Metastasis to bones, so scared.
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Thanks ladies - I take it a day at a time. Thank God my son is very close to me and to him going to the movies with his mom is nothing, that's the way to go. So I do as much as I can with him. I live it to the fullest and make memories - - just in case.
Exbronxgirl - thats amazing I went to I.S.144 but went to Columbus and Queens College. The world is so small and this disease can touch anyone.
Glad I am here, making new friends that understand.
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Hi, I'm a newbie to this site and scared! I had breast cancer in 2011 and got the 'all clear' back in June this year. I started getting excruciating back pain and, long story short, they found I had bone mets in L3 spine.
I concur with everything already said here, especially the bit about being more scared this time than I was with the original breast cancer diagnosis. I have just about lost the plot several times. I'm jittery, cranky and less tolerant than normal. I'm usually very pragmatic and laid back, but this has knocked me sideways.
I'm trying to steer clear of websites but very much want to know what the future holds for me in the way of survival time, I want to be able make informed decisions about important family issues.
Where's the best place to look for reliable info?
My heart goes out to anyone else here who is in the same boat, it's a reality check and no mistake.
Any help would be most appreciated.
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Hi Bumpsysmum and welcome. It's really difficult to give you a definitive time frame, not even a doctor will do that and all statistics that you find on the web are really out of date.
Statistically they say two to five years but I don't know about you, but I'm not a statistic! There was a lovely member posting here every year on her cancerversary and she did that for nineteen years with bone mets so it is very possible to live a very long time. I have bone mets and I am four and a half years up and still living strong and doing well.
You are still recently dx with mets and it does take a while to come to terms with it all and until then it is quite normal to have to emotional ups and downs that you are experiencing. We all seem to go through a phase of mourning and the anger and tears are just part of that.
It is recommended by others on these forums that as a stage IV girl it is a good idea to get your affairs in order and then live your life............by doing this it really doesn't matter 'how long' as no one ever knows the answer to that question.
Love n hugs. Chrissy0 -
Hi Chrissy and thank you for your quick reply.
Yes I realise it's the old 'how long is a piece of string' question. Frankly I just needed to touch base with others in the same boat. I honestly feel that most people just don't get it, or don't want to. I do a lot of wallowing in self pity at the moment but I'm getting out of that. I have a great Macmillan nurse who keeps me in line and is very up front with me, bless her. I have no intention of giving in to it, my daughter(39) is expecting her 1st baby in 3 months time and I intend to see her grow up!
Well done you for being strong and motivating others, thank you again.
This seems to be a great site and I will keep looking at the posts.
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Bumpsysmum this is indeed a great site not just for information but for connecting with others who really do know how you feel. It's also a great place for sharing the ups and downs that this disease seems to bring with it but most of all sharing good news when it comes and making some really good friends even though many will never meet any other way than right here.
Please do keep coming here to let go of all those emotions that no one else gets and get support from those who are right there with you.
Oh! Congrats on the the coming birth of your grandchild! Now that is really good news!!
Love n hugs. Chrissy
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Bumpsymum,
Three days after my dx, my dd found out that she was pregnant. It helped to ease a scary situation and gave me something joyous to look forward to. My beautiful granddaughter is now 18 months old, I am back to my beloved teaching job, and I'll be going on a cruise to New Zealand and Australia over my holiday break. Yes, I still have metastatic bc and I still live with it's uncertainties but mostly, I just enjoy my life. It will get easier! Congratulations to you and your dd.
Caryn0 -
Welcome. Have you and your onc made a plan yet for treatment? Once you get that, you will feel more in control, and you will feel a lot better. I've had mets now for about 6 months, and although I am scared, i am doing my part to kick cancer butt and live each day to the fullest. I plan to be one of those ladies who is around for a long time.
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Bumpsymum, The unknown is scary.
I was diagnosed with bc 6 months after everything was okay and excruciating pain by my right scapula dx me with lung mets, liver mets, one lonely brain met that was zapped and now bone mets. So in 6 months I went from nothing to metastatic cancer wherever bc can metastatic to. I had a pity party for about 1 1/2, the way I saw it death was at the door so I might as well just sleep away my life until he finally knocks. But I snapped out of it and once you get your treatment plan and start it you begin to feel better.
Always remember though you are entitled to feel bumbed out, scared, depressed. Don't ever let anyone tell you think positive, snap out of it because people are famous for giving advise when they have no idea how we feel. I have my pity party moments and when they are over, they are over. Life goes on.
My issue now is that evey little ache, bump or ouch in my mind is something new, but I'll get through that too.
My office manager's aunt is 76, she lives in Miami, she works and everything and about a month ago was her 28 year anniversary of living with bone and liver mets. So guess what ladies. This is doable, life is doable. She always tells me I have work to do I don't have time to die. She needs God isn't ready for her yet so she's going to keep on moving.
God Bless her and everyone else on this site. Everyone is in my prayers.
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Wow alilou, that's a wonderful story. Thanks so much for sharing. It gives me such hope, and determination to do all I can.
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Thanks for sharing this story. I have fears every single day, but I try to stay posative and keep kicking cancer butt.
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Thats what I say........No matter what I'm going to keep going, keep fighting and live my life to the fullest. We appreciate so much more. Look at my friend, Dolores, if she would have given up she might have been gone already but she is a fighter and I want to be just like her. If He calls me so be it but if there is something I need to do before I go, I'm going to do it.
Have a great weekend ladies. I am headed tomorrow to Fright Fest at Six Flags Great Adventure, wish me luck.
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HaHa alilou, with stage IV cancer nothing else seems frightening anymore. Have lots of fun!!0 -
All,
Thank you for your encouraging words; I relate to everyone that is startled by the diagnosis, and comforted by those who have been on this road for awhile. I am also recently diagnosed. Bone mets in three spots. I still can't believe it - these last few weeks have been so surreal. Like I am watching a movie yet I am in the movie. But life is going on, and I get strength from all of you; hugs to you all! I've started medications and have new routines - like reading these posts!0 -
I'm so sorry, but I know exactly what you're going through. I was having hip pain for the last 6 months or so, went in to my clinic because I thought it might be sciatica, had the doctor (not my usual one) poke at me a bit and declare it bursitis. I was at an appointment with a different doctor the other day who, when I was telling him about this, hoping to get a referral for a cortisone injection, said that there's no way it could be bursitis and what did the MRI say? I told him that they never gave me an MRI. Well, we scheduled one for yesterday, and I got the call later in the day that I had metastatic lesions in my bones. Now we are scheduling a PET scan for next week, and I have been having panic attacks, I can't sleep, and all I can think about is how I do not want my son to grow up without his mother! (He is 7 years old right now). My original BC was triple negative, so I also don't feel like I have any hope for cure or long term survival. In all honesty, the entire left side of my body just has not felt good for the last couple of months, and I have been having a little difficulty breathing from time to time. I am fully expecting to find that it has metastasized to other bones and to my lungs, maybe to other internal organs. Trying very hard not to assume the worst, though.0 -
Amyluya, I'm sorry you have to be here with us. I know it is all super scary right now, but try not to jump to conclusions just yet. Wait and see what the scans say. I went through this a few months ago so i can totally relate. I was so scared I was almost planning my own funeral. But then one wise lady on one of the boards told me that many many woman live long long time with bone mets. Just know we will all be here for you no matter what. Good news, bad news, laughter tears, screaming fits and all. Feel free to ask any questions you need to ask and vent as much as you need.
Michele0 -
Hi Amyluya.......so sorry that you need to be here but welcome. Finding bone mets makes your heart sink and your mind go directly to your mortality.......this is very normal as we all want to live to be old, grey and toothless, see our children grow and reach their potential as young adults.........this is still possible.
Bone mets are the easiest of all the mets to control and a lot of docs treat bone mets as a chronic condition.......you are right though, there is no cure but you can live a long time. If you hang around here, you will find some wonderful women who are very willing to share their stories, their ups and downs and answer any questions you may have........and by the way, there are no silly questions here so ask what ever pops into your mind.
Love n hugs. Chrissy0 -
Chrissyb and micheleboots, thank you so much for your encouraging words. My oncologist called me last night to tell me she would fit me in today for an appointment. I am assuming that we will be discussing options, scheduling PET scans, etc. The most difficult times right now are at night. I can't sleep, so I lay awake and try not to panic. I am trying to stay hopeful and strong, but this whole thing has really thrown me for a loop. My family has already been through so much.....my initial diagnosis 3 years ago, my brother dying of a heart attack two years ago, my dad getting worse with the Alzheimer's.....I just don't want my mother to have to go through anything else! She is truly the rock of the family, and she worries about everyone so much, I just don't know how much more she can take. Then, I think about how devastated my little boy is going to be. I can't give up, and I will truly fight as hard as I can, but I am so insanely terrified right now. I just finished my clinical training for my medical lab tech degree, and I've been looking for a job. It seems there was a reason that I haven't gotten any interviews yet!
Oh, and Iam, I am truly sorry if I usurped any of your post. I was really trying to let you know that you have support, but I certainly wasn't expecting anyone to respond to me!0 -
Amyluya,
I used sleeping pills for the first two weeks after being diagnosed. It was the only way I could get through. Once the shock wore off I was able to drop into bed and pass out without meds. Sending ya hugs.0 -
Amyluya - Not the best club to belong to but welcome.
Take it a step at a time.
I too needed sleeping pills to sleep and sometimes still do because the nights are the worse pity parties we can have.
I can tell you personally I have gone through the bone met, lung mets, liver mets and now brain mets as well as going through testing to make sure no central nervous fluid attack.
I have a 16 year old which is like an old man about now and who I would like to see graduate high school and college. I work because being at home would drive me crazy.
Despite all of this my team of doctors are wonderful. Develop a relationship with them of more than just doctor/patient. With the nurses as well. I have noticed that it makes chemo and radiation so much easier when you feel like you are visiting a friend.
I was diagnosed with E+ BC in 2011. They were wrong. Not only was it triple negative but it was already metastatic so one of the best hospitals in new york city that everyone lives and breathes by screwed up and a small what people like to call a "ghetto" hospital in the bronx has saved my life and given me hope. My liver and lung mets have resolved although as you know our disease is incurable but gone for now is okay with me. They are working diligently on radiating my brain for the brain mets and they will handle the bone mets with Xgyeva once radiation is over.
I don't know if you are a religious person, I am so God and mediation and have a small space for me is very important. don't ever feel like you can't cry, yell, scream because those pity parties are important to keep you sanity. Don't feel like you have to be strong for everyone else because it will eat you alive inside. I know your mom is heavily burdened, unfortunately so is mine but she is the one I talk to and she always gets me out of my funk. I think its because they have become such caregivers with everything else that it makes them feel useful, loved and important.
On a happier note. I have a friend Dolores, she is 76 works in a barber shop in Miami. She has been living with breast cancer, bone mets and liver mets, chemo pills, infusion, and all the other stuff they put us through for 28 years. Not exaggerated. She tells me all the time, God has a job for me and I am going to keep on doing it until he calls me. So don't give up the fight, don't read statistics and if your doctor is not sensitive, change him or her. Name, title, credentials don't cure you. Fight Fight Fight, we are here to help pick you up.
hugs, kisses and prayers
Liana0 -
Liana, love your post. Your friend gives me great hope0 -
Hi new to sIV bone mets only and still in shock.0 -
Maureen, sorry you have to come over to this board. It sucks big time. We are all here for you. I know it is a huge shock right now, but it will get better. I was re-diagnosed in the early spring and it is not so overwhelming now. Once you have had a bit of time to absorb it all and you get a treatment plan in motion you will feel more in control. Knowledge is power and power is control. I see lots of stories of women who have lived many many years with bone mets. But in the mean time we are here for you.0 -
Thank you0 -
quick question. Did you keep working? I'm torn between continuing working0 -
Maureen,
I think that depends on what you want, how you feel and what your mo recommends. I took a 3 1/2 month medical leave during my initial surgery and tx. I was was bored silly towards the end and couldn't wait to get back to work (I adore my job). That was two years ago and I continue to work. I view my job as a calling, so it is very important to me. However, that is just me and I am thankful that I can still physically and mentally do my job. I know there will come a day when I can't so I am just enjoying the normalcy my work gives me in the face of a stage IV dx. Wishing you the best.
Caryn0 -
I continue to work. I go for bone building treatment once a month and I go back to work right after. I would go crazy staying at home. Besides I need the money. I know one day I'll have to stop, but until then, I work. I too love my job. I work retail and other than the odd nut-job customer I love it.0 -
I actually went for a job interview last week! I have just finished an MLT (medical lab tech) program, and I got the call about the interview about a week after finding out about the diagnosis. They're in the stage of checking references now. I'm not sure what I'm going to do, though. It is full time, evenings, which means that I wouldn't see my son after school! As a single mom, I'm thinking that I might have to wait for a different position to open up (even though this is the place that I really wanted to be!).0 -
thanks. I love/hate my job as an engineer It's demanding and fulfilling at the same time if that makes sense. I carry the health insurance too. The mo says work if you want0 -
btw I had an infusion on thurs. And still feel lousy. It's zometa ?0 -
Maureen,
Another factor some people look at when considering whether to keep working or not is the things they want to do with what in all likelihood is a shortened life span, a bucket list, if you will. I am 57 years old and have been fortunate enough to have gotten the education I wanted, traveled extensively, become a mother, grandmother and generally, done all I've dreamed of doing. I would say, that for me, that's another reason not to quit working. I also get a lot of time off with my job (teacher) so although I work very hard when school is in session, I have some good chunks of time off. Looking forward to the winter break for a trip to some place I haven't been, New Zealand and Australia.0
