Hello. I am now in my fifth year with mets, in bone only at the moment. I have been lurking all this time and have now decided I need someone to talk to. I recently lost a good friend to secondaries, and although this was secondary ovarian cancer it has made me realise how fragile this all is. My treatments have been Faslodex, Letrozole, Tamoxifen and have now been on Xeloda for two and a half years. I also have Zometa every six weeks. I just need a friendly word and to know how all you long timers are coping. I find that the longer the time that passes, the more concerned I get that my time will be up soon. Is that normal? I am 65 years of age and as my name says, a nan to three. I so want to see them grow up. Any advice for giving myself a bit of hope in all this?
Dear Nanofthree
Welcome to the BCC Forum. I hope you will find lots of support from fellow members on here.
We also have a Secondary Live Chat every Tuesday from 8.30 to 9.30pm which you may be intersested in joining. I’ve attached a link with more details:
I hope this helps.
Very best wishes
Janet
BCC Moderator
Hi,nanofthree,welcome to the site ,we are a very friendly bunch that supports each other. We have Belinda and dawn on here who are into their 11 and 12 year.
Huge hugs,Helen xx
Hello Ruth just wanted to say welcome to the forum. I also lost a friend to secondaries about the time I was diagnosed last year. I couldn’t see any future at all for me at that time but 1year on and about to start my first ever chemo and I have to believe it will give me more years if not this one then another type. I don’t have grandchildren yet but my sons are in long term relationships so I long to be able to see them married if that’s what they choose and ultimately meet my grandchildren I know they all long to start families when the time is right, or finances allow. It sounds like your treatment is working well if it has kept from spreading to other organs so I would think this could continue for some long time yet. Xx
Hi from me too Ruth! I was dx in may with lung mets just finished 3rd cycle capecitabine. First scan tomorrow. Keeping optimistic that its stabilised things. You can always talk on here about anything at all. Im only 57 had my primary at 48. My children 33 and 23 no children yet so like you I’m desperate to hang on. There is always hope…never forget! Lots of ladies will be popping up on here to endorse that dont worry. Some been going many years with successful treatment
Love and hugz. …bev xxxx
I can relate to the feeling time is running out Nanof3. Even though I have been living with mets for eleven years those years have flown by! I have lost many friends along the way, friends from here that I had met in real life. In their memory I try to live well with however long I have left as these are the days they sadly never got to see. Really do miss them. I’m now in my 50’s and to my great surprise I have now added heart failure to my list of problems after many years of treatments. I’m not in denial but I actually feel very well and can never really think of myself as ill?! Still hopeful too. Good Luck. X
Hallo Nan of three, I’m a newbie too and am fast becoming a regular, I’m finding this forum very comforting, just knowing others are like you. I’m 58 and was first diagnosed way back in 1995 at the age of 39. Had 14 years cancer-free after the usual treatments then an axillary recurrence in 2009, followed by several more. Had in total, 2 lots of chemo, 2 of radiotherapy, 2 hormone therapies and 4 more lots of surgery. A year ago I was told it had spread to a lymph node in the chest wall. I think I had an " out of body experience" with the shock, felt as though I was floating above myself looking down, really weird!
Anyway all talk of surgery went out of the window! I had to sign forms saying “palliative” treatment. Hey this is me, fit as a flea, still owning and competing 2 horses, it just didn’t and still doesn’t feel real!! I’ve been a year on Capecitabine which I’ve found easy to tolerate, just hoping it keeps working. Good luck with everyone having treatments, cyber-hug xxx
Hi Nanofthree, I really understand how you are feeling, this disease is so scary.
I had my primary in 2007 low grade and was told i had 99% chance of it never returning!!! Well i was diagnosed with mets in my spine, ribs and hip in Feb this yr and my world fell apart, im 46 and have 2 children at 22 and 25 and pray i will be here to see my grandchildren.
After a rocky start i am for the most of the time quite positive about my future…you have to be, and as each year goes by they are bringing new treatments out to help us.
All the ladies on here are so supportive and truly understand how you are feeling, i have a wonderful husband and family but these ladies are so special and i would be lost without this site.
Take care love Janette x x
Hi Ruth, I’m a Marsden, Sutton px, we must be attending the same clinics. My next appt is September 16th, I will have scanxiety after a Ct scan the week before. I only go to Sutton once every 2 months which is great as I live quite far away.
Glad to know Xeloda has worked for you for a few years. Not sure if I’m quite ready for a meet-up but I’m sure more Marsden px are on this forum.x
Hi Ruth, I to had never heard of “mets” and like you i only thought i was at risk of it coming back in the breast!! I think when you have had breast cancer more education on secondaries is needed, i was never told i was at risk of mets!! I always made sure i checked for lumps and bumps. I suffered 6 months of pain to my hip area that was put down to sciatica and if i had been better informed about secondaries i would have pushed for a scan when i first started with pain, i know they still couldnt have cured it but at least i would have been treated a lot earlier!!
Heres hoping for a long “boney” life to come though 
love and hugs Janette x x
I know Ruth me to, i try my best to carry on with life as normal as poss but this disease is never very far from my mind and the uncertainty about it and my future scares the hell out of me!! Life can be so unfair 
Since i started my treatment my pain had virtually disappeared but over the last few wks iv started to get some pain again which im finding quite scary!!! The cancer gremlins keep playing with my mind keep thinking its on the move
Janette x x
Morning Ruth, hows you this morning? Hope your ok, just to let you know most of us “mets” ladies hang out on the bone mets thread please feel free to jump on there with us
love n hugs Janette x x
Hi again Ruth, yes I do think some people must think I was mistaken with my diagnosis and I must be cured after all.
I now have heart failure due to many years of chemotherapy. Although of course it’s chemo that has kept me here so far. Take Care. X