hi, i’m jayne. i had a mastectomy 11 years ago but have just been diagnosed with secondary cancer to my spine. i am completeley shell shocked. I thought i had sciatica. I can’t get my head around this devastating news. How do you ladies carry on each day. I am terrified. I have a very supportive husband and family,but last year my eldest sister passed away. when she was diagnosed with breast cancer it had already spread. I know everyone is different and i am at the moment in a better physical place than she had been for years,but i went to all of her appointments with her. I’m the one in the family who helps everyone else,and like to do so. Our heads are all over the place. I feel so alone, even with all the support i have. I’ve read some of the positive post and they have given me some hope. i;m trying to take one day at a time but my thoughts go into overdrive. I just need to know other people have felt like this and how you cope jayne.x.
Hi Jayne,
Like you, when I was first diagnosed with 2ndaries I had sciatica. It came on very suddenly with no warning. I had been climbing up and down on a chair sorting out some high bookshelves and suddenly the pain shot through my leg and I couldnt put weight on it at all. I had previously been diagnosed with my first primary bc 12 years earlier, and had several recurrences during that 12 years so I was no stranger to breast cancer and was suspicious that the sciatica could be something more. Sure enough the onc packed me off for scans etc and bone secondaries was confirmed - but the big shock was that it had gone through so many of my bones - from my skull, through my collarbone, ribs, pelvis, hips and all of my spine. with no earlier warning signals that I recognised at the time. I think I was quite numbed by the shock of it, but almost because of the many recurrences I had been through I just seemed to be moving on to the inevitable and really thought I was going to die and possibly that note was not that far off. I think possibly because of my faith I seemed to accept that this was how it was to be and felt quite at peace about it then.I little dreamed that I would still be here another 11 years on from that secondary diagnosis!
It must be so very hard for you having been with your sister through her diagnose & treatment for breast cancer, and then the loss of that sister to this wretched disease. From what you say it sounds like she had bc for a number of years. As you say it is good to remember that we are all quite different and it doesn’t follow that your diagnosis will be the same as hers. It’s tough too when you have been used to being the one that is there offering support to friends and family. I hope they all see it as any opportunity to say thank you and be there for you.
Have you taken a look at the Bone Mets thread in the Secondary section of the forum? There are many of us who post there and it is a tremendous source of support and information.
Dawn
xx
Hi Jayne and welcome to the BCC forums
In addition to the valuable support and shared experiences here our helpliners are on hand with practical and emotional support on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays so please feel free to call to talk things through during this very difficult time for you
I hope you find the following link to BCC secondary information and further support services helpful:
Take care
Lucy
Hi Jayne, sadly we know what you are going through, and hope we can be of some source of comfort. Dawn is a shining example of living with secondaries in the bone. Mine were diagnosed Nov 2011 at the same time as intial diagnosis, and have been stable eversince.
How do we cope? well, we all have our different ways of coping which work for us and our families. When I was first diangnosed I couldn’t stop shaking, couldn’t sleep and was so worried about my 3 children being bought up without a mother…but, as the years have rolled by, I am more accepting. I treasure each day, love spending time with my friends and family and am enjoying my life. We go abroad about 5 times a year, any excuse for a party, and am determined to live my life to the full. However I am aware that my method doesn’t suit everybody, you have to find your own way…
Good Luck.xxx
Hello Jayne,
I am another person who has extensive bone mets. I frequently post on “Bone mets please join in”. The ladies who have replied to you post on there too and although I haven’t met them I have got to know them really well and we support each other continuously.
When we learn that our cancer has spread it comes as a tremendous shock and I thought I hadn’t long to live as I did not know anyone with bone mets. I did not know about this site and the support it provides.
In some hospitals they now have dedicated breast care nurses for people with secondaries. I wonder if you have one at your hospital. I can phone mine up if I am uncertain about something the Consultant has said or if I want to know anything about scans or treatment for example.
Losing your sister to this cruel disease must have been hard for you. Please let us support you through this very difficult time. There are lots of people who have had bone mets for years and I am one of them. I had my mastectomy 24 years ago and had bone mets diagnosed 14 years ago. There are new treatments and drugs appearing now that were not known about when I first started.
I finished chemo at the end of April and can honestly say that I am feeling so much better now. It is good to have famikly and friends to support you but it is also helpful to be able to come on here and talk about your fears and worries without upsetting those closest to you at home. That is where we come in. I try to take one day at a time now. It is hard to get your head round things at first but now I feel much more comfortable about everything.Meantime keep in touch and let us know how things are for you. Val
Hello Jayne, I can’t really add to all the wise posts above so I will just say please do keep posting and you will find we are a friendly supportive bunch. I was diagnosed with bone mets from the very beginning, I was in my early 40’s. That was ten years ago and conventional treatments have kept me here and for the most part kept me feeling very well. I’m so sorry you lost your dear sister…x
Dawn, thank you so much for your reply, it gave me a sense of belonging. i will post again. Thank you Jayne
Hi, thanks for replying, hearing from others in the same situation is comforting. i will keep reading the posts and will post again myself. thank you
Hi Val, Thanks for your reply, you are an inspiration and i am thankful you are on this site. I will post again sometime. thank you Jayne
Hi Belinda, thanks for your reply. To read positive thoughts and experiences is such a boost. I will post again. Jayne
Hi Jayne
ive also been diagnosed with breast cancer in the bone which was my first diagnosis my first visit to the oncologist is tomorrow, I’m trying to stay positive after reading posts on here it’s given me hope, good luck I sure all will be fine stay positive