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Bone Cancer Mets from Breast Cancer

smartinez200
Posts: 3
Joined: Oct 2010

I was diagnosed with breast cancer 7 years ago and it has come back, mets to my bones. I have numerous spots on my ribs and a large tumor close to my spine at the back of my neck but they have slowed it down with radiation. I am taking a monthly hormone shot. My doctor said that people can live many years with bone metastasis. Just wondered if anyone out there has had similar reoccurances and their treatment. Thanks and God Bless....

marines911's picture
marines911
Posts: 68
Joined: Aug 2010

through the same thing. Her mets came back in her spine (T-9) and then a year later after the cyberknife it came back again in the T-9 above and below the original spot and now it is in her L1-L3 and in her ribs and clavical. We are awaiting word from UCLA to see if she qualifies for their clinical trial and hopefully it will shrink all the areas in her spleen, liver, and chest as well as the bones.

Good luck and keep fighting.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Welcome smartinez200 and I am so sorry that you have bone mets. There are several on here with mets, Meena, bjmom and others that I hope will post for you.

I am wishing you the best of luck and sending prayers.

Hugs, Megan

meena1's picture
meena1
Posts: 1005
Joined: Oct 2008

I was diagnosed with breast cancer and bone mets in July 2008, I had chemo, and a masectomy and continued with Zometa (an infusion drug that strengthns your bones). I was stable for a while, but i was diagnosed with a reoccurance on June 2010 with mets to my spine, T-11 and my liver. I have had a lot of back pain and i am currently taking pain meds for that, i am not sure if i will be having radiation on my spine. You can live a very long time with bone mets, you have to be careful because your bones may fracture easier. Are you on a bone strengtning drug? Is that the hormone shot you get each month?

survivorbc09
Posts: 4378
Joined: Jun 2009

I'm so sorry that this happened to you. I will keep you in my thoughts and prayers.

Hugs, Jan

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

How are you doing now Meena? I don't think I have seen a recent post.

keep_on_going
Posts: 21
Joined: Oct 2010

I was diagnosed with bone mets. 9 months after my original diagnosis. Several spots on my spine & ribs. That was over 4 years ago. I take Zometa IV every 3 weeks. I've had kyphoplasty to stabilize my spine. And I have had a couple courses of chemo when it appears the spots are growing. The pain sometimes is hard to control. But I wake up every day, work full time, have a great support group, and life is good. Best of luck to you

iowasignterp's picture
iowasignterp
Posts: 55
Joined: Aug 2010

i like the hope of 4 years. someone posted it had been 13 years on a different thread. thanks for the hopeful answer. what are your markers??

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

I don't have mets to the bone, but, want to wish all of you that do, all of the luck in the world and to let you know that I am praying for you. Keep fighting!

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

All of you with bone mets are amazingly brave and wonderful sisters! I wish each and every one of you the best of luck that is possible.

Sue :)

iowasignterp's picture
iowasignterp
Posts: 55
Joined: Aug 2010

i was originally diagnosed the first time five years ago, treated with chemo and herceptin. two months ago, I was diagnosed again but with mets to the bone (right hip and L2 vertebra). I am taking xeloda, with iv's of herceptin and zometa. i am er-/pr-, and obviously HER2+. your type of cancer does make a difference, i believe.

I have heard from a few anecdotes that you can live a long time when it is just mets to the bone but once it gets into soft tissues, the prognosis gets much dimmer. people don't usually die of mets to the bone, only once it spreads to the liver, lungs, etc. right now, it seems that it is positive enough that they don't really have clinical trials if you have mets only to the bone. treatment options, yes, but not enough to invest much in new medical drugs and tests during that time. i have also heard that you can live for years with mets to the bones, but don't ask for any specifics.

the big question for me, is how long can i survive with it just in my bones before it spreads elsewhere?? I don't know and I can't find any reliable info about that. doctors don't usually answer that question either. If you find good answers to that, please let me know. I am finding it aggravating. somebody has to be keeping track, somewhere.

there are a few people on these boards that have lasted a long time with mets to the bone. I hope to be one of them but it has just been too recent for me. good luck.

p.s. if you look much farther back, i started a thread about "stage IV, mets to the bone", and got several responses including some who have been around for a while post diagnosis.

keep_on_going
Posts: 21
Joined: Oct 2010

My story is the same ER/PR -, HER2+. I was diagnosed with mets. 9 months after my original diagnosis. That was in March 2006. Originally it was in T10,11,12 & L1,2. I also had a broken rib. After 4 years, I know have it in the right hip & shoulder blade, and a few more ribs. You're anecdotes are true as far as I know...bone only is the best (? when it's u it's the worst!) My doc won't give me the answer. If I find one somewhere I'll certainly share

iowasignterp's picture
iowasignterp
Posts: 55
Joined: Aug 2010

It is a sad thing when we compare our cases to others but each person needs to have their hopeful best as much as they can. I am hanging onto any hope I can so that I can get my boys out of high school (year 2017) and college I took a long time getting my head wrapped around the word "incurable". It is a tough thing but now that I can't change anything but I will grasp onto the hope that I have heard enough anecdotes to know that if it is only in the bone, it is not great but tolerable and manageable with a few rounds of chemo. Not exactly exciting but it is better than the much worse diagnosis. I still admire our warriors that are battling that tougher battle because I know it is likely to become my battle sometime in the future. However, I am ready to keep that battle at bay as long as I can for now.

The doctors and other patients keep telling me that it is not unlikely that I could live for a very long time with it contained to my bones. However, I would think someone should be keeping track as to how long this process could take. Even if I were to get a very, very broad range, I would feel a little better. It seems that once it spreads to the organs, prognosis is closer to three years for the current treatments. I am sure that is not completely accurate and there are exceptions to everything, of course. So if I can get a general range that people live anywhere from 1 to 10 years (???????????)in bone only, then I have another three years dealing with the spread. So maybe, I have 4 to 14 years. Then again, maybe 20 years is more likely. I would like having some type of medical literature though telling me that there is some documentation about how long it can stay just in the bone. I know that treatments are changing and improving frequently but I want to know when to celebrate each baseline or goal line. Incurable sounds pretty bad in most people's minds, including my own at first.

keep_on_going
Posts: 21
Joined: Oct 2010

I have trouble when people ask if I'm a survivor. Yes, I am surviving..but not like I'm disease free or cured. And that is what they perceive a survivor to be. I go every 3 weeks for my Herceptin. I had to stop the Zometa because I developed of osteonecrosis of the jaw. Every scan and blood draw is just like when I was waiting for the first biopsy results It has become a chronic condition..like diabetes..no cure but some great treatments..and new things coming every day.
Over time I have learned to celebrate each day I can get out of bed, manage my pain, and make someone smile

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Praying for you!

iowasignterp's picture
iowasignterp
Posts: 55
Joined: Aug 2010

Am I a survivor? well, I agree, I am not cured or disease free and I am not completely a warrior either at this point in time. almost like a limbo or purgatory. I agree with you, keep-on-going, I am surviving but have trouble with that question. I am so glad you decided to post here. you get it. thanks.

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I think you are all survivors, don't you? You are fighting a much harder fight than I, and, many on here. Keep fighting and know that you have lots of support here!

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Sending prayers!

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I was diagnosed with bone mets in April 2009. Hormone therapy has my markers almost normal and I am working and doing well. Just wanted to give you some hope as for some us, it may not be curable, but it is chronic and manageable.

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I also had rads and am on arimidex daily and zometa once a month.

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Sending prayers and big hugs to you!

Hugs,

Angie

sal314
Posts: 633
Joined: Jul 2010

I have several friends that do. One friend has been dealing with it for the past 6 years and is doing really well. Another friend has been living life with bone mets for the past 10 years. So...though I know it isn't easy, you still can have an enjoyable life! Keep a positive attitude and just make the most out of every day we're given. No one knows how long they have here on earth, whether they're fighting cancer or not. We all need to learn to live out our lives to the fullest each day!!

I do have a queston for you though. When you were originally diagnosed, what stage were you? Did you have node involvement? If so, how many?...I'm 9 years out and though I don't "worry" on a daily bases about recurrance, when I hear stories like yours, I do get a little anxious! Blahhh...

Blessings,
Sally

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Praying for you!

Hugs, Leeza

cookie97's picture
cookie97
Posts: 200
Joined: Jul 2010

Yeah me too :( i was dxd in May of this year with mets to bone from get go. I have just completed my 7th round of Taxotere/Cytoxin along with Zometa. My last PET showed all clear except for one spot remaining on my left Illiac originally dxd with T11, T12, L4, L5 both femurs, pelvis, and both illiac. Meds are doing pretty well at keeping everything at bay. I am supposed to have 2 more treatments then another PET hopefully all will be clear at that time.
The fear is somewhat daunting to say the least. I remember saying to the onc. "Oh in bone. Isn't that better than the liver or lungs?" Almost like it was good news. Crazy me! Guess we hold on to whatever thread of hope that is out there?
I don't have any pain, but onc said that if I did they could use rads to alleviate that.
Good luck to you and don't let it get you down.

Peace and Love,
Edie

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Praying for you and hoping your treatments will help you. We are all here for you anytime you might need us.

Hugs, Kylez

keep_on_going
Posts: 21
Joined: Oct 2010

I'll pray there are no more hot spots, and the chemo doesn't get you down. The Taxotere was close to unbearable for me

fauxma's picture
fauxma
Posts: 3544
Joined: Dec 2008

Smartine,
You are in my prayers that treatments are effective.
Stef

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Sending prayers and good luck to you too Edie and all of you with mets.

Hugs, Megan

Msbrit
Posts: 1
Joined: Nov 2010

I was diagnosed with bone mets a month ago after 11 years in remission. After radiation I became so weak I'm unable to walk. Has anyone else experienced this? I'm encouraged by the posts here. Thanks in advance for your replies.

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

I do not have bone mets, and, pray I never do. I just wanted to send all of you prayers and hugs. I wish they would find a cure!!!

As one sister on here always says, GirlPower!

phoenixrising's picture
phoenixrising
Posts: 1510
Joined: Feb 2007

My heart goes out to you....all of you who have had to wrap your head around mets to the bone. Yes, you are survivors and most of all warriors. Even the most fierce warrior needs to rest for the next round. This link: Forum: STAGE IV BREAST CANCER SURVIVORS is from breastcancer.org and is a forum for stage 4. I'm hoping that between the 2 sites you will find your answers. A friend of mine just lost her sister who was clear for 11 yrs. It just brings home that none of us knows if we've been cured or not. I can only speak for myself but although I carry on each day and try to keep it out of my mind, there is still a part of me that is waiting for the other shoe to drop. My lesson, I think, is to accept and find a place for it if that makes any sense. By the way, the woman who started breastcancer.org has also experienced breast cancer. Many blessings to you all and I hope you find what you need.
hugs
jan

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

So sorry Jan to read about your friend's sister. And, breastcancer.org is a great site. I like the way they have individual sections for everything involving cancer.

Adding my hugs and prayers to all of you,

Lex

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Thanks for the link!

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