Hi everyone,

I’m new to the forum and am interested to hear about others’ experiences.  
I’m 13 weeks post mastectomy after IDC and DCIS found earlier this year.  Thankfully I had no lymph or vascular spread.  Overall I’m Stage 1 strongly oestrogen + HER2 -.  

The indeterminate calcifications were missed on numerous previous mammograms over the last 5 years.  I’m worried about this and spread.  I want an MRI but it’s never been in my treatment plan and they won’t do it. 

Post op histology also revealed LCIS which initially I wasn’t told about and I’m now concerned about Lobular in my other breast.  All my concerns have been brushed aside.  I’m very anxious.

I’m wondering why MRI’s are offered routinely in some Trusts but not others.  Or, is it all geared to overall staging, or even cost?!

Private MRI’s are an option which I may take but I don’t feel I should have to frankly, and it makes me angry that this isn’t an option that is available for everyone, understandably.

I’m interested in everyone’s thoughts and experiences about MRI’s or the lack of them!

Thanks. Xx

Hi Frances

I can understand your anxiety and it seems to be spiralling.  MRIs, as far as I’m aware, are not carried out routinely after surgery. If there is a risk of spread, a CT scan is done. When there is no lymph node involvement and the surgeon is certain s/he has secured clear margins, it’s a waste of a valuable resource, which may feel like a slap in the face to you. Obviously your anxiety about spread is high but, to clinicians, there are no grounds for concern, not even close.

Your treatment plan, which I presume includes hormone therapy if you are strongly oestrogen positive, will have taken all your concerns into account. They certainly don’t want patients to have a recurrence or a spread and HT is a proven and effective treatment. LCIS isn’t cancer, though it can be an indicator of vulnerability to breast cancer - this will be incorporated into your treatment plan. And you will usually be monitored annually for at least 5 years. 

Currently the NHS is short of 3000 radiologists but that doesn’t explain why you haven’t been offered an MRI.  It’s a question of is it necessary to expose you to radiation and the answer here is no, it’s not necessary. In any case, you would be more likely to be offered a CT scan as an MRI is not appropriate in your case. But the argument is the same. I had my mastectomy done privately and was Stage 3, one lump ductal, one lobular, one heavily hormone positive, the other triple negative (I guess I’m greedy) plus heavy node involvement. I’d had a clear mammogram and the breast consultant initially told me I had nothing to worry about! Anyway, a CT scan followed my mastectomy and full axillary clearance as they couldn’t secure clear margins. I wasn’t offered an MRI.

Unfortunately, cancer treatment by the NHS is purely clinical and doesn’t deal with emotional or psychological issues that arise. This is where you need to contact an organisation like this (the nurses’ helpline is excellent - number above), Macmillan, you may be lucky to have access to a Maggie’s Centre and there’s also Future Dreams, a London-based charity that looks after people touched by breast cancer and helps them to move on.

I’ve had a LOT of contact with women with breast cancer and I sense that, even if you did have a CT scan or MRI, you still would not be reassured. It takes time to recover from the huge blow a cancer diagnosis is, whether you’re Stage 1 or Stage 3 - it still turns your world upside down and leaves you feeling your safe world is no longer safe. These are the issues that you’re going to need to address. By all means, go for a private scan but there is a lot more to your anxiety than a scan result can resolve. Find someone who understands cancer and get talking is my advice.

I do hope you find peace of mind. It’s a horrid situation.


Hi Frances55, I haven’t posted much lately but am now very interested in the whole MRI question. I have twice been diagnosed with lobular cancer in my right breast (2008 and 2019). Neither time was it discovered on a mammogram. 2008 DCIS was seen on the mammogram, and the lumpectomy revealed an 8mm invasive lobular cancer. I understood very little about lobular cancer, in fact did not even realise it was lobular until my recurrence in 2019. I had been discharged from my original follow up in 2018, NEVER having been offered an MRI. In 2019 a routine mammogram found what turned out to be a 26mm ductal cancer in my left breast. Fortunately a very vigilant radiologist was not happy with my right breast and took biopsies which also tested positive for cancer. Even then no mention was made of my previous cancer having been lobular, no MRI offered, and I elected to have another lumpectomy as the tumour was ‘so small’. ie it had not been seen on a mammogram and could not be felt. It was a shock to return for my results and be told that it was lobular cancer, 35mm but no clear margins, and I had to return for a mastectomy. The total tumour was 45mm, so hardly ‘so small’. Having now done further research on lobular cancer, I have asked my breast care centre for an MRI now on my remaining breast (year 3 mammogram has come back ‘all clear’ but I have little confidence in that) and certainly before being discharged at 5 years. They seem very reluctant to do this. My first letter requesting this was sent just before covid hit, so I didn’t feel I could follow it up, though they had replied saying they didn’t think it was necessary. I sent another letter over 2 weeks ago, no reply as yet.

I would also be interested in any other ladies who have had lobular cancer, as to whether they have been offered an MRI, or requested one, and what the response has been?

I too believe MRI scans should be available to people who have ever had cancer. Unfortunately, there are not enough MRI scanners in the NHS and they are very expensive to deploy. Fear of recurrence is something we live with constantly for the rest of our lives, OBVIOUSLY; particularly any metastasis. I am tempted to pay privately for an annual one, but I wonder how much a full body scan - to include head (brain) and neck - would be. Apart from the fact a request may just not be granted.