Some of you will have heard me ranting on the BCC telephone support group on Monday. There will also be plenty of you “mutants” out there who did not/will not attend any support group - fine.
It is a fact that mammograms only reveal at most 80% of malignancies.
It is also the case that mammograms can be as little as 25% effective for those of us with a BRCA mutation therefore MRI should be offered. This is just one link which supports this:
Also worth knowing is that NICE guidelines also state that MRI surveillance should be offered to ladies who have not necessarily been found to have a BRCA mutation but are at raised or high risk, regardless.
Please do not be fobbed off by GPs or hospital staff who try and steer you away from MRI screening if you should have it. If they cannot offer MRI screening at your own hospital then ask to go to another.
Stand your ground, do not be shy or deferential, print the NICE guideline and shove it under their noses - DO NOT BE FOBBED OFF. Think of it as having the potential to mean the difference between life and death, then you won’t be so concerned about making a fuss.
I think I would be in a right pickle now if I hadn’t had an MRI 18 months ago. Mammogram would have shown nothing. The sad thing is that I was only given one because I was being considered for a trial!
hi all problem for me is NICE doesnt cover scotland where i am. im brca2 and have to make do with mammograms love lainey x ( i must be less important than others)
hi ladies my older sis stays in scotland tooa nd she gets mri??? not fair in my opinion. i have been to mp and wrote letter after letter and e-mail and still told no. my hospital has 1 but doesnt have staff to read results…xx
Hi all.
I have had the surgery now, but when I first found out I was BRCA2 I wanted an MRI straight away - just to check if I already had cancer (my sister’s cancer was so deeply hidden that they could only see it on an MRI - after it had spread). I felt a mammogram wouldnt be comprehensive enough. I was 38, and my local PCT didnt fund MRIs for ladies under 40. My surgeon was sympathetic, but her hands were tied. My only option was to have one done privately. Luckily I confirmed with the surgeon that the MRI was the only private bit - so any resulting treatments would be on the NHS. It cost me £400, and I had it done by the same people who would have done it had I had a NHS funded one!
best wishes
Jane
I found out I am a BRCA1 carrier in 2003. Since my gene test I have always had a breast MRI, once a year and also a mammogram every 18mths. Dig your heals in ladies and don’t take no for an answer. It was my geneticist that made the arrangements for the MRI initially but after the first I have had to remind my GP when I am due for another as there doesn’t seem to be an recall for them.
Breast MRI’s do throw up more false positives than mammograms, although I’m not sure how much trust I have in mammograms. Had my last one in Jan '08 which was given the all clear, then I found 3cm IDC four months later. Currently having chemo!
Good luck to you all, and remember ‘No’ is not an option.
Please could any of you good ladies explain the mri procedure to me? also where it is done in the north west of england?
I have a very tender, lumpy breast and underarm and really feel that I cannot put it in the mammo machine at the moment. I am aware of it always and it is painful if I lie on it/ press against it. Have asked breast care specialist nurse to look at alternatives but no joy with answer as yet. Do they scan just that area in a contained unit?
My 1 year mammo is due next month and I am keen to find somewhere / someone who could do the test for me. Also does anyone know what one would cost if I went privately?
thanks,
cheers for now
V.
Violetta
Mine cost me £400. I went through my surgeon - she referred me to a local private hospital, who then sent me to my NHS local hospital to have it done, they then billed me for it.
I am in Sheffield, so it was all local to me, I am not sure about in the NW of england, but your nurse/surgeon ought to be able to help. If not contact your local PALS (patient advice and liaison person - your local NHS website should have a contact address). They tend to find out stuff fairly quickly so might be a good option.
As for procedure - very simple - but you will probably have to lie with your arms above your head. Mine just looked at my breasts and armpits. It took 20 minutes. I was fitted with an automatic injection device beforehand, then wheeled into the machine. If you are clostrophobic it might not seem nice (it can seem noisy too as it “knocks” as it takes pictures), but as I was on my front I wouldnt have known where I was really. I wore headphones and they told me what they were doing as they went along. I had to lie very still, and had a dye injected at one point - they warned me when as it went fairly cold. All in all it was painless, simple, and quick. I’ve never had a mammo, but this seemed a lot easier than what I have seen from mammo’s on the TV.
best wishes
Jane
Thanks Jane,
I will be onto it first thing tomorrow. Having said that it would be too painful to lie on my front so I am not sure it would be any better,
cheers,
V.
Lynni
glad you butted in - I had forgotten to mention that (like the use of the word “trough”!!! - there is no better word to describe it)
best wishes
Jane
Hello,
I wanted to clarify the guidance that exists for screening those people who have an identified BRCA mutation.
NICE ( National Institute for Clinical Excellence) guidance 2006 provides screening recommendations for those people who have been identified as BRCA gene carrier but who have not had a diagnosis of breast cancer.
For those people who have had a diagnosis of breast cancer and have also been found to be faulty gene carriers there are no National guidelines on how to screen after initial treatment has finished.
It is important to say that this is a small population of people within the wider population of people diagnosed with breast cancer, and for this reason it is important that follow-up screening is agreed on an individual basis between the patient and the specialist team.
If you have questions or concerns about how you will be monitored following treatment for breast cancer, and you have been identified as having a BRCA faulty gene then do speak with your specialist team.
Or if you would like to talk through how you may appraoch your specialist team please do call our free phone helpline on 0808 800 6000 and we can talk through with you your individual circumstances.
hi dahlia, my thoughts exactly it should be the same rule for everyone. i am no less important than anyone else but have been made feel this way by nhs postcode lotteries. my sis who lives in aberdeen gets mri screening i live in glasgow and am told there isnt funding for it here. it is disgusting. we should all be treated the same. there is no excuse for these issues. i get so angry as i carry brca2 gene and been told mammograms are only around 25% effective in my age group (im 32) so what am i supposed to do? love lainey x
Forgive my ignorance, but where does ultrasound fit into all this? I thought that u/s better at detecting lumps, especially in younger women, and surely cheaper than MRI and therefore more readily available? Is an MRI even better than u/s for detecting very small tumours?
I have had lumps in both breast, first one cancerous, 2nd one having u/s in a couple of weeks when they will also do biopsy, but they have never suggested MRI for breasts. Had several for back problems, since I had chemo.
Thanks for any advice you might have,
Regards, Jax
Violetta,
I live in Oldham and had my MRI at Rochdale. I am 36 and my tumour was found using ultrasound. I then had a mammogram which showed nothing. I had a 10 mm tumour and 1 malignant lymph node.
If you put MRI scans UK into Google there is a map of the scanners in the UK -there are not that many. Also the website lets you listen to the MRI noises, which are very loud! I was worried about having an MRI scan but can honestly say I’d have it again tomorrow. It was a little uncomfortable lying on my front with my breasts in the “trough” but it was nothing compared to having my teeth whitened, which I would not do again!