Hi I am new to posting on the forums although I have been looking on here for a while , I was diagnosed with primary breast cancer in December 2010 had treatment with mastectomy , adjuvant chemotherapy , radiotherapy and a year on herceptin , I was diagnosed yesterday with secondaries in my bones , am now waiting for appointment with oncologist and I’m sure lots of scans I am so scared and I just don’t know how I am going to keep going , now it is secondary I am so scared , I have two children 2 and 4 and can’t look at them without bursting into tearS! Would like to chat with a lady about secondaries in the boneamid anyone can help x
Sorry you have had to join the secondary ladies here but you will find a huge amount of support, knowledge and information on the forums. It’s only natural to be scared and worried when diagnosed.
I was diagnosed with bone secondaries just short of 5 years from my original breast cancer diagnosis. I had a bone scan and CT scan at the time and then as my cancer was ER+ I went onto hormonal treatment in the form of a daily tablet plus a bone strengthening drug, also in tablet form. I was lucky and had very few side effects from the drugs and the initial pain in my hip was treated with a blast of radiotherapy.
There are ladies on here who have lived for many years with bone mets, you may well get some replies from them, I am into my 7th year with mets so please don’t necessarily think the worst. Bone mets are a treatable if not curable condition.
once you have seen your oncologist you will have a treatment plan put together and a schedule for follow up scans to check everything is working, I am sure you will feel better once you have seen the oncologist and find out exactly what will happen, it’s always difficult waiting for results and appointments.
Please feel free to ask if you have any specific questions you need answering, I will do my best to help you out and am sure you will get other responses.
Dicky - have a look on the bone mets thread. Warning though, it is a very long one now! Plenty of help, experience and discussion about various treatments not to mention a lot of laughs too. You will find so many in the same situation. I’ve had bone mets since primary diagnosis in July 07 and have only just had some spread that has needed a change in treatment. I don’t have any kids so can’t help you with that aspect of dealing with the disease, sorry.
I can only second my esteemed ‘colleague’ Liz’s post - the bone mets thread is the place to go for answers to questions you didn’t even know you had!
There are lots of us out here with bone mets and altho its so scary to start with you do get used to the idea somehow. I’m a comparitive newbie compared with some at only 18 months with bone mets but you’ll meet many longer living ladies. I take heart from what my palliative pain man told me, that if you’re going to have breast mets, bones are the best place. they are more troublesome in terms of pain sometimes, but generally less determined to make you leave this earthly coil.
Hopefully you have now seen the Bone Mets thread that Lizcat mentioned. There are many of us living with bone mets for many years. I have had a great response to my initial treatment of chemo followed by hormone therapy and bone strengtheners which kept me stable and totally pain free for nearly 5 years. I have now had some progression in the bones and unfortunately to the liver but am hopeful that the new chemo I’m on will work as it does for lots of ladies with the same type of mets. It is always such a shock to be told that the primary BC you had hoped to say goodbye to forever has come back and bitten you in the bum. I think all of us felt more able to cope once we knoew our treatment plan as it does give you a sense of control as well as knowing something is actually being done. I found great support on here all those years ago, and still do, so I hope you will be back to ask questions, moan, rant, or whatever you need to do - we all know what it’s like and are herer to help.
As the others have mentioned the bone mets thread may help answer a lot of your questions. If you haven’t already found it, here is the link:-
Also, if you would like to talk things through with someone please do give the BCC helpline a call and chat with one of the members staff, who are there to offer emotional support as well as practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Thank you everyone for your messages , so glad that this site and forum is here , and I now feel there is hope , and gonna keep coming on here to chat all the best to everyone xxx
Nina - me, esteemed?? Love it!!!
Hi Dicky, i was diagnoised with BC, just 5 weeks ago, and i so thought it was got in time as i only found lump around xmas time, am 37 years of age, with 3 young kids…I got results to say lymph nodes were removed and all had traces of cancer cells in them, so they sent me for bone scan and CT scan and got result back on thursday, and they have notice 4 small spots on my bones, i am so gutted i feel like i am dreaming, they said it is treatable but not curable and i am lucky that the cancer is receptive to hormone therapy, i see my oncologist on thursday to get my treatment plan…but i am so scared everytime i look at my wee children my heart is breaking, i just so need to be here to c them growing up…Spoke to my doctor and she was very positive and said lots of woman live with secondary cancer and no one even no’s…so i am trying to be very positive and saying to myself this disease is never gonna win over me, but that never takes away the fear and waking every morning thinkin about it…Would also lovel to hear from people who are living with it…very sad mummy and wife at min.:((
Hi lynn and Dicky, everyone, I very rarely post here these days but just read your posts and thought I’d reply. I was diagnosed with BC and bone mets together in 2003 so I’m now in my 10th year of living with secondaries. I have hormone receptive cancer. I had a hiccup at Christmas, I needed some radiotherapy and my first chemo had finally stopped working (but I had 4 and a half good years with it) and before that over five years of hormonal treatment. I’m now on my 2nd chemo, I feel very well, no sickness, not much tiredness even.
Good Luck, I hope your treatments work well…xx
Hi Dicky and Lynn,
t post often but dip into the forum frequently since my secondary diagnosis in Sep 11 with bone mets and 2 tiny lung nodules, 3 months after primary diagnosis. I saw your posts and understand the overwhelming fear you must be feeling at the moment and the sadness when you look at your children, however you have absolutely done the right thing coming on here. Some of the most knowledgeable and experienced ladies have already replied and directed you to the bone mets thread which is full of knowledge, information and support. I had a complete meltdown after my secondary diagnosis and wondered how on earth I was going to cope with it all, however, once I had a treatment plan in place I began to feel more positive and hopeful, could look at my boys (now 15 and 13yrs) without getting teary-eyed and eventually returned to work part time. I have 4 weekly IV bone strengthners and injection into my tummy to switch off ovaries, am lucky enough to have little pain at the moment and live a very
normal life. Scans since the end of chemo ( 6 x FEC) in Nov`11 have been stable.
The emotions you are feeling at the moment are entirely natural, just give yourselves time and keep coming to the forums for support, I still do and plan to post more often in the future (my slow typing means I usually run out of time to post before being distracted by something else!) Lots of love and positive thoughts,
It’s nice when all of us girls who have been living with this for some years can pile in and encourage those more newly diagnosed. So I am another one who wants to say it can be done. Unlike Belinda I am not hormone positive. My original diagnosis was in 1990 and it’s a wonder I have any bum left it came back and bit me that many times LOL! In those days there wasn’t triple negative as her2 & herceptin wasn’t known about. I was diagnosed with very extensive bone mets in 2002 and had about 8 years relatively pain free but about 4 years ago pain started increasing so I went onto stronger pain meds. It is frightening when you are first diagnosed with secondaries but as time goes on and treatments are seen to be working it isn’t always the first waking thought and life does take on some semblance of normality. So stick with us girls and we will hopefully help you get there.
Hi ladies, thank you so much for all your lovely comments, it is so comforting to hear all these good stories, because i feel people look at you as if you are mad when you said it is treatable for years that is the kind of looks i have been getting anyway…but i have a rollercoaster of emotions and was very positive most of time, only dx 7 weeks, with BC and the mets after getting scans done and it really has completely shook my world, just can’t stop looking my wee kids and crying and being so brave when they are about, but being complete mess when they go out to school…Anyway enough of the self pity, i have 4 small spots on my bones at minute and my treatment they have recommended is tamaxifen, as i am hormone receptive and HER2 positive, i was content with this as you have to trust ur oncologist and breast nurse which i completely do, but some people have told me to get a second opinion that i should be treated with chemo, herceptin at the start to attack it aggressively and then maybe tamaxifen, can anyone advise me how they were treated, this weekend i had give up so much hope and feel so bad for my husband who has just been wonderful…I am so scared but when i see the consultant as so ascared what they are going to tell me that the anxiety is overwhelming…does it get easier, as it never seems to be off my mind, going to bed at night thinking about and waking up…not a good way to live life just want to be happy again…xx p.s all you ladies on her are an inspiration and i hope someday i can be writing up helping other people…xxxx
See my response to Chatty Katty in the “living with secondaries” thread. I’m on 2 types of chemo + herceptin and will move on to tamoxifen too when the chemo finishes.
Although herceptin is still caught up in the ‘postcode lottery’ of nhs funding, we secondaries girls seem to be treated differently across most of the country as the NICE protocol is for continuous herceptin after secondary diagnosis for her2 positive patients.
I’m being treated in Portsmouth, but have a friend of a friend in Leicester who couldn’t get herceptin on her primary round 6 years ago but got it 5 years later upon bones mets diagnosis.
Take heart, bones mets girls seem to do well from what I can understand, listening to the others. I’ve found joining the Tues night secondaries live chat at 8.30pm a help, as thats a group who can really relate to how we feel and some of them have been around quite a while after diagnosis.
Good luck… Sarah
I’m very sorry to read about your diagnosis - it is particularly awful when someone has young children.
I don’t want to comment on survival rates, because I don’t want to bullsh*t you. The fact is nobody knows how long you will survive, because each cancer is unique. Some survive for long periods ( as you can see from what has been said above), and others do not.
What I do want to say is that treatments for secondary cancer are progressing at an enormous rate. For example 30 years ago, the only treatment available for women with hormone sensitive BC was Progesterone. Tamoxifen was only available under trial conditions, and wasn’t universally available until well into the 1990’s in the UK. Similarly there was no aromotase inhibitors universally available for post menopausal patients. For women with Her2 receptive cancer there was no Herceptin, and for women with any type of BC, there was no angiogenesis inhibitors such as Avastin. Likewise, on the radiotherapy front there was no Intensity Modulated Radiotherapy (IMRT), or Sterotactic RT, such as Gamma-Knife, Cyberknife, multi-gated Linac, or adjusted Tomo-Therapy. All these things are now available.
In addition for someone like yourself with Her2 receptive cancer, there is not only Herceptin, but newer drugs such as Lapatanib, which can treat cancers that are Her1, Her2, Her3, or Her4 receptive. Laptanib can also reach metastases that Herceptin cannot reach (such as in the brain), because it has smaller molecules than Herceptin.
In addition to Herceptin and Lapatanib there is soon to be a new drug for Her2 patients, called Kadcyla. This drug was licensed by the FDA in February 2013, and the manufacturer’s hope it will be licensed for use in Europe by the end of 2013. The advantage of Kadcyla, is that it uses Herceptin as a vehicle to transport a very toxic chemotherapy directly into the Her2 receptive cancer cell, thereby avoiding toxicity to healthy cells, and making chemo SE’s virtually non-existant.
So while nobody can re-assure you as to how long you will be around, take heart that treatment has made massive advances over the past 30 years, and things like DNA profiling and computer imaging are dramatically increasing the speed of develpment.