Trade Ovarian Cancer for Heart Disease and Loss of Bone Density?

I had my appointment with my gynecologist this morning. I thought I'd end up with a couple of tests run today and I'd leave with a referral to a surgeon.

Nope.

My gyn is quite convinced that I'm "acting too strongly too quickly." She'll do whatever I want her to (and she can do an oophorectomy or hysterectomy without having to refer me to anyone). But she is very convinced that waiting 8 to 10 years for either of those is a better option for me. She said that either procedure will put me in some degree of early menopause. She said that means my body would age much quicker and that my chances for loss of bone density and of heart disease would be higher very quickly.

So basically, I would trade off the risk of ovarian cancer for the risk of heart disease and brittle bones.

I asked about monitoring for ovarian cancer in some way. She said she can order pelvic ultrasounds for me, yearly if I want them that often. For the time being, at least until my geneticist visit in August, that's what I'm going to do. I'm going to get my first ultrasound as soon as possible so I can see if I already have ovarian cancer. I'll talk to the geneticist. If my risk of ovarian cancer is too much for me to take, I'll have my gyn do the oophorectomy this year. If I decide I'm comfortable waiting, I'll get yearly ultrasounds until I'm much closer to natural menopause.

Add all of this to stuff I never thought I'd have to worry about and things I don't really feel like dealing with or talking about now. :(

The MRI...

... didn't get to happen.

To do a breast MRI, you have to lay on your stomach on this ramp thing that looks like what you'd see mechanics raise a car on to change its oil. Your boobs hang down in these holes. Your boobs can't be squished at all. Well, mine are large (as doctors seem to like telling me) and when they hang down in the MRI machine, they get squished. So they have to "build you up" by basically putting rolled up washcloths between your boobs. Which raises you higher in the air. Which raises me too high to fit into the MRI machine at the facility I was at.

So I called 10 (literally) more places to try to get an MRI this week and nobody has an appointment available. So now I have to wait until next month (since breast MRIs have to be done between days 7 and 14 of your menstrual cycle) and get it done somewhere else. But I also have to hope that my insurance company will provide another pre-authorization, since the existing one expires on April 18. My doctor's office is working on the insurance side of it for me.

Now I know what to expect when I *do* get to have the MRI, and I know I'll be at a facility that has a larger machine and won't be a problem for me.
'
And for the record, I'm sick of talking about and showing my boobs.

That is all.

It's MRI Day

I'm nervous as heck and feel sick to my stomach. I'm shaking. I'm extremely claustrophobic. I just wish this were done.

Hoping for a quick test and that I make it through without issue. And hoping for good results. It's crazy even to me that I'm more worried about the actual test than the results. I'm looking at the MRI as a necessary evil to check off of the list.

*sigh*

Relatable (Unfortunately)

I was recently welcomed into the BRCA Sisterhood Facebook group. If you're looking for support from women going through the same thing, you need to check it out. You have to be approved to join, but you'll understand and appreciate that once you are accepted to the group.

The very first post I read on that page was "Anyone have to start anti-anxiety meds after finding out about all this shit? I feel like I have mini panic attacks throughout the day worrying about what this mutation will do to me. Hoping it goes away after getting all the surgeries."

I don't think I've ever related to a total stranger's sentiment so strongly. And I wish I didn't this time. But seriously... I know I'm not, but I do feel like I'm going crazy. This stuff eats at you, all. the. time.

Ugh... A Little Taste of What's to Come

I had to take my husband to the ER this morning. He has a bad infection in his leg. He's since been admitted into the hospital and will be there at least 48 hours. He's going to be fine, but it's been a rough day.

When I told my kids what was happening and where Da is, two of them started crying. I took them to the hospital to see him. They were expecting the worst, even though I told them beforehand that he is only hooked up to an IV. Once they saw him, they felt better. But then the nurse came in to give him a shot, and my 7-year-old freaked a bit.

If they are worried about a leg infection with a 48-hour hospital stay, how will they react to major surgery with a longer hospital stay? If they can't handle seeing an IV line and a shot, how will they feel when they see me after surgery?

No bueno. This whole thing sucks.

Now to get my husband healthy so my family can leave for vacation in 12 days. We NEED this time away together.

Appointments and Indecision

I got the call I've been waiting for. I was able to schedule my consult with a breast surgeon in Ann Arbor. My appointment is about a month away. I'm good with that. We have a trip planned for spring break, which is the week before the appointment. At least the appointment is on the calendar and I have something fun to look forward to before it.

I then called the plastic surgeon's office and got an appointment for a consult there too. It's a couple of days before the other consult. I'm glad to have it scheduled; I truly think I have more questions for the plastic surgeon than for the breast surgeon, as reconstruction is where my indecision comes in. I am now leaning toward not getting any type of reconstruction. I know the Facebook page I am on freaked me out at first. But it doesn't now, and the option is actually seeming better to me. Maybe it's more about the bad stories I've read in the DIEP flap group that I'm part of online. I need to get facts and straight info from a plastic surgeon to be able to be completely confident in my decision. Whatever I choose will have long-lasting consequences (hopefully benefits).

So the countdown is on to lots of appointments. The first is about a week and a half away.

In the meantime, I'm going to try to relax (yeah, right) and enjoy my family and friends.

August

That's when the geneticist in Ann Arbor has an opening to see me. Freaking August.

I suppose the only good thing for me is that my conversation with the geneticist won't affect what I'm going to do. My questions for that visit center around my kids and what they should do in the future.

But seriously... do they not think I'll have one panic attack after another if I have to wait until August to get any info? Maybe the urgency is just in my head, but it's there and I don't think I can handle waiting until August to move ahead in some way in my care plan.

Kindness Makes Me Cry

I told someone recently that I feel like I've become bipolar in what I'm going through. I'm so up and down so much in a day (heck, in an hour).

I just emailed a friend who works at my church. I asked her to include me on the church prayer list. I didn't giver her details; I just told her that I'm battling some pretty tough health issues.

This was her reply, which made me cry:

"First of all, let me say that I am sorry that you are battling health issues. Know that without a doubt, I will be praying for you and I will ask for the ladies who do our prayer line to include you and I will also add you to the Book of Intentions. The names in the Book of Intentions are not read out loud, but during the Prayers of the Faithful we are asked to pray for all of the intentions included there.

I hope that the kids are doing well and will be of support for you as you have done so much for your family over the years. You are an awesome mom!!! Know that you are loved by so many and if I can do anything for you, a meal, a ride, anything, please don’t hesitate to ask."

It's funny how even someone being kind can make you cry. But her response was perfect; what I expected from her and then some. I'm so grateful for the kindness of others.

MRI is Scheduled

I will be having a breast MRI on March 27. I'm surprised it's so soon, but the doc said it'll need to be done before I meet with the surgeons in Ann Arbor. I don't have that referral yet, but once I get it, the doctor doesn't think it will take very long to get in.

Good Resource

I was just poking around online and found this blog. It seems like a really good resource to me, so I thought I'd share it with you. <3

https://theyarenottwinstheyaresisters.wordpress.com/

Just Be Held

My sister sent me a link to this song today. It's encouraging yet makes me cry. It's a beautiful song. <3

https://www.youtube.com/watch?v=tIZitK6_IMQ

Moving in (what's hopefully) the Right Direction

I didn't hear back from the geneticist's office today, so I called my doctor. I told her what I think I want to do. I cannot wait until June to get in with a geneticist and waste all of the time between now and then. I'm already on edge and the verge of tears all the time.

So... I have an appointment with my (local) gynecologist later this month. We'll talk about my results and her recommendation.

I am getting a referral to a breast surgeon and a plastic surgeon in Ann Arbor. I have to go there for the mastectomy with DIEP flap reconstruction, as nobody locally does that type of reconstruction. My doctor thinks it only requires about a 3-day hospital stay. That's not too long to be that far away.

I asked my doctor to order a breast MRI for me in May so that I can be monitored as much as possible. She's working on preauthorization from my insurance company and then will order it.

At least things are moving along now. Hopefully I'm choosing the right path for me. I'm worried that I'm moving too fast and making decisions too fast, but at the same time, I think I have to.

I am working on telling my brothers what's going on. Since my results mean that my dad is positive for the mutation, that means my brothers may be. I don't know what they know, so I want to make sure I tell them what I can. They each have kids too. Lots to think about.

Feeling a Little Calmer...

... though still anxious and scared.

I finally had time to sit and really talk about this with my husband. We work opposite schedules and life with four kids is crazy busy, so it took time to find time.

I think I know what I'm going to do. I think I'm going to do the oopherectomy (or hysterectomy), if a doctor recommends it based on my results. I have a feeling that I already have ovarian cancer (hopefully I'm wrong), so between that and my age, I want to get that taken care of first. Ideally, I'd like to do it this summer. I think I'll then have the mastectomy with DIEP flap reconstruction. That means they'd use my belly fat for reconstruction. It's more invasive and a longer recovery, but it's one surgery and done instead of surgery again later down the road. And I certainly have fat to spare. Ideally, I'd like to do that surgery next summer.

All of this hinges on talking to a doctor. If I don't hear back from the geneticist's office in Ann Arbor today, I'm going to call the doctor who ordered my mammo and gave me my genetic test results. I'm going to tell her my thoughts and ask what the next step is. I think I want to go with docs in Ann Arbor for everything, simply because there's no better hospital in the world than University of Michigan Hospital, in my opinion. But then I'd be further away for my family and friends to come see me and I'd have to travel further for my follow-ups. I'll decide that stuff after I talk to the local doctor.

If things take as long as it sounds like they will, I'm hoping they'll agree to do MRIs and mammos every six months until the mastectomy is done. I need the monitoring and reassurance in the meantime.

It's all still too much to think about rationally, but I'll feel a lot better when I have a plan, pick docs, and get moving.

Seriously?!

I haven't made a decision yet (want to wait until after I get more info from the new geneticist) but have been leaning toward the mastectomy.

I thought I'd do it without reconstruction. And then I joined a Facebook group for women who didn't have reconstruction and now I'm not sure I can handle that. It was so hard to read and imagine myself in that boat that I had to stop reading.

But I still thought I'd have the mastectomy. Maybe just with reconstruction instead. Heck... I hear they can use your belly fat to reconstruct. "Tummy tuck and boob job paid for by insurance." Sounds like a good thing in the middle of hell.

But I just read this article. http://www.citynews.ca/2017/03/03/gta-woman-develops-breast-cancer-despite-double-mastectomy/

I know the prophylactic double mastectomy doesn't mean you'll never develop breast cancer. But it lowers your chances dramatically. But then you don't get extra checks; just the yearly mammogram. So what if breast cancer develops quickly in the year between mammograms?

So maybe, like the woman in the article says, the mammograms and MRIs alternating every six months are better because they can keep a closer eye on you. But then what if cancer develops quickly in that six months and it's harder to treat?

I'm in a lose-lose situation. And I hate it. I wish the "right" decision were easier to determine.

Hits You Unexpectedly

I was working last night and Meghan Trainor's "I'm Going to Love You" came in. The chorus (which is repeated a LOT) is "Im going to love you like I'm going to lose you..." Made me cry.

I hate having this health stuff hang over my head. I really do feel like my body is betraying me and like I'm a ticking time bomb.

This is why I need a plan soon. I'm going to go crazy.

Randomness

I was driving home from work today and it just felt weird. My world hasn't stopped, but my focus has changed. Yet I look around me and nobody else has changed. It's a weird feeling.

I have to figure out when, and in some cases if, I should tell people what's going on. It's quite personal, but some people probably fall under "need to know." And my family and I could probably use all of the support we can get. As for telling my kids, I think I'm going to wait until I have a plan.

I am worried about my siblings, cousins, and kids. I wish they'd all get the genetic testing and make the best decision for them. I want them to be proactive and knowledgeable and empowered. I don't want them shocked with a drastic, scary diagnosis, especially before it's "too late" to do anything, as it has been in the past for some of my relatives.

I've been told that a lot of people with family history like mine don't get the genetic testing. They opt not to. I can't imagine knowing I am at risk for the mutation but not finding out. Both options are scary but at least one could be a good answer and allows you to make informed decisions that could make your life and your loved ones' lives much better.

I got to snuggle with my two youngest girls while watching a movie with them tonight. It was good for my heart.

I have a very busy day tomorrow and am glad for that. I have fun things planned and also have to work. Lots to keep me busy and maybe distract my mind for a while.

The Call

I got the call today. With the results of the genetic testing I had done two weeks ago. The doctor called to tell me that I tested positive for the BRCA1 mutation.

I held it together during the call, thanks to deep breathing and doing a lot more listening than talking.

And then I lost it after I hung up the phone.

I am scared. I do feel empowered with the knowledge, which is how I felt when I decided to have the testing done, but I am scared, which is also how I felt when I decided to have the testing done.

The plan now is to see a new geneticist (mine moved), get some more info, and then decide what to do.

At this time, I'm leaning toward the prophylactic double mastectomy, probably without reconstruction. But I don't know. I have a lot of questions. And the few friends I've asked for input have varying opinions and thoughts. I will feel much better about making a decision after I meet with the geneticist.

And I've also been told I'll need to consider an oophorectomy, as my chances for ovarian cancer are now considerably higher than normal as well.

So much to consider. Such big decisions to make.

Background

Breast cancer runs rampant in my dad's family. I've pretty much always known that I have several relatives who have had it and who have it now, but I didn't realize the full extent of the history and I didn't know about the ovarian cancer history in my family either.

Until yet another female cousin was diagnosed with breast cancer in her early thirties and a male cousin was diagnosed  in his mid-forties, within a very short time of each other. My fear started taking hold and my mortality stared me in the face.

So I made an appointment for a mammogram, worked my way into an appointment with a geneticist because of our family history, and got blood drawn for the genetic test about two weeks ago. This whole situation and process have made me feel both very empowered and afraid. But I'd rather know what's going on and be able to make decisions for myself than be shocked when I'm diagnosed with cancer and then be too overwhelmed and scared to make the best decisions for me.

The mammogram (my first, at 41 years old) came back clean. The blood test did not.

I have four kids. My positive result now means they have a 50% chance of having the mutation. Had I tested negative, they couldn't have the mutation. I am scared for them too. But I can't let myself be. My oldest is 17 and my youngest is 7 and I can't let myself live in fear for the next 40 years.

I need to get my thoughts down, I need a safe place to "talk", and I want to help others as they navigate this road. It's scary. But I'm not alone and neither are you.