Hi I have just been reading a few comments about cat scans in the standards of care forum and this has prompted me to ask others opinions. My Onc. wants me to have a cat scan because I have Lymph node invasion. She is quite upbeat about it but says it means she will get a clear view of the whole picture. I don’t want one. I am having chemo to shrink tumour then surgery and my argument is that I don’t want to know if it has spread and surely the chemo will hopefully deal with it. I am happy to have a scan later down the line but mentally I cannot cope with the knowledge that it has spread and I have said that I am far better off just going for the treatment and seeing what occurs later. She is very jobsworth and won’t do it without following the procedure list. She has agreed I need not have the bone scan and I have had a chest x ray. I am booked in for Tuesday with chemo starting on Friday. I am in a real state - not at the thought of chemo but the scan. I would be interested in people’s thoughts. I am at Exeter Hospital which is a training hospital and I understand they have a good reputation and do things their own way. Jaynexx
Hello Jayne,
Hope my story will help. I had the scans pre-chemo as tumour grade 3, they showed mets to liver & lungs. After 6 docetaxol + carboplatin + herceptin, the mets had shrunk to virtually nothing (largest of multiple liver was size of tangerine).
So, I’ve wondered if I was better knowing or not! The main difference I can pinpoint is I’ll be offered herceptin ongoing to control the cancer cells circulating in my blood, rather than the 1 year treatment offered to those diagnosed only with primaries. I figure that improves my chances.
I had a bone scan too, and after the CT results, asked not to be told the results as I couldn’t cope with any more. So, I really understand your thinking. Good luck making decisions, remember it’s your decision, not the onc’s! Sarah
Dear Jayney
I was given a CT scan because I had a second mass in my lymph nodes that was positive for BC and also had some other unexplained symptoms. I’m the sort of person that likes to know what I’m dealing with so I accepted - and wanted - the scan. However that was the worst ‘waiting room’ experience as I couldn’t cope with the ‘what if’ scenarios that my brain kept dealing me with.
I’m lucky. there was no spread so it’s a straightforward chemo/rads/hormone treatment plan. That makes it (for me) a little easier to deal with. I don’t have too many ‘unknown’ situations now.
The only words I can offer you - because we are all different - is talk to someone who understands what you’re feeling and who isn’t going to put pressure on you. Personally, I think this is your call and whatever happens, we’re all here for you. That’s probably not much help but it’s meant from the heart. xxx
Hi Janey
I was diagnosed last June but because I didn’t have a lump I need a CT scan to rule out the possiblility that it was a secondary cancer from somewhere else - to be honest, I was in such a state I never even thought about refusing it. I was lucky that it showed the cancer to be a primary so I had 8 FEC/Tax, mastectomy and then r/therapy - I’m also on Herceptin until November. I also had another CT scan towards the end of my chemo to make sure it had been working - which it had. However, I know nothing about grades/stages etc because I’m terrified of finding out how bad it was - and still am! I would just like to say though, that when I found out I had cancer I thought I’d never be happy again - but, once my treatment was underway, I discovered a strength I never knew I had and although the last year has been the most challenging of my life, it’s also had many positive moments.
Morning! Just thought I’d share my experience with you. I have secondaries, and the treatment you recieve is different. Your Onc will tailor-make your treatment plan around this information and can treat the tumours as they appear with appropriate treatment. Hopefully it will shrink the tumours and help you live a much longer life. However if you don’t have the investigations then they won’t ever know… you may ( and god forbid you don’t) have secondaries which go untreated and your life expectancy is somewhat shorter than you may have wanted.
I have 3 young children and it is essential I stay alive to be their Mum for as long as possible, so …with regular CT scans to check on my mets and the correct and ever-changing treatment plan I certainly would not be here today 2 1/2 years after diagnosis.The tumours in my liver, left to groe unchecked and untreated would have seen me off a while ago.
If you still feel that you would not want extra treatment to keep you alive longer, nor the knowledge of this then don’t have the scans. There is no requirement that you have to have them. it is your body and your decision. Good Luck!
Hi Jayne,
When I found my lump I was terrified. I had the works in terms of diagnostic tests as I trusted my team at Ealing/Charing Cross completely - ultasound of axilla, lscan chest CT, abdo/pelvic CT, breast MRI (both breasts) and bone scan evethrough no evidence of disease outside my breast. I wanted them to have the full picture before ordering treatment and so they knew what they were dealing with. Personally I wanted to know if I was stage IV; I wasn’t and am not as far as we know so far.
I think but don’t know much about it that perhaps the treatment plan changes if one has mets; for example many secondary ladies here have mentioned they didn’t have surgery on their breast when the mets were discovered. I think there are also different drugs given for mets, for example bone mets might respond better to bone-specific drugs rather than chemo? I don’t know as I don’t have direct experience, but just sharing what I think I have learned from these boards. Please don’t think I know much at all about these things - I’m not an expert and others will hopefully correct me if I’m wrong! Can your BCN help at all?
So I think, for me anyway, that having the scans done is important to ensure that I get the right/best treatment for my situation. Whether you want to know the results yourself is a different matter! 
Wishing you luck whatever you decide.
Lisa xx
Hi Jayney,
When I posted to you before I said I’m only a week or two further along than you, in that I’m waiting to start chemo to shrink my tumour but I had the results of my scans back this week. They were clear of secondaries, but my CT showed up a pulmonary embolism (clot on the lung), caused by the cancer. I got treated for this straight away with heparin, as it’s very serious if untreated. I only had a bit of a cough, so if I hadn’t had the scan I wouldn’t have known. Before starting chemo I want to know they know as much about my health as possible, and the scans could show up other (non cancerous) issues that you need to know about.
I hope this helps. I’ll be thinking of you on Tuesday.
Joan xx