Just found I have bone mets. Scared and confused.
I am a mother of 2 boys 6 and 15. I had breast cancer in 2009 and had a full mastectomy. I was having lower back pain and NY leg was thriving so I decided to let my doctor know. He sent me for a bone scan and it came back with spots in the bone so the doctor decided to do the pet scan which should the same thing but the organs are clean bogong in them thank god for that. He also did a tumor marking and it was a bit high. I am generally a very active and healthy women. Right know I am sO confused and all these crazy things are running through my head. I just want to be around for my kids. I am so scared. The doctor told me there is no cure for this but he said there is so much treatment out there you could live a long live with this. He said not to put an experatipb date on myself. If anyone is going through somethin like this please help....
Comments
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Hi Stella, yes I know exactly where you ate at and the fear that you have. Take it from me, another bone metster that there are indeed many treatments that can and probably will get you to NED so you can be around for many years to come. I'm three years in and doing well. So far for me my treatments have just been rads and AI's.
Take a deep breath and get ready for a journey that will have you flying high and trying to dig yourself out if the depths. Welcome to stage IV.
Love n hugs. Chrissy -
Thank you for your kind words Chrissy I can't think, sleep or eat I don't know much about this but women like you give us hope. My doctor told me he thinks I will be ok. He changed my Meds from tomoxfin to femara I will continue to get the lupron and in addition to this he put me on hormone Meds. Faslidex and zometa does that sound familiar to anyone. I know each person is deff but I just want to make sure I am getting the best treatment.
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At John Hopkins they say that they treat stage 4 breast cancer like a chronic disease, much like diabetes and yes, with bone mets you can live a very long time...and remember....some wonderful things are happening in research that may wipe it out altogether and in your lifetime! I am not stage 4, but the cancer journey put me on a low dose antidepressant and for the most part it helps keep intrusive, negative thoughts away. So do friends and family and pets and doing things...and a rather existential journey for me, into the nature of consciousness and the universe.
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Stella, I'm sorry to hear about this dx. Your onc is right, there is no cure but there is treatment available that will keep us around for a long time! My onc refers to this as a "chronic condition" and that's how I see it, also.
Best of luck.
Leah
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I'm sorry you are here, but you have come to the right place. The folks here on the stage iv board are awesome.
I was diagnosed in March with bone and node mets. My kids are 6 and 10.
Take a deep breath and keep repeating your doctor's words about there being no expiration date. The first weeks are seriously hard, mentally and emotionally, but you will get through it, and we'll be here to help. -
Thank you all for the kind words. It makes me feel better to know that you are all here to explain and tell us your journeys with this monster that invades into our lives. But I will not let him destroy me. When I was diagnosed in 2009 I promised my boys I will see them graduate college and get married and even help with the grandkids. I know I am strong and I will fight the beast. It's just so hard to wrap my brain around this I am in a days. I just need to educate myself about this dieases so I could ask the right questions. I mentioned earlier in my post about the Meds the doctor put me on I start next week. Is anyone on the same Meds and what do they think. I think am learning more from all you guys than a doctor.
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I'm sorry you have this. I have 5 kids, ages 8 11 12 15 and 18. I want to see my 8 year old graduate from college! I have plans dangit! I am on Femara and a Zometa type drug. Do you have your ovaries still? I had mine taken out, they were doing more harm than good. I still got the mets but I have to think that it kept them from coming sooner.
Good luck
Amy
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Amy I have my ovaries but they are frozen. I get te lupron shot which stops everything in motion. I have been on the shoot for about 2 years. My onc switch me from tomoxfin to ferama. He also gave two other shots. He believes this will work. It has to work I can not think any over way. I don't know how to be strong any more. The only thing that gets me out of bad are my kids. I don't why these things happened but we have to be strong and think positive. I am doing everything can I stop eating alot of stuff I started drinking green tea. I also walk when I am not in pain. Plus all the meds it has to work.
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Stella the meds that you listed are indeed typical of what's given for bone mets. The idea is trying the easier meds rather than chemo first because as a stage IV you will be on some form of treatment pretty much continually. Obviously you are ER+ and the AI Femara is a standard med and very powerful for all it's tininess.
Femara in a drug called an Aromatase Inhibitor and the simple explanation of how it works is that it stops your body from producing estrogen because the body produces it not just in the ovaries but from your adrenals as well as from body fat. The lupron as you know stops your ovaries working, Zometa is a bisphosphinate and is used to help build and strengthen bone and your Faslidex is another hormone blocker and stops any estrogen that may be left from getting to the tumors to feed them.
Tjis explanation of your meds is cery simplified but I hope it will help you understand why you are taking them.
You have more than a fighting chance of being around to see your children graduate. In fact you may well be around long enough to see them married and starting families of their own. None of us have an expiry date stamped on our foreheads and today is no different to yesterday. You like me and many others just now know that the manner of our death will more than likely be from Breast Cancer.............but not today.
Love n hugs. Chrissy
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Stella,
So sorry you bc came back. However, with it being in the bones and not the organs you can live a long life and watch your kids graduate and things. Being active and otherwise healthy will help you body with stand the treatment. Did they schedule a bx to see if you are ER- or were you er- the last time?
Radiation will help with the pain.
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Chrissy I am ER+. Thanks everyone for explaining it to me. I just have wrap my brain around all of this. It's just all so new one day from living a normal life knowing that I am cancer free to finding out that it's back and that it is not curable but treatable. At first I could not accept but know with hearing all the stories I have hope. The word treatable is good enough with me I will take that. Just to know that there is so much med to keep us all going gives me hope. Who knows maybe it will go into remission for a long time I just have to hope. I believe that god will not give you something you can't handle. I have to believe it that is the only thing besides my kids that gets me out of bed.
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Stella, it takes time to wrap your head around the fact that you are now stage IV but believe me, you will and you will find a new normal that works for you. There will be days when you are up and days when you are down but you will find that you learn to appreciate each and every day and what ever it brings. Having this kind of knowledge does seem to make us more aware of everything around us and I call this a bonus. I now really love to sit and just watch the beauty of this world, something I didn't seem to have time for before my dx. Hopefully you will also find your peaceful place.
Love n hugs. Chrissy
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I just get emotional around my kids my 6 year old does not understand but my 15 year old gets it bit holds everything inside. He look at me and said mom you will be around for a long time. I can't except anything else I just want to get the best treatment. I changed the way I eat I try to eat fruit and vegg and fish tryin gprotein shakes I am doing everything possible to be healthier thinking maybe if I do this the meds may respond better. I think I am having a break down I try to stay strong for my boys but it's so hard. My husband is my rock. He feels I will be ok. But I seen him cry for first time in 20 years. I am scared to tell my parents because I dnot think they would handle it. Both my parents are sick mom has very bad diebets and my dad has heart problems. What do I say and how do I say it. All of thus is killing me.
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Stella I haven't told my mother about my stage IV either as she is 86 and not very well herself so I understand your thinking there. I did however tell my siblings with the promise not to tell mom. It's very hard to come to terms with all this but you will and so will your family. It is such a scary place to be but in truth, if you are going to have mets, bone mets are the best to have. Being ER+ is also good as the options for treatment are many and not all of them harsh to our systems.
Your tears will subside, just give yourself time. Once you start your treatment you will feel more like you are participating in the fight. Trying to change the way you eat etc is okay, but believe me, do it only if you are feeling benefit from it as it wasn't unhealthy eating or no exercise or any of the things that we do when we know they are perhaps not the best choices that caused you to get BC or for it to travel and get mets. That just happened and blaming anything you did or didn't do really is just wasted energy.
Your husband will shed tears as will your teenager but not in front of you and your little one is too young to fully understand what is going on he just needs to know that nothing is going to change. They are of course worried for you and are projecting your loss................all understandable........but not necessarily true. You will learn and so will they that to live in the now is a really good place to be and just get through one day at a time and what ever it brings.
Love n hugs. Chrissy
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Stella,
My parents started taking better care of themselves to be around to help my daughter and I because of my disease. Mom even takes her glucose reading now. Call your parents and get both of them on the phone and tell them the cancer came back.
Your 15 year old is probably think some bad things and already googled it. My daughter was 16 when I was first dx and within 3 weeks she had a good understanding of things thanks to google. Let him know you will answer any questions he has. Be prepared if he asks if you are going to die. Tell him with treatment not for years and years.
Crying is normal. I have found that ativan helps to lesson the crying spells. They will probably call it in for you if you call them.
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Stella,
So sorry about your mets. I have extensive bone mets and the day I was diagnosed my onc told me that she had just seen a patient who was just like me who has been living with this for 15 years and still going strong. And who knows what they might discover in those 15 years?
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Thank you all. I am totally confused they say this dieases is treatable but not curable. I could deal with treatable. Diabetic and high blood pressure is treatable but not curable. But what is Ned than??? If no evidence of disease. Does that mean it went away or is it hiding. I am so uneducated about all of this. Maybe if I new more about this I would feel better. Also tumor markings normal is in the 30 right??? Well I have 230 it's high but I seen people with 400 or even 600 tumor markings??? Is 230 not to bad or is it bad??? I feel like complete Moran...
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What I don't get when I was originally diagnosed with BC I had to have a mastectomy, chemotherapy, radiation, I was put on tamoxifin and lupron shot so I could freeze my ovaries. With mets to the bone it's only hormonal treatment I have to take femara, faslodex an zometa. How come the treatment for this seems less aggressive. Maybe I am analozin thus to much. My onc said with treatment I should be ok an he does not see why I can't live a normal life. I could live long but I have to be on treatment at all times.
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Stella, that very little tablet called Femara is very powerful. I have bone mets and the AI's (hormonals) is all the treatment I have had for the last three years. They have beaten back the active cancer and prevented more mets from starting so far. Please don't feel that you are not being treated well because you are. Your Onc is correct when he says that there is no reason why you can't live a normal life and a long one.
Yes you did all you could when you were first diagnosed and had all the recommended treatments but it came back. That is the sneakiness of breast cancer. Unfortunately the experts, as in the docs and scientists, cannot as yet give us a reason why this happens to some and not to others. All we can do is try to accept what had happened, have the treatment that is recommended and try to live as normal a life as possible.
Yes, as a stage IV you will be on some form of treatment at all times. The idea behind this is to slow the cancer spread down as much as possible in order to give us as long a life as is possible.
Hoping the hormonals give you a long successful run as they are much gentler on our system than the harsher chemos.
Love n hugs. Chrissy
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I get everything you are saying maybe when I actually start treatment I will come down a bit. I will know that there are drugs that are going into my system and it will either shrink or make the suckers run. I know am strong after my mastactomy and reconstructions it was a 12 hour surgery I got out of bed in like 5 hours and started to roam the hospital halls they all though I was nuts but I am a fighter. I worked through Chemo and Radation without feeling sorry for myself and took care of my household. But this is all new to me Metastic to the bone sounds really scary and the stupid internet does not help. Have of the crap is out dated and refers to stuff from like 2006 and 2003.. But I am addicted to reading the wrong information. Its funny everyone tells me stay away and stop googleing the wrong information. Every person is different. I just heard of a women who turned 10 years with metastic's to the bone. She is still in treatment and doing great. The problem is I dont know what else is suppose to hurt. Right know with all the stress I think my whole body hurts but I know its in my head. Chrissy you are amazing thank you for all your support and help...........
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Stella, once you start your treatment you will indeed feel better knowing that the meds will get those little brats on the run. I understand your feeling that everything hurts at the moment and you again will find that a lot of that is due to the stress that you are feeling right now.
Useing Dr Google is not a very good thing to do as you well know as the stats that are quoted are so old they are well out of date. Since a lot of them were posted there have been a whole lot of new meds hit the market place and available to us for treatment.
You asked what NED is. NED, no evidence of disease, is usually given when the scans don't pick up any active cancer and the tumors that were there have either shrunk or disappered. At the moment I am classified as NED as on my last scan no new areas of cancer were detected and the large area that was in my bone has almost healed. We all like to get to NED but being stable is just as good I think.
I passed my three year canciversay of stage IV early last week and there was until a couple of months ago, a member who was 19years with mets. It is possible to live long, it is possible to live reasonably normal life, it is possible to forget at times that you are stage IV, it is possible to enjoy each and every day, it is possible to laugh and not just a giggle but a full belly laugh, it is all possible................
Love n hugs. Chrissy
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Hi Stella,
I have a bone met and am only on an AI, Arimidex, and monthly Aredia. The idea is treatment, not cure. This sounds depressing, at first, but you can live for many happy years this way. I has rads to the area of my bone met, too and am back at work full time and feel great. Dr. Google is not your friend!
Caryn -
I did realize that Dr. google is the worst with no information except make you want to drop yourself of the bridge. Every day it gets a bit better to understand. I certainlly no know that this is not a death sentence. Yes this is not curable. (like alot of things such as HIV, epolopsy, asma, high blood presure, diebetics, heart deffects and other things i can't think of) But it is treatable. (TREATABLE) Yes some of the things I mentioned are easier to treat than others so as long as there is medicine I will be around to see my boys grow up. With everything in my life right know I look at things a bit different than I did a week ago. I also tend to stare alot especilly at my kids. It seems like there is nothing more beautiful than that. Oh by the way Chrissy I start my treatment next thursday the onc recieved all the meds (yay). Everyone pray for me that this works. I also called my surgeon onc. (WHO I ADORE) I know he does not treat mets but just to speak with him. I faxed him all my results and what meds my onc put me on. He has to review everything (by the way he is amazing) and get back to me tonight. He is also always possitive but very honest and very good at what he does. Hope he could finally put a smile on my face. This has been the longest and probably the worst week of my life even worst than my first diagnoses with breast cancer. Lots of huggs to all of you I dont know what I would have done without all the kind and honest words. My new friends.......
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Stella,
My son is 12, so I can truly understand where your head is. I've been Stage 4 for almost two months nows (giggle), and while I'm not an old pro (though I am looking forward to being one), I can say that Ativan -a mild tranquilizer - helped me out in the first hard weeks.
Don't be shy about asking your Doc for any meds that might ease your transition into this "new normal". In the first weeks, I took about one a day, usually in the evenings. It helped to shut down the crazy, dark fears. I'm down to about a half tablet every other day.
And, I have learned not to read statistics on this disease. They are usually out-of-date, and not pertinent to my experience.
Also, this forum rocks. Every day, I am impressed with our courage and tenacity.
Jennifer
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Oh Stella I'm so pleased that your onc has gotten all you meds....yay!!!!......I'm glad you have a doc whose opinion means so much to you. I have a doc like that and I know they can feel like your best friend at times.
Give it time dear girl and you will look back on this last week as just another bump in the road. I know it's hard to believe at the moment but you will. Always remember that we are here when ever you need and even if you don't. Please let us know if everything is working well for you and my hope is that it does.
I think we all get the 'stares' at times.........it just seems that we can't take in enough of what we are looking at....whatever it is.
Love n hugs. Chrissy
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Just spoke with my surgeon onc his brother is an onc. He will have me talk with him next week just to make sure I am on the page as my original onc. As far as Meds he said they are correct but he is a surgeon he said it's best to speak with his brother the Onc. But he re assured me that everything should work out he said does suck but there is so much treatment and I should around for a while. He said he exams women all the time and alot have the meta and thy live normal lives some of them have living wig for over 10 years and still are doing right. He did tell me to avoid stuff with estrogen such as soy milk and aNd so many other things products. He explained each med and the purpose if it. I feel every doctor should be like that. Yes it does suck to have mets but after speaking with him I realized I will be ok. I will get treatment and my medical teams is there for me. I just have to do my part try to stay positive and so what I can control by eating right and working out. I have to live in the moment I may dwell on this and 10 years have passed. I won't live like that I was always a fighter and I will fight this. I have important things to take of that is my kids at the moment yes I am sick but I could try to get myself better. but I am not dead. So I have get myself together and start acting like a mom.
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Oh sorry for all the typos I was typing from my cell phone very hard tO do.
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Stella no problems, I could read what you posted. Typing on your cell is a real challenge sometimes and if you have pre-emtive text then you can truly get some funny posts....lol.
I'm pleased that you got to talk to your surgeon and will get to talk with his brother the onc. Knowing all about your meds and how they work gives you much more confidence in what you are doing. Taking control of the things in your life that you can will also give you confidence as there are many parts to this disease that we have no control over. Knowing which is which comes with learning and impliment changes that are needed come from your own determination...............and you seem to have loads of that. Getting your head around all of it is a major task and learning to live your life while dealing with all this can take some time. Trying to do all your normal tasks will help.
Love n hugs. Chrissy
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Chrissy I will keep u posted how the Meds are working. If I start the actual treatment on Thursday when will I know weither or not this medicine the doc ordered me is working? Since I really can't tell i feel good (thank god). I really have no major aches and pains. Time to time my hip hurts not the way it hurted before. I could actually do lots of things that I could do before and the only thing I started was femara 4 days ago. This disease is crazy. I think feel better know than before or maybe I am blocking the pain in NY head. I don't know. With bone mets does it hurt all the time? Or it comes and goes. Is it also normal to pop 2 advils and the pain just goes away like it was never there.
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Stella, with your pain sometimes pain meds like advil work as they are an anti-inflamatory so do work well when it comes to the bone pain. I found with my mets, by the time I was Dx'd the pain was pretty constant but they were also pretty bad at that time and I needed rads to relieve the pain. Earlier the pain would come and go and certainly was not as intense and for a long time over the counter pain meds worked just fine.
You have already started you treatment as your Femara is an Aromatase Inhibitor and will starve your cancer so it will die. The other meds that you will be getting I think you listed at the beginning of the thread are Lupron, Zometa and Faslidex will work together with the Femara to give you the best outcome possible. Both you and your onc will work together to monitor your progress. You by taking note of any new pain or other symptoms or the reduction of the pain you have now and your onc by periodically scanning you.
You may find that you get some side effects from the meds but most of these can be are easily tolerated but others are not so easy. There again, you may have almost no SE's from the at all. It really is just one day at a time and you learning to listen very closely to your body.
Yes please Stella I would love to hear how you are and wether you are doing well with your meds etc. Good luck!
Love n hugs. Chrissy
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