I’ve not been a regular contributor to the forums but found the help and advice invaluable when I was diagnosed with bc on Oct 2009. Thought I was doing okay following lumpectomy for Grade 3 stage 1 ER+ HER2- non invasive ductal carcinoma with no node involvement, followed by 5 cycles of FEC chemo, 28 sessions of rads and been on Tamoxifen since April 2010 with very little side effects. In fact I’d actually changed my life style etc completely and was in a very good place until last Thursday when the bone mets diagnosis was given following bone scan and CXR abnormailty which culminated in a CT scan confirming bone met in 6th rib but on the plus side not found anywhere else.
I know I am very fortunate in it only being in one area but the news has been devastating. I’m all over the place. I’m due to see Oncologist this thursday but am gutted its come to this again. I am a very optimistic positve person as a rule, and trying to keep a strong appearance for everyone is really beginning to tire me out. My family are devastated. We’ve had some horrible experiences of bc in the family and I sense everyone is fearing the worse for me without saying it. Any advice and reasurrance would be very appreciated at the moment. I’ve read if it stays in the bonees the prognosis is better - but my daughter is gutted that despite doing all the treatment before etc, I’ve still ended up with this diagnosis / prognosis.
Any davice re. treatment would also be useful, I’ve just had bloods done to check if I am post menopause as CNS said the Tamoxifen is likely to be stopped and Arimidex started if I am post menopasue but what happens if I am not??? Has anyone out there had this experience??
Thank you Leigh x
I can understand your feeling of being devastated by this. After all with your original diagnosis you must have thought your prognosis was pretty good. These initial weeks after diagnosis really are the pits when your mind is in absolute turmoil. When I was diagnosed with secondaries it was my bones that it went to but unfortunately it was everywhere in them. The good news for you is that it is just in that one spot so hold onto that. Then find your way to the Secondaries Bone Mets thread. I did a count up a few weeks ago now and there were more than 100 of us posting there!!! and many of us have been living with bone mets for a number of years now. My bone mets were diagnosed in 2002. Try not to google if you can help it because so much of the info is out of date. The treatment now for bone mets is so good that they are saying it is fast becoming a chronic disease. Of course we all know that is fine so long as it stays there. Do read our bone mets thread and share some of it your nearest and dearest. Right now you all need all the encouragement you can get and you will find some there plus a lot of support and friendship.
Thank you so so much for your post. I actually recall that you were one of the first ladies to give me some advice and encouragement back in 2009 and I will always be eternally grateful for that:)
I will hot foot it over to the ‘secondaries bone forum’ and start reading. Your comments and the fact there are so many other ladies living with bone mets etc is most reasurring - I’ve actually smiled just now for the first time in days!!! Thank you - catch you on the other forum xx
Hi Leigh
I’m one of the many bone mets ladies that Dawn has mentioned and I was in exactly the same state as you are in 4 years ago. A local recurrence four years after my primary dx eventually turned out to be bone mats as well, once the ct scan and bone scans were done. I was completely devastated as you are, my initial prognosis had been in the 90% bracket of good, so you can imagine it was some shock. Again, my family were also so shocked and it affected my two daughters quite a bit although they did keep it to themselves until some time after. I had also been on Tamoxifen which had then failed for me. My treatment plan was chemo followed by A I’s. As I was peri menopausal or menopausal, being in my 40’s, I had zoladex initially after the chemo and then had my ovaries ablated with radiotherapy as surgery wasn’t an option for me. I have been on Arimidex now for nearly four years and my two areas of bone mets have stayed the same, in fact improved as the bone strengthening drugs you almost always will have, have since healed some of these areas. I think all of us have felt more able to cope once we know what treatment we will be having and also once that starts. It does take a while to get your head round this diagnosis and we do all understand so please come back and ask questions, have a moan, have a rant or whatever it takes to help. Since getting over the treatment and side effects of chemo I basically get on with my life exactly as I did before my dx, something I never expected to happen. Feel free to PM me if you have any questions you’d like answered.
Good luck on thursday and let us know how you get on.
Nicky xx
Another bone mets here. Had it since primary diagnosis at same time in July 07 and am currently stable. I did have tamoxifen for a few months and then changed to try and relieve side effects. As I was still pre-menopausal and they wanted to put me on arimidex, I have to have a zoladex injection monthly (that stops your ovaries working - I think!) to make me the equivalent of post menopausal. Over 3 yrs later, I’m still on this combination along with a bone strengthening drug on a monthly basis.
Hang in there - while I did have a bit of spread in my spine early last year that was treated with a one-off rads blast and other areas of bone mets have actually improved. There are a lot of drugs and treatment combinations they can give you.
Thank you both Nicky and Lizcat for your prompt and again encouraging words. The information re.the Zoladex injections is definitely something I will be discussing with the Oncologist if my bloods reveal I am still pre or peri-menopausal. My CNS mentioned bisphosphonates when she called with my diagnosis and also mentioned the possiblility of radiotherapy so I guess that is also up for discussion on Thursday when I see the Oncologist. i hadn’t realised chemo was an option however and as I had such a horrible tiem with it before I am really hoping I do not have to go down this route again although if it has to be done…I’ll do it.
Will no doubt be able to read more about your experiences on the secondaries bone mets thread…not feeling so lost and alone now thank you x
Hey Liz
All of us mets girls seem to crop up all the time to give help, glad you are shadowing me! We posted at the same time and it’s always good to get a number of different opinions and experiences.
Take care all
Nicky xx
Hello Nicky.
Firstly I’m sorry to read about your diagnosis.
Secondly, I doubt anyone can tell you what to expect, because it all depends on whether your cancer is aggressive or indolent.
Thirdly (and this is why I have posted), with one bone metastases, you come into the category of oligometastatic, and there is quite a bit of evidence that suggests aggressive treatment is beneficial for this particular group, in terms of survival advantage (this is the view of my Oncologist, and if you send me a pm I will give you some links to studies about this that you might find helpful).
In my case, I had chemo, followed by conventional rads, followed by Cyberknife stereotactic rads for the remaining skull mets. At my last lot of scans, the skull mets had not only disappeared, but had healed over with healthy tissue - and there was no evidence of disease anywhere else. I am now taking endocrine therapy and bisphosphonates to help stop recurrence. This does not represent a cure, because secondary BC is incurable, but it does mean I might be around for a while yet.
plus a lot of support and friendship.