach and just want the onc. apt. to happen asap.  My initial MRI does show several large tumors and something about the bone marrow but I have to have this explained more fully by the onc.  Anyhow Sharon I hope that your situation is going to be one that responds well to treatment and that together we will have many more years ahead and that one day we can celebrate being well again. Lots of gentle hugs. Leslie-Ann.

  • lam
    lam Member Posts: 77
    edited April 2012
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    Thank you Caryn and congrats on the grandchild.  I hope that you get to spend many years enjoying all of your family.  I so appreciate you taking time to post. Hugs, Leslie-Ann.

  • lam
    lam Member Posts: 77
    edited April 2012
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    A huge thank you to all of you wonderful ladies who took the time to reply to my post.  I appreciate the words and encouragement you all gave me.  I wish all of you many healthy years with your families. Caryn & Leah I sure do hope you get to dance with your grandchildren.  I will go to the to the Stage IV forum and continue to lean on you all as I start to navigate these new & terrifying waters.  This site is such an incredible blessing in so many ways.  It was the one resource above all that helped me get through my surgeries and chemo all those years ago and once again I feel like a blanket of support has enveloped me with your kindness to "speak" to me.  Hugs & blessings.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012
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    Nikibird..I sent you TWO private messages...

  • twoputter
    twoputter Member Posts: 100
    edited April 2013
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    Sorry to join this group.  I was in a car wreck on March 18 and the xray showed something on my spine.  My doctor recommended a bone scan which shows abnormalities on my left rib, sternum and spine...suggesting mets to bone.  She is scheduling me for a pet scan.  Only two years since my original diagnosis.  I was so hoping to go longer than this before metastasis.  Scared and sad.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2013
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    Hi twoputter.........hearing those words are really the pits and the fear returns big time.......once you get your head around it though, you realise that if you are not in pain you can lead a pretty normal life for a long time. All stats don't give very much hope but my doc told me two years and here I am four years later still going strong.



    Hoping your treatment does well for you.



    Love n hugs. Chrissy

  • micheleboots
    micheleboots Member Posts: 885
    edited April 2013
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    Grr, I just made a long post then lost it..Oh well.  I'll start again.

    I was diagnosed with Mets last week and I too am freaking out.  It is a 3 inch spot on my pelvis.  I had a bone scan and xray to detect it, as well as a chest/abdominal scan which came back good. PHEWW. But in my usual fashion, I am worried about my brain now.

    My onc has plans to start me on Zoladex to be followed by ovary removal in the future.  As well as Femera and pamidronate.  She also wants me to get in on a clinical trial called Medi-753 (I think).  I plan to do this as well.  I had my port put in last week and will see my rads ONC to see about radiation. 

    So that about covers it for me.

  • mahometmom62
    mahometmom62 Member Posts: 63
    edited April 2013
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    I am not sure I will be joining you yet but have a bone scan scheduled for May 1st. I have had back pain forever even before my diagnosis in 2010. I have been to PT and MRI. Also burning in hip which was diagnosed as bursitis. Now for over a year my alkp has been at the top of the range. Oncologist says not cancer related now it's bumped up to 138 on a range of 52-136. And prior to that the range at the clinic was 42-121. How the clinic changes their range do not know. So now after a year plus of riding on the high end he agrees to do a bone scan. Has anyone been diagnosed because of the ALKP being raised? And just someone please describe the pain mets cause?

  • micheleboots
    micheleboots Member Posts: 885
    edited April 2013
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    My bone mets feel like a deep bruise on my bum cheek, even though my tumor is on the front of my pelvis?????  Not a lot of pain really.

  • Ruchi
    Ruchi Member Posts: 3
    edited April 2013
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    Hi ! I am Ruchi, 36 years of age.I was diagnosed with breast cancer with bone mets in the year 2010. still fighting with pain n undergoing third line chemotherapy these days after a radiation therapy. I hv two little daughters n i jst hv a dream to see them hving a safe n secure future. I don't know hw much time I have. I hv started feeling low n want to get rid of this painful life. Y can't we have a PAINLESS LIFE OR A PAINLESS DEATH....   Plz friends counsel me ,support me.

    I am happy to read ur positivity towards life. I want to be active and useful fr my daughters till the end of my life....

    Hugs n gud wishes to all my friends...

  • micheleboots
    micheleboots Member Posts: 885
    edited April 2013
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    Welcome Ruchi, Hang in there friend.  i know this is tough.  It is scary for sure and all we all want is to live longer and see our kids grow up.  You should talk to your dr about your feelings.  Just know as well that you are not alone, we are all here for you.  WE are sisters not by birth but we are sisters just the same.  It is nice to know we have each other and can hold each others hands all around the world.  I would love one day to visit India.

  • s3k5
    s3k5 Member Posts: 411
    edited May 2013
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    Hi Ruchi,

    I know it can be overwhelming and depressing when you are first diagnosed with BC. There are so many treatments available. So there is a lot of hope. It is this HOPE that carries us through our life! I have heard and read that bone mets can be kept stable for years.

    Lucknow is a big city, so I am sure you have best possible care available. You didn't mention about the type of treatments you went through - did you have surgery,chemo and radiation? Are you in a lot of pain? If so, be proactive about bugging the doctors for a good pain relief medicine!!

    I am from India but settled in USA. PM me if you want to. I was diagnosed with stage III BC in 2008 and just got a diagnoses of bone mets.

    I hope you have good family support.

    Take care,

    Desi.

  • micheleboots
    micheleboots Member Posts: 885
    edited May 2013
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    Ruchi, how you doing....

  • Luckylady68
    Luckylady68 Member Posts: 2
    edited May 2013
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    Just wanted to say hello!



    I have just learnt that I also have bone mets, so I am also on the emotional roller coaster!

    I'm really glad I've found this site, I needed some positive energy!

    I look forward to getting to know you all better in the coming months.



    Take care

    Rachel x

  • micheleboots
    micheleboots Member Posts: 885
    edited May 2013
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    Rachel, welcome.  I started this roller coaster about five weeks ago.  Trust me once you get over the initial shock you will be fine.  We are here for each other.  Where is your METS?  Mine is in my pelvis.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2013
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    Hi Rachel and welcome both to the site and this thread. My bone mets popped their heads up in 2009 and I'm still here and doing well. Take a deep breath and try to relax a little..........I know getting the words stage IV aimed at you are pretty scary, but believe me when I say that you will get your head around it and learn to live one day at a time and make the most of each and every day. With bone mets, you can be around for a long, long time.



    Love n hugs. Chrissy

  • micheleboots
    micheleboots Member Posts: 885
    edited May 2013
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    Well said, Chrissy.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2013
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    Thanks Michele 😊

  • micheleboots
    micheleboots Member Posts: 885
    edited May 2013
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    Rachel, what does your onc have planned for your treatment.  I found that once you talk to your dr. and you two can make a plan, it all feels a little easier.  It has to do with feeling like you are in control of the cancer, instead of the cancer controlling you. 

  • msmarshia
    msmarshia Member Posts: 1
    edited May 2013
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    I have a friend in Georgia that has Met and she did a phone interview about cancer and got $175. She said the hour was soothing and their moderator was kind. Her cancer has spread to the bone. Her2 is + and as her hormone receptor. She said when she was diagnosed she passed out and was in shock for days. I'm doing it tomorrow everning. if you want to the woman i spoke to was Dana. She talks like a freight train but she was nice. the number is 888-959-7609. I did a little search and the company is USA Family Opinion Research. i went to the sight and sent my information so when they have more cancer projects they'll call me. i do the interview tomorrow.