Hi, I have secondaries in my breastbone. I have just been through my third cycle of chemo and am basically struggling with the whole horrible thing - the diagnosis, the treatment but above all the fear.
I am a 42 year old single mum of 3 children 10 and under.
I feel like I can’t keep going without some support from people who have actually been through or are going through what is happening to me. I guess, what I am needing is someone to give me a bit of hope and the feeling that maybe one day I may feel slightly normal again.
Please get in touch if you can help. x
Hello SazM
Welcome to the forums, I’m sure other users will be along to support you soon.
In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
We also have a Secondary Livechat session on a Tuesday evening at 8.30 - 9.30, here is the link if you would like to join in and talk to others who may be in a similar situation.
breastcancercare.org.uk/community/chat
Best wishes
June, moderator
Dear Saz
I am still being treated for primary breast cancer, so I can’t begin to imagine how you must feel. But I wanted to express my sadness at your situation. I do hope someone else in the same position will come along soon to bring you some hope and comfort.
Poemsgalore xx
Hi SazM, sorry you have had such a horrid diagnosis and I understand how scared you must feel. I am a ‘primary’ girl myself (I hope!) but I remember reading this a while ago and thought it might make you feel better:
breastcancercare.org.uk/community/forums/secondaries-inspiring-news-stories/ten-years
You see, even secondaries are not the death sentence we assume them to be. There IS hope. Treatments are improving all the time. It’s not going to be easy, but hang in there, you could well be one of the lucky ones that responds well to treatment.
I’ll keep everything crossed!
On a practical note: It may be worth a quiet word with your children’s school/s you don’t need to tell EVERYONE if you don’t want to - just an approachable teacher or the Head Teacher - information will only be shared with those who NEED to know for the benefit of your children!) That way they can support the children through a difficult time. I only say this because I work in a primary school and we have a family who’s mum is fighting secondaries; it is good the childen know they can talk to someone if they are worried or upset. It also helps us understand if they are finding it hard to concentrate on their school work!! We do NOT share this information with other children, parents or staff that don’t NEED to know, or make remarks to the children that might be upsetting. It’s YOUR cancer though and YOUR children, so it’s up to you what you decide to do.
Just edited post as I see my s in brackets after “school” put a stupid gremlin face in my post. Sorry, highly inappropriate and completely unintentional!
Hi Saz, we have many similarities. I am 42, have bone mets which were found before my bc diagnosis, have just completed EC chemo 2 months ago. I was diagnosed in July 2012, a month before I was getting married. Somehow this went ahead. I was put on hormonal therapy to begin with + rads to my hip…I could barely walk at that stage…the pain was so intense. The tamoxifen didnt stop my mets spreading hence I was put on chemo.
Chemo is really tough and it floored me totally. It musy be do hard going through all this with children and being on your own. Sadly I cant have children now as my bc is strongly oest+ and they have shut all this down. On a positive I responded really well and my lump has shrunk from 4x4cm to 8mm so am technically stable for now. My next treatment plan has been sorted too, letrozole + zometa+ zoladex. Then scans in 2 months to check that this one is working.
My breast care nurse has explained that bone mets is seen more like a chronic illness that can be treated for many years. There are many treatments out there, if you look for the bone mets thread you will find many ladies who can support you and and answer any questions you may have. They have certainly helped me to get my head round everything.
The fear is a tricky one, I find the uncertainty of it all quite hard. I have had counselling to help me with this. Also my friends have been amazing too. My poor husband started married life having to look after me and my family havent coped well at all. I try to stay strong and positive but its really hard to do that as I sure you know. Chemo was really hard, however, now the treatment is over I feel like me again, my energy has returned and I hope to reyurn back to my job soon. I’ll message you so ferl free to ask any questions. I know exactly how you feel. Where are you being treated? Take care,
Mel
Hi Saz
Sorry you have to join us in the secondaries section but there are many of us living with secondary BC for many years and I hope this will help you. We all remember that awful time when we were first diagnosed, I don’t think any of us found it in any way easy and it does take time to adjust. I had chemo back in 2008 when bone mets were first dx and I felt especially rubbish at that time - getting my head around the dx and also dealing with the side effects of chemo. Like Mel I felt better once chemo had finished and my energy returned. for nearly 5 years I was stable, on hormone treatments, but unfortunately I have now had some further progression and am back on chemo, this time an oral one, Xeloda. If you find the ‘Bone Mets -please join in’ thread you will find you are not alone, all of us understand and help ech other out whether its support, information or just a plain rant at the unfairness of it all. It may also be worth finding out if there is any support locally for you, BCNs, support groups etc who may be able to help on a more practical level.
I hope this helps and I will bump the bone mets thread up so you should see it near this one.
Nicky x
Hi Saz,
I’m sorry you’ve had to join us in the secondaries section. As the others have said it is a really tough thing to manage emotionally even before the extra demands of chemo and family commitments, and it can take quite some time to adjust. It does generally get better though. I was under investigation for a long time before my secondary diagnosis due to rising tumour markers, and during that time I couldn’t envisage how life would be worth living after a secondary diagnosis but in fact I’ve had many good and happy times over the last 3 and a half years even though the knowledge of my diagnosis is there in the background (and sometimes the foreground). Counselling helped me too, and I’ve recently been going to some of the local secondary meetups organised by BCC which has been useful as well.
Very best wishes with your treatment and I hope you find some support that works for you.
Tournesol x
Hi Saz
So sorry you have had to join us here but as the other ladies say you will find a tremendous amount of support and information here, a shoulder to cry on, or just somewhere to share your feelings. Even those of us who don’t post that often get a great lift from the forums, it makes you realise you are not alone.
I am a little older than you at 48 and have been living with bone secondaries since 2006, I enjoyed a relatively stable period for 5 years with hormonal treatment but after progression into lymphs in my chest and neck I am now on my second chemo in just over 12 months. I have just had cycle 4 and it is tough but I take heart from the fact that 12 months ago the chemo had a very positive effect and I subsequently enjoyed a treatment free period which allowed me to get back to some normality.
Living with secondaries is not an easy thing but try to stay positive, lots of ladies are here many years after their diagnosis. Even during the chemo when I feel rotten I try to see the positive and enjoy the smallest things, spending time with the family, enjoying a bit of sunshine (even though that has been difficult the last few weeks!) and making some plans for when the chemo is over so I have something to look forward to.
As both Nicky and Tournesol have said it might be good to see if there are any local support groups to help you.
Wishing you the very best with your treatment.
Smartie x
Hello SazM and I’m sorry you have to join us. I was diagnosed with bone secondaries ten years ago. During the last ten years I have had, at times, years of stability. I hope your chemo is working well and you are not having too many side effects. I don’t post here as often as I used to as I have got some ‘normal’ back and at the moment BC is kept in the background of my day to day living. It must be very difficult when you have children so young, my daughter was a young adult. Be kind to yourself. I was in shock, I think, for months after my own diagnosis, it was all 2 steps forward and one step back at first. But we all get there in the end, we all find our own way of dealing with life with secondaries, with the emphasis very much on living.
Best Wishes…x
Hello Saz and welcome to the club that nobody wants to join! I’m 41 and also have secondaries in the breastbone, which were first found 6 1/2 years ago. I was treated with radiotherapy, then had my ovaries out so that I was post-menopausal and could start taking an AI (Arimidex). This got me to NED (No Evidence of Disease), for around 5 years during which time I lived my life absolutely normally (went back to work, learned how to scuba dive, got a promotion…). But the cancer reappeared 18 months ago and I’ve had a number of treatments since then - still trying to find the one that’ll get me stable.
You don’t mention if your cancer is ER+, but if it is, you may find that your consultant will put you on a hormone therapy after chemo and these are generally much easier to tolerate and give most people a good quality of life. And they can be powerful against that cancer!
Also, if your secondaries are contained in your breastbone, you might want to ask about radiotherapy to treat the affected area locally, or you may even be a candidate for a resection of your sternum to have the diseased section of bone removed. Feel free to PM me if I can help at all.
Sending gentle hugs. xx