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newly diagnosed

7 REPLIES 7
Member

Re: newly diagnosed

Hi Turtle,

I too was 16 years clear before secondary found in bones and a few spots in liver. I’m nearly 5 years now with secondary’s so take heart, there are lots of new drugs out there now that weren’t available even 5 years ago such as the drug combo you are on. 

I remember when I had my primary diagnosis my little girl was only 1yrs old. I didn’t think I would see her start school. Last month I watched her graduate from University!  So we still have a lot of living to do... xxx

Member

Re: newly diagnosed

Long may you continue to inspire us Nicky xxx

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Member

Re: newly diagnosed

hi nicky thank you so much for your positive post. the hardest thing i think about when thinking about the future is about the 17 years i have had between my diagnosis and the fact a lot of people i travelled by bc journey with didnt make it and here i am wanting more. in that time i have seen 6 grandchildren born and two are not at secondary school. but i manage to put the guilt behind me and live in the moment. we are planning a family holiday in november and my first comparitive scan saw mets shrinking and the rest remaining stable so i am very optomistic at the moment. i do get tired but am still working as a nursery nurse with reduced hours and tasks and, at the moment looking forward to a future whatever that may bring x

Community Champion

Re: newly diagnosed

Hi to all, especially the newbies who find themselves here.

I have been living well with secondaries for over 11 years now.  Initially in bones then in the liver.  The only time I tend to feel less well is when I'm on chemo, which is understandable! I have been able to continue living in the moment and enjoying life as much as the treatments allow me to.  Most of these 11 years I have been fine as I have alternated between hormonal treatments and chemo plus a bit of surgery thrown in for good measure!  Initially I continued working part time, even on chemo, but now don't work through choice and the difficulty with continuing with my then job.  I do get more fatigued now but that's to do with current chemo and also no doubt age plays a part in that. In my 11 years I have seen my 2 daughters go through secondary school, university, new careers, one wedding and also a grandson, things I never thought I'd be here for.

My motto has been Carpe Diem - seize the day

I hope you continue to feel well.

Nicky x

Member

Re: newly diagnosed

i said the same thing to my consultant this week, i am now on cylcle 3 my hair is coming out a bit but it is long and very thick so could possibly cut it to stop it pulling so much, but on the whole i have not felt so good in ages. my blue badge came this week which did upset me a bit but also will make life better in the long run x

Member

Re: newly diagnosed

I was diagnosed a year ago - straight to stage four with mets in the bones. I’m on Pacibiblib and Letrosole and so far so good. I agree about feeling well. It’s so odd to be so ill and feel well! I exercise a lot and try to eat well. I’ve also given up alcohol. I said to my oncologist on Monday that it is strange to feel so well. She said that’s the aim of newer treatments. I agree with you and try to enjoy it. Not a bad maxim in life!

Member

Re: newly diagnosed

hi I am in similar situation secondaries in lungs and pelvis and base of spine13 years after initial breast cancer. Initially was told it wasnt secondaries but 5 months later was found to be after mammogram. Been on letrozole and palbociclib for over a year which scans show things stable. You are right the forum shows people living so much longer with secondaries. Keep well and strong Liz

Member

newly diagnosed

hi to you all

i had and beat breast cancer 17 years ago after chemo and masectomy, so you can imagine my shock and disbelief at being told i had metastatic cancer in my lung and bones all this time later. i had a rough two weeks when they misdiagnosed me with pneumonia but since i have started my treatment things have settled down apart from severe tiredness. i am on ribicuclub and letrovose everyday and find it hard to believe that i can feel relatively well while being so ill. i think the best thing this forum has given me is hope. when i see people who are 5 years in and longer i am beginning to believe i am not going anywhere just yet am and definitely going to make the best of the time i have left.