Hi Homer
Just wanted to say that I had the whole of my sternum removed and a prosthetic one put in at the Royal Brompton in London four years ago. It was a very big op but very successful as I have had no recurrence (of that cancer!) since. I have developed a new breast cancer in my other breast now but that is a different story. So I just wanted to say that the surgery can be extremely successful and I was NED for four years and still no signs of trouble in that area,
Hope you’re feeling a bit better
Justy
justy
thank you for your reply xxx
i have not heard from anyone else who has had the cancer return in the sternum,
its good to hear the op worked too even though as you say it was not a small op to have.
Can i ask how long you were in hospital for and your recovery time after the op?
sorry you have it back again xxxx
Hi everyone. I was dx with bone mets and primary bc in May this year. I am only on hormone tabs and zometa iv once a month. I have a blood test before each iv to check calcium levels. My onc says that an mx is not an option because he is worried about damaging my chest wall, and if the hormone tabs shrink my lump then that will be ok. I really didn’t have a lot of time with him last visit, so will be grilling him a bit more on my next appt. I am crossing my fingers that I can avoid chemo. I have drawn lots of comfort from ladies on this site, and I am v pleased that someone has started a thread for us boney ones. My mets are in hips and ribs. I was ridged with fear when first diagnosed and still have wobbly moments. I am still unsure what my prognosis is,but there are no real answers to this disease are there.Take care everyone, x
hello
am new to this chat thing- but read your comments about bra’s etc.
I still have soreness/tenderness after my surgery a while ago and sometimes find that a “bra” that I pull over my head- a bit like the sports variety with no catches, gives good support, looks good and is comfy.
Avon do a good one in black up to a large size. their policy is to refund fully if you’re not satisfied - so there’s nothing to lose.
Primark’s bra tops are very flimsy and you might find their vests with added support around the midriff better than their bra’s. they’re about a £5 and hold everything well.
lots of luck with it
Hello Fruitgum,
Thanks for the info, I am going to check the ‘pull over bra’ that sounds like a good idea,I am assuming that as you can pull it over your head, they must be elasticated,ideal!!
I have tried allsorts from quite expensive to really cheap,and just can’t get a comfortable one. Many thanks for your help.
Coomercrab, I am on Tamoxifen and Zometa every three weeks,since May,I am doing well, my tumour markers have come right down,and my pains have settled. I go tomorrow, so hoping my bloods are still going down! I do hope you have good results with your treatment as well. It is very frightening,and we all have wobbly monents, I don’t know what my prognosis is, and really don’t want to know. We just have to get through as best we can, and there is great support on the forums, I don’t know how I would cope without it!
Take care ladies, Maryxxx
Hi Mary,
My mum uses those type of bras and she steps into them as she has trouble putting it over her head, she loves them.
Reneexx
Hi
I’ve been away from the boards for a few days so just wanted to answer finty’s question (although other already have said) about the jaw problems and bisphos. If you look at the amount of active ‘ingredient’ in the IV bisphos it is huge compared to the amount in the tablet form and it is thought that there is more risk to those having the IV type. However, I had to have a tooth out last year and have been on bisphos for over 2 years - not what I wanted but couldn’t be avoided. The surgeon I saw (I was referred to my hospital) is the key dentist there who has to study statistics for the jaw necrosis said that it is a ‘ticking timebomb’ as so many people are on bisphos these days, and not just for cancer. He says that it is completely random as to whether this will develop after a tooth extraction and they cannot predict who will have problems although it is thought more likely to be from patients having IV bisphos. Also it has nothing to do with infections after the extraction so taking anti biotics after any dental surgery will not help as it is the bone not the gum that is affected. I must admit I am having to go back to him in afew weeks as I am experiencing a few problems but keeping my fingers crossed (to say the least) that it is not this complication but something more minor. I’ve been told the necrosis starts almost immediately and is painful but I guess there may be differing degrees of it - but I don’t know.
Just a quick hi to Belinda as well - I fully understand about not being on the boards as much or not at all - I am similar but nowhere near as long as you’ve been on here 
Nicky x
Thanks Nicky - I hadn’t paid that much attention to this issue, and now realise I should have been much more on the boil. I wasn’t given much information about it - just an almost throwaway line from my onc - like so many things with bc it seems it is up to us to do the reading. Fortunately I’ve had very little problems with my teeth, but will be more attentive now. Going to the dentist next week for the first time since treatment started - hope there will be no nasty surprises - and hope all goes well for you too.
finty xx
This is a really good thread, I have been away for the weekend and most of last week, so seem to have missed it earlier. I will certainly start to look out for it. It is also quite useful having information about each other summarised. I communicate with quite a few people on here and can’t always remember where different bone mets are that people have and what treatments they are having.
For those of you that don’t know me. I was diagnosed with bone mets end of April 2010. (primary diagnosis Dec.2006) large area across my hip and hot spots in my neck, shoulder, ribs and lower spine. I also have a soft tissue tumour in my chest. I am currently taking Femara and am due to start Zometa (once every 4 weeks) next week (I have been taking alendronic acid a lower dosage bisphosphonate, a weekly tablet, since last Summer to treat osteopenia.) I also take daily AdCal tablets. I am also due to have a hip replacement, to remove the affected area at the top of my femur/pelvis. I am just hoping that the hip holds out and doesn’t fracture, as I want to have a holiday this summer.
Take care all and keep on posting
Nicola xx
Hi all
Like Nicola, just had a chance to catch up on thread, haven’t read back through posts yet but will do asap. Great threat Flinty good to have somewhere to share experienes, treatments, pool information etc.
First diagnosed in August 08 and with bone mets in September last year - after complaining about pain for 11 weeks and seeing various doctors, onc, breast care consultant etc - my GP advised me to go for a massage!! By the time they scanned it it had done considerable damage to top of spine and I have now to take far too many meds for my liking to keep the pain at bay. Second met diagnosed April after 6 cycles of Carboplatin. Recently asked for a second referral to the Marsden (due to inconsistency of care and onc’s that said different things) and they have recommended a chemo which I intent to ask for and hope to start soon. I am also being considered for a trial (triple neg) but only 10% change of meeting the critea so letting myself get excited. I also have skin mets and regional lumps & bumps. Apart from some pain feel relatively good and still work full time. Just bought a caravan and plan to get away very soon.
All the very best to us bone mets girls and thanks for the thread.
Love Anne x x
I too have trouble wearing my boob and most of the time don’t bother anymore. It’s so heavy and presses on my chest wall. It is noticeable as I have one remaining large boob, get looked at sometimes but I have decided I am not that bothered. I do try to wear it but most of the time I find a quiet spot and pull it out and go without. I’ve have mislaid it several times. 
I have had a set back, just out of hospital. Had neutropenic sepis from my first cycle of Capecitabine - which surprised me as I thought that it was a kinder chemo. Then I was told that I was very close to heart failure as my first Pamidronate infusion knocked out my electrolytes, calcium and potassium. My BCN nurse said she had never heard of that happening before.
I have had 7 days of IV antibiotics and potassium, calcium infusions. The couldn’t find the infection that was causing me problems. I am home now, weak as a kitten but hopefully will get stronger soon. Still talking calcuim twice daily.
My chemo has been put off for two weeks as my white count is still low and we are going to discuss maybe a lower dose or different schedule.
I was fine when I was taking the chemo too, had all the side effects but in a mild way.
I am hoping this was a one off reaction, from the sounds of things its not common.
Best wishes
Paula x
Hi
Just to say I too have bone mets. Brief summary - initial diagnosis June 07 . Bone mets in Jan 09. Feeling ok. On Capcetabine permanently(until it stops working) also on 3 weekly Herceptin. Feel tired and need regular naps. Not pleasing at 40 . Married with two angels of boys aged 14 and 11 and a saint of a husband who puts up with my regular tears for a life thats gone and a new one with a very uncertain future.
Have another big scan coming up- I hate the fear and dread they bring. The drinking the rotten stuff, the hunt for a vein and then the wait - oh my, the wait for results!
So far one bone met on spine 2cm which at last scan was stable. Please God may he have mercy for the next scan.
MuddyXX
Hi Muddy,
I was really surprised to read that you are on capcitabine and herceptin.
I have extensive bone mets since 2002 in skull, ribs, collarbone, all of spine, hips and pelvis - bit of wreck really LOL. but it is all stable. I am only on zometa and herceptin. I wonder if it is worth asking your onc why you are on both chemo & herceptin. Hope the results of the forthcoming scan are all good.
Dawn
xx
Hi
I’m a bone mets person too (although I now have lung + skin mets to add to my collection). I was diagnosed in Jan 2007, since then I have worn out all hormonal treatments, had taxotere, two mastectomys, radiotherappy, hip op and spine op to relieve spinal cord compression. I started on Capcetibine/Lapatinib 2 1/2 months ago. I will be having a a scan shortly too see whether this is doing any good, but I fear the worse as the pain in my spine is getting worse and there is no improvement in my skin mets. Sorry I am not a very good ad for bone mets, more like your worse case scenario but I am still fighting the b*@"d.
Regards
Linda
Hi Linda,
Sounds like you really have had a lot to cope with in the past 3 years. How soon after your bone mets dx did you get the skin & lung mets? I think there are quite a few of us with just bone mets for for a few years but the fear lurks for me that it won’t stay that way. Actually I keep forgetting that for me it has already moved on but it doesn’t have a ‘label’. It is the tumour (not bone related) that is growing alongside my spine. I thought for ages as did my onc. that my pain was due to the bone mets. I am just hoping and praying that the recent rads I had for it will keep it at bay for longer but it doesn’t stop you wondering where else it might be.
Are there others with more than ‘just’ bone mets?
Dawn
xx
Hi Linda
I also have skin mets and lumps in lymph glands at collar bone. My skin mets are alone my lumpectomy scar and under my arm and around my breast. I hate the dambed things as you can see them growing. How long have you had them and are they still on the move or have they stoped at all?
Love Anne x
Hi everyone, Hope you dont mind me joining in, I to have bone mets on spine and ribs, havnt asked how many not sure I want to know, was diagnosed in dec 2005 after hip fractured. Have had 10 doses of zometa and now on arimadex and bondronat, had my overies blasted out and suffer bad with hot flushes, soooo embaressing, anyone else on arimadex suffering from joint pain and stiffness?? I keep my fingers crossed every 4 months when i see onc that all is well with bloods and markers, so far so good, just got to be positive.
Muddy and BoneyL, Hope all goes well with your scans.
Love
Roz
Hi Dawn
My skin mets were diagnosed in April 2008 and 2 tiny nodules in my lungs appeared in June 2009. At my last scan one nodule is now 13mm and the skin mets are all around both mastectomy scars, in exactly the area that I had radiotherapy to. Hows your pain now?
Linda
x
Hi Linda,
Am I right in thinking that most of you with skin mets have not had anything done about them?
When my surgeon saw mine and did the biopsies he said I would have to have them removed but as I already had radiotherapy to the area the skin wouldn’t stand any surgery just to the area of skin mets. I had to have all the skin, fat, muscle etc. removed from a large area - down to the rib cage. He warned me I might have to have some ribs removed as well if the cancer had got into them. It was really scary stuff. Then I had to see a plastic surgeon who pulled at the fat around my stomach area and reckoned he could get enough skin, muscle etc. from there to patch up my chest area. The took quite a large area from just below my rib cage right down to just above my pubic area and then pulled my stomach skin over to close it uop (bit hard to explain really but let’s just say I had a good tummy tuck on the NHS) You all have heard of TRAM flap, well mine was a VRAM flap (V=vertical). It all seemed very drastic just for half a dozen ‘flea bites’. I could have had my breast rebuilt with the flap but I said I didn’t want a reconstrution so it is just a mound of flesh on the area where my breast used to be.
I have strayed a bit from bone mets but I guess we are all dealing with other things as well.
Dawn
xx
Hi Dawn.,
I have extensive mets in my ribs,and a few other areas, could I just ask you, do you get a sensation as if there is a metal cage instead of ribs!!! This feeling drives me mad, it is as if my ribs have turned to concrete!
Maryxx