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Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Struggling with secondary diagnoses

Lollipops84
Posted by

Hi, 

I was diagnosed with mets 3 weeks ago and I’m really struggling to come to terms with it still. I start my treatment Thursday which is...letrozole, Ribociclib and denosumab plus zoladex injections which I started a couple of weeks ago. My question is how do you all cope day to day? I find myself having horrible thoughts most of the day and wondering how long I have left, I’m not getting on with my life at all and find even simple tasks take me forever to do as my mind just won’t let me forget even for a second. I have 2 lovely boys who are 10 and 14 and to think I won’t be here to see them get married and have kids it’s soul destroying. I’m sorry for the negative post but I really am so sad and I feel so alone as I have no partner either. 

thank you for reading xx

Ellieellie
Posted by

Hello

First of all you are not going to die anytime soon. Although the cancer is incurable there is treatment available.  I have bone cancer and now spread to liver mets. Whilst it is in your bones hopefully with the treatment you are on they will stabilise you. I know how hard it is to deal with the initial diagnosis, we have all been there and understand how you feel. You have to learn to pace yourself. Dont try to everything the way you used to. Take your time between jobs. Sit down have a coffee  or snooze and then get on with something else.  It does take a while to get your mind around it but you will. You have your children to keep you focused. This is a great site and we have all vented on here at o e time or another. We all support each other here and always here for each other. Please dont feel alone, you can always ring Macmillan and speak to someone. I have a few times and it helps to speak to someone who understands and does not judge.

 I sincerely hope this helps and you can move forward. 

Ellie x

Lollipops84
Posted by

Thank you Ellie. 

im hoping I get my head round this in time and I get positive results from the tablets and that will then boost me. That’s another thing that’s worrying me is further spread, I know we can’t control it and none of us want it but it terrifies me. I also don’t want to know my prognoses as it will set me back but then at the same time I do want know, it’s such a hard position to be in isn’t it. How far are you into treatment now? Xx

Ellieellie
Posted by

Hello

I was diagnosed in 2018 and was put on Palbociclib. I was stable for a year and the  my insurance company would not pay for it any more and the NHS refused funding because of the combination if drugs. They have now since allowed the combination  but I couldn't go back on it as I had a gap. I am now on  oral chemo and my last results have been very good. I will find out more on Friday when I see my Oncologist. I am like you, i do not want to now my prognosis but I think I do know. I just try not to think about it and take each day as it comes and enjoy it as much as I can. Do you work?

Ellie x

Lollipops84
Posted by

Do you live outside the uk? Sorry just wondering why you didn’t get it on the nhs at first? I’ve googled survival rates so I know roughly what they give you but then I read stories on here and other sites and people are into their 6th 7th and 8th year and still stable! My oncologist told me he expects me to do better than most on my meds probably because of my age ( I’m 35 ) what breast cancer type do you have? Xx

wino
Posted by

Hi Lollipop                                                                                                                                                                                    I,m sorry to hear you are having a rough time at the moment with all that,s going on.I remember you saying you were starting your treatment on Thursday and maybe this is not helping with the stress at the moment.The question about how do we cope from day to day is a good one,i for one don,t i try to keep a brave face on for family and friends but when they have gone i cry a lot.I also find myself having horrible thoughts but i am sure we all do at times.I know i am waiting for my diagnosis and can only think negative thoughts but i do understand were you are coming from.I have no partner and live alone has my son is 29 and lives and works away.Never apologise for posting how you feel that,s what we are here for to help each other.                                                                                                                       Take care Xx

Ellieellie
Posted by

Hello

I was told by my ONC that it wasnt available and that it would be better going down the private route. She said it was due but wasnt available. I got it ok privately but the NHS refused the funding request as I was a Fulversant Injection and the NHS didnt recognise that combination. So I was put on Tamoxifen and my cancer spread to my liver. Three months later I found out that the combination  was now available but because I had been off it for three months and my cancer had spread it was decided to out ne on oral chemo.

Ellie

wino
Posted by

Hi Lollypop I hope all goes well today with your treatment take care Xx

Lollipops84
Posted by

Hi wino, 

thank you so much, I feel a bit nervous but I’m sure I will be fine! How’s things going with you? I’ve read your posts on here xx

wino
Posted by

Hi Lollipops                                                                                                                                                                                     I am going to see my old breast consultant tomorrow at 9 30 am,all this waiting is so stressful, she should get the ball rolling and organise my bone scan,but then there is the other me not wanting to start on this road at all. I am just so anxious and still cry a lot when i am on my own.I read one of your posts were you said you did not want to know about your prognosis and i can really understand that. I have been thinking about this a lot,and when i go back to see my consultant after my tests i have decided to say first thing do not tell me how long i have left, just is it treatable, as thats my big concern that there is no treatment available.My chest xray shows bone changes in rib, shoulder blades,and shoulder and like you i wonder where else it could have spread too.                                                              Let me know how it went today and take care Xx

Lollipops84
Posted by

Hi wino,

one thing I can say for sure is it will be treatable there is no doubt in my mind. Bone is the best place for it to go and my breast surgeon told me that from the start! It can be well controlled for a long time, he told me one of his patients is 10 years down the line! Don’t google statistics as they are so outdated and will only scare you. Was your cancer er+? If so you’ll probably be put on similar meds to me which I’ve been told have good results especially Ribocliclib which I’m starting today. Please don’t worry yourself about it not being treatable as it will be I promise you that xx

Puppylove10
Posted by

Hi,

my mum has just recently been diagnosed and I’ve been doing some research (positive only) I found some YouTube videos of other people who are a bit further into the journey. I found them quite reassuring to watch. If and when you feel ready I would recommend a watch. This particular story I found helpful- https://youtu.be/kdPQA4hv1sY

sending you best wishes! X

wino
Posted by

H Lollipop                                                                                                                                                                                      Thank you for the last message,i felt i could breath a little easier after i read it.Yes my breast cancer was er+and i have heard of Ribocliclib. I will most definitely not be googling anything about the condition i am to scared.I hope your treatment went well today,i will let you know how things go tomorrow. Take care Xx

wino
Posted by

Hi Lollipop                                                                                                                                                                                                                                                 Just got back from seeing my consultant, he did a quick examination and thought he felt a limp under my left armpit,so had a scan right away and thankfully there was nothing to worry about so whoooooooo.He is now fast tracking me for a bone scan and ct scan, and then we will meet to discuss the findings.He did ask what was worrying me i said secondary bone cancer and that i know its not curable but hopefully treatable, he then said is two previous patients were 10 and 8 years respectively in remission. Then told me to stay positive, if only i could. Did you start your treatment yesterday ? Hows it going Keep calm Xx

Gsd Rule
Posted by

Hi lollipop84, I have lung cancer, spread to lymph nodes, femur bone and spine. Before bone cancer was detected I had been due for chemo then targeted radiotherapy. Now not an option, started immunotherapy 2 weeks ago, so far, so good, oncologist not ruling out radiotherapy down the line. I sometimes feel like a weeble as I maintain positive (mostly), I get knocked down, but every time I get back up. Every day is a new day and a new day to fight so I keep going. Not always easy, but I refuse to give in. Don't Google statistics, out dated and as for prognosis there are people I've met on lung site given 3 to 6 months and that was 4/5 years ago. Don't ever be scared to come on here, share your thoughts, worries or anger, we have all done it and will all support you xx

Take care and stay strong xx