Hi, have been a member of the gang since July 08, but just used the site to pick up hints and tips, last Thur when expecting all clear found out following CT has now spread to bones, left arm ribs and spine awaiting bone scan to find out where else, just feel so useless and weepy, kids 4 and 5 and I just dont know what to do next
Hi Claire,
I have posted for you below links to two of our publications for secondary breast cancer, the first is regarding bone secondaries which you can download on line and the second is for BCC’s secondary resource pack which you might find useful. The resource pack has to be ordered on line as it’s an A5 binder that has to be posted out to you. All publications are free of charge.
Don’t forget, if you need someone to talk to in confidence then the helpline staff are here for you, again calls to the helpline are free.
Bone secondaries: breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/7
Resource pack: breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/2
Hope these help. Kind regards,
Jo, Facilitator
Claire
So sorry you are joining us on the secondaries bit - a place no-one wants to be. I felt the same last year when my bone mets were found - I hadn’t suspected a thing so mine, I would say - was a sledgehammer rather than a wet fish but I think it’s the same thing. It’s early days for you and the shock takes a long time to try to get over and to sink in. I felt ‘better’ about dealing with mets once I had spoken to my onc about my treatment plan and also found this site for inspiration, support and knowledge - all of which I still get. The lovely ladies on here, particularly, with mets, gave me real hope that mets can be treated and you can get on with things. Obviously everyone is different and there are some sad posts on here but please don’t let them get you down. Ask any questions you want and keep in touch for support. You will be in limbo at the moment (I remember it well) but take your time and find out what the next steps are.
Take care
Nicky x
Hi Claire,
welcome to our club the one no one wants to be in!
It is early days and you will be in a state of shock and thinking the worse. We have all done it and somehow once you know what can be done, you will, I promise pick yourself up regroup and get on with your life. It will always be in the back of your mind but once you have a treatment plan underway life will carry on as before.
There are lots of people as you know that have had bones mets for years so it isn’t all doom and gloom.
Please come back and let us know what treatment they re going to get you started on. I have been on pamidronate for over a year and this has controlled my bone mets. I have had them 5 years and they only started to give me problems last year.
Take care.
Love Debsxxx
Hi Claire,
What a blow to think you are going to be given the all clear and then find it has been snatched from you. Like the others say - the shock takes a little while to come to terms with. But you do eventually, the treatment goes on and you absorb it into your life and go on from there.
I always reply to posts like yours as someone who has been kicked by bc a few times round now. First dx in 1990 with several new tumours/recurrences at regular intervals!!! Then dx with extensive bone mets to skull, ribs, collarbone, all spine, hips & pelvis!!! back in 2002. I have been on regular 3-weekly pamidronate and herceptin over the years and that has kept the mets stable. Fortunately until this last year I have had very little pain but there is plenty of help for that in the way of radiotherapy to the painful areas, and painkillers of course.
Do let us know how you get on.
Dawn
xx
Hi Claire
Just wanted to say how sorry I am that you have had to join us, and to think you were going to get the all clear and to be told otherwise must have been a huge shock. Probably take you some time to get your head around, but as the others have said, once you know your treatment plan, hopefully it will start to become slightly easier.
Take care and keep in touch
Dawn
xxx
Hi Clare
I knoww how you feel - you think you are putting cancer behind you now suddenly you are in a different place.
I have bone met in spine after initial diagnosis in June 07.Now age 38 - two boys 13 and 10 - it all seems so unfair.
I have started Xeloda and biophospahate.
Some days I’m fine then others I could cry all day.
Take care
MuddyXX
So sorry to read your news Claire, this disease is sneaky and nasty and just when you think everything is under control in your life in it plows and knocks you on your ass. But, you will find a way to cope with what is happening to you, and you will go through all kinds of emotions in the process; fear, terror, anger, disbelief and many many more.
On the other side of all that, you will manage to deal with it and get on with your life as best you can. I don’t know how we do it, but we do.
Sending you big hugs
Nikki
Hi Claire
So sorry to hear about your secondary diagnosis. I remember how devastated I was when in December 2006 i too was diagnosed with bone mets. Apart from the occasional twinge (which I am never sure whether is the bone mets or normal wear and tear - im 47), I don’t get any problems from them. I have recently had to deal with another local re-occurrence but still hope to be around for some time yet.
I remember when I first got the secondary diagnosis saying that I would never smile again, now when I look back on that it seems so over-dramatic as I have had many laughs and good times since then, and so will you. So take heart, things won’t always feel this bad.
Love
Linda
It is a bugger… 18 months ago I had my news of bone mets, I was totally unaware of what was happening within. Thanks to these girls I soon realised that I could go on living. Since diagnosis I have had lots of options of treatment. Hormone therapy kept it under control for a year. I am now on tablet chemo which, once the dosage was sorted, is ok and I am going about daily life well. I have a 4 year old boy, we have a fun family life and I plan to keep it that way.
I am riddled with bone mets, all through my spine, ribs, hips but have little pain to date.I go to pilates every week and more core strength is the key to supporting my bones and a positive way to help. The positions I can get into now, even though I have more spread is amazing (don’t tell my hubbie!!)
I walked ten miles in the ribbon walk last year with no ill effects and I am off on the BCC yacht Round the Isle of Wight in June this year… I count my blessings and make the most of the time whilst I am still physically able… judging by some of the girls I could be like this for years and that is what I am aiming for.
Hey Ho… off camping this weekend…
Good luck with your battle, once your mind has adjusted to your new circumstances and treatment is in place I am sure you will surface.
Hug your kids a lot, it’s good therapy!
Best wishes
Lou
I was dx in Sept last year and with secondry a few weeks later. When I look back I thought I was never going to get used to it (and that my end was imminent). But recently I have reflected back and am amazed at how adaptable and resiliant one can be. Its really tough going at times and I can get pretty scared (the cold fear, urgh!) but most of the time I live a usual life, including working full time, and am happy and relaxed.
I have two little ones, 15 months and 3.5 years and got to agree with LottieLou, they are great therapy.
Best wishes and hope you okay
Lea
Hello Claire,
So sorry to read your post, you must have been devasted. I remember the feeling, I was diagnosed primary and then secondary liver/?spine within a week. It is all incredibly overwhelming at first, but it does get better. I have young chldren also, they keep me strong.
I wish you all the best. Please let us know how you are doing.
Snoogle
x
Hi Claire
All I can say is I completely know what you’re going through. I’m 37 and discovered a lump in my breast the week I finished a first round of IVF in early March 09. Three weeks later it was confirmed as breast cancer, HER positive, weakly hormone sensitive and large, more than 6cm. At the time they thought there was no lymph node involvement, but the CT scan showed some growths in the nodes but, worse, that I had tiny growths to the lungs. That was about 4 days before my wedding to my lovely, strong, but paraplegic husband (I’m still grumbling about the fact that SURELY we’d already had our share of bad luck, but I guess that’s teh way the world works). It’s incredibly unfair, but even just a month on I’m feeling more positive and, for what its worth, this is what has helped me:
- focusing on what I can do to help my body withstand the chemo (I’m on chemo for four months, then a mastectomy adn full lymph node clearance, poss reconstruction but haven’t decided yet, then radi and herceptin ad infinitum)
- to do this, i’ve seen nutritionists and am going on the Penny Brohn foundation cancer care course which advises on complementary therapy, relaxation and nutrition which I understand people find very useful, I’m going to pilates, running and meditating (all a lot easier if you’ve no kids I know!).
- focusing on the fact that there are treatments now that simply weren’t available even 5 years ago, all stats our therefore out of date and even if they were current, stats show that all donkeys are likely to have 3.4 legs, for example.
- trying to get back to normal and work again, I’ve found it a real relief to get back into my work
- just doing lots of really really nice things and planning things that you’ve been wanting to do for ages (in my case, buying a puppy. Of a breed that lasts 18 years. I guess I’m an optimist!)
I’ve heard stories of women with breast cancer given 5 months to live who are around 5, 8 years later. Of people with a 5% chance of survival who get through. One with no treatment (certainly wouldn’t advise that!). Steven Jay Gould, the famous science writer was given 8 months to live with some form of stomach/ bowel cancer, he’s around 15 years later. This is all serving to inspire me at the moment. I hope it helps you, although I recognise that I’m very new to this whole thing having gone straight from primary to secondary diagosis with unhealthy speed!
So, big, big hugs. It really is terrible, unfair, awful. Particulary if you have a young family. But, it seems that people do and can live with it and live well, and that’s a great comfort - much of it drawn by the lovely ladies posting on this site.
Take care and all the best
Lisa x
Thankyou everyone so much, I’m feeling far more human now and that life must and will go on, (also had a blood transfusion, which helped the energy levels loads)I’m terrible at remembering treatment names but will have an infusion 4 weekly and will also go onto letrozole when pesky ovaries come out over the next couple of months, after all my chemo and 5 doses of zoladex and 5 months of tamoxifen i’m still premenopausal, thankyou all for giving me hope and putting me back on the right track xxx s bone scan this wed, and i found it v amusing appt comes from the department of nuclear medicine - will i turn into the readybrek girl?!
Oh yes! A glow from within! The only guideline you may need to know about before hand is not hug or have small children sitting on your lap for the 1st 24 hours after - might be worth just warning your children. It’s due to them still growing and is just a precaution. Once the dayglo ring of light around you disappears you should be fine 
Hope all goes well, it’s not a scary scan other than the 1st few mins when the plate (if you have this type) comes close to your face. Once it’s passed over that part of you body it’s not too bad and you can move the scanned parts as and when they’ve been done. Glad to see that you are feeling more human - it is such an awful thing to contemplate and there will be many ups and downs - hopefully more ups than downs.
Take care
Nicky x
Hi, I have had a couple of nuclear medicine scans and would recommend preparing your children beforehand. I explained to my children that it would be better for me not to cuddle them for 24 hours after scan - the staff giving the scan should be able to give you more specific advice as dosages for different types of scans do vary. I make sure we have extra cuddles on the morning of the scan and then extra cuddles once the 24 hour period is over. They don’t like not being able to cuddle but they do understand.
Snoogle
x
Thanks for the warning, nothing about it in the literature fom the hospital, just told when I was there to avoid having the kids on my lap or pregnant women (not that we have any of those at home!)luckily because of your advice I’d spoken to the kids about it rather than just springing it on them