NEARLY THAT TIME AGAIN!!

Cate64

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

melclarity

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

Kathy_BCNA

Hi Cate

This 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

sammy1970

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

Cate64

@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

sammy1970

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 ❤️

Cate64

thanks @sammy1970
my mets are also in my bones, the last scan showed significant improvement but that was 6 months ago & I am terrified now, waiting for the results, that them pesky cancer cells have been partying hard & creating havoc.

The tumor on your front rib?? what that a new one??

Cate  

sammy1970

Yes felt pain for last 4months soo I knew it wasn't going to be a clear scan what are you on for treatment I over tumor markers she has put them on again ca15/3when brain scan clear had pelvis abomdiom scan clear chest clear I'm over them do you markers love Sam ❤️

Cate64

@sammy1970
My last tumor marker test was 33, I had a tumor marker blood test yesterday but wont get the results until 27/01.

I have never felt any bone pain I was diagnosed with bone mets after complaining of a lump under my arm that was very painful it was only after them sending me for a load of tests after that they found it.

The original bone scan said clear, nothing in the bone, the PET scan found them.

I am on Arimidex daily along with Calcium & Vitamin D daily & have an Denosumab/XGeva injection for my bones monthly.

Cate

sammy1970

i wish you didn't have to wait so long it is a lot of stress on you which you don't need I was in pain for nearly a year before seen heaps of doctors and they told me to exercise then I found a lump in my breast yes breast cancer had the removed I was worried about the pain in shoulder and a little pain in spine thinking it could be cancer the scan I had here they weren't sure so pet scan said yes bone cancer at the moment for my new met I'm panadol no raditian as yet thinking off you love Sam

Klea

I too have bone mets and due for my annual bone scan in feb. I know how you are feeling my scans have been stable for three and a half years now and bloodwork normal at present. BUT I still worry too.  Just want to let you know you are not alone in the scanxiety condition. Your treatment is similar to mine only I am on femara. Good luck with your results.
Kerri

Cate64

@Klea
Scanxiety... I like that word....

My cancer was/is ER+ & PR+ is that different to yours as you are on Femara???? & do you have bone mets?? & how long after diagnosis did you get them?? sorry for all the questions I just like to be in touch with people who are going thru the same thing as me, my husband is great & very supportive but doesnt know how it feels inside to me though I am he tries hard to imagine & respond accordingly.

Cate

Cate64

@sammy1970 how long after your original diagnosis were the mets discovered???

It really worries me that the Doctors seem to gloss over your concerns, like the lump under my arm.... its was there growing for 6 years, tripled in size, changed shape, began causing a lot of pain in my arm, developed mild lympadeama & still they glossed over it waving it off for 6 whole years which mean by the time they finally did investigate it had spread to my bones... If they had properly investigated in 3 or 4 years ago I likely would not be in this position.

sammy1970

I was told I had breast cancer in September 2012 then went through scan and pet showed bone cancer in November 2012 but I had pain well before we knew I had breast cancer wish they had a checked early when I was visiting doctors for bone pain love Sam ❤️

Klea

Cate, My Cancer is ER and PR pos and it is only in the bones so far. I was diagnosed as stage four in may 2013 after complaining of back pain for six months. I t was a massive shock. However I was told it was incurable but manageable. It is a low grade 1 which is slow growing (Thank goodness) . Its been 31/2 years now on the same treatment. I am just 50 now and I have deal with my onc that I will become an old lady. She believes I will so I hold her to that and just hope she has enough treatments to get me there !!!!. Not easy to deal with but just have to have hope. Feel free to "chat "any time
 Cheers Kerri

Southgirl

@Klea your post is so reassuring. My initial breast cancer was 2005 - I had a mastectomy, then 5 years of Arimidex (ER pos HER2 neg) and I thought I was out of the woods.  Then suddenly, 11 years later, bone mets diagnosed in Sept 2016. I am also just on Femara at present - so I am hoping I stay well as long as you have. It is all so very scary.