If you want to turn a frown upside down, then consider a BRCA1 diagnosis as an opportunity to experience lots of new things you wouldn't otherwise necessarily have gone through. A breast MRI is one of those experiences - at least it is in Suffolk, UK, with the NHS protocols in this neck of the woods. Mammograms are not recommended because they can cause damage to breast tissue which you'd really rather avoid if you have a gene that means you are prone to breast cancer. A yearly breast MRI was advised for me while I was making up my mind on what surgical decision, if any, to take.
The MRIs I have had have been a bit different from the picture above as I have gone in headfirst, and also had a cannula in one arm so both arms were down by my sides. The cannula injects dye of some kind so the scan can get the best image possible of la boobs. The holes for your boobs are pretty big and I was told that some women are too large in that department to fit in the spaces available. I had plenty of space for my DDs and was actually told to shuffle up rather than plonk them right in the middle.
I can't lie. It's a sexy moment. Not.
How to describe the sound? Listen to this version of Hello by Martin Solveig and Dragonette. At about the 25 second stage you get a dah-dah-dah-dah-dah sound. It's like that but without musical cadence. And it goes on. And on. It sometimes changes pitch and tone but it's still a constant dah-dah-dah-dah-dah. The headphones block out some of it but not all.
Mine lasted on average about 40 minutes.
I'd arrive at the hospital, announce my presence to the person on reception in the MRI room and wait to be called up. As with the majority of hospital appointments, I don't think I ever got called through on the dot but I never waited long. A blue shopping basket similar to what you could find in a supermarket was passed to me into which I put my belongings and clothes, the items then put in a locker while I was having my scan. The gown given was laced up at the front, a rarity for hospital gowns which tend to give priority to access round the rear.
The staff were always pleasant and professional. Getting the cannula put in wasn't that nice an experience but my veins in that area were robust enough to be found in the first go and I didn't need to feel like a human pincushion as the nurse tried to get a good spot.
You can feel the dye going in. It's a weird rather than an unpleasant situation. Towards the end of each MRI I had there seemed to be a sudden burst of dye that made me think I might have wet myself owing to a certain localised warm feeling down below. This was a pretty mortifying experience first time and the embarassment did serve to distract me in the final 5-10 minutes. I checked with the MRI staff and was told it wasn't common for people to have that sensation but it did happen.
That deals with the physical side of the MRI but there's a mental element to the procedure to. There's the booking of the scan where you are asked when your last period was/ next period will be as ideally the scan needs to be taken around a certain point in your cycle. Having had an uneven 4-8 week cycle until recently, this was always a question I could only guess at and I was made to feel that hardly anyone had irregular cycles and if I just tried a bit harder I could fit into the norm and make the booking of an appointment easier.
You have your appointment booked and you mentally shelve it. For a while.
The closer you get to the date, a little querulous voice begins to sew seeds of doubt. If you go looking for something, this voice prompts, of course you are going to find it. As if the only thing that causes cancer is testing to see if it's there in the first place.
When you get to a few days before the scan you find that voice beginning to draw up plans of what to do if your MRI does come back with something nasty. Who will you tell and how? What will the next steps be? As if by planning as much as you can you will somehow be able cushion the blow by having a to do list ready to roll.
When the scan is done you feel relief. That's it done for another year. You won't have to think of heading into that tone-deaf noisy tube for another 10+ months. I found that the horrid catastrophe-anticipating voice quietens down then but it doesn't go away until the letter confirming all is well comes through the door.
Regular monitoring is a sensible option for those with the BRCA1 gene. It's a means of keeping an eye on a situation that you've been forewarned about and an opportunity to catch things early enough for any treatment to have a good chance of success.
Just because it's a rational decision doesn't make it an easy one. The monitoring represents a wear and tear for the nerves, depending on your character. For those who just want to forget BRCA1 it is a regular reminder that it is still there and still needs to be dealt with.
When I was in the 'danger zone', as my breast consultant put it, I made the decision to have a double preventive mastectomy and had my last MRI about two years ago. I don't miss them but I was very grateful to live in a country with an NHS where monitoring could be done without incurring a hefty price tag.