Full body CT scan following diagnosis

Hi all

Had results yesterday - as was expected biopsies of mass & lymph node were positive. Was expecting scans would be needed before any treatment due to lymph node involvement so didn’t question anything when told I would have a full body CT scan. However on going back on what I previously read, I now find that this seems unusual. Most people seem to have had partial CTs & bone scans. After feeling relatively positive I am now extremely worried that there was something they didn’t tell me. I was told ER & PR + & HER2-, grade 2 & stage 2. Consultant said if scan clear lumpectomy & full clearance & decision after that on chemo. If anything on scan, chemo first. 
Of course it is the weekend, so can’t speak to nurse until Monday!! Isn’t that always the case 

Has anyone else been given full body CT at this point? 

Hi Granny P

i started chemo in July and have same diagnosis as you…stage 2 , grade 2 ( 12mm) ER ( 7/8) and PR positive and HER2 negative with 1 lymph node involvement .   I had a full CT scan from neck to legs … think it was the protocol at my hospital or maybe just how the Onc works…She actually said she didn’t expect to see anything suspicious… and although waiting for results very scary… I now feel reassured from the clear results.   I know it’s hard not to overthink everything but I wouldn’t be too concerned that it has been requested for you…probably just routine to your Onc or your hospital… hope you get it over and done with soon and you on your way.

i think without the scan I would always be thinking…what if somethings been missed?.

i actually didn’t have scan until after lumpectomy as wasn’t expecting any node involvement , that was when decision was made to have chemo.

maybe speak to your Onc Nurse…I find mine much more knowledgeable about chemo / scans etc than my BCN ( but then it is their speciality).

take good care x x

Hi grannyp

It must have been hard listening to those results yesterday. I can understand your anxiety at the unexpected but these things change frequently once you’re on the rollercoaster and it’s pointless expecting things to happen because that’s what you’ve heard or read. My diagnosis went from ‘I don’t think you’ve anything to worry about’ to the need for a full mastectomy and axillary clearance, with two well-concealed stage 3 tumours and 19 of the 21 nodes infected, in a matter of 4 weeks. Following surgery, I had a full CT scan and later a full bone scan (even later, 2 MRIs, one without the contrast dye because they couldn’t get it in lol). I was cancer-free at all stages. I would welcome every test they can offer you, no matter at what stage. They are precautionary. Obviously sometimes they reveal stuff we’d rather not have known but we’re probably worrying about it anyway and at least our treatment can be adapted to deal with it.

Some hospitals prefer surgery followed by chemo, some the reverse. I think the pandemic has pushed more towards the latter. But Stage 2 is, I believe, the stage where the specialists can swing one way or the other on chemo, depending on the evidence they have. Your CT scan will provide that extra bit of evidence they are checking for - if it’s there.

Everyone’s experience is unique. If by what you’ve “previously read” you mean posts in the forums, remember that most of us who post do so because we have an anxiety or fear so what you are reading may not be representative of the breast cancer world in reality. If you are reading stuff on Google, I’m sure someone by now will have advised you against it - there is no provision for emotion, let alone tailoring what you’re reading to your precise diagnosis.

Good luck with the scan and whatever lies ahead for you in terms of treatment xx

Hi, I must be one of the few who hasn’t had a scan at all apart from ultrasound at diagnosis and planning ct for rads. I’ve never been given a stage but my 19 mm lump was micropapillary er & Pr + her2 neg,  4 nodes taken during surgery 3 of which were positive ( 1 macromet 2 micromet ) I just had extra rads rather than a node clearance.  

At no state was I ever told I’d have a scan, when I queried it I was told there was no signs of spread and they’d gotten it all during surgery. When I pointed out the ultrasound showed nothing in lymph nodes I was told it’s because the cancer was fast growing- it was only grade 2. 
When I moved on to hormone treatment I wasn’t given a bone scan either.

It seems there are as many differences and variations  in treatment as there are types of cancer