Hello Girls,Went for my 'restaging' scans on 06/01/17 & my bloods were taken today to measure my tumor markers, my oncology appointment is 27/01/17.So.... now the wait begins again, no sleep, lots of anxiety, nervous nausea, all the fun things.I dont get why they restage??? isnt metastatic bc stage 4??? isnt it incurable??? so how can it be restaged to another stage???Oh how I have this journey at times. I think I will cheer myself up with new Lorna Jane activewear & a run!!!Cate

Cate, I must admit I don't know about the restaging, but am sure others can jump in. I totally hear you, the anxiety can be unbearable especially in the waiting process. I like that you know the things you can do that not only seem to settle you, but also nurture the person you are. I think this is half the battle really through all of this journey, is finding the things that help. I dont know about you, but I find such peace in the quiet stillness sometimes, just being. Keep us updated! Hugs Melinda xo

Hi CateThis is Kathy from BCNA's Policy Team. What a worrying time for you. I think these scans and tests are pretty routine after a period of treatment and are done to see what has happened to your cancer over the course of that treatment. Has it shrunk (hopefully), has it stayed the same or is it growing. They will use this information to help decide what to do about your treatment - continue with it, change to something else, or perhaps you can have a break if it is all looking good.It is a long time for you to have to wait and worry until 27 January. Could you ring your medical oncology clinic or breast care nurse (if you have one) to see if they can get you in any earlier? Tell them you are anxious about the results and having trouble sleeping.Enjoy your running in the meantime!Best wishes, Kathy

Hi cate I've just had scans last week and my onconlist put restage I don't understand it either I know it's a long wait for you but the fear is soo over whelming I'm thinking of you lots of hugs Sam xxxxxx

@sammy1970 thanks, the fear is so consuming. Whilst I was stable etc in my last scans I know there will come a point when I am not & I am forever fearful of that time.Cate

I only have bone mets and it 4/years my scan I had last showed a tumor on front rib which I had a feeling and because my tumor markers slightly had all the other ones to check it hadn't gone any where else but they were clear the fear is sooo scary my body is soo tied I think from stress but staying on falodex for know this is soo scary knowbody knows what we are going threw it is something we know have and if it appears they can always help us never forget that there are new treatments all the time I know that's how I live I wish I could you soo much with the fear I felt it last week but I'm here for you if you need me and my breast nurse is on holidays at the moment but they sure help understand I just like to jump on and try and help please I'm here if you need me wishing you all the best ❤️

NEARLY THAT TIME AGAIN!! | BCNA Online Network

32 Replies

iserbrown
Member
9 years ago
@lesleyb - sounds like your Onc is listening to you and of course checking the scans. :) Wishing you well, take care
lesleyb
Member
9 years ago
My tumour markers don't work unfortunately. Onc relies on how I am feeling and scans.
Cate64
Member
9 years ago
@lesleyb Xgeva is supposed to cause bone pain so it may well we that. Having said that I am currently on Xeloda, end of week one of 2nd cycle & so far - touch wood - have suffered no side effects to speak of. I have great QOL, I work full time & run 5km @ parkrun each week & even through some actual running events into the mix, especially if there is a medal to be had...

Good luck with your scan results.. Does your Onc test tumor markers?
lesleyb
Member
9 years ago
Hi everyone. So sorry to hear you all have so much scanxiety. Goes with the territory doesn't it. I am 2 and a half years out from dx of Stage 1V and have only had AI's and Xgeva so far even though I have had small progressions here and there. The Xgeva is doing its job of replacing some old bone with good healthy bone. My onc wants me to stay off chemo for as long as possible so that I can have good QOL. However, after scans this week I am thinking it will be my time to start Xeloda when I see my onc on Monday. Body pain is getting worse but it could just be the Aromasin that is causing it.

Oh well, whatever will be will be. Ce'st las vie
melclarity
Member
9 years ago
@Klea WOOHOO!!!!! That is AWESOME!!!! I think youre doing everything right! and yeah Cancer Drugs uuugh! as I said I have Osteoporosis in my neck and lower back..apparently LOL. I shouldnt laugh but OMG really? all from Chemo..so yes Vit D and C for absorption, and magnesium I take. I also have 2 Prolia injections a year! Im recovering from a Mastectomy/Diep flap recon at the moment so Ive forgotten about my bones for now LOL. Hope youre on the mend! Hugs xo Melinda
Klea
Member
9 years ago
Well Mel its good news the fracture was due to the fall YIPEE!!!!!!!. No cancer progression and all still stable a big relief !!!!!!!!!!!!!!!!. However I do seem to have signs of oesteoporosis which is a worry. I am on xygeva , calcium vit D and do weight bearing excersize. Not sure what I can do about it. I suppose its the price we pay on these cancer drugs ?
Klea
Member
9 years ago
Will do Mel I suppose we only realize we have a problem with our bones when they break. I feel fine too I was extremely surprised at results thought I would sail in have a quick chat get told all stage see you next time. So know I get a double dose of scaniexty
melclarity
Member
9 years ago
Klea stupid thing is I felt absolutely fine, I sometimes wonder if they got it wrong with the Osteoporisis, admittedly I have pain constantly in my neck and lower back but I never worried of breakage. Uuugh let us know how it goes xo
Klea
Member
9 years ago
Thanks Mel I am really hoping so. That dam hammock fingers crossed. Bit worried though as xgeva shots supposed to strengthen bones . Oh well have to do more modelling assignments ( scans) to see. Thanks for the support.
melclarity
Member
9 years ago
Klea Damn! could be from the fall. About 5 months after Chemo my Oncologist decided to do a bone density, I felt fine! Ummm came back with Osteoporosis in my neck and lower back. I am now on Prolia injections twice a year, and am slowly heading into muscle work which really helps. You're quite active so hoping scans come back aok!! xo Melinda