Bone Mets Thread
Comments
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To All You Wonderful Ladies!
I have just past my three year Metastatic BC Cancerversary. I have mets all over the place but Arimidex seems to have stopped them in their tracks! Up until recently I was unaware of this wonderful group of sisters in this Club none of us asked to join. I have been trying to fit in to the larger BC community. While I respect them as amazing men & women, terrific people and fighters, I've gotten tired of being the "downer" in every BC conversation I joined. While everyone tried to be understanding, their focus is obviously on cure. I understand that 100%. But, man, is it wonderful to find a group that understands my "new normal!"
This normal requires a tight-rope walk every day. Living life on one side, being real about death on the other....all the time. In the beginning I was just waiting for the time when I didn't think about BC every day. I think I've made peace with the fact that that time will probably never come. It doesn't fill huge parts of my day, or keep me locked in fear all of the time. It just seems to be there, just on the edge of life waiting to be remembered. Maybe it's a new ache or pain, maybe it's someone sayin "just you wait till you have grandchildren, you'll understand." Sometimes it's just counting out my pills for the week.
I have five kids. The only one still at home is 16. He is such an amazing kid and he keeps me laughing, getting out & about with a positive attitude. But damnit I HATE that this part of his life every day. My husband is amazing. He takes care of so many things in our daily life so that I have the energy to do the "important" things. Sometimes I think this is all harder on him.
I'm sorry for going on and on. I intended to hop on to answer the question "how long?" I have had three full years. Very few significant bumps in the road and excellent control with Arimidex & Zometta. My pain is controlled well with narcotics and I am blessed with doctors who are excellent and aren't stingy with my pain meds. They believe quality of life is most important. I recently moved to a new community and people are always stunned to learn that I have MBC because I live such an apparently normal life, they don't see the daily naps, the crying when fear takes over or how long it takes me to get moving in the morning. But I'm not complaining! Right now I am SO THANKFUL for y'all. Knowing that you are there and that you are understanding me, not freaked out by my story(except maybe that it is so long)!
Let me close by saying:
1) bone mets can be controlled for many years for many who have the right combination of factors.
2) Having this resource, friends who are sharing the same path, is the greatest gift I've received in a very long time!
Thank you for sharing your journey so openly and so lovingly! I hope I can live up to your example and help make some of this easier for some of you,
Peace and a pain-free day tomorrow!
Virginia
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Hi Virginia! Welcome! Oh yes, we get it and you are allowed to winge, vent, cry, laugh........basically anything that you want to do that makes you feel better. This is a very good group for understanding and support.
Love n hugs. Chrissy
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Hi Virginia, I would also like to extend a welcome from a wonderful group of caring, supportive people. I also tried fitting into the larger BC group and found it difficult. You sound very together, which is not always easy to do. I hope today finds you content and enjoying your family, they sound wonderful.
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I really like this group. Can I stay if I have liver mets too?
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Barb312, This is a video from a conference. It answered some of my questions about prognosis after bone mets.
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Maureen,
Of course!!!!!
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Urbanfarmer, If I never learned anything else from this terrific group the link you just sent would be enough! I was diagnosed with bone mets three years ago and have never seen (all in one place) a better explanation of this metastatic disease. Most of this info I have picked up along the way but what a terrific resource!
Chrissy, Maureen & Teacher,
Thank you so much for the warm welcome. I feel like I've had a huge hug to start my day. I am so glad to know that you are all here. The support will be more helpful than I can even imagine.
Peace & a pain free day!
Virginia
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Kiwicatmom: praying for you!!
Justdz: you are in good company here. Hopefully you will learn a lot.
I started my own thread (you may see it if you click my name) about having extensive bone mets & being ER+ only. I just had my onc visit yesterday and will post the results there. I've been on Armidex since I was Dxed last June 28, and Xgeva shots since October. I had my 3rd PET scan last Friday and also another Tumor marker test (I don't know how many of those now). I'll link my thread next so you can read about my latest tests, I don't want to hijack this thread or bore anyone.
http://community.breastcancer.org/forum/8/topic/81...
The title is Stage IV: ER+ PR- Her 2-, a lot of Bone Mets- any others?0 -
I was diagnosed in my early 50s with stage iv bc. Before that time, I thought I would live to be well into my 90s or even to 100 or more as I has a couple grandparents who lived that long with good health. I had no idea when diagnosed that I would still be here a little more than three years later. Looking back, three years has been a wonderfully long time, I am currently stable, and could possibly be around for a three, six or more years. But, at the time of diagnosis, to say, oh, three years at least to me would not have sounded very long at all. So my idea of being around for a long time has changed, and now to think I'll be here another three or six or nine years is great. Still not long enough, but the approach to life changes with a stage iv diagnosis, I live differently, I look at it from a different perspective.
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Welcome, Virginia! What a great post. DevineMrsM - well said - I feel much the same. Although with the speed at which advances are being made, I agree with my MO who said his goal is to keep me alive and in good shape as long as it takes to find a cure. Nice goal to have - for him and for me.
I have a bone scan on Tuesday, but will be a couple of weeks before I get results as my MO is going to be at a conference in San Diego. I keep reminding myself that worrying about it won't change the outcome and will just interfere with my having fun in the interim. Easier said than done, but feeling optimistic for the most part. Love that he's proactive - as soon as I rocked up and said I have a couple of new pains he immediately said "bone scan". I told him I was hoping I was just being neurotic and he laughed and said "Neurotic American? Never seen that before!"
As all of you said, this is the new normal. Cancer doesn't occupy my every moment or every thought like it did a year ago, but it's always still there. Lucky for me, I have a supportive husband, cats who keep me laughing and give me snuggles, great friends who pray for and support me, and a job I love with supportive people who give me the flexibility I need to be able to work full time while still feeling ok. It's so amazing to have managers who trust me to work from home on days I just can't face the commute because I'm too sore or tired. And they treat me like I'm "normal" instead of sick and fragile while still respecting that I have some special requirements from time to time. I think for me, being able to work and having a positive environment at work is a lot of what keeps me on track emotionally.
Hugs to all,
Terre0 -
Kiwimom, can you request a written copy of your bone scan be sent to your home? When I get a PET, the onc schedules me for an appt. with her later that same day. She can look at the scan on the computer and gives me unofficial results as to what they are. She always says the radiologist writes up the final official report, but so far, the onc has been correct, as results have been stable.
However, when I go for the scan, I always request that a written report be sent to my home, and it's there within three days. My regular primary physician likes to have copies of the scan reports, so the ones sent to me from the radiologist are the ones I give to the regular doctor.
Anyway, thought I'd mention that in case you prefer to read result sooner than your MO can accommodate you.
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Divine and Kiwi, when I have any scans done I wait an hour and am given both the written report and the films........I get to see both before my docs do. I just tell them I'll wait for the results and that is a common occurrence here in Australia.
Maureen you are definitely welcome to stay.
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DivineMrsM, I was 50 when first diagnosed with breast cancer, and I turned 55 last month. I was in such a state of shock when the bone mets were confirmed, and managed to completely exhaust myself with misery. After two weeks of jumping at every noise and looking nervously over my shoulder as if cancer was a person creeping up on me I realised that I couldn't go on like that. My counsellor told me that in those first weeks I had a form of post traumatic stress.
I feel hopeful that I can have a good time in the coming years. I really feel that part of the problem for people in our situation is that society can't talk about terminal illnesses - if we were to go back 150 years when people had to cope with TB and the like I am certain that it was easier to talk about it. I have told all of my friends and family and am glad that I made that decision. I appreciate that doesn't work for everybody, but I just wish it wasn't such a taboo subject. I work in Dublin, and every morning I walk through the city and look at the faces of the people as we pass and wonder if any of them have terminal cancer, or am I the only person.
I do know of two people here in Ireland who have had breast cancer in their bones for over 20 years. One lady is a neighbour of my aunt, she has had two bouts of radiotherapy since her diagnosis and sometimes the pain is so bad that she stays in bed, but there is no sign of her leaving this mortal coil any time soon (I think she is 71 or 72). The other lady is a neighbour of one of the oncology nurses, she seems to be staying on this earth for a long time too. I have even asked my aunt and the nurse what is different about their neighbours, what is their secret of longevity and they say that these women eat just as badly as everyone else and are not into any form of healthy living. I have decided to have a good time for as long as I can, and I hope everyone else does too.
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Thanks Urbanfarmer for the link. It explained a lot of stuff I did not know about how the Pamidronate works. Have been on Xeloda and Pamidronate for 18 months and am at present considered stable. I lost the use of my legs from mets eating 2 vertebrae that were pressing on my spinal cord and extensive surgery with rods installed in spine and a rib removed. I am thankful for every day and have a new outlook on life, trying to get the most out of each day!! Hugs you lovely ladies!
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Thanks Chrissy and MrsM. It took me six months to get my pathology report; the system here doesn't make things easy. However, I will ask when I go for the scan. I am guessing that my MO would have someone else see me if the results warranted a super quick follow up. I'm a bit stressed about it, but when I look at things honestly, I'm much more upset about the fact that they're predicting snow on the mountains this weekend and we haven't really had a summer to speak of. So having autumn hit so fast is just annoying. I'm not fond of winter and looking at 10 months of it isn't helping me keep my spirits up. However, I am hopeful that this is a one-off deal and that it will return to summer-like weather soon and stay nice until June like it did last year.
Friday - I'm with you - trying to have as much fun as I can for as long as I can and go out saying "Whoo Hoo! What a Great Ride!". And thank for the news about the 20 year survivors. Always helps to see that kind of info.
Thanks for the great info everyone!
Hugs to all,
Terre0 -
did you participate n lee011, if so I was wondering what was involved in the study and how did you do? Thanks
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Hi there @Chickydee,
Hope all is well and you are doing better every day. I am searching this forum for my mother. She has stage IV breast cancer in numorus spots and one spot is pinching her sciatic nerve. She is in so much pain that she can not talk. It seems like the doctor want to give her another round of radiation, but she says that she can not even get to hospital, let alone sleeping in their bed for the radiation. May I ask what were you priscribed that helped you with the sciati pain?
Thank you.
Sham
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justdz.......(((HUGS))) You have found your friends. Just stick with us babe!!
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Hi everyone. I'm a noobie - new to this forum and new to the cancer diagnosis. I got the breast cancer diagnosis about a week ago, and then Thursday, after a bone scan, I got the news that the cancer has spread to my shoulder blades and my neck. The explains the pain I've been having in my shoulders for months. It got so bad once that I went to the urgent care dept of the local clinic. The doctor there had some x-rays taken and told me that I had arthritis. I figured it had to be more than that because I was getting tingling and numbness. I told the doctor that and said I thought it had to be a pinched nerve. He said, it wasn't what "they" would consider a pinched nerve. It was arthritis and I needed to come to terms with the pain.
At Christmas last year, the pain got so bad I couldn't move. Any movement of my arms or shoulders resulted in severe pain. I made an appointment with a doctor, got in the next day, and found that I had a more sympathetic doctor. She scheduled a number of tests, which eventually led to breast biopsy, which led to the breast cancer diagnosis.
So Thursday, I had a infusaport installed and some scans done. The good news was that there is no soft tissue involvement. The bad news was that it spread to the bones. I'm going Monday for the first chemo treatment. The original plan was to do two chemo treatments, do surgery to remove the lump in my breast, and then two more chemo treatments. But that changed as a result of the mets to the bone. They aren't talking now about surgery. Since I'm new to all this, I don't come up with questions until the doctor is gone. Then I start thinking.
I did ask the doctor about the prognosis. I had to practically pull it out of him. He said two years, but he's had patients who have lived up to 8 years. I should add that he's a relatively young doctor. Reading some of the comments here, I have to wonder about the two years. Is two years the number of years most women have after a diagnosis of breast cancer that has spread to the bones? Or is that my specific diagnosis based on the amount of cancer that has spread to the bones? The doctor didn't mention any spread beyond the neck and shoulder blades.
I know there is no cure for bone cancer, but there really isn't any cure for any cancer. But you can't cut out the bones (especially the ones in the neck!) Can it ever be in remission? Is the pain permanent? In other words, even if your cancer doesn't show up any more in scans, do you still have the pain? I see women here talking about the medication they're taking to help with pain, so I wondered. When I was in the hospital this week, I was getting Lyrica and some other pain meds, and I felt better than I have in months...although I was a bit sleepy.
Well, this note is longer than I intended it to be!
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Welcome Carol, but sorry you're here,
Well the good news is that you don't have bone cancer. Regardless of where bc metastasizes, it's still bc. This is an important distinction since bone cancer is a different animal. As far as your treatment (tx), can you tell us about your bc hormone and HER2 status? That plays a part in tx. I have had bc with a single bone met for almost 3 years. I did have surgery. I have never had chemo, just Arimidex and rads to the bone met. As to life expectancy, no one can predict that. You can look at old, aggregate stats, but that's not you as an individual. My onc has never set an expiration date for me, yours shouldn't either. Wishing you the best.
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Hi Carol and welcome. Exbrnxgrl is so right, what you have is breast cancer than has metastasised to your bones. Just about every doc in the world will quote the 'two year' thing at you, mine included but here I am just a few weeks shy of five years with bone mets so don't let that little number upset you......oh, and I'm still going strong and still doing most of what I did before being dx.
Your doc is still possibly talking chemo to try to knock back what is in the breast itself but your ER/PR, Her2 status will have a huge impact on what your treatment will be after that. The thought on surgery or no surgery is really in debate.........some docs think that 'lightening the Cancer load' by removing what is in the breast is the way to go while others consider it a closing the barn door after the horse has fled type of thing but if you are more comfortable with it gone from your breast push to have that done........after all, it's your body not theirs.
Right now I'm sure you are reeling from the whole dx but be assured, you will feel reasonably normal again but it will take a while............BC dx is such a traumatic thing but to find you are Stage IV off the bat is seemingly catastrophic. Your thoughts are going to take you to some really dark places but if it all gets too much please don't be afraid to ask your doc for some meds to help get you through and keep coming back here to let it all out to others who know exactly how you feel.
BCO is a fabulous place to make friends, find support, cry, vent, learn and just chat. Ask any question and it's pretty much assured that someone has had or has heard of the same thing or something similar so can answer you.
Love n hugs. Chrissy
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Thanks, exbrngrl and Chrissy. You may think I'm crazy, but I'm actually not reeling from the diagnosis. I was suspecting it after all the pain I was having and after a lump was discovered in my breast. Also, I am 67 years old and have already thought about life and death. I made peace even before the diagnosis with my mortality. I have no young children, just one son who is 24. Believe me, though, it's not that I don't want or need the support. If I didn't, I wouldn't be here! My son is in college. He should be done, but he is in the National Guard and took time off for basic and advanced training and then spent some months in Iraq. Anyway, he just came home today for spring break and I had to give him the news. He was upset at first. But I told him that people who've been diagnosed with cancer can live a long time, so I don't want anyone being mopey. I told him that some people don't appreciate my jokes about it.
He said, "Wait...you said it spread to your bones, right?"
"Yes," I said. "Why?"
He said, "Didn't the doctors find that humerus?"
After that, I knew he'd be okay.Knowledge and humor go a long way.
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I agree, the "two years" is an outdated number, if it ever was accurate in the first place.
I've told this story on this board before, but when I was diagnosed with mets, I was considering surgery to repair my collapsed vertebra, but I told my doc that if I only had two years, I didn't want to spend one of them recovering from surgery. He looked at me and scowled.
"Two years! What makes you think you only have two years! I have patients right now with what you have that I've had for 15 years!"So there! There is no expiration date on any of us.
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Carol so glad that you are at peace with your dx and vey glad your son will be okay as well. Personally, I feel being at peace with something somehow makes it a lot easier.
Love n hugs. Chrissy
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I wondered about that two year prognosis. I guess they want you to be prepared for the worst, huh? Here's what I know about the type of cancer I have. It's the "good" kind - slow growing, non aggressive. I forget what that is in terms of HER. It's also ER/PR positive. That means it responds well to hormone therapy, right? Keeps it from coming back or something? I know they wanted to shrink the tumor before removing it, but I don't know their game plan now. I was guessing that they want to see how I respond to the chemo. I am still getting chemo and am supposed to get my first treatment on Monday. I want the tumor out. Cellulite makes me lumpy enough. I don't need a tumor making a big lump in my breast. And it itches. Is that bad? Normal? Weird?
Thanks for the warm welcome. I'm looking forward to making some new friends. I hope to give as much support as I get!
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You know, that's why I think I have never had any big freak outs regarding my dx. I am at peace with myself and my life.
Caryn
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Being at peace with yourself and your life does make it easier, but I think I might feel differently if I were younger with small children. At any rate, I'm glad I'm not crazy and that you two understand what I'm feeling!
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Carol unless your doc has said the word Herceptin then your Her2 is negative so it sounds like you are ER/PR+ Her2- IDC and yes, it should respond very well to the hormonals. If you were dx with just the BC and not the mets, then yes, the hormonals would help to stop it coming back but there are never any guarantees on that score. What they can and do do as a stage IV is to control the BC but eventually the cancer will mutate and go on its merry way again so it's a slow it down, catch it, slow it down, catch it scenario until you run out of them and then we start on the chemos and do the same thing. Mind you, all this can take a long time.
Yup, we sure do understand......lol....as the saying goes, been there, done that.
Love n hugs. Chrissy
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How tedious! As I said, I'm 67, and up until now, I've been in good health. I rarely got sick and even more rarely got sick enough that I needed to see a doctor. I hate to take medicine and usually forget to take it unless it's pain medication and I'm in pain! This is going to be a real challenge for me. So what we Stage IV's need to worry most about are the evil little mutants. Is that about right? Not that any cancer isn't a worry, but it sounds like once the cancer cells have taken root elsewhere, it is harder to tame them.
I'm just trying to get a sense of how this all works.I'm supposed to go for my first chemo treatment tomorrow.
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CarolB2, if you have slow growing, non aggressive breast cancer in your bones, why is your doctor suggesting chemo? Chemo may not work on fast growing cancer as effectively as slower ones. I have had Stage IV breast cancer in my bones for 2+ years. Oncologists at smaller hospitals in my home state (which bill themselves as "leading cancer centers") have insisted I need chemo. My primary oncologist at Sloan-Kettering says chemo for me would be a waste of time and can not do what anti-hormonal drugs can do and have done. And I have breast cancer elsewhere in my body too. Please don't get pressured into chemo as the only treatment. I consulted with 4 oncologists at top hospitals and none recommended chemo for me. I am not saying chemo doesn't help some people. So I'm not AGAINST it. But it doesn't help everybody and there are many less damaging cancer treatments. I know several women who were assured by their docs their chemo would take care of everything and who were so thrilled to be in "remission" for 3 months, only to have cancer return, or who developed lifelong heart problems or leukemia because of chemo.
If chemo is your choice, then I wish you the absolute best quality of life for many years to come! Two years times 20!! :-)
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