Hi… I really dont know who else to talk to. I had breast cancer 2 years ago when i was 28 and after a double mx, rads, chemo and tamoxifen I found out 2 weeks ago that it has come back in my bones!!! I am so upset and angry as I feel I did everything by the book and Ive never had a ‘why me?’ attitude but I really cant come to terms with this.
I found many things to be positive about with the breast cancer but this time around I feel so let down. My daughter is now 4 and I am well into my 1st year of a nursing degree and Im beginning to think WHAT IS THE POINT!! I am normally so happy, positive and upbeat but this has really knocked me. Every day my bones ache, even more so since starting the treatment last week. My energy levels have diminished and i can feel myself becoming depressed…
I cant believe it came back so quickly and I am absolutley devastated. I desperately need to speak to someone who can give me some hope that things will be good again and I wont always be looking over my shoulder. Im scared and so so angry with my body.
Thank you… I am trying to be strong and I have a really good supportive family but I cant think of a single good thing that could come out of this and I need that to justify the cruelness of this disease to myself. I have inspired so many women over the past 2 years and given them hope but what is to be hopeful about secondaries??? There is no silver lining and I am struggling to come to terms with that x
I’m so sorry you have joined us. I’m not surprised you are angry - it is a terrible shock and it will take quite some time to get used to it. Do pop in to the bone mets thread - it might help to know there are quite a few of us managing very well. The bone drugs are very effective and generally have very few se’s. I was dx’d with bone mets at the same time as my primary in 09, so I didn’t have to deal with a recurrence, but having finished all my active treatment I am doing really well now with only a little stiffness from the hormone therapy, and hope to soon be confirmed NED. Bone mets can be very manageable.
Julie
Really sorry to hear you are having to cope with this news when you’d hoped that life had settled down to a new normality. Hoping you get treatment started soon. Have you tried the helpline for support as they are very good at talking through emotions and treatments?
Hi, I’m so sorry to read your news. There are other women using the secondary forum who are the same age as you…and younger. It is so very unfair that you are facing all this at such a young age and with your young daughter. This is a very supportive place…I will bump up the bone mets thread which finty started and mentioned in her post…any info you need, support or friendship you will find it there.
I was diagnosed in my early 40’s. I had bone mets right from the beginning. I was diagnosed after my hip spontaneously fractured. This was 8 years ago. Today my bones are in very good shape, I have no bone pain whatsoever, take no pain killers. I’ve had many years where I have had no detectable active cancer thanks to the many treatments available for bone mets. I’ve now had some small progression elsewhere but I’m okay…I feel really well. My story is only one of the many here who are living normal ish lives with secondaries. Love Belinda…xx
Belinda… You are so inspiring. I have been desperate to talk to people who are living full lives with this diagnosis. It fills me with so much hope that I will feel positive again one day. It has shook me to the core and I am becoming a little rain cloud of doom!!! I will definatly have a look on the bone mets forum for more inspiring stories from you wonderfully strong women xxx
I am so so sorry about your secondary dx. You have every right to feel angry and over the next few months you will go through many emotions, please don’t feel you have to go through it alone (I know you said you have a good family but sometimes we try to protect them and leave ourselves to cope on our own), as Finty said there is an active bone mets thread and we’ll support you all we can.
I know what you mean. When I had my primary dx I had everything flung at me and even opted to have my ovaries removed, but I could cope with that as I was aiming at a cure, at beating cancer. I thought I’d done it too but over 10 years later found out I’d got bone mets! It is extremely difficult and very scary to try to get your head round the fact you are no longer curable BUT you do manage to adjust to a new normal. There are treatments out there and there are lots of women living relatively normal lives for many years so please don’t give up all hope.
My bone mets were found last March after many many months of complaining about pain to my GP. I had some rads to a particularly troublesome rib/spine tumour, I’m on hormones and zometa and although I do take painkillers I’m much better than I was and life is good.
I hope that these forums will give you some hope, please let us know how you get on. Sending you a big cyber hug.
Julie x
Hi again Julia, it’s such early days for you…it takes a while to get your head around a secondary diagnosis. I just went with the flow at first, was angry, sad and then, later, I began to feel hopeful. I was in a daze at first…but we all, somehow, go forward, it takes a little while but we all get there. In my 8 years of living with bone mets I have met and got to know some amazing women. And BCC posters Dawn and Val, (Scottishlass) have been living with their bone mets for longer than me. Take Care…xxx
Hi Julia, I am sorry you have to join us, this has obviously been devastating for you, not easy for anyone but especially at your age. Like you I have recently been diagnosed with seconderies to bone and my whole world fell apart. I experienced the whole rollercoaster of emotions trying to make sense of it, being angry because I had done everything “right” and thinking that this was the end for me, but since then I have started treatement and found the women on this forum who have lived for a very long time with this who offer support, hope and inspiration, and have a very good quality of life. I have now come to believe that this can be the case for me too. My Onc told me that she views this as a chronic disease that needs to be managed and thats what they will do.
I hope you can find the support you need on here in this dark time to help you to come to terms with this.
I am sorry to read that you have a new diagnosis, in addition to the support you have here if you feel it would help please call our helpline where you can talk through your feelings with someone in confidence. the lines are open 9-5 weekdays and 9-2 Sat.
Thank you Pumpkin… I will keep your kind words in mind next time I feel like screaming at the world. Goodnight and godbless. Hope to catch you again soon xxx
I am so sorry to read your post. It is good that you have come to the forums because here you will find hope and support. I think at this stage of the diagnosis it is quite hard to come to terms with what is happening to your body. But I think as you inspired and helped others with your primary dx you will come to terms with this. I am one of those who has been living with breast cancer for a good many years. First dx in 1990 with several recurrences over the years and a dx of bone mets in 2002. It didn’t give me any warning - but when I told the onc I had severe sciatica it rang their warning bells!! After all the scans it was found to have spread extensively through my bones. I thought within weeks I would be in a wheelchair, and a matter of months I would be dead! What a pessimist eh? I have had bisphosphonates (bone strengthening drugs) every 3 weeks since that dx and also found to be her2+++ so had herceptin all that time too - costing the NHS a fortune. My hubby and I run our own business - a very large bonsai centre and throughout the years I have been able to continue to work. Albeit I do a lot less of the very active stuff. Recently (past 3 years) for me things got a bit worse but this was not bone related. I had a norty little tumour plant itself alonside my spine and wrapping itself round the nerves exitting the lower spine so pain has been a bit problem.
I hope by reading all our posts you will see that many of us live well with our bone mets - and life does go on. It is tough for you at such a young age - even younger than my own children and I know I would be appalled if they had to go through this.
Hi Julie
You might well have found other threads already - the two that have a long history about bone mets are
“re: bone mets - please join in”
and “re:liver and bone mets” ( some posters do just have bone mets on this thread)
When you open up Community - look for “search” above the postings and once you’ve opened them you can save then for future use.
Hope this advice along with others are helping you
Fran
Anger is good. I was very angry with my primary diagnosis and then my secondary 18 months later. I am 51 now with 2 teenage children and am 4 years living with cancer. My secondaries were diagnosed in October 2009 in my bones, lungs and liver and I am still here and doing well, cycling, walking and living well. Yes, I get tired more easily but that could be age as well.
It is hard to come to terms with a secondary diagnosis, and I am not sure that I have yet, as when I am well I find it hard to believe that I won’t continue to be so. It is a very surreal experience I have found, almost like you are talking about someone else. On one hand you know what the reality is but on the other you cannot envisage that you will be one of the unlucky ones.
I am lucky in that I have responded well to each of the 3 chemo regimes I have had and I remain hopeful that there will be a drug that will keep me going for a good while longer. There are new drugs being developed all the time, keep your glass at least half full if you can.
Sue - you are such an inspiration with your cheerful acceptance, and you have summed up my feelings exactly with your comment about how surreal it can feel, and it being like you are talking about someone else. I feel so well at the moment that I have to remind myself it may not stay that way - I don’t feel as though I have an illness at all, and am even staring to get a bit irritated at people asking me how I am all the time. Julia, I hope this is some reassurance that it is possible to get on with life with bone mets - it will never be the same, but it can be good.
Sue I’d just like to echo what finty has just said - you have pretty much summed up how I feel most of the time! What a wise person you are! Sometimes when I feel fine I wonder if they must have misdiagnosed me, but then I have another PET scan & there are all the mets, still there, but fortunately stable! We are off to Wales tomorrow with the rest of our family (12 of us!!!) for a week of happy fun & hopefully not having to think of this rubbish disease!
Julia - I completely understand & sympathise with how you are feeling as I was in the same place this time last year. It seems hard to believe that you will feel better shortly & once your treatment plan is sorted & started you should start to feel more comfortable too. I remember my onc telling me that her aim was to get me off painkillers all together & at the time I couldn’t imagine that would be possible, but now I rarely take anything & I feel mentally & physically in a much better place now than I was then.
Take heart from all the wonderful ladies on here & just take one day at a time.
Julia
Just to add my good wishes to you and your family and to give you some hope after your secondaries diagnosis. 3 years ago I thought my world had ended when I got my secondary dx - it had spread to my bones like yours has. These forums have given me great support, inspiration and advice since then, so you have come to the right place! No-one knows how you feel right now other than people in a similar position - like all of us. Since my treatment of 6 rounds of chemo I have been on hormone tablets and bone strengtheners and I certainly felt more able to cope once my treatment was sorted and underway. Since finishing chemo 3 years ago I lead a pretty much normal life, I did work up to earlier this year when my job finished and also did so during chemo. I have no pain or discomfort and, as the others have said, live in a slightly surreal world of having to remind myself I have secondary BC. I hope all of our comments help you come to terms with your dx, it is a bl**dy awful disease but with current treatments there are many of us ‘living with secondary BC’.
Good Luck and come back for support, questions, advice etc.
Nicky xx