I have breast cancer, but have recently been diagnosed with bone cancer in the back. As a mum of two young children, I am finding it very hard to cope with mentally. Has anyone got any tips?
Also I have been having chemo but have not had a masectomy, as I think the consultant thinks it is a waste of time. Has anyone else had chemo first without a masectomy?
I’d appreciate any help on how to deal with all this.
Becky
Hi becky
So sorry you have to join here on the secondaries board, its very very hard. Were you diagnosed with primaries and secondaries at the same time ?
there are other ladies here with young children, my own son is 12 and I have liver and bone secondaries, just finished a course of taxotere and really feeling pretty reasonable once I get through the next few days that is. It will get a bit easier when you have a distinct course of action, I think that the bone strengtheners that I have been having are very effective- has your onc mentioned them ?
there are many ladies here who are years and I mean years on with bone secondaries and doing well. I wish I could give you a good tip for how to deal with it but I am still trying to figure it out myself! I think the only thing that has really helped me is staying busy and active.
its not unusual in this position to not have the mastectomy, perhaps one of the others will come in and tell you some more about that.
love
cathy
Hi Becky
Hope this story helps. A friend was disgnosis with BC and secondaries to liver and spine. They said they would not do a mastectomy, she had chemo great results so they did a mastectomy and re construction at the same time. 18 months later her scans are all clear and she continues on Heceptin and is doing well.
Geraldine 45
Hi Becky
Sorry about your dx no wonder you are struggling. Im sure one of the younger mums will pop on and give you some advice soon.
egarding the mastectomy I think it depends on the area, onc, etc, some ladies have it before chemo and some after. I had mast first and have just started 6 FEC. But several ladies on here are having chemo first then surgery.
Sending hugs
karen
XXX
Hi Becky – so sorry to hear your news, but it’s good that you’ve found your way to this forum, as there are lots of us with secondary bone cancer (where breast cancer has spread to our bones) who can give you information, advice and support. I was diagnosed with bone and liver mets (metastases = breast cancer tumours or activity outside the breast) in October 2003. Initially, I had some radiotherapy to deal with pain, and my oncologist prescribed a bisphosphonate (drug that supports bones against tumours), an aromatase inhibitor (to reduce the impact of oestrogen on my very oestrogen-receptive breast cancer) and an oral chemotherapy drug called capecitabine, to deal with my liver mets. I’m very lucky that the treatments, combined with great support from my oncology team, local hospice, my partner, friends, family and a fabulous “virtual” support group, has enabled me to live a fairly “normal” life since my diagnosis.
I’m sure that many more of us will respond on this thread, and I hope you gain some reassurance from us that there are treatments that can help you. Please also have a look around the BCC website for information on secondary bone cancer, and you’ll also find excellent info on the Cancerbackup website. Finally, you know that BCC and many other charities have help lines, where you can ask any questions and know that you’ll get the answers you need now or in the future.
Marilyn x
Hi Becky,
I am assuming that when you say bone cancer in your back you mean secondaries (mets) in your bones? I know when we first learn that our cancer has spread it is devastating and does take some time to get your head around it. But these days bone mets is so much more treatable. I don’t know if your onc has suggested any treatment as yet but generally bisphosphonates are the usual way to go. There are several different names you will here - such as ibandronic acid (this is a tablet form), then infusion ones most commonly in use are pamidronate and zometa. I have had very extensive bone mets for 6 years now and am on pamidronate. I find I am reasonably mobile and pain free and with those drugs have had a marked improvement to when I was first diagnosed. If you have a lot of pain then they can do radiotherapy to the area. This can be anything from 1-5 sessions I think. You will of course need to be careful with young children with lifting and bending, but that will depend very much on which area of your spine is affected.
I also had only chemotherapy and radiotherapy when I have my first breast tumour. It was so successful that the tumour (5cm) totally shrunk. Often they go for chemo first on larger tumours because a) they can see if the particular chemo is working, and b) it reduces the size for surgery. But very often when secondaries are diagnosed it is quite normal not to go for surgery. I think it is a bit like closing the stable door after the horse has bolted!!! But worth talking further with your oncologist or breast care nurse.
Dawnhc
xxx
Hi Becky
I am sorry to read of your recent diagnosis, I hope you are finding the forums helpful and supportive. As Marilyn mentioned the information on secondary bone cancer I thought I would include the link to follow to find this, it is breastcancercare.org.uk//docs/secondary_breast_cancer_in_the_bone_0.pdf.
Breast cancer care also have a helpline where you can talk to someone in confidence about your worries and concerns. Everyone working on our helpline either has experience of breast cancer, or is a breast care nurse, and has an excellent knowledge of breast cancer issues. They number to call is 0808 800 6000 and the lines are open Monday - Friday, 9am - 5pm and Saturday, 9am - 2pm.
I hope you find this helpful
Kind regards
Sam
BCC Facilitator
Hi,
Hope my experience helps to calm your fears.
I was diagnosed with tumours in my spine 3 weeks after my BC dx.
They originally found my lump and planned surgery but because I had terrible back pain I was forced to wait till I had a CT scan. As the tumours they found proved to be close to my spinal cord I had to have quite a bit of radiotherapy. This, along with the fact I was very ill, stopped the surgery for quite some time.
That was 9 months ago and since then I have been prescribed Arimidex and Bondranat only, no chemotherapy or surgery.
Recently I have had an ultrasound to my breast and the lump has shrunk to 2 “small foci”.The breast surgeon was very pleased and said surgery was not necessary .This has reassured me immensely.
We have a secondary diagnosis which is not going to go away but I am greatly relieved that Arimidex has spared me the trauma of surgery. I feel lucky in that respect.
Thoughts Ruftikins
Hi Becky, I’m sorry to read your news. I was diagnosed with breast cancer and bone mets in 2003. I have never had a mastectomy and the cancer has been controlled so far with hormonal treatments and bisphosphonates. It’s hard to get used to living with a secondaries diagnosis and years on from my own diagnosis I still have rocky times.
This is a very supportive forum though and at the moment several meet ups are being arranged here…I have found talking to others in the same boat such a help.
Belinda…xx
Hi, Becky
So sorry to hear you feel you’re not coping too well at the moment. That feeling will pass, and you’ll make “friends” on here with other young mums, as well as us older ones.
I was 55 when I was dx with breast cancer and bone mets. That was in late 05. Because the tumour under my arm was so large and I’d practically lost the use of my left arm because of it, I had chemo (Epirubocin) for, I think, five months before the mastectomy. Within no time at all, I was able to use my left arm again.
At the time, the prognosis wasn’t good and I was told by the oncologist that two years was a good lifespan once it had spread to the bones. I immediately had a good clearout of all those old knickers and bras, t-shirts, trousers etc that I didn’t want anyone else clearing out after I’d gone. Oh what joy, what happiness when, the following summer and I found out I was still very much alive and feeling so much better, I had to go out and replace all the clothes I’d thrown out!! Hahaha, the dx was certainly worth it 
New treatments are being discovered all the time. I’d had so much inspiration from reading the posts on this site, and am looking forward to a much longer and happier future than I ever thought possible. You will too, I have no doubt.
Best wishes, Becky and everyone else.
Good luck to us all. xx
Hi BEcky
Like others on here, I am sorry you have had to join us.
I was diagnosed with bone mets in September, after my initial BC diagnosis in July last year…
It *is* a lot to take in, I myself am finding things hard to deal with. However, reading posts by people like Belinda above, gives me a lot of hope. Some women on here have been living with bone mets for several years and are dealing fine.
Just know that anything you feel right now, someone on here has probably felt too - so don’t feel afraid to post how you are feeling (whether good or bad) whenever you feel like it
xxxx
Hi Becky
Sorry to hear your bad news. I too have secondary bone cancer and it was a big shock and hard to come to terms with. This site is very good and people here are
kind and helpful. You can ask any questions or just come along and join in. Your not on your own, don’t ever feel that.
The good news is that lots of people here have been in this situation for many years. It has to be hard with young children, I am sure you will be able to cope.
Hi Becky. I was diagnosed with secondary cancer to the spine just over a year ago, 2 years after my first diagnosis of breast cancer. I sailed through the first lot of treatment depite having a baby to care for, and I coped extremely well mentally and physically. However, when i was diagnosed with secondaries I felt as if the bottom had fallen out of my world and I found it very hard to deal with. A year and a bit later, I’ve almost managed to put it to the back of my mind. I think I’ve got to this point out of sheer stubborness that I was not going to let cancer win. That, and just allowing myself to really feel whatever I was feeling, so if I felt sad or angry then I’d have a cry or a scream or eat copious amounts of chocolate!! It’s hard when you’ve got small children not to think about what might happen in the future and I made myself quite depressed thinking about leaving my son while he’s still so young. In the end I just decided to stop dwelling on what might happen and enjoy what is actually happening now. Obviously you can’t just flick a switch and say I’m going to be happy from now on, I do have to work at it, and I do still have bad days, but the key for me is not to dwell on it and let it take over. I suppose, to summarise, I think it’s a waste of time to worry about what’s happened and may happen one day down the line, and we should just enjoy what we have and have fun with our kids!! Hope this helps a little, didn’t mean to ramble on and on!
Hi Becky
Really sorry to hear of your recent dx - but hopefully you will get a lot of support from this site. I was lucky enough to have 5 years between my primary dx (when I had a mastectomy and then chemo) and the secondary dx last year - liver secondaries rather than bone.
It is certainly very hard to take everything in initially but those really bad days do get less frequent. As Wendycrackers says, do allow yourself to feel as you feel at any one time - rather than how others might want you to feel. Indulge yourself, be kind to yourself, and make sure you have some fun things booked into the diary at regular intervals - having something to look forward to has really helped me keep going. Worrying about the future really doesn’t change anything, so though it definitely isn’t always easy (particularly when you are feeling unwell), living and enjoying the present is the best policy - and accepting the bad days when they come, knowing that tomorrow could well be better.
Take care. Sending you lots of cyber hugs
Kay xx
Hi Becky
You will get used to your ‘new normal’. I was more devasteated to get my bone secondaries dx two years ago than my original breast cancer 5 years ago. I thought I was about to die and leave behind my 3 young children at the tender age of 41. However two years on with extensive spinal and sternal mets i am still working, swimming every day and about to go on my second ski ing trip of the year. I just take things at my pace and live one day at a time. Some days I feel like my bones are too painful to get out of bed but I get up nevertheless. Other days I feel fine. Just listen to your body and be kind to yourself.
Lots of love
Rosdubh xxx
HI Becky
I’m a Mum of a 6-mth old baby at the age of 42 - was dx with secondaries (bones) 2 days after he was born in August 2007 - shouldve been preparing to be leaving hospital when they sent me for scans!!
Had WLE, CMF chemo, rads, 2 years of Zoladex and 5 years of Tamoxifen starting June 2000.
Everything went well and we were given the go-ahead to try for a baby!!
I started having problems in May last year - which turned out to be a spot on my rib, then as the pregnancy progressed,I thought I had sciatica but this turned out to be bone mets in my left hip/lumbar region.
My husband and myself were absolutely devastated - I was totally ignorant about secondaries!!!
My Mum had bladder cancer which had spread to her bones - she passed away 10 days after dx. This was all that we could picture and we were absolutely hysterical - everyone kept trying to calm us down but we just couldnt see past those 10 days!!!
I am now receiving Zometa IV for my bones, Zoladex and Tamoxifen.
Scans in January have shown spread - right hip and a spot about 4" down from nape of neck.
I now have an appointment to have my ovaries removed - I think that the way forward then is to move from Tamoxifen to Arimidex. Dont think the gynae bloke believed me that I was practically dancing up and down at his confirmation of the op - but got to stop that bl**dy oestrogen!!!
I’ve waffled far too much now - but, as has already been said, the girls on this site are great - Belinda was my inspiration when I first posted - I started to see further than 10 days ahead.
I have sorted out a lot of things financially - much to my husbands dismay - but as I said, it could be 2 weeks, 2 months or 2 years - it still needs doing!!! And, I am now determined to be around for longer than 2 years!!!
I am having a bad weekend but this is mainly due to the fact that I had to have my cat put to sleep on Friday - I think that my tears have accumulated and I need a total blow-out!!!
Whereabouts in the country are you?
Please post about any concerns that you may have - you end up worrying yourself silly - but the girls here have so many experiences that you will find great comfort and are certainly not alone.
Love and best wishes
Anne xx
Hi All
Can anyone tell me if you have any pain with bone mets? I have been having a pain at the top of my leg, a kind of soreness mostly while I’m lying down for a few weeks now. I had scans before my chemo which began last June and I was clear (except for a lung lesion which is being monitored).
I am really worried that the pains may mean a spread to my bones… can anyone help
Thanks for your time
Cecelia. x
Hi Beckyh
I’m also fairly new to life with secondaries and can echo what others have said. The ladies here are a real inspiration and always quick to post with their experiences and advice. You’ll find a wealth of information here. I was first diagnosed in Sep 03 had WLE + rads + Zoladex + Tamoxifen. A couple of years later I had a niggling pain in my hip area which I put down to a fall from my horse and it was treated as that. The pain didn’t go away – it was subsequently diagnosed as arthritis. It came as a complete shock – and felt like the end of the world – to find out it was bone mets at the end of last year. I’d been running around Iraq in a flak jacket a fortnight earlier and was just about to jump on a plane to Uganda!
So life has slowed down somewhat BUT only momentarily I believe. I’ve had a total hip replacement + rads + Zoladex + Ibandronate and currently having FEC. I am beginning to learn patience and that my body tells me exactly how much I can do. I can now walk unaided without pain, ride my bike, play with my godchildren and am about to get back on my horse again and start training for the competition season. I know it’s a cliche but I enjoy each day at a time. I don’t feel there is any point in worrying about the future as it impacts on the present and that is just a waste. It takes time to feel like this but you’ll get there.
Cecelia – I had a huge amount of pain with my hip before my dx – a deep agonising ache (worse at night) but as I thought it was arthritis I kept active. I don’t quite know how when I look back! It’s always worth talking to one of your team to ease your mind if anything. My bone mets weren’t discovered until I had an MRI scan, I had every other sort of X-Ray. My pain was excrutiating but I’d obviously been living with it for a long time and the mets were fairly extensive in the area. I think I am a good lesson in getting things checked out sooner rather than later.
Thankyou Humphr 10. I’m so worried, I’m going to have to get it checked. it’s more a feeling of discomfort than actual pain, it’s kind of like soreness. I had a very similar pain on my side before DX with breast cancer so I’m really fretting.
I’ll be sure to mention it to my nurse.
Thank you
Cecelia. x
Hi Becky
I have just registered with this forum so this is my first post. I can wholeheartly identify with the feelings you are going through and am sure that you will gain a lot of comfort and support through this website as I have done by reading other peoples positive stories.
I was diagnosed with bone mets to the left wing of my pelvis in January 2007. I was originally dx with BC in July 2003, had WLE followed by 6 x FEC and Rads. When I went for the results of my annual mammogram in July 2006 I said I thought I could feel a hard area where the original tumour had been. I was assured that the mammogram was clear and that this was probably scar tissue, however when my Oncologist examined me in December 2006 he sent me for tests which revealed multiple tumours in left breast and spread to the bones. At my request, I had a mastectomy and my ovaries removed and have been taking Bondronat and Femera ever since.
In January 2008 I had another bone scan to see how things are looking and was relieved to be told that there had been no change from the original bone scan in Jan 07.
We have to believe that the drugs available to us today will hold that cancer in check until newer, better treatments are available. I have a son of 8 and daughter of 5 intend to be there for them for a very long time.
Good luck with your journey.
Linda XX