I’m 2 weeks post last chemo and starting rads soon but beginning to think about coming out the other side. When I was first diagnosed my surgeon said I could have all the scans (MRI, CT, Bone) to check for spread. BUT he recommended against it as there is a risk of cancer from MRI and also a high chance of scary false positive results. I didnt have any. I had a full MX, the nodes were clear but I had chemo as the tumor was so large. At the beginning the ONC said theres no point having scans as it wouldnt change the treatment. Now they are saying theres no point as there wont be anything to see, which for me is a different thing. They wont let me have them now. ANYWAY… I cant get it out of my mind it might have already spread and no-one has looked. My dad has offered to pay for the scans. Were you offered them? Does your ONC department do them routinely? Has anyone got any thoughts on this decision? I want peace of mind but would hate to expose my body to unnecessary risk.
Thank you,
Naomi
Hi There
Congrats on getting through chemo 
I was exactly the same as you- I couldnt stop thinking about what might be going on elsewhere in my body. In fact I was obsessed with scans if Im honest!My team kept saying they wouldnt scan unless 4 or more nodes were affected and I only had one affected node. I think the other thing with scans is that they only give a picture of what is going on at that particular moment in time. So they never offer the longer-term reassurance you are looking for. I have been unlucky and had local recurrence straight after chemo, and this made them agree to scan me elsewhere. Thankfully, scans were clear but that was August so I am having more scans next week.
I would say if it is causing you mega anxiety then get the scans done privately if they wont agree to give you themon the nhs. One scan is not going to harm you and hopefully it might give you some closure so you can move forward with your life after bc.
All the best
Tina x
Hi Naomi,
I have secondary, so mine is a completely different story. But as far as I’m aware, if your lymph nodes are effected, CT and bone scan is routine. MRI is quite expensive, so most people won’t be offered this at the beginning anyway. And as far as I’m aware, there’s no radio activity with MRI scan, so not sure where the “risk of cancer from MRI” comes from!!!???
As your nodes are clear, it’s very unlikely there’re further spread. So your onc is probably right in saying that there’s no point in having the scans.
Hope your rads goes well. I’m starting mine next Monday.
Take care xx
Hi I posted this on another thread a while back but can’t remember where!
As I understand it from reading this up, it seems that having scans makes no difference to your overall survival. Taking a hypothetical example, supposing you have a scan that detects very small secondaries, and with treatment you live for 10 years, - if instead you didn’t have a scan for 5 years, you would then live for a further 5. You haven’t benefited from knowing early.
The other thing is that, as somebody said above, the scan is only a snapshot. If it shows nothing, that doesn’t mean the following week another scan would not show something. So how would one set really put your mind at rest?
My onc said I could have all the scans if I wanted them, but she didn’t recommend it. Once I understood why I realised she was not saying this to save money etc. My policy now is ‘ignorance is bliss’ - if it happens it happens, I will have the scans if/when symptoms appear.
Sarah
Hi
I had no scan like you. I asked about on the helpline once and was told that a study was carried where all ladies were scanned after treatment. Then they were split into two groups one set had no scans the other was routinely scanned. They found that the women who were not being scanned who went on to develop secondaries noticed their symptoms at about the same time as the scans picked things up on the other group. Basically, symptoms were just as good a marker of problems as scans and scans cost money and have the associated stress And waiting time. I hope that wasn’t too confusing. Debx
I had all scans a week after dx, it is routine at my hosp, so they know what best treatment you need. I then went on to have wle with clear nodes.
Hi - I’m going to have to disagree a little about the benefit of early scans. It has been the conventional wisdom that it doesn’t make any difference, once you have secondaries the outcome is more or less the same, and some oncs treat with a certain degree of fatalism, holding back treatments for use further down the line. But some oncs are trying a new approach with very early secondaries, but they do have to be caught early.
I have been corresponding with another poster here who is in the same position as me with a single isolated secondary, and our oncs have both taken an approach that if you can remove the primary bc (surgery, chemo and rads), treat the whole body with an effective chemo for isolated cells, and then go after an isolated met very aggressively, there is the possibility of a cure, or at least very long term remission. It’s early days for this approach, but it is being tried at some centres with impressive results so far. But if you wait until you have symptoms of secondaries, it is quite likely to be too late for this approach.
finty x
Just to confirm there is no known risk of cancer from an MRI scan. However,repeated CT scans DO carry a risk of cancer and will not be done without good reason, unlike in the states where money dictates how many scans a patient needs!
SarahALs example is correct,the thinking is that the prognosis is the same regardless of when the mets are diagnosed.Just that you know longer if that makes sense? They don’t prevent it coming back ,just let you suffer/worry longer!
However you really need to discuss this with your Dr ,maybe if you say you are so anxious that your family will pay ,he might realise how worried you are to be told that you are not getting the scans you had come to expect.
I had no scans at first diagnosis but when a small recurrance was found I was given CXR ,liver ultrasound and a bone scan. All were clear but really that was just proof at thet particular time I was NED.(hopefully still am!)
Good luck and try not to dwell on scans.My fav saying is “get busy living not busy dying” (or at least thinking about the latter!)
love
Dot
xxx
Thanks so much everyone for your thoughts and opinions. I do wish I’d had the scans at the outset but not sure I should pursue it now. Its a good point that it only tells you whats going on right now. I will be having another conversation with my oncologist but when it comes down to it I think I have to accept they know what they are doing!
Hi, not had any scans done either, mammogram was clear, bc found by us. Dx lobular, 7cm, multifocal but no other tests done before or after mx. X
I am two years into my diagnosis of bc and find myself in a similar dilemma on whether or not to have a yearly mammogramme. My bc was an interval cancer, a cancer which appeared within the 3 year screening period. But how is this for a contradition of views in the medical profession, when I asked the onc about yearly mammos for the over 50’s as I believe that my cancer would have had a greater chance of being picked up at the dcis stage, he added that a yearly mammo would put many women at risk of over exposure, yet this appears to be ok for women who have already had bc to be exposed yearly. This does not make sense to me. Professor Michael Baumm believes that mammos are picking up more and more cancers early but they do not save lives and they do not change the outcome. The more I learn about this disease the more I am doubting the usefulness of the mammo as a tool of diagnosis.
I have always refused all scans [bone,MRI,CT]and will continue to do so unless I have symptoms which require investigation.I do have a yearly mammo with u/s if recommended.
I feel [and this may be just me] that if secondaries are detected when they are really tiny oncs ‘keep an eye on them’ so you know you have them but they cant be cured-mets are not curable though they are usually treatable.I’d rather not know[the ostrich syndrome]until symptoms mean that something requires investigation.What’s the point?You worry before the scan,you worry while you wait for results,if they find nothing you stop worrying [until next time] and are back to where you were before you decided to be scanned.If they do find something then you really worry even though you are feeling no different.For me time enough when they need to find out what and where-no need for ifs!
I am 4 yrs post dx with tnbc grade2 no nodes involved.
Good Luck
Valxx