just diagnosed

Hi. I was diagnosed mid July with secondary breast cancer in my bones. have been told surgery is not an option for me and they can only treat my symptoms. This was a huge bolt out of the blue I thought they were going to say I had arthritis. Am just coming to terms with the fact that I am not going to get better.

Not sure how this thing works not being very web savvy but would like to know there are people like me and it might make the whole thing less scary.

Hi blue jules
So sorry you have to join us in the secondaries club - membership not desired! There are lots of lovely ladies on here who can help with support, advice, experiences etc and you’ll soon realise you are not alone. I was in your position last April when I was told I had bone mets. It is so scary, sad and upsetting and I thought I’d be dead in a month. However once I had a treatment plan I did felt able to accept my situation much better and had heaps of advice etc from this board - it helped me so much I cannot begin to explain. From what I know bone mets are not usually operated on unless necessary - ie a bone break or risk of spine collapse. The main treatment is bisphosphonates which strengthen the bone, these can be intravenous or tablet. You may also have chemo depending what your oncologist thinks regarding your specific diagnosis and/or hormone therapy/herceptin - again depending on your type of BC.
I’m sure some other ladies will be along here soon to add their comments - many have been living with bone mets for years - something that really helped me last year (and still does). You will be in shock for a while and it is very difficult to come to terms with this incurable diagnosis. However since last year I have more good days than bad and make a point of making the most of everything. I hope you get a treatment plan soon and you respond well. In the meantime please feel free to ask any questions.

Hi Bluejules, may I welcome you to the site. I’m sorry you’ve had to join us but I’m sure you’ll get all the advice and support you need on here. Seccondaries to the bone are the easiest to treat and therefore the best ones to have! I know of one woman who was diagnosed with it in her spine 12yrs ago who is still well and holding down a full time job. I’m sure you’ll hear many other similar stories from others on this site.
Josie x

Hi Bluejules …and welcome…I echo what Josie has said - I am on zometa for bones and after first treatment ( when i felt i had flu) have had no adverse effects ( its the other secondaries that cause the bother to me ( lymph and liver) so I hope treatment goes well for you … you must still be in shock - i know you will get a lot of support here - much love, jayne

Hi Bluejules - sorry you’ve had to join us here but you’ll find lots and lots of support.

I was diagnosed with breast cancer and bone mets all at the same time just before Xmas last year - it was a horrendous shock, like you I thought I had arthritis or a slipped disc, never dreamt it was cancer, had never found a breast lump.

Since then I’ve had 6 sessions of EC chemo which has shrunk my primary tumour to almost nothing and Pamidronate (bisphosphonate) has kept my bones stable and pain free. I’m now about to embark on six weeks daily radiotherapy on the breast and axilla lymph nodes to try to eradicate it from there altogether leaving it 'just ’ in my bones. I’m also having Arimidex (hormonal drug) and Zoladex injections to shut down my ovaries.

I have gained a lot of support from other ladies on here who have been living with bone mets for years - I fully accept I have an incurable disease but just hope that I respond well to the treatments I am offered so that I remain stable for years to come.

Hope the same will happen for you - there are lots of treatment options out there - do you know yet if you are ER/PR positive or negative and have you been told what your HER2 status is? As the others have said, once you have a treatment plan in place things seem less scary.

Take care
Lesley x

Goodness I’m not sure bone mets should ever be described as ‘the best to have.’ Any secondary diagnosis is devastating.
Hi Bluejules, I was diagnosed with both bone mets and breast cancer together in 2003 when my hip spontaneously fractured. I was in my early 40’s and had a succesful hip replacement. Since then I’ve had some good responses to treatments and have had years of inactive cancer. Give yourself time to come to terms with your diagnosis…most of us, given time, go forward and somehow life goes on. Take Care…x

Hi Bluejules, Just to give you a bit of hope I have been treated with secondary in my bones ( spine, ribs pelvis and thorax) and have had ongoing treatment for ten years now. At first I was in great discomfort but I am on Biphosphonates ( Zolidronate) and chemo on 2 occassions over this period. I also have several painkillers including morphine which makes things much easier for me do do more. I continue to do well and have now got over the shock that I remember so vividly. I first had BC diagnosed 20years ago. If I can be of any help please contact me with a private message if you wish but do let us know how you are doing on this message board. I wish you all the best from Scottishlass

Hi. Would like to say thank you so much to everyone who took the time to respond to my first posting. I can’t tell you how much better I feel in my head as a result of reading about your thoughts and experiences.

The breast surgeon made me feel like I was about to croak imminently but thanks to my breast cancer nurse and this forum I have got a much better perspective now.

I am seeing my onc for my first check up after the initial flurry. Have completed my first 4 weeks treatment of Zometa drip. Letrozole(femara) tablets and Goserelin injections. Also had one radiotherapy treatment on spine and hip. Although I am 50 I hadnt started the menopause so first thing is to stop my ovaries working. I am ER+ and herceptin negative. Not sure exactly what that means but feel able to ask more questions on Wed.

My biggest concern when I found out I had BC was that I would get some more time with my beautiful daughter who is only 18 and has already lost her father to cancer. I know there is no guarantee but feel hopeful based on what I am learning here.

Once again a big thank you.

Julie x