Just found out about 3 weeks ago that it has spread into my spine. Had to have an op as it had compressed my spinal cord, so in pain physically and emotionally. On the plus side(!) it’s only in my spine and hasn’t spread anywhere else. Radiotherapy to start 5th Jan.
I feel really down and cry all the time. My partner is good but I don’t want to be crying all the time. Can’t write any more…it’s making me cry now.
Hi there izmark
I understand that this is a very difficult time for you. Coming to terms with a secondary diagnosis is very emotional and your tears are completely normal.
I am sure you will receive lots of support and information from other users, but in the meantime, I just wanted to remind you that the Helpline are great and very good listeners.
Do give them a call if you feel like talking.
0808 800 6000.
They will be open tomorrow at 9am.
Kind regards.
Louise
Facilitator
Hi izmark
So sorry to read your news. Hopefully once your treatment starts things will settle down for you. It is hard emotionally coming to terms with secondarys and spreads. I can imagine right now you are peering out of a black hole.
Take care and I hope your radiotherapy works wonders for you. Try to enjoy your Christmas, might be hard, but need to stay strong.
Take care
Love
Dawn
xx
Dear Izmark
just wanted to tell you you are in my thoughts. Will light a candle for you at christmas
xxx Monica
Hi Izmark, Just to tell you I am thinking about you and am sorry to hear your bad news. If it is of any comfort to you I also have bone mets, but I have them in my spine and also in my pelvis ribs and thorax. I do not write this to frighten or upset you but to hopefully give you some reassurance as I have been diagnosed for over 10 years now. Radiotherapy helped me, plus new drugs, including painlkillers and there are chemo drugs that can help too. If I can answer any questions feel free to ask either on here or by sending me a private message if you prefer. I thought it was the end when I was diagnosed with mets and never thought I would still be around today…but there are people just like me who are plodding on…I hope this helps a little…but it is a lot to take in at first. I remember it well. Love Val XX
Hi Izmark
You have come to the right place - we ALL know on this part of the forum what it is like to get a secondaries diagnosis. It is the worst thing you can be told about your BC and one that I don’t think any of us expected or, definitely, wanted. I felt able to adjust once I had my treatment plan in place and having finished chemo about 15 months ago am feeling fine and able to carry on in the new ‘normal’ life I have. I have bone mets in my hip and a small spot on my spine so have been lucky enough not to have any pain however I know that this can be sorted as Val says. It will be a very difficult time right now, without the added ‘bonus’ of Christmas but try hard not to let your mind race ahead of you (so much easier said than done, I know) and wait until you have spoken to your oncologist about the treatment plan. Make sure you know the ‘right’ questions to ask so you are comfortable with what is happening and how it will help you. Come back on here at any time -we’re all here to help 
Take Care
Nicky
Thank you all so much for your replies and kind thoughts. It really does help to know I am not the only one and that there is support out there. I haven’t cried yet today…but it’s still early! I sound really negative and keep trying to haul myself up mentally. The Macmillan nurse popped in to see me yesterday and was very good. I know I will get through this somehow. I guess I just want to be getting on with the treatment. Jan 5th will come soon enough and hopefully that will start to make me feel better.
Anyway, thank you all again…but keep posting! I’ll keep reading.
Hi there, this is my first time on this site & already i feel better after reading others comments. I was diagnosed with my primary tumour 6 weeks ago & then told 3 weeks ago that it had spread to my sternum & pelvis. So very early days. The hormone treatment & the bone strengthener infusions have all caused an initial tumour flare so I’ve a bit of pain, flu like symptoms & just been exhausted. I went from having virtually no symptoms 6 weeks ago to having to lie on the couch for a week! Symptoms are now much betetr tho & I got a good combination of painkillers which worked really well & let me get a sleep. I freaked out when I was diagnosed (as I’m sure you all did). I have been a nurse for many years in an acute hopsital so only see people much further down the line (and with much more aggressive cancers anyway). I had no idea you could live as long with a diagnosis of bony mets. Altho my oncologist & breast care nurse told me they have many patients with metastatic disease who live for 10/12/15 years, I didnt really believe them but thanks to scottish lass I now do!!!Visited Maggie’s centre last week for first time & I think that’ll be a brilliant support too.
Take care everyone.
Hi Glasgowgirl, I am sorry that you have had all this to deal with. I had a 10 year gap before it spread to my bones. I was originally diagnosed in 1989 when I was 39. Since my bone mets I have given up work and it has worked out well for me. My husband, a retired nurse looks after me well and I wouldn’t manage without him…well I would…but you know what I mean. When I first found out about my bone mets I was really in a bad shape. Thanks to modern drugs and chemo and Biphosphonates I have managed to diddle along for quite some time and in a few months I will be 60. If you want to ask me anything feel free to do so and I will help if I can. The Maggies centres are great for support and for asking questions about treatments etc. I was wondering how old you were and if you are still working. Have you applied for a blue badge? I have one and the benefits are terrific as they can get me closer to shops etc so that I do not run out of puff so easily. I am truely sorry you are having to deal with all this especially at this time of year when everyone else is having fun. I am planning on taking it easy this year. Take care, love Val
Hello izmark and Glasgowgirl and everyone else
I’m so sorry that you’ve had to join us. It’s Christmas and a very worrying time for you, but you will get through it. I took my husband’s advice over the years: don’t worry about the things you can’t do anything about. And it’s so true. Now that you’ve been diagnosed, you’re in very capable hands and the specialists will do everything possible to help you. No, there’s no cure, but there is remission and a good quality of life.
Four years ago I was diagnosed with primary bc and secondaries at the same time. Bone mets to spine, ribs, hips, arm, sternum. I was given two years to live. Since chemo and rads, I’ve been virtually pain-free, can walk unaided, drive myself up and down the country (mainly to Rhydian concerts :-)). I was 60 this year and have had the most fantastic year in all of Christendom. Onc told me there’s been no deterioration for two years, and he wants to see me again in six months. Fantastic news. I know that this will change one day but until then I’m doing what I can, when I can.
Just pace yourself. If you feel up to it, do it. If you don’t, then don’t.
You’ll find lots of help on this site, and many wonderful people to “talk” to. Please don’t feel alone, and please try to make some wonderful memories this Christmas.
Good luck to us all.
Maureen xx
Thanks so much Val & Mureen.
Val - I am 41 (was still trying to get pregnant 6 weeks ago so a double blow!!)I went back to work 2 weeks ago. I am about to start a new nursing post which is a training post so I go back to uni & it will be a great new focus for me. At the minute I am doing a nurse specialist post & most of my patients are palliative cancer pts so its just not appropriate!
I’ve gone back to work part time just now but hope I can get back up to full time at some point. Altho obviously depends on side effects from treatments. I get my next infusion of bisphosphonates on Tues 29th & another implant of Zoladex (oestrogen suppressor) & I felt pretty rough after the last lot. I believe it gets easier after a few doses though??
I have thought about a blue badge, my sister has lupus & has had one for yrs. I just assumed I wouldnt qualify for one just now as am pretty well??
Granny Scouse - my partner Scott is so positive I cant handle it sometimes! At first I thought he was in denial but I suspect he is like your husband & just takes things one step at a time as they come along. Its a good policy! I know as time moves on & this horror sinks in a bit that I will become more positive & start living my life around the cancer. At the minute I feel its dominating everything. You are right about pacing myself, I think at the minute I am expecting too much of myself probabbly.
I’m glad to hear you both have had such positive responses to treatment & are both keeping fairly well. Long may it last.
I’m sorry I had to join you too & I’m sorry everyone else is here as well! Its shitty isnt it.
Oh well, must get on with the wrapping…
Merry Christmas to all & take care.
Love Angie xx
Hi Glasgowgirl,
Just wanted to say that when I was diagnosed with bony mets in June, 2 years to the day after finishing treatment for primary BC, I, like you, thought I was too ‘well’ to qualify for a blue badge. However, my Macmillan nurse contact was adamant that I should apply. Following Tax chemo and rads to my shoulder I have been able to change to a little automatic and with my blue badge it has made my level of independence so much better. I would recommend it to others. Hoping that you continue to make good progress…it must be rotten for someone working in your field to be on the receiving end of this blithering thing… just hang on in there!
Teacherjy, good advice. Once you have mets you apply under the special rules, which sounds scary but its not. Just speeds DLA up and you automatically qualify for the blue badge.
I have bone mets, although they are not troublesome all the time, I have very limited stamina and have had since mx and treatment in 2004. The badge has helped me a great deal and I would encourage others to apply. Valuable for hospt appointments where parking spaces are so hard to find. Shopping is so much easier now too.
Best wishes to you all.
It just want to say you guys are totally inspirational; you give me hope for the future and I will also light a candle for you all. Thanks you xxx
just to say hi, i am pretty new also, i was diagnosed with liver secondarys mid dec 09, have my 2nd lot of chemo and herceptin tomorrow, i have had such fantastic support from this site
take care
galen xx
Hi,
Another bone mets person here. I was diagnosed in July 07 with stage 3 bc and a bone scan showed it had spread to my spine and ribs. Had chemo to shrink the tumour prior to mx, anc and rads. Even after the chemo it was still in 12/22 lymph nodes they took out so had obviously gone there quite extensively but the bone mets had shrunk a bit. I’m on zoladex, arimidex and zometa and at the mo, they seem to be keeping things stable. My onc seems quite positive and she’s always been very honest about things like prognosis, options etc.
Glasgowgirl - the zoladex in particular has played havoc with my emotions/hormones and the zometa gave me flu like symptoms the first couple of times but doesn’t any more. It still makes me very tired that night and the day after and I also find drinking more water helps.
I’m retired from work (bit of a saga) and at last I’m finally settled and content in my new normal life but it’s taken a long time. At some point I’ll face more chemo, rads etc but I’ll deal with that at the time and having been there once, hopefully will have a better idea of what to expect.
hello all
I was diagnosed with primary and secondary at the same time in July 2009. I have bone mets in hip, spine and neck just wanted to say hello to all you newbies. I am on femara, zometa and zoladex injections. I found the zometa made me feel very fluey at first but now 6 months on it is fine and doesnt normally give me any problems. I had joint pains with the femara but that seems to be settling down now.
I think when you first find out it is partly the emotional shock that wipes you out as well as the physical effect of having cancer. I tried to carry on with work but found I couldnt function the way I used to. I am now taking somne time off just to let my mind and body recover a bit. The treatments you get will help and six months on you will start to feel differently.
Regards to all
Julie x
Dear All
Just to let you know that a new daytime secondary live chat is starting on Wednesday 13 January, 11.30-12.30. Please do join us if you would like to talk to others in a similar situation and/or if you have any questions you would like to ask the nurse. The session is facilitated by a nurse and moderator.
Best wishes
Poppy
Hello all,
I have mets to my spine too - diagnosed at the end of 2006. I’m on maintenance herceptin and pamidronate, apart from feeling exhausted (not sure whether that’s the pain killers or not), I feel ok - given that i have secondaries. It isn’t anything like how i used to feel, but I have come to terms (I think) with this is how it is. My life has geared down somewhat - for me that means i cannot do too much too quickly. It also means that i make sure i have lots of holidays and do lots of good things especially treats. It’s not all bad in so far as you get to reverse your priorities, but as with all of us here i’d really rather not have it, thank you very much.
Take care
Thanks to everyone, your comments are all very useful & I will apply for a blue badge. I had my second lot of Zopmeta & Zoladex at end of Jan & felt grotty for a week which was much better than the first time. I dont seem to have any of the mood swings/emotional effects of hormone therapy at all. But then maybe my brain is just so messed up just now coping with the diagnosis that I havent even noticed!!!
Am back at work 4 days a week & managing fairly well although I tire so quickly (I also drive 60 miles a day so that doesnt help). I dont know if the fatigue is the meds, the menopausal symptoms (any tips?? - night sweats are keeping me awake at night), the cancer, the emotional stress or a mixture of them all! I suppose when you list it like that you’re bound to be tired! I just hope I get my energy levels back again as would really like to be able to start doing some exercise again. I have put on 10lbs since being diagnosed & need to lose 2 stone to have a healthy BMI. My oncologist says there is a 10% better prognosis if you have a healthy BMI. So, I guess if losing weight is going to keep me on this planet a bit longer, then its def worth the effort!
I have managed to come off the stronger painkillers (Tramadol) except at night & able to function pretty well on anti inflammatories & regular paracetamol. I think I have a bit of a thing about pain (I’m sure I’m not unique!!). It frightens me. Its not so much that I think I will die in agonising pain because I know fine well from my work that that just isnt the case these days. I guess I am terrified to take too many painkillers & become tolerant to them quickly & have to keep increasing doses. I cant even imagine the day that I’ll have to go onto the big bad morphine - that is just too frightening for words. Does anyone know of any good books/articles about the psychology of pain??
Anyway, thanks again for all your helpful comments & hope everyone is ‘well’.
Angie