First post for me today. Have just been told I have bone mets too. Feel utterly in shock as primary cancer only discovered 2 weeks ago. I am very interested in getting involves in the chats and have felt encouraged by the posts here. How can tidiness the mets thread please
Hi Baggie dog, sorry about your diagnosis. I remember how scared I was. you came to a good place where you will get a lot of support.
We have a thread called the bonemet thread ( I hope the link will work Search Results | Breast Cancer Now) where a few of us post.
I was diagnosed 16 months ago and was put on letrozole, herceptin, zoladex and ibandronic acid. I have responding well to treatment and have been fortunate to continue to live a normal life. The mets have been contained and had no further spread, even signs of healing.
take care.
Hi Baggie Dog…welcome, although its a tough place to be. I was diagnosed with bc n bone mets at same time last July. As Vecors said the bone mets thread is good for support and any questions you may have. Take care of yourself.
Love Mel xxx
Hi Baggie Dog
Sorry you have to join us in the secondaries section - a place where none of us want to be! There are several ladies on here who have been diagnosed with secondary BC at the same time (or close to) their primary diagnosis so one of them may be along to assure you that all is not lost. One lady has been doing very well for 10 years now so I hope that gives you some light at the end of the tunnel. I had nearly 5 years between primary and secondary (bone) dx and responded very well to treatment for the mets until further spread earlier this year. I had been stable for most of the time in between (well, until a CT scan showed the progression) and lived life as ‘normal’. I am now on another lot of treatment, oral chemo, and hope that this is working well for me as it has done for so many other ladies. Do check out the Bone Mets thread as vercors has said, it’s where most of us boney ladies regularly post and has a lot of information, support and experiences from a whole host of different secondary ladies.
Nicky x
Hi Baggie dog,
As you can see the ladies here are wonderful at offering support. You might like to take a look at one of BCC’s services - Secondary Live Chat - which runs for an hour each Tuesday evening between 8.30pm and 9.30pm. I have put for you below the link for you to have a look at.
breastcancercare.org.uk/community/chat
Take care,
Jo, Facilitator
Hi. I have recently been diagnosed to and am feeling the same as you. I am struggling to share my feelings with those closest to me and am so sad when I look at my 3 young children. And yet this forum is so so positive with posts from people living with secondary mets for years.
Its so frightening not knowing the treatment plan. I see the doctor tomorrow so should know more then. Good luck to you
clare x
Clare, like you, I have just joined this section of the website. As you have young children, I assume you are also a “younger woman”, like me. I had a primary 5 years ago and cannot imagine how you are reeling at the news of secondaries whilst you are still coming to terms with the idea of a primary. However, I must tell you my experience of this website and the wonderful women who use it has been invaluable to me through my primary and I immediately turned to it when I heard I had secondaries. You will get a LOT of help, advice and support from the fantastic women on here - and you can come here to rant and rave when you feel you can’t let your family know your true feelings.
Do let us know how you get on later today,
Thinking of you
Sue x
Thank you sue. I will do. I have 10 year old twin boys and an 11 year old who will turn 12 soon. I am 49 so ‘young’ ish lol ! I have to be around for a good few years yet to see these boys through some very important years. This site has given me much more hope as so many of the women have been living with secondaries for years.
Your encouraging message really helped this morning. Will let you know what happens this morning.
Lots of love Clare.
Would be very interested to hear about your journey so far too .
Good luck Claire/Baggie Dog hope all goes well today and you get a treatment plan in place which means you are attacking the *uggers.
Nicky x
Hi everyone. Thanks for the messages. Just back from the hospital and been put on letrozole ! And having bone strengthening treatment too. Anyone got any experience of this. Think it’s by injection.
I cannot believe that this tiny tablet can possibly do anything. I have high oestrogen receptors so this is why this treatment been suggested. No chem yet. ! Think that for further down the line.
Its such a lot to take in. I look forward to hearing from others sometime. In the meantime. Lots of love and speak soon.
Clare x
Hi Clare,
Snap! I’m on Letrozole too and like you, can’t believe such a tiny pill can do powerful work. I don’t like some of the side effects, but hope they will disappear or lessen over time. I think it takes a while for it to work and yes, chemo may well come later. Much later, we all hope For ourselves.
What bone strengthener are you having? If it’s Zometa, that is done by a drip and takes about 20 mins. There are others I understand which are given by injection eg Denosumab.
PI was first diagnosed in 1994 when my children were 3 and 6. My fervent wish was to bring them up, which I did. I am now greedy for more time of course, and am glad there is a treatment plan in place and lots of weapons in the arsenal.
Susan x
Thanks Susan for your reply. I am still taking all the information in as only diagnosed 5 weeks ago ! im like you. I just want to see the boys grow up. yes it’s the injection I’m having for the bones. I just hope and pray that the letrozole start Working. Wherr are you in your treatment. And would you share your experiences about side effects. I have been warned about joint ache but that’s it really !
So grateful to have the messages from you lovely people on here. I am finding talking to friends and family so hard. I thought I would try and log on to live chat later.
Lots Of love. Clare x
Hi Clare,
I’m 4 months on from my secondary diagnosis and still finding it hard to take it all in. Unfortunately my bone mets are now ‘very extensive’ as they were undiagnosed for the past 12 years. So I brought up my family in blissful ignorance which was possibly a good thing. But now I ‘know’, I have to seek the best treatment.
I’m not sure which side effects are caused by the Letrozole and which by the Zometa! They overlap if you read the product info in the packet. I feel very stiff in the areas of interest, and my bones are sensitive. I can’t say they hurt and I only need a couple of Paracetemols a day. I feel nausea on occasion and my GP has prescribed Domperidome to twhen if needed. I find my appetite has diminished but that small meals help.
Te hardest is the emotional part, living with uncertainty, waiting for scan results and knowing from other postings how unpredictable this disease can be. But you need to be well informed. Last time round, I put total trust in my Onc and believed him when he said my original 5 years treatment was ‘belt and braces’ and thatnitnwas very unlikely my cancer would reappear in the same place. But then, I have lived symptom free for many years and had all the routine mammograms. So I’m not blaming anyone, not even myself. This time, I want to know about the various treatments and options. And the fact that the receptors can change in time and what to do about that.
You will find a wealth of support and advice here. Keep me posted about how you’re getting on.
Susan x
I was diagnosed in Ocrober and after RMx in Nov discovered canc in other breast and mets in scull and upper spine. I was put on LETROZOLE and after 4 months I had a blood test and was told that there had been a HUGE drop in the tumour markers…which is good news. I am also having Zometa infusions and a calcium supplement so it does work. No chemo…maybe sometime down the line if it becomes necessary is what they have said.
side effects are aching joints buy nothing bad enough to make me want to change things…especially as it seems to be working.
like many others, even though I do not post very often I take a lot of comfort from these forums…
What a lovely positive contribution, Lynn! Every bit of encouragement is so welcome. I am on the same medication as you and 3 months in, I’d like to think things are befinning to stabilise. Time will tell but in the meantime this forum is such an inspiring and helpful place.
thank you for your post.
susan x
Thank you ladies for these wonderful comments ! Good luck to you all and speak soon. I love this forum. I am so glad I have found you all.
Tired tonight after an emotional day. Thank you again
Hi. Just reading this post and like you diagnosed at same time with breast and secondary bone mets. with good treatments is it really possible to live a ‘normal’ life ! You sound such a positive person and your post has given me more hope like many of the people on here. But Since my diagnosis I have gone from being a full time teacher, mother of 3 school age children charging about socialising etc and now feel and am behaving like a ‘sick’ person. I know it’s a psychological thing at the moment but can anyone else relate to this. Sorry to be so down todaY. I have bone scans and cannot still believe the change of circumstances in just 6 weeks. I don’t want to be negative. I have always been such a positive happy go lucky person ! Thank you
love and best wishes clare
Hi Clare
It does take a while to adjust believe me! Once I had my treatment plan in place I felt more able to cope but, as it was IV chemo, I had to get through that first and did feel like a sick person. However once I was on hormone treatment I really did feel great and got on with everything I used to to, albeit with a few more aches from the hormone tablets. Be easy on yourself and look after yourself - you are the most important person right now. I found I couldn’t be bothered with petty things any more and often used the ‘cancer card’ to get me out of events etc that I really didn’t want to go to or be involved with - including some from so called friends who hadn’t supported me in any way - you soon learn who they are! One good thing though that did come out of my secondary dx was I appreciated all the small things like a sunny day, a pub lunch, a fun day with family, a little treat. You are very early days in this whole process (my dx was 5 years ago) so take each day as it comes and if you find you really are not feeling any brighter maybe you can talk about counselling? I know some ladies on here have had that and it has helped a lot to unburden your thoughts to a professional rather than to family and friends. Also do keep posting on here we do all understand and can help even if in a small way.
Nicky x
Thanks nicky. What a positive reply. Really appreciated. Hope you don’t mind me asking but after your secondary diagnosis did you have chemo first. I am only having hormone treatment. No chemo which I find surprising !! Thanks nicky. Lots of love Clare x
Hi Claire, just to fill you in on my situation. I was dx with bc and sx in bone after an intense pain in my hip. I had radiotherapy for my hip, was put on zoladex and given tamoxifen plus zometa. I was told they prefer to start you on the hormone therapy as it is a less aggressive treatment. After 3 months I was scanned which unfortunately showed further bone mets. I was then given ec chemo which I finished about two months ago which has reduced my lump from 4cmx4cm to 8mm which apparently is a good response. I am due to start letrozole soon and have been told this is an effective treatment.
A friend of mine has only ever had the hormonal treatment ( for 4 years now) and this has kept her stable. My onc has said that the treatment plans are tailored very much to our needs so we will have a slightly different approach from our oncs.
Like you I am a positive happy go lucky person but felt I’d lost control of things. However, my life is slowly returning to normality now…I have been off work since July last year…am a teacher…and am planning my return to work part time initially.
I had counselling to talk things through, its hard to get your head round things. My breast nurse has said to me that this illness is beibg regarded as a chronic illness that can be treated for many many years. Thats what I am holding onto and can cope with thst idea. There are many ladies on here that have been treated for many years.
Like Nicky I also see the joy of the little things in life…I was so excited by the snow last month I had to walk in it. I like the rain, seeing my friends and family and laughing. I have noticed I am much slower but I have got used to the fact this is my new normal.
I still have a ups and downs but feel stronger everyday. I went to a yoga class, run by my hospital last week which was great, I can have 5 more so I shall book in for some more. Be kind to yourself. All the best Mel xxx