Secondary breast cancer in spine

Hi HerHoF92 welcome to the forum and I am sorry to hear your news and not surprised that you will be fixating on numbers thats scarey when they tell you things like that and of course your first thoughts turn to  the worst case scenario and I don't doubt for one minute that you would be alone in that.

Yes Google is not a good idea as you have found to your detriment and its usually because its not unique and specific enough and tends to  generalise which is not what you need right now.

It does sound though that it is treatable which is good news in itself and you know and I know that people can and do live for many many years with Cancer.

Keep  talking to us all here and we will help as much as we can. You can also have a chat at anytime that suits you to the folks at Macmillan they are fantastic on the helpline and really good listeners for us all. xxxx

Thank you so much for that uplifting reply!

it was much needed and I do know people live for many years with this condition I’d just scared myself and obviously upset myself too by reading Mr Google who is very generic! I have to understand everyone is different and learn to “live with cancer” and adapt my lifestyle around it. 

Thank you again

cx 

Hi HerHof92, I found myself in your shoes this time last year just as lockdown arrived. With no symptoms as such I went for annual mammogram which was clear but when the consultant called with the good news I told him I was worried about some niggling pains in my hip and ribs. I already suffered from arthritis so had dismissed it but when I told him the pain kept me awake and seemd to move around from place to place he decided to be cautious and send me for a bone scan. I am so glad he did as the results showed spread to my bones. mainly in spine and pelvis. I am on Palbociclib, Fulvestrant and Denosumab as well as added Calcium. Since treatment started my "scores on the doors" (alkaline phosphotase) have come down from over 1000 to under 200 which is in normal range. The treatment is manageable. I am lucky that for me it has ben mainly mouth ulcers, cold sores in the early days and I get a bit of constipation in week one of my cycle  which I fught off with prunes, figs and Dulcoease. And plenty of water too.. I belong to a face book group called Stage Four deserves more where there are dozens of ladies who are reporting long periods of stability and they can share experiences too. I am a coper but my thoughts were completlely jangled and my emotions were all over the place. It wasnt helpful that it coincided with lockdown . It felt like a double whammy. I resisted any form of counselling but I couldnt cry for weeks because of not being able to hug anyone. So I had some counselling and it really helped to sort out the bad thoughts and help me to reach an acceptance. None of us know when that final moment will arrive but I intend to wring every ounce of life and joy that I can. As you settle into your new normal you will find ways to deal with this new diagnosis. I rarely come on this website but something led me here tonight so I hope I have given you some reassurance. You cant change your diagnosis but you can change how you approach it and deal with it.  Good luck. 

Hello LaneyD

Thank you for your reply. It’s certainly helped. It’s also weird you should write yesterday as I was having a “low” day.  

I’m mainly a very positive person and I’ve definitely turned a corner as I’m feeling much better, physically at least!  It’s the mind games I play with myself I find the hardest!  

The nurses at the local hospital were delighted with  me as I looked and sounded much better than the previous month.  So, therefore, something must be working they told me.  So  like yourself I’m going to try and remain as positive as possible.  The best piece of advice I was given was to treat this as a chronic illness and that’s helped my mindset too.  I was very lucky (so far) not to have had any reaction to palbociclib, my hips are suffering after those huge fulvestrant injections! Hopefully that will settle down now that it’s only monthly injections. 

I think it must’ve been so hard to get the diagnosis in lockdown where the usual channels of help were all blocked off. 

Thank you again for that uplifting reply. I must stop going to sites where the facts maybe very outdated, that’s when I have my low days, so it stops now! 

Thank you again and fingers crossed we have many days ahead! 

cx