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MRI - WHY AREN’T THEY ALWAYS AVAILABLE?

4 REPLIES 4
Frances55
Member

Re: MRI - WHY AREN’T THEY ALWAYS AVAILABLE?

Thank you Jan.  I will certainly read this.

Frances x

Jaybro
Member

Re: MRI - WHY AREN’T THEY ALWAYS AVAILABLE?

Hi Frances

There’s an excellent article one of the nurses posted on here a few years back, written by a psychologist attached to my hospital. I just keep it going because it has helped so many. The insight into our situation really hits home. I hope you read it and can identify with some of it. There’s also useful stuff on Future Dreams, a site developed by one of Peter Harvey’s colleagues. You might also find something helpful on the Penny Brohn site (this is the only time I would advise anyone who’s had breast cancer to use Google!!)

Thank you for your good wishes. I do hope you find some peace of mind. This is a pernicious condition at any stage and there are no comparisons - the trauma can be as hard for someone at Stage 1 as at Stage 4 so no, you haven’t been lucky and there is no ‘should’ about how you feel!

Here’s the link: https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...

All the best,

Jan x

Frances55
Member

Re: MRI - WHY AREN’T THEY ALWAYS AVAILABLE?

Hi Jan,

I’m sorry to find you here.  Thankyou for your wise words; they did resonate with me and yes, I feel anxiety is rising.  I am going to talk to someone.

This experience we have is trauma.  Everyone thought I coped because I was busy with my family and moving house.  Even I patted myself on the back, I’ve got this.  Then it hits, a few weeks/months later, when they’ve sent you on your way.  All the fear and trauma I blocked out getting through it I suspect is hitting home now.  

I lost a bit of trust in my team as I felt things had been missed and I had to ask for my mammograms to be re-read.   I didn’t have radiotherapy, Chemo, or even see an oncologist.  Just mastectomy and Tamoxifen for now.  I know I should feel lucky, but I don’t.  I felt scans would help me to move on.

I wish you all the best with your recovery.

Frances xx

 

Jaybro
Member

Re: MRI - WHY AREN’T THEY ALWAYS AVAILABLE?

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.

Jan 

 

 

Frances55
Member

MRI - WHY AREN’T THEY ALWAYS AVAILABLE?

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