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Metastasis to bones, so scared.

1246

Comments

  • aaoaao
    aaoaao Member Posts: 245
    edited August 2013

    My bone met was discovered after I went for my 3 month checkup with my MO.  I was in tears because my back/hip/legs hurt so much.  The year before I had the same symptoms and went to the ER because I couldn't hardly walk without numbness and burning in my left leg.  The doctor there told me I had sciatica and that the condition would come and go.  He gave me pain pills and sent me home never doing an xray. So every time I would feel the pain I thought it was sciatica. The pain became more severe and was now affecting my right leg too. It wasn't till my MO wanted to do an xray that they found a rather large tumor on one of my vertabrea and that it was pressing on my spinal cord which was causing the numbness and burning in my legs.  Sometimes even if a doctor says it's nothing we need to fight for further testing.  If I had the xray at the ER my tumor would have been seen and treatment could have started a year earlier.  But yes sometimes bone tumors can be painless.  My tumor only became painful after it grew large enough to compromise my spinal cord and nerves.

  • ihatesnowihatesnow
    ihatesnowihatesnow Member Posts: 8
    edited August 2013

    http://www.hhmi.org/news/bad-bone-some-breast-cancer-cells-are-primed-thrive?utm_source=Hootsuite&utm_medium=Twitter&utm_campaign=HHMINEWS-Twitterfeed

  • Romansma
    Romansma Member Posts: 650
    edited September 2013

    Hi everyone. I'm not new to the boards, but I'm new to stage IV. I'm in shock. Multiple mets to bone....spine, hip, pelvis, shoulder....and a couple more that I can't remember right now. I think I thought I'd get a call this week telling me it was all a big mistake. I feel numb.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited September 2013

    Romansma, another Ventura County girl here...I'm so sorry you're dealing with this.  There are just no words.  You're in my prayers.

    Your signature says it all.  HOPE.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2013

    Hi Romansma and welcome to the stage IV sisters club.........



    It sure is scary when we are told we have mets and they start to list all the places........your mind sort of goes a bit numb. Deep breath, once you get your head around what you have been told and you get started on your treatment you will begin to realise that it's not the end of your life, just the beginning of something new. There are more than likely many years ahead of you yet.



    Love n hugs. Chrissy

  • micheleboots
    micheleboots Member Posts: 885
    edited September 2013

    Welcome Romansma, sorry you have to be here, but like Chrissy said once it sinks in you will be ok. Once you have a treatment plan in place you will feel like you have more control.  There are ladies who have been dealing with bone mets for a long time.  Bone mets is also one of the easier mets to control.  We are all here for ya.

  • Romansma
    Romansma Member Posts: 650
    edited September 2013

    Thank you ladies for your warm welcome. I am looking forward to the day that I'm not totally freaked out......and the night that I sleep without waking at 2 or 3am.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2013

    Romansma there will come a time in the not too distant future when you will look back and wonder why you were so freaked out. Once you realise that it is possible to live a near normal life with bone mets things will ease for you. Sleeping can be a problem but there are always meds, relaxation etc that can help with making sure you get the prescribed eight hour a night, uninterrupted.



    Hope that time comes soon for you.



    Love n hugs. Chrissy

  • micheleboots
    micheleboots Member Posts: 885
    edited September 2013

    Romansmoa, I took sleeping pills for about two weeks unti I came to terms with it.  Then I was ok.

  • HLB
    HLB Member Posts: 740
    edited September 2013

    Hi Romansma, it is certainly shocking and terrifying! I was dx with mets to the spine a little over a year ago, after 8 years NED. I thought for sure it would never come back but since being on these boards my eyes have been opened. I took ativan at first but once my tx started working and tm came back down, I was able to relax and my life is pretty much back to normal, except I have to go for an xgeva shot once a month. That plus Letrozole really worked well to bring things back to stable and calm my fear!

  • Romansma
    Romansma Member Posts: 650
    edited September 2013

    I was hoping for 8 years and got 2. This past year was a bit surreal. I've been having so much fun....it's like I was trying to fit 5 years of fun into one. I'm planning to have a lot more, just hard thinking there might be a spoiler to this party. I read somewhere here how one of the ladies here felt like she was at this great movie and at any moment the usher was going to tap her on the shoulder and usher her to the exit. That's how I feel.....I love this movie and I want to stay till the credits roll dammit!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2013

    Romansma, there is a great thread in the stage IV section headed Bone Mets Thread and I think you will benefit from all the post on there as well as the support you will get as there are quite a few who post there regularly.



    Love n hugs. Chrissy

  • Romansma
    Romansma Member Posts: 650
    edited September 2013

    Thanks Chrissy, I will check it out.

  • SAMayoFL
    SAMayoFL Member Posts: 63
    edited September 2013

    Romansma, our stats are pretty close.  Both have ILC, diagnosed in the latter part of 2010 and we went through chemo about the same time.  

    As everyone else has said, welcome to the club no one wants to join.  Looking back, I would not have made it without the strength, support and knowledge of the ladies on these boards.  You will find an amazing support group here too.

  • Sue2009
    Sue2009 Member Posts: 96
    edited September 2013

    I am new to this site & glad I found it. Dx w/ bone mets last Feb. had been waiting for this dx was quite distraught though, had been complaining of hip pain for 9 months, bone scan done last year thought it was arthritis, PET scan showed hip was close to fracturing. After radiation & changing from arimidex to tamoxifen & starting Zometta I have settled down a lot. My doctors say they have patients who have had bone mets 10 years ago, so I cling to that.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2013

    Hi Sue and welcome! There is also another thread called 'bone mets thread' and there is a plethora of ladies on there as well.



    It's awful being told that your BC has spread and of course you mind asks how long have I got? The statistics are so old and outdated that you find on the net and sprouted by a lot of the doctors. The point is, we are all individuals not statistics and as such it is very possible to live a very long life with bone mets only........a case on point is of a member here who used to post every year on her cancerversary and did so for nineteen years.



    Have hope as there is definitely life after mets.



    Love n hugs. Chrissy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2013

    Noquitter everyone is scared, you are not alone. The trick is to try to quell that fear and live your life as fully as possible.



    There are an enormous amount of new drugs now available and a whole lot more of the targeted treatments soon to come on line so the hope is that at least one or two will work so well for us that we can hang around on this earth a whole lot longer.



    Have you had any targeted radiotherapy? That kills the little devils and relieves a whole lot of pain.



    Love n hugs. Chrissy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2013

    Noquitter I'll go find it now and have a read.



    The targeted rads are used to control pain in the worst areas but the draw back is once an area has been done it can't be done a second time in the same place. I'm surprised that your onc hasn't mentioned it.........maybe he feels that you are not to that point but I would ask if I were you and just see what he says.



    Love n hugs. Chrissy

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,315
    edited September 2013

    Rads are also used to eradicate bone mets.

  • micheleboots
    micheleboots Member Posts: 885
    edited September 2013

    Good morning everyone, and welcome to Sue and Noquitter.  I know it is a scary place to be, but we are all here for you.  Soon enough you will get into a new routine and things will get back to a new kind of normal.

  • jacquelineteo
    jacquelineteo Member Posts: 1
    edited September 2013

    Hi ladies,

    I joined this forum on behalf of my mom because she couldn't speak/ understand English. She was diagnosed with breast cancer, had a surgery to remove the tumor with one lymph node affected. She just did her bone scan today and although we haven't visit her doctor to explain what's going on, I saw the report says "multiple bones metastasis" and I googled it to find out more. I have to admit that I'm really scared and concerned. But luckily I stumbled upon this forum and I read most of what you ladies have shared. I'm becoming hopeful. Thank you so much. I really appreciate all the sharing and I'm praying hard for my mom and all of you! 

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2013

    Hi Jacqueline and welcome. So sorry that your mom has joined the stage IV team but glad you have found this forum and this thread to help her out.



    Can you tell us what her stats are? It will make answering any of your questions a little easier.



    Don't lose hope as it is possible to live for a long time with bone mets.



    Love n hugs. Chrissy

  • micheleboots
    micheleboots Member Posts: 885
    edited September 2013

    Welcome Jacqueline, Your mother is lucky to have you looking out for her.  Lots of us are living with bone mets and doing great.  We are here for both of you.

    Michele

  • RangerMom
    RangerMom Member Posts: 205
    edited September 2013

    Hi Jacqueline, On the Bone Mets discussion board you will find lots of us women with bone mets, many living for years with it. I find my encouragement there and answers too. Please let your Mom know we say hello and sending her positive vibes to get through this initial shock. the statistics out there in www are old and my onc says don't pay any attention to them. Once she is on a treatment plan it helps tremendously. They all told me that when I first came here and they were so right.

    Linda

  • alilou7497
    alilou7497 Member Posts: 40
    edited September 2013

    You read all the posts and you get sad, then you get happy, then you get discouraged, then you get scared, then you get encourage.  Its bad enough to deal with cancer....then you deal with mets and then you deal with the rest of your life on a roller coaster  you can't get off of.

    I was diagnosed with mets, July, 2013 exactly 10 months after my last radiation for breast cancer.

    I am a triple negative breast cancer person.

    My mets....let me list, lung....liver.....one lonely one in the brain that they zapped and now just recently bone.  In my chest wall, ribs, right side pelvis, right femur/tibia, chest wall, sternum (its neverending)...they claim superficial but they are there.  I think that the bone mets got me scared the most.  Probably because I have everything else what else can happen.

    I am a single parent to a 16 year old and I am not ready to let him go.  So I push despite the fear.  I am on carbo/taxol and they are going to put me on xgeva for the bone mets.  The onc keeps telling me this is no curable but it is treatable.  This is working when it stops there is plenty of other things.  She makes me feel like I can live forever with this disease.  But every time I move there is always something reminding me that I'm not really "normal" per say.  

    I pray all the time, go to church, work four days a week.  Try and keep my son busy with movies, shopping (well window shopping, who can shop with these co-pays) Trying to take him to Six Flags Fright Fest just so that he can see that mom is still mom.

    No one should have to go through what we go through.  It  pisses me off sometimes that we waste money helping other countries survive but we can't figure out how to stop this disease. 

    I just pray for strength and hope that I can fight and give my son and myself more years.

    I pray for all of you as well.

    Lee

  • ThePowerOfPink
    ThePowerOfPink Member Posts: 9
    edited September 2013

    I have bone mets too.  They can go away.  Mine were from my skull to my knees and most have gone away.  I still have some in my spine and hips.  It also is gone from my liver and lungs. Do NOT give up hope. I was pumped up to stage IV in 2011. I will always be on chemo and adjust to my new normal as each chemo stops working and I start a new treatment. I enjoy every day and I am grateful I still have treatment options. xoxo

    I love the strength I find from reading posts on here. Thank you ladies.

  • alilou7497
    alilou7497 Member Posts: 40
    edited September 2013

    Power of Pink:   Laughing It was wonderful hearing from you.  It just made me smile to know that I am not alone on this.  That someone else has gone through the same type of mets and that things are working for them.  Thank you so much for posting. 

  • ThePowerOfPink
    ThePowerOfPink Member Posts: 9
    edited September 2013

    alilou7497,

    Smiles are contagious even through the internet. :) I'm smiling too now. I took a break from this site for a while to focus more on living. But over the years it has remained here for me when I need it or when I feel I have the mental strength to come back and encourage others.  A break is ok and needed at times.  We are all so different and our cancers and treatments are different too but we can always help each other somehow. hugs to you

  • micheleboots
    micheleboots Member Posts: 885
    edited September 2013

    Lee, welcome.  I know how you feel.  I am an emotional wreck some days.  I have two teens and I so badly want to see them grow up.  Some days I feel like every ache and pain is a new mets digging in.  I have regular scans since I am on a trial, and so far only one big one on my pelvis,but it still scares the crap out of me.  I find this place is so helpful and hopeful.  All you can do is enjoy life with your son and love him to bits.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,315
    edited October 2013

    Lee,

    Welcome. Living with mets can be very up and down, but most of us keep living longer and better than we initially thought we could. I have lived outside of the Bronx for over 30 years but grew up there (PS 97, JHS 135, Columbus HS) and then ventured to Queens College for my undergrad. I was just there over the summer visiting my best friend. Take good care of yourself.

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