MRI Results

The MRI tech told me that my results would show up in my online health portal within two business days. That time frame expired yesterday and I could not keep waiting (it's mentally draining!). I called Radiology today. They offered to fax my results to me, since the report had been read.

Findings:
There is minimal fibroglandular tissue and minimal background enhancement. No suspicious enhancement to suggest malignancy.

Impression:
1. Negative breast MRI. BI-RADS Category 1. Recommend next adjunct screening breast MRI in 12 months.

So it's clear! They recommend I test again in 12 months. That will be the plan if surgery isn't scheduled by then, so it works for me.

I can breathe for a while now.

Next appointment: June 22 with my oncological gynecologist. I am pretty certain that I will leave that appointment with a test or two scheduled (to see if I already have ovarian cancer) and possibly with a surgery date.

Drumming Woodpeckers, Jackhammers, and Tornado Sirens...

... That's what it sounds like inside the MRI "tube".

I had my breast MRI on Sunday. I was very anxious, as I am extremely claustrophobic. I've had a MRI on my knee in the past (long ago), but for that, my whole body wasn't in the tube. This time it was. I didn't ask my doctor for anxiety meds because I drove myself (an hour and a half each way) to the MRI and I was afraid of not being able to drive if I was "too relaxed." On the way to my appointment, I tried building myself up and talking my anxiety down. It worked a bit, until I made myself cry when I reminded myself that I was doing this in large part for my kids and our future.

It took them a couple of times to get the IV in, but then it was in fine. When I got into the MRI room, two techs were there to work with me. One helped get my gown positioned for the test while one put ear plugs in my ears (because it gets soooo loud). They had my lay down on the table. For a breast MRI, you're face down. Your arms are positioned in front of you, next to your face and almost like you're in the position to fly. Your breasts go in these holes, your face rests on what feels like a snorkeling mask (though others relate it to a massage table, which I've never experienced). There are two mirrors positioned so that you can see in the room a bit rather than just staring at the floor or part of the table. The techs put a set of ear muffs over my ears (yes, even with the ear plugs in because it gets soooo loud). They put a foam wedge of sorts under my legs to angle them for comfort. They then push the table you're laying on into the tube.

The techs talk to you as the exam is getting ready to start. Then it just gets really loud for a while. There were eight scans total. The table moved for some (which they warned me about before it started moving). I was anxious but knew that I needed to find a way to get through this. I decided to think of the drumming and jackhammering sounds as a music beat and was kind of humming along. I went through my to-do list for the upcoming week in my head. I tried to fall asleep. I started to snooze and then came the tornado siren sounds. Right in my ear. Made me jump a bit (because I was just about asleep LOL). Next thing I know, they told me it was time for the contrast dye to be injected into my IV. It was a weird sensation, warm from head to toe inside my body, made me feel like I peed my pants (though I didn't LOL). The tech tells me "two scans and eight minutes left... you're almost done." . I knew then that I could make it through the rest. Then she tells me "one to go, just three minutes." I tried counting down from 180. Then it was done.

After your MRI, you will have a funky taste in your mouth from the contrast dye. Be prepared. It even made animal crackers taste nasty. LOL

I was quite worked up in my mind before this exam. I was anticipating one of my worst nightmares. It wasn't easy, but it was way easier than I anticipated. So if you're claustrophobic and worried about an upcoming breast MRI, I promise that you can do it. I never thought I'd be able to, but I was. Oh, and make your appointment somewhere with a large aperture MRI machine (the one I was in was 70cm bore). It's much less claustrophobia-inducing when the sides don't feel like they're touching your skin.

Take Two

I'm headed to Ann Arbor today for my second attempt at getting g a breast MRI done. I am confident that it will get done today, but I'm still anxious about it. I hope I have a patient, soothing, female nurse. Bonus if she'll actually literally hold my hand during the procedure. (joking, not joking)

When it's done, I get to go spend the rest of the day with my awesome family. I think I'm going to hit the gym tonight too.

Thanks a Lot, Google...

You know you've been doing a lot of internet research about cancer when the behavior-targeted paid ads online are for Cancer Treatment Center of America and the like.

All part of the new reality, I guess.

An Update

My appointment with Dr. Rizk (breast surgeon) went as I expected it to. She's on board with my plan (as best as I could sketch it out for her). She wants me to follow up with her after my appointments with the oncological gynecologist and the geneticist. So I'll likely be back to her in September.

After more drama (that I'll spare you from), I was able to reschedule my breast MRI. I go this Sunday, this time to Ann Arbor. I'm anxious again, and contemplating asking my doc to order something for me to calm my nerves, but I also just want to get it over with.

I learned today that the MRI alone is going to cost me over $2,000 out of pocket. That is almost my entire deductible. For that reason, I am seriously contemplating getting everything done this year. It would save me $2,500 next year. I'm not trying to be flip about it; just trying to be realistic about finances. I can't financially afford to do all of this, but I can't physically or emotionally/mentally afford to not get get it all done.

I learned today that another first cousin tested positive for the BRCA1 mutation. She's had one sister die of breast cancer that metastacized in her brain and she had one sister diagnosed with stage 2 breast cancer (though the second sister is finishing up treatment very soon). Just another example of why we need this testing and to be informed. I feel like my family is somewhat doomed. At least we have knowledge and are empowered to make decisions for ourselves.

So there ya go; that's what's going on right now. Now to (dreadfully) count down the days until Sunday...

One of my Worst Nightmares

Today I have my appointment with the surgeon who will do the mastectomy. This one feels like the "easier" one, with fewer questions, because it seems pretty simple. She just cuts them off. The plastic surgeon gets the hard (and long) part of the surgery. But I'm anxious as heck because my appointment is at the Cancer Center. Cancer is one of my biggest fears. I've watched too many family members and friends battle it and die from it. I'm doing all of this to avoid cancer (as much as possible and I have control over). Walking into that building and signing in for that appointment is going to be hard.

Other than that, this appointment feels like a formality to me. I won't schedule my mastectomy and reconstruction until after my appointment with the oncological gynecologist in June. But at least I'll get to learn how the surgery works and get to keep moving this process along.

After my plastic surgery appointment, I made a very special stop. I visited Joana's tree in Nichols Arboretum in Ann Arbor. Joana is the daughter of one of my best friends. Joana passed away 3.5 years ago after battling a brain tumor for about five years. Joana was one of the strongest, most cheerful, most loving, funniest, bravest people I'll ever know. Joana's motto was "Life is too short to be anything but happy." When Joana passed away, a tree in the Arb was dedicated to her. It symbolizes to me strength and bravery, just like Joana had. After my appointment, I visited Joana's tree, sat on the bench next to it, and spent some time thinking about all that's in my head right now. It was nice to have this perfect place to sort things out a bit. I'm hoping to stop by again today, probably before my appointment so I can clear my head before I sign in as "a patient of a cancer center."

Plastic Surgery Consultation: Check.

I had my first appointment in Ann Arbor today. It was with my plastic surgeon (PS). I was told I'd have 20 minutes with him, so I expected a relatively short appointment. It was not that way at all, and I'm so grateful.

First of all, this doctors' office, in spite of how busy it is and how many doctors practice there, runs incredibly smoothly. Right on time, so efficient, so kind, so wonderful.

The first person who came to see me was a nurse who said if I have any procedure done through the office, she'll be my personal contact the whole time. She gave me her card with her cell phone number on it.

Then my PS' nurse came in. She was also incredibly kind. Until she asked me to take off my top and bra and put the gown on with the open part facing front. LOL I know it's a necessity; it's still just awkward to me. She asked my permission to look at and handle my breasts. Oh, the fun. Not. I don't imagine I'll ever get used to that or comfortable with it. Not for me, but I don't get a choice. Anyway... She explained to me most of the procedural stuff and differences between different types of reconstruction. The two I'm considering are DIEP flap or expanders to implants.

Then my Aunt Kim, who works in the same office but for a different doctor, came in. It was great to see her and it eased a little of the anxiety I was having about the appointment.

My aunt left and then the doctor came in. He went over some of the procedural stuff too, checked out my breasts, asked me some questions to gauge where my head is at and what I'm thinking in regards to reconstruction and different types, and then went over a lot of the risks and benefits of the two procedures I'm considering. He spent almost an hour with me. I didn't have a ton of questions, as I thought I would, because he was so good in his explanations to me.

So, I can take as long as I want to make my decision. But I'm going to make it before my appointment with the oncological gynecologist in June. If I'm having an oophorectomy or hysterectomy, which I am strongly leaning toward and think the gyn will recommend, I believe I'll be having that surgery first. So I told my PS that I will know more about timing in early June.

The two options I'm considering are:

DIEP flap: in a nutshell, the PS would use my belly/abdominal fat to build new breasts under the skin the general surgeon leaves behind. Because of the size I am now and the size of my belly, I would definitely end up with a smaller breast size (which I desperately want). This surgery is 8-10 hours, sometimes longer since I'm having both done. The time in the hospital is 3-5 days. The recovery is about 6 weeks. You risk infection, necrosis of the skin (the breast skin dying), the blood vessels not working after being reconnected (meaning you might have to be rushed back into surgery), blood clots in the breast. You may need follow up surgeries (mostly outpatient) to tweak things (size, unevenness), fix things ("dog ears", among other fun). But those are all things that are threats early and once you get through that time, there really isn't any risk in the years ahead. It's your own fat, your own body, not a foreign substance. It's something you'll never have to have replaced and that won't be damanged like an implant could.

Expanders to implants: once the mastectomy is done, the PS would put expanders in my chest. After a short recovery time, you go to the PS once a week for "fills". The PS fills the expanders with silicone weekly, until you get to the size you want to be. Once you are there, you go in for another surgery to have the expanders removed and the implants put in. With the original surgery, you're only in the hospital overnight. Recovery is just a few weeks. But then it's the same with the follow up surgery. And there are risks of the implants leaking or moving. Implants don't last forever; I'd have to get them replaced a time or two in the future. But I could choose my exact size ahead of time. There isn't as much chance of necrosis.

It's a lot to think about. And before I started typing this out, I wasn't sure which way I wanted to go. But if I'm being honest with myself, I'm still leaning toward the DIEP flap. My fears? Being under anesthesia for the length of the initial surgery and that the surgery won't work (blood flow or dead skin issues). I don't like the idea of the long recovery, but I know that my employer will be flexible and I am hopeful that I can schedule this somewhat conveniently with my kids' school schedules.

I just don't know. I do know that I need to take time to figure it out and I also need to work on my overall physical health (lose weight). So it's time to get moving and thinking. Good thing that running is so good for thinking and clearing your head.

Next on the agenda is Friday's appointment with the general surgeon who will be doing my mastectomy. My PS says she's really nice; I am hoping so.

Update and Thoughts

It's been a while since I've had a chance to update here. My husband was in the hospital for five days and is still unable to get a shoe on his foot, let alone walk or work. We had to cancel our vacation. We've been to a ton of doctor appointments and gone for lab work and an ultrasound. He's still not doing well and is in constant pain. It's been crappy.

Back to the BRCA stuff. I was uncomfortable with my gynecologist's plan of (in)action. I asked lots of other people in the same boat I am what they thought and 100% said waiting is a mistake and to get a second opinion. I now have an appointment in Ann Arbor with a gynecologist who specializes in BRCA mutations. I took his first available appointment, which is in June. I had scheduled the ultrasound I asked my gyn for but am calling to cancel it. I am going to see what this other doc says. Even waiting until June, I feel better about this.

My appointments in Ann Arbor start next week. I am feeling good yet nervous about them. I am most curious about what the plastic surgeon recommends and about when the surgeon recommends I have the double mastectomy done. If the surgeon is comfortable waiting until next summer, that's my ideal due to short-term disability at work (if I have the surgery before April 2018, I won't get paid for my time off). If I have to have it sooner, I'd like to have it done this winter, while the kids are off of school for a couple of weeks.

I was approved by my insurance company to have my MRI at a different location. As soon as I start my period this month, that will get scheduled. This place was phenomenal on the phone and I feel as comfortable as possible in working with them. Now I just want to get it done and over with.

That's it for now. Some upcoming appointments, some waiting, and a little less anxiety for the time being.

Now I'm going to enjoy the day with my kiddos. Back to work for me and school for them on Monday, so we've got three days of spring break/vacation left to have fun and make memories. <3