High risk breast screening - can anyone tell me about MRI?

[WhereAreWeNow]

Hi
I'm on the high risk breast screening programme due to having brca2 gene. I've just got the call for a mammogram and my first MRI.
I'm already dreading the mammogram because I find them excruciatingly painful but I'm also worried about the MRI because I just don't know what to expect and I'm a bit claustrophobic.
I know it's a contrast dye MRI but I don’t know much more than that. If you've had one, could you please tell me what it involves?
Apparently I can request sedation but I don't know if I should.

Also brca2 - The dye can feel weirdly cold but they tell you when it's going in.

You wear a gown on your top half so wear something comfy with no metal on the bottom like leggings.
You lie on your front and they help you position your boobs.

You'll have earplugs and headphones I think (due mine so it's been a year!) And they can talk to you through them and play the radio.

It's noisy in a clanking kind of way but I've often found it like white noise and kind of drifted off a bit.

Not the most fun hour of my year but bearable. Good luck

I had a breast MRI a few years back. I had to lie on my front with boobs dangling in this hole thing in the bed. Felt a lot less confined than another MRI where i was lying on my back.

I went into the unit to get the gown on top (leggings with no metal as a pp said). I didn't take my husband through which was a mistake, he could have come right through with me.

I got asked about my kidney function which isn't great for an unknown reason but still high enough to have the dye, which was fine, just cold as a PP said.

Then I went to the scan waiting room. it took forever because they had given the scanner a software update and then had to turn it off and on again!

Eventually went in and lay down on my front, was helped to position my breasts into two gaps, but this wasn't sore. I like lying on my front so this was better for me than a neck mri that I had.

The staff were kind and checked if I was worried. They played music which was nice, but I just counted my breath. It was over and done quite quickly. I hope yours goes okay too.

Thanks everyone. That's really helpful. I think I feel better about lying face down than face up.
Is your whole head in the machine? Can you ask to come out if you're getting claustrophobic/panicky?
Good advice about comfy leggings.
@SleepDeprivedElf did you feel you wanted your DH there for moral support? My DH is offering to come but I'm saying he doesn't need to. Will I regret that?
@Starryknightcloud do you mind me asking if you're planning on having preventative surgery or if you're going to just keep an eye on things with the extra scans?

I have yearly breast MRI for another cancer inducing gene mutation called NF1.
I love how the MRI gives me reassurance and allows for peace of mind for months.
As others have said, they put a mattress with two holes in which you will position your breasts. You are wearing a gown and you keep it on, open at the front and they will place a blanket on you as well. Your arms will be above your head, in one of your hands they will place a buzzer which you can press at any time if you are feeling distressed or want to communicate through the microphone.
Nobody can be in the room with you as far as I know, but happy to be corrected.

I don't find MRI machines claustrophobic nor scary, it is actually the only place I can meditate properly without getting distracted that I should hand the washing instead. They will put a cannula in your elbow and the contrast will be injected in it during the second half of the MRI. They will tell you thought the microphone that they are going to inject it. It is done automatically through a machine, it is not someone stepping in that will do it manually.

A breast MRI is absolutely pain free. Your whole head and torso will be in it, but it is fine and not tight.

I always planned to have the surgery but have been in my young kids stage and it's tricky to think about how to manage that right now! As I approach 40 I'll need to give it some more thought, every clear MRI feels it gives me a bit of time to decide.

Thanks @Kaiken . I don’t like the idea of my head being in it but I'll just have to cope I guess!
Face down on a mattress sounds comfy. And I'm glad there's a buzzer and a microphone.

My wife had silicone injections back in the original days of breast enlargement. He breast texture is like a bag of golf balls (TMI) and mammograms are worthless for her. She had an annual MRI for about 7 years but due to the extreme pressure needed to get a clear image it caused extreme pain and structural damage to her sternum. She now can not have a breast MRI and just prays she has a cancer free future. This is an unusual situation though. The good thing is that the MRI was able to read her breast tissue even with the extremely dense tissue.

I’ve had loads of MRIs (not breast) and I quite like them to be honest. I close my eyes and try to have a snooze. When I first started having them I just used to pretend I was on a tanning bed which I knew I could cope with.

I also have BRCA2 and my first breast MRI today. I found out I had BRCA2 at the end of October 2024 so it took around 3 months to have the MRI under the very high risk screening programme. I was a bit nervous but it was fine, here is the breakdown of what happened:

Arrived at the MRI suite 30 mins before the scan as requested. Filled in some forms to consent to using contrast dye and to take a background health check.

A nurse took me to a changing room, ran through my answers to the forms and gave me 2 gowns to change into. I kept everything on below the waist (just made sure there was no metal on my trousers), took all my jewellery and piercings out. The nurse then showed me to some lockers to put my bag and clothes in.

A different nurse took me through to the pre scan/recovery room. She checked my forms again and inserted a canula in my inner right elbow. She tested the canula with some saline solution and asked me what music I wanted to listen to during the scan.

I was then taken to the MRI room next door. I took off the first gown and the kept the other one on - wearing it like an open jacket. The nurse was in the room with me along with a (female) radiographer. She explained I need to lie face down with my breast in two holes and my arms above my head resting on the bed, they connected the bag of contrast dye to my canula. There was a comfortable padded bit to lay your face on and a pillow under your lower legs. All you can see is the plastic bit of the bed. They put ear plugs in you and then some over the head ear phones and started playing the music I requested. They placed a squeezy pump in my left hand that I could press as an alarm/to speak to the staff. I was rolled in to the machine and the MRI started. Some of it was quite noisy, it sounded like an old dial up modem. I think it lasted about 20 mins and the last 5 mins the nurse checked in on me and told me the contrast dye was going to be inserted and it might feel cold. The last 5 mins the machine vibrated a bit. When it was done they rolled me out, took the earplugs and headphones off. I got up and they gave me the other gown to put back on, removed the canula and I was free to go back to the lockers, get changed in the changing room and leave.

Before the MRI I watched some youtube videos to get an idea of what it would be like and how noisy it was and that helped prepare me.

I’ve had several and honestly don’t even notice the dye bit- as you’re face down I think it’s far far less scary. Like being at a massage where they forgot to come in to massage. It’s loud but I kind of found a rhythm in the noise and pretty much. Snoozed through it!!

Thanks @fourelementary . I should have reported back. It was OK. Mercifully painless compared to the mammogram. I did feel panicky and claustrophobic but I kept my eyes shut and managed to keep the panic at a manageable level.
The bad news is I've been recalled. I'm going back tomorrow.

Sorry to hear that @WhereAreWeNow have they said what will happen tomorrow? I was recalled last year and had a mammogram and ultrasound and then got the all clear in the ultrasound room.
My understanding is that if this is just a funny bit on the imaging then next year they'll have this to compare and know that it's normal for you - hopefully that is the case.

@Starryknightcloud thanks. I think I'll see the breast consultant for an examination, then ultrasound. If it's a cyst I guess they'll do a fine needle aspiration. If it's something more worrying then I think they'll do a biopsy. I'm not really mentally ready for it to be something more worrying.

How did it go? X

The radiologist didn't think whatever the MRI showed was suspicious. But when she did ultrasound she found something in my armpit and didn't know what it was so did biopsy. She didn't think it looked like cancer but couldn't say what it was. I get results next week.
More stressful waiting...
Thanks for checking in 😊

The waiting is the worst, I'm sorry it wasn't ruled out right away but pleased she wasn't too worried. Hope the results come quickly

It sounds like your MRI scan was just for breasts. I'm worried about BRCA2 also causing increased risk of ovarian and pancreatic cancer. Did you enquire about MRI to scan for those too?

The annual MRI and mammogram is just for breasts. There isn't a screening programme for ovaries or pancreas unfortunately.
Do you have BRCA2 @Babkb ?@Babkb ? If you have a family history of pancreatic cancer you might be able to get on the Europac trial which involves various tests to try to catch pancreatic cancer early.
If you have any symptoms of ovarian cancer (unusual bleeding, pain, bloating) your GP should refer you for ultrasound and CA125 test. This happened to me earlier this year. Ended up with a pelvic MRI and a hysteroscopy and biopsy too (all clear).
You could also look into ROCA. It's a new ovarian testing scheme. I think it might only be at a few hospitals. It involves regular CA125 blood tests.