Is anyone else on the high risk breast screening programme? MRI call back for me.

[Ljd401]

Hello,

I’m on the high risk breast screening programme and have yearly MRIs and mammograms. Following the one this year, I’ve been called back after the MRI picked up a subtle change in the right breast from the last scan. Has anyone else been called back for something like this? I know that MRIs have a high false positive rate so hoping that it’s one of these.

Am trying not to worry but it’s very hard not to.

Thank you xx

I have had breast cancer in the last year and could not leave you with no reply. I don't have the same experience and want to wish you all the calm you need. Uncertainty is the pits isn't it!

I hope you have more news very soon x

So very sorry to hear about your diagnosis. How are you doing now? Do hope you’re ok. Thank you for taking the time to reply to me.xx

Totally agree with you about the waiting part, it’s awful. I’m also panicking that an ultrasound may not pick up the area they’re concerned about as I only had an ultrasound 3.5 weeks ago (due to another lump in the other breast but they scanned both) and was told that both were ok and just full of cysts. The way my brain is working I’m not worried I’ll need a guided MRI biopsy which I presume will be an even longer wait. Obviously I’m thinking ahead and letting me thoughts get the better of me. Hoping that on Wednesday, when I have my appointment, that they can reassure me and that it won’t be anything.

I am okay now. I had two operations, plus radiotherapy and I didn't need chemotherapy. I'm back at work full-time on tamoxifen to help prevent a recurrence. It was scary for a bit. Occasional wobble too but mainly ok and focusing on living a healthy life. The care I received was amazing. Thinking of you and I hope everything goes well on Wednesday. Come back and update on here x

Unfortunately I have to have a guided MRI biopsy which can’t be done until I’m day ten of my cycle. I’m only day 23 now so a long wait. He said the jury was out on the area. The 2 radiologists who reported my MRI think it warrants further investigation but he himself had a look today and was more inclined to think it could be glandular tissue. The area didn’t show on the mammogram or the ultrasound. He said that if it was anything he’d think it was something very early. He also said there are some points pointing to it being benign because of something (can’t remember what it was and annoyingly they didn’t allow my husband in).

@Ljd401

Can I ask why you have yearly checks?

I ask because I've had breast cancer and wonder if my children will be monitored like you.

Maternal aunt had breast cancer at 30, also in both breasts and it also kept returning. She sadly passed away at a very young age. My mum had a diagnosis at 48. Cancer diagnosis for both maternal grandparents. I visited the family history clinic and they look at everything then calculate the risk. How old were you when diagnosed? Very sorry to hear you’ve had cancer x

Bit late to reply but I had a guided MRI biopsy last year after a recall. It turned out to be benign.
I was part of a study of women with dense breasts testing out the use of MRI to pick up issues. I also had an area of atypical ductal hyperplasia removed 7 years ago so have been having yearly mammograms due to higher risk.
It was worrying but I felt if it was something it would be very early to catch it.
The biopsy wasn't pleasant but not painful.

I'm also on the programme, having yearly mammograms. No call backs so far, thankfully.

My mum had breast cancer at 46, and her mum had it too later in life. That plus various other cancers in the family seemed to get me on the programme. My mum has since been diagnosed with two more kinds of breast cancer, one in each breast so I am very glad to be monitored.

I hope your call back turns out to be nothing, OP.

@Ljd401

I was 51. I have triple negative breast cancer.

I had a grandmother, aunt and a cousin who have had breast cancer.

I don't have a currently identified gene. I was told that my children would be screened from 40.

Very pleased yours turned out to be benign.

I am concerned about the MRI as I don’t like them anyway (find them so uncomfortable) and worried that because it’s a biopsy I’ll have to be laying face down for even longer than the usual 35/40 minutes that the scan is. Was your biopsy MRI longer than the standard one?

Before you had the guided MRI did they try to locate the area with a mammogram and ultrasound?x

They couldn't locate the problem on an ultrasound or mammogram. The guided biopsy was much shorter than the original MRI (maybe 10 mins total) but involved my boob being clamped to keep it still and help them biopsy the correct area. They gave me local anaesthetic for the procedure and I was face down.

Yes I had this and also had the guided MRI biopsy. Was given 50:50 of it being cancer. Had to wait a month in total - but all was fine! Good luck

Thank you for your reply. Did you receive contrast for the guided MRI biopsy too?x

So pleased to hear all was ok but sorry you also had to wait so long. I had my original mri on 7th November so by the time I find out it’ll probably be well over a month.
Thank you for taking your time to reply to me xx

Hi OP, I have this screening (BRCA gene) and had my first call back this year. They put the changes down to hormonal changes with starting a mirena IUD. It was very unsettling so I really feel for you.

I'll need to look up a guided MRI but you're right they're bad enough normally aren't they!
Im glad there's some positive signals by the sound of it and worst case it would be something very early- but that doesnt make it any easier

Thank you very much for your well wishes. Have they ever suggested MRIs for you as part of the screening?x

Very sorry to hear that you have one of the BRCA genes :-(. I haven’t had a genetic test but my mum did and she has a variant of unknown significance. This was done years ago though so she is tempted to get another genetics test done now that they test for more.

Glad that it turned out to be nothing when you were called back. Hoping it’s the same for me. I have considered preventative surgery in the past and the plan was to look into it after having children but I haven’t done anything about it.x

Same @Ljd401 I said when I was 35 for preventative surgery but that was a year ago and I've done nothing, it's such a massive decision and huge undertaking.

Just to update you all. I received a call 2 weeks ago from a breast care nurse who said that the consultant at Northwick Park hospital has rejected my consultant’s request for a guided MRI biopsy and instead wants to wait 2 months and repeat the MRI to see if the area has changed. At the moment, he believes that the area is likely glandular tissue.
At first I felt very relieved but I’m having breast pain in the right breast now (the one with the suspicious area) and receiving my original MRI report then putting it into AI, I am feeling very worried. 4 consultants have looked at the images, 2 want a biopsy and 2 want to wait and see. I just feel in limbo and need to know either way. I won’t be having another MRI until the middle of January so potentially, if I need an MRI guided biopsy, I wont know what’s going on until early February.