Hi Daisy. So pleased to hear your good news. You sound so much more positive and it is great that your chemo is starting so soon. Whatever that brings - & I do hope it goes really well - you will know that treatment has started.
I do agree that I feel so much better for having had the scan. You feel that every appointment is more bad news & almost expect it to continue like that. To get a good result does put things into perspective again. I know we will undoubtedly have plenty of bad days along the way but at least we don’t have to deal with a worst case scenario right now.
I haven’t told anyone other than my husband yet. Although difficult I did want to wait to tell my grown up kids until I knew just what the situation was. I also want them all to know at around the same time. This week is complicated by a family member going into hospital for an op, so we are waiting a few more days. And I feel so much more at ease about doing it as I don’t have to give them either half truths or more worry than necessary whilst waiting for further results.
Wishing you lots of luck along the way x
That’s great news grannyp! I also got some good news - after having to go for a pet scan for various indeterminate things (spleen, thymus, and another node in my chest), and that was unpleasant because I couldn’t be around my toddler for 6 hours afterwards because of the radioactive dye and he didn’t understand why I couldn’t cuddle him 😔 Just had a call from my onc that all is good, just the lump and the axillary lymph like yourself.
How weird to have come full circle with so much stress, but a useful experience perhaps because the diagnosis that made me hysterical a few weeks ago I now see could be so much worse. Also at least now we know for certain everything else clear - I was winding myself up with every cough, ache etc. Also not sure if you have told your family yet grannyp but I HATED doing that, but did find it a lot easier telling them once I knew I could put a positive spin on it, that it was definitely not spread etc.
i am starting on chemo first because I am triple negative, starting on Friday. Surgery will depend on how that goes and also I’ve had a genetics test done due to my age, so if there is something dodgy I may go the “full Angelina Jolie” 😆
good luck grannyp and everyone, hope today is a good day for all xx
Well, it turned out that it wasn’t a ‘full body’ scan after all!! I had to advise my BCN of the date of the scan and I decided to ask for the reason for a full body scan. Apparently this is just the terminology sometimes used in breast cancer care for a neck to pelvis scan which seems to be the usual scan carried out! Glad I asked - I would have been totally confused when I turned up for the scan.
Anyway, scan last Wednesday & results on Friday. At last some good news - lump & lymph node just as already known & everything else showing as clear. So now I know I am looking at lumpectomy and full node clearance as first treatment. But yet further waiting - surgeon on annual leave, so have to wait until next week for appointment to discuss surgery and book a date. Although I am now much calmer the waiting really is the worst part.
I am sure that most of us over think things - I do it in normal life but it is totally exaggerated in this surreal situation we find ourselves in. We just have to keep going, breathe deeply and remain positive that all will be well.
Hope you are continuing to respond well to chemo. Take care x
Sorry to hear you have inconclusive results from your scan, Daisy. Hope you haven’t got to wait too long for the PET scan and that your treatment will soon be starting. All this waiting around is so awful - at times almost impossible to deal with. Take care
I just got my CT results and not sure what to make of them! Liver, lungs, bones all clear, mass was as before and nodes positive, all no surprises. But there are two things my onc is confused about. One is an 8mm mass on my spleen - she reckons this may be nothing to worry about as it would be rare to see mets there without mets elsewhere. The other is an enlarged thymus. She does not know how worried to be about this as she says it is unusual!
Has anyone heard of anyone having involvement or incidental findings in the spleen or thymus? Now booking in for a PET scan and chemo delayed for a week, which is frustrating...
Hi Granny P
the chemo is going ok thanks ...week 10 of paclitaxel tomorrow, then x 4 , 2 weekly dose dense EC....should be done Chemo by end of November.
hopefully you will get to speak to someone this week about your CT scan. I had a heart scan last week too...it is protocol for my 2nd chemo at my hospital....but that panicked me at the time it was requested.....I think my tendency to overthink Things is massive.....but I just can’t help myself 🙄
I try to play the ‘what do I KNOW’ game , instead of the ‘what do I THINK’ one....but very hard.....hence all the anti anxiety meds I take!
look after yourself
I found your post quite reassuring. I was beginning to feel as though I am the only one out here who has never been offered a scan of any sort. Just that ultrasound at diagnosis and CT planning scan for radiotherapy. Like you, I have never been given a stage but I am also a Grade 2 with lymph node involvement that hadn’t shown up on the ultrasound. I had a mastectomy for the removal of an 18mm tumour, followed by a full node clearance two months later. I was not given a baseline DEXA scan before starting Anastrozole either. I appreciate that some of my treatment has been derailed because of Covid but I also have the nagging suspicion that I have fallen through the net at times.
You appear to be far more philosophical and satisfied with your treatment than I have been. I propose to take a leaf out of your book and do likewise. If I can... Can’t help feeling the teeniest bit envious of the certainty, and hopefully reassurance, that would come with a full body scan though.
Thank you so much Kitkat23. Yes, I think it may just be hospital procedure. I knew I would have to have scans as lymph node involvement was already known. I suspect that if one was found on ultrasound there will be more, so guess the risk of further spread is already increased. But I also know that may not have happened. It was just the full body that threw me rather than the chest/abdomen and bone scans that seemed to be more common from what people on here and other forums have said.
I am going to query though. My only contact is BCN so far, so it will have to be her.
How is your chemo going? Hope it isn’t too bad
Yes I am now learning rapidly that there are many differences in approach and treatment. I guess we just have to go with it and trust the experts but I will definitely be asking for the reasoning behind each decision.
I think we are learning that as well as each of our cases being individual, not all hospitals follow the same procedures or protocol. I sort of assumed they would. I don’t think it means that any of them are wrong but I will certainly be asking for an explanation of the reasoning behind all decisions.
I am almost expecting the CT to show something- not necessarily related to this cancer but at my advancing age I am sure there will be other things going on somewhere which may throw a spanner in the works!!
I know from seeing other posts that your situation is so much worse than mine as you are a young mother and my heart really goes out to you. I do hope that your treatment is soon under way and that all goes well. Try to stay as positive as you can.
Thanks Jaybro for taking the time to write such a long and positive response. I think I was having a ‘down’ day yesterday. The meeting for results wasn’t actually awful at all - I already knew it was cancer & that the likelihood of the node biopsy also being positive was very high. I was also totally expecting some sort of scan/scans and was also relieved that they already had the HER2 result as I had heard/ read that sometimes that can be delayed. So, strange as it sounds, I was quite comforted by having as much detail as possible at this stage & by the surgeon saying that if the scan is clear surgery will be the first thing.
I think yesterday was just a ‘down’ day and I went through that usual ritual of suspecting there is more that they haven’t told me. And whilst I know that every single case is different and we absolutely cannot compare I couldn’t recall reading - on this forum or other reputable forums - of anyone having a full body scan. I definitely haven’t been consulting Dr Google - that way lies madness!!
It now seems that different hospitals/ trusts may have different protocols. Thinking rationally I know this was the case when my husband had a prostate cancer scare - he was given an mri first which was not standard procedure at many other hospitals.
And it is certainly better to know the whole picture. And I was told that if anything does show up it would simply reverse the order of treatment. Although this could change time & time again I will hold on to that for now!
Hi grannyp, I am in a similar sort of position. I have axillary node involvement and was told “no ct”. Then my mri showed internal mammary node involvement and they said ct. I am a “20 questions” kind of person so I had to ask all about it! My onc said they used to ct everyone, but then it showed too many incidental findings (I think we should both prepare ourselves for this - it could show up something that ends up being fine but needs to be checked out), then they used to ct everyone with nodes, now they only ct people with 3 or 4+ nodes. This is my hospital so obviously it seems different hospitals do totally different things. Each approach has pros and cons I think. For my part, I wish I’d known upfront or even not met with the onc before they’d seen all the scans because I’ve found it harder finding out more bad news at each stage and am now feeling sick about what the scan may have shown. I had got my head around being stage 2, time to fight! I’m afraid my mental strength will be challenged if my prognosis is less good...
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
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 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
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?