I was recently diagnosed with BC (IDCS) with 4cm tumour and Mx clear at the margins but five lymph nodes infected out of 11. I saw my oncologist for the first time on Wednesday to discuss chemo routine which starts on 23rd of Jan (3 FEC 3 TAX) and said as I was leaving - the he should probably just send me for a CT scan (pelvis, abdomen and chest) before treatment starts. I had this late on 7th Jan. Then I received a letter this morning (sent out day after scan) asking me to go for a whole body bone scan (NM) next Tuesday. I am so worried - does this mean they found something really bad on the CT? Has this happened to anyone else - asking for a follow-up scan out of the blue… all I can think now is that I must be terminal…and I haven’t even started treatment yet (my cancer is weakly positive for oestrogen and negative for HER2 and Prog)…
Before I was due to start chemo I was sent for CT and bone scan, it was routine to do both and both were done within a week. I wouldn’t have thought your onc would have had results of CT scan back that quick either. Why not speak to your BCN? My BCN was so helpful and it didn’t matter what my worries were she was often able to reasure me.
Another way of looking at it - if CT scan showed secondaries would they bother with bone scan. Hope that doesn’t sound too crude, not meant to. It is so easy for your mind to race away and think the worse, but its normal. Its an awful place to be in and I wish I could give you a hug.
Don’t panic ! I know it’s easy to say but is probably protocol and the delay may have been due to availability and liaising with the NM dept as it’s a special procedure.
When I was first diagnosed I was sent for ultrasound scans on liver and abdomen (they’d already been done in clinic on neck area) and whole body bone scan within a week and before I started chemo and was told it’s normal procedure round here. It’s a bit wierd as you have radioactive stuff put in your veins, have to go away and drink plenty and then go back for the scan. And here when you go back there’s only 1 loo you’re allowed to use and it has radioactive warning signs on it !! I’ve had 3 of these scans in just over a year (they found early stages of bone mets in a couple of places but they are confident of controlling it and I am on bone strengthening drugs to help and don’t get any pain yippee) so am used to it now. My mum had the same procedure 5 yrs earlier, nothing showed and she’s fine.
Do you happen to know whether hospital rings up with results if they are clear - and not if they are not? I am just thinking if I don’t hear anything before appointment whether it will be bad news.
Sounds a bit strange being radio-active. Glad your bone mets are stable.
My bcn or research nurse who works with onc rang either way - 1st time to say suspicious areas, 2nd to say areas had shrunk a little bit meaning it was cancer rather than wear and tear and 3rd time to say it was stable. May be different in other areas and just that both nurses have been there years and were involved with mum’s treatment as well and are very good with the emotional side of things and how to tell people.
You may glow in the dark …no you don’t really !! But you can’t have kids sitting on your knee for something like 24 hrs afterwards (I don’t like kids so that wasn’t an issue for me !)
Hi Bright,
Try not to panick (i know easier said than done) i had a ct scan a couple of months ago and the scan showed arears of concern on my spine and rib, also a thyriod nodule, My onc ordered an immeadiate NM whole body bone scan and like you i was terrified . before the scan i had some radioactive stuff injected in my arm and then had to go away for 3hrs then come back for the scan. I had an appointment for 2 weeks later for the results but had already asked the person doing the scan how long the results would take,to my surprise he told me my onc would have them in 2 days. I rang my oncology dep after 2 days and my onc rang me that evening with the results. I was so relieved when he told me that the results came back all clear .
I know how terrifying it is haveing to have more scans and the waiting for results , but CT scans can pick up allsorts of things, like previous injuries, artheritis, and other stuff cos they are very sensitive.scans. My onc said to me the reason they dont scan routinely is because unless you have lived a perfect life and never had any knocks and bumps a scan is bound to show up something.
Try not to worry to much yet (i know its hard) but hopefully if you find out how long the results will take to get back you will be able to get them pretty quick also.
All the best and Good Luck.
Lindiloo x
Hi
As Lindiloo says scans can pick up all sorts of stuff now they are so sophisticated. After mine the onc told me that they’d found nodules on the adrenal gland and in the liver but said they’d watch them for a while. I was worried sick! But they turned out to be cysts. The scans are so sophisticated nowadays that they pick up things which otherwise would go undetected (in other words - don’t matter). I’d be surprised if your scans didn’t pick up something - but they’re probably nothing to worry about.
Don’t ‘google’ too much - you will worry yourself silly!
Thanks Mal and Lindiloo - and I suppose it is better to know than not to know - not least to show that chemo is working. Thanks for reading and sending your thoughts xx
At my hospital it seems all bc patients are sent for chest x-ray, bone scan (full body) and CT scan when they are diagnosed as a matter of routine. All the ladies I met there had them…including me.
I was told the results next time I saw my surgeon, prior to surgery, and was also sent a copy of the letters they sent to my GP at every stage of my treatment.
Just writing to say that my scans were clear (bone and ct). The wait was the worst part! It is nice to know that even if it just for the moment I am free of cancer (at least at the level of detection from scan)
Ahhh bright, wonderful wonderful news. Really pleased for you, in fact I’ll raise a glass of wine to you tonight, better still have one yourself (if you drink wine).
Bright! Wonderful news! We’re coming up to Burns Night, so I’d suggest “sip a cup o’ kindess”… Or rather, we’ll all do that on your behalf, any excuse, but here’s a bottle for you (hands over humungous bottle of Bright’s favourite). :0)
Thank you all so much for your kind words: raised glasses; encouragement etc. I have first session of chemo tomorrow (3 FEC100 and 3 Tax)… but fearing these a little less now that I have the scan results.
I wish you all the best of luck on this journey too and will probably meet again in other strands.
