Support

Dear all, I’ve recently been diagnosed with secondary breast cancer - spine and liver and am terrified. I am currently on my second cycle of capecitabine and, so far, no side effects.

After my fourth cycle I am to have another CT scan to see if it has had any effect. I’m only just 44 and so terrified about my future. The oncologist gave me a prognosis of 3 years - if the chemo goes well.

I would welcome any support, advice or encouragement from any of you who are suffering this ordeal. It seems so unfair at the moment and I worry about my family so much.

Thank you
Alison

Hi Alison,

Just read your post and just felt I need to say something.

I had bone metz in 5 places, dx in June, 09. Had 6 months of chemo and now on tam, also having zometa to strengthen my bones.

I am still worried about my future. Just a bit less than before as everything seems to settle down a little bit. I was terrified and is still very jumpy about every little change to my body. Still get very nervous before the check ups and appointments.

As for the prognosis, I chose not to ask. For me, life is a lot more than a number. It’s not about how long we’ve lived and how long we may live, it’s about how we live it. It’s only recently that I’ve learnt to focus on the positive things in life with the encouragement from my onc and the support on this forum. There’re a few of us on here, I’m sure they’ll respond soon.

Really hope capecitabine works for you (and no side effects is great news) and go on, prove your onc wrong! I’m only new, but I’ve noticed a few have lived longer than 3 years since secondary dx.

PM me if you like. Can’t guarantee will have the answers, but always helpful to talk things through.

Take care and take it easy. xxx

Hi, I’m really sorry your Onc has given you a 3 year prognosis.
This passage is from Musa Mayer’s Advanced Breast Cancer book, I hope you might find it more of a hopeful read.*****

Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.*****

My own story, I was diagnosed with bone mets, spine included, 7 years ago. I also received my breast cancer diagnosis at the same time. My hip spontaneously fractured. I was in my early 40’s.
Had a really succesful hip replacement, it feels great, it feels normal.
Since then, thanks to various treatments I’ve had many years of no detectable cancer activity. I too am on Capecitabine, it’s my first chemo after years of hormonal treatments and I feel very well. I’ve been on this chemo for 2 years now and will stay with it until it stops being effective. Another forum member will hopefully see your post as I know she has been on Capecitabine for MANY more years.
A few days ago I was told that my blood reports, liver function, kidney etc were all completely normal. The same as anyone cancer free. I still have no detectable active cancer.
So I just wanted to wish you Good Luck and do keep in touch, you will always find support and help here…(P.S. it’s a good idea to keep your hands and feet well moisturised whilst on the tablets.)
The link here, will take you to some stories of others living well with Secondaries… bcna.org.au/images/stories/pdf/messages_advanced_cancer.pdf

Take care…With Love…x.x.x

Hi Alison - it is a terrible shock when you are told that you have secondaries and I don’t suppose anyone can understand unless they are in the same position. Coming on here has been my lifeline as I have been supported by many ladies in the last 2 years since my dx. You can come on here and moan, be happy, be worried, ask questions and there is almost always someone who can help and has been in the same position. It’s also a place to share your concerns and say things you can’t say to family and friends in the ‘real’ world. Like m1yu I didn’t ask - or get given - an exact prognosis other than ‘you’ll be fine for years’ which is what I cling to. I know there are many treatments available and although I’ve used up one chemo I know there are others waiting for me! Having said that, like Belinda, I carry on my new life pretty much as I did before my mets were dx. I get a bit more tired but that can be down to age (I’m 48 soon) and probably the effects of the hormones on my body rather than anything else. I get on and enjoy things as much as I can, just like m1yu,and the only positive to come out of the whole secondaries bit is I really do appreciate what and who I’ve got in my life and grab any chance to have a good time! It will be a while before you will feel anything like this as you are only just getting to grips with your dx but I as I was in your position exactly 2 years ago I know that you will adapt to this new way and I hope you are here for much longer than your onc has suggested. Take care and feel free to ask any questions.
Nicky xx

Hi Tawny, I am another one with bone mets - got diagnosed May last year in the middle of the chemo for BC. Take a biophospate tablet daily and am on tamox. So far so good. I am seeing my Onc for a follow up appt next week and am going to ask for a prognosis as I have an 11 year old son - however, I am not expecting anything bad! I dont have any pain just the usual aches so I hope you get some comfort from these experiences of some of us xx Lots of love debbie x

Hi Tawny

I am sorry to read of your recent diagnosis. As well as the support you are receiving from the other forum members you may find it useful to have the secondary resources pack as it contains lots of information about secondaries. If you would like to order it just follow this link:-

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/2/

BCC also run two live chat sessions where you are able to talk with others diagnosed with secondaries in ‘real time’ on line. These sessions run on Tuesday 8.30pm to 9.30pm and Wednesday 11.30am to 12.30pm. If you would like to join follow the live chat link on the front page of the forum.

I hope this is helpful.

Kind regards
Sam (BCC Facilitator)

Hi Alison

I have bone and liver mets… unlike those who have posted above. I was diagnosed with bc and bone mets in 2006, spread to liver last year. I’ve not had capecitabine so I can’t help with that… but it is so difficult living with uncertainty, there are no easy answers.
Don’t hesitate to accept whatever support you can, whether on these forums, or a BCN or other professional, or counselling (I’ve found this helpful) in addition to the support of your family/friends. There is practical help too, DLA (try a search on here).

Hi Alison – ditto from me for what everyone else has said here!

As Belinda mentioned, I’ve been on capecitabine for bone & liver mets for over six years, the last four of which I’ve been on a “low” dose of 1000mg x twice a day, two weeks on and one week off. I’ve had great success with this tablet chemo, and have been NED in my liver and pretty much stable in my bones for at least 18 months – I’ve also been taking Aromasin (exemestane, for ER++ BC) and Bondronat (oral ibandronic acid bisphosphonate, to strengthen my bones), Can highly recommend all these drugs – have a few hand/foot side effects from the capecitabine (use lots of creams & lotions!), but nothing that really impacts on my life. And I do take ibuprofen (three 400mg tabs a day) to relieve what little bone pain I’ve had, but nothing more “heavy-duty”.

Hope you also get great results from the capecitabine, and that you’ll continue to visit these forums to keep in touch with us all. I’ve found these forums invaluable for support and reducing the isolation of having BC mets. It’s also been wonderful to get together with other forum members – have a look at the “meet-ups” section of the secondaries forums to see if there are any near you. When we get together, it’s lots of laughter, eating, drinking & (gormless) shopping, rather than (serious) cancer discussions. Also . . . BCC run very interesting “living with secondary breast cancer” day workshops – good for info and also good to meet others in the same boat living near you. You’ll find more info here on the BCC website, or ring the helpline.

Regards, Marilyn (the Xeloda Queen) x

Ladies

I would like to thank all of you who have taken the time to respond to my post. I found out the bad news in January and feel like the news has only just sunk in as, prior to that, I didn’t feel so bad - bar the initial shock.

Every day is different and today I feel fine - off out to dinner with a couple of friends and I know that always helps to take me out of myself.

I hope to keep in contact with you and shall definitely check out the Meet Ups section as feel I would like to have the company of others who truly understand this hideous disease.

Love and best wishes to you all.
Alison

Hi Alison

Just caught up with your thread. I was dx with bc and liver mets at the same time in July 07. I had chemo at that point, taxotere and Fec and then was on herceptin for 2 years. Last Oct there was slight change in liver, and lump in boob growing, so been on capacetabine (xeloda) since Nov 09. I was only 39 when dx, now about to hit 42 next week, and never thought I would see three birthdays, but am doing quite well i think.

I am on 4000mg of xeloda - 2000mg morning and 2000mg at night and my feet have only just started to crack after cycle no 6, but my joints have been quite bad (but i do suffer from rheumatoid arthritis too), so think the xeloda making it worse, but apart from that carry on as normal really.

I have to see onc beg of April then another scan after that to see whether treatment working - think it is.

My Onc wont give prognosis either, as we all react differently to treatments.

Hope you finding some good info on here and comfort too.

Take care and lots of love
Dawn
xx

Hi, sorry to hear of your news. I too was diagnosed with secondiares in the liver, lung, spine and hips, back in August. I was told it was not curable however my oncologist has never said how long I might have and I am too scared to ask, though I would imagine it will only be a few years. I am 42. I am on herceptin now and zometa which I will prob be on for life. Hellish disease and very hard to live with, it crosses my mind every day in life.

Had 18 weeks of taxol and after that I chose to go back to work, for me it keeps me occupied.

Your not alone there are so many people on this site who have lived with what we have for more than 5 years or so, so that keeps me going with hope. I have been looking at a holiday in Africa on safari for early next year, only been abroad once in my life so I reckon sod it you have to do it while you can…

Best wishes to you and your family, I hope all goes well for you.

Hello Alison,

I just want to add my little bit to this thread. I was diagnosed with liver mets and BC nearly five years ago when I was 45. I never asked my prognosis then or now. I have never been anywhere NED but I have generally lived very well for all this time - though have been a bit rough the last few months. (Off to hospital for new chemo regime tomorrow so hopefully will soon be feeling normal again.) My main point is; no one can tell you how long you will live or not, and as you can see, there are many of us here doing well and living to tell the tale.

Good Luck with your treatment, and take good care. You will find plenty of support here!

Jenny x

Hi Alison

You’ve already had much good advice. In particular that no-one knows how long any of us might have - the drs can only work on averages. I was on capecitebine for nearly a year and was NED for some of that time. There are many others though for whom it works for much longer - there is no reason at this stage for you not being one of those women that it works really well for. So fingers crossed for you.

Kay xx

Hi Tawny,
I was diagnosed with secondaries in spine and liver last May. I’ve just finished 6 cycles of vinoralbine and will have CT in June. If it has progressed I’ll go onto the same as you. I insisted on a prognosis although my onc was reluctant to give it me. Despite it being bad I am quite a positive person and know of people with liver secondaries who have lived over 5 years and hope to be one of them. I’ve been to the Penny Brohn cancer centre recently and that helps me stay positive. Which part of the country do you live?
It takes a long time to come to terms with this diagnosis - I’m not sure I have yet - but I am determined not to let it dominate my thoughs and I try to get as much enjoyment out of life as I can.
Best wishes
Kelley

hi
i have liver secondarys diagnosed in dec 09, i had 3 tumours on my liver, i have had 4 cycles of capecatibine and herceptin and the tumours have halved in size, i am determined to zap the little b******, i dont want a prognosis as we are alll so different and individual and as my doctor told me there are some amazing treatments that are new all the time , and i am going to see my babies grow up, take care
galen xx

Dear all, hope you are all managing ok. I’ve had no side effects so far on Zeloda but am crossing everything as I have a CT scan on the 9th to see if it is having any effect. Results through on the 13th - cross everything for me, ladies! Then I’m treating myself to a holiday in Sicily where I lived for 4 years and through my first diagnosis. Will be nice to have some sun, I hope.

Wishing you all well.
Alison