No support...

This is the kind of story that needs to be promoted more.  Read the comments.  We get no support from the general public.  People are so ignorant with their incorrect opinions.  Of course I had to add my own comment :)  The Stir - Cafe Mom

Gynecologic Oncologist (Say That Three Times Fast!)

I'm waaaaay behind in posting this, but since nobody reads it, it's fine!  :)

I finally found a lady parts doctor that I like.  Well, I don't really like HIM, but I like how he took me seriously and came up with an aggressive plan.  He's actually kind of a mess.  His office is stacked full of piles of files, which is a little scary, and his waiting room is ornate and full of Faberge eggs and old, tacky furniture, and classical music.  Plus I had to wait like an hour before he even saw me, and I ended up being late for psychology class.  But anyway.

So, here is the plan:  Every six months I get an internal uterine ultrasound (woohoo) and every year I get a CA-125 blood test.  That's a cancer marker test.  It checks the levels of blood cells to see if there is anything abnormal which could signal early cancer.  Its something they usually do for cancer patients in the five year span following treatment.  I also get to enjoy his messy, cluttered, Faberge egg covered office every six months.

He also didn't try to pressure me into having my ovaries removed, or try to scare the hell out of me with horror stories and negative opinions.  He was very cut and dry, straighforward, just how I like my doctors.  Give me the facts and let me deal with the emotional parts myself, thanks.

I have already had my blood test, and never heard anything back so that means I don't have cancer I guess (hooray!).  I'm going to get the ultrasound done next month, at the same time as my MRI.  So that will be a fun-filled day full of prodding and banging noises.  Can't wait.  Oh well, at least I'm super excited to have a solid plan in place finally.

I Ran a 5K!

Over the summer, I decided I'd like to start running.  So I bought a treadmill on Craigslist and downloaded the Couch to 5K app for my phone and got started.  I never thought I'd actually get to a 5k though.  I'm not athletic and I never have been, and I usually don't finish things like this when I start them.  But, against all the odds, I finished this race.  I signed up and ran a 5k at the Susan G. Komen Race For The Cure in Hunt Valley, Maryland.  My time was 41 minutes and 38 seconds and my fastest mile was about a 12 minute mile, according to my Nike Run app.  That's actually the fastest I've ever ran.  I know that's not super impressive time, but I'm happy with it.  Honestly, I'm just happy I finished because ultimately, that was my goal.  Anyway, here are some pictures:

The front of my shirt:

The back of my shirt: 

The finish line:

Me, afterwards:

BRCA In the Media

I just read this article, and it sounds like me, so I wanted to share.  I'm so happy to read things like this in mainstream media to get the word out.  People don't understand what it's like to live with that 87% hanging over your head.  That's a very real number, and when I stop and think about what it means, it terrifies me.  This isn't a joke or a ploy for attention.  It's very real.  This is a great article, please take the time to read it.

False alarm!

Needless to say, I didn't sleep much last night.  That's because this morning I had my diagnostic mammogram and ultrasound.  I got there early because I was so nervous, which didn't help the fact that they were running behind schedule.  Finally they called me back, fifteen minutes past my appointment time.  It must have been National Mammogram Day, because the little waiting area where they keep all the topless women in pink robes was jam packed.  I hate when that happens, because they all stare at me like I'm a freak.  I mean, the room is full of older women with gray hair, gaudy jewelry and wrinkles, and here I am, in my twenties, and looking about 5-7 years younger than I actually am (or so I'm frequently told by strangers).  I know they're all feeling sorry for me because they have to think I'm getting checked for cancer.

Anyway, enough scene-setting.  So they finally took me in for the mammogram, and they had to do some weird angles that they don't usually do.  Also, I learned that the compression plate thingy can come off and be replaced by other ones of all shapes and sizes.  The one I got had an additional plate on it, like a big bump, the size of one of my kids' cereal bowls.  So you can imagine how much fun that was.  Nothing like having your boob squished between a flat plastic panel and another plastic panel the size of a cereal bowl.  It left a weird roundish indent on my skin.

Then began The Waiting: Part One.  I had to go back into that room with the older women, some of whom now stared because instead of gathering my things from a locker, I sat back down, which confirmed for them that I was in fact there for several tests to rule out cancer.  Eventually I was alone, as all of them came and went from their mammograms.  Finally, the radiologist came in and said that I could get dressed and there was no need to do the ultrasound, because everything was fine.  Hooray!

Of course, the minute I change into my shirt, she's back outside of my dressing room.  She decided that she would like to do the ultrasound afterall, after seeing in my file that I'm BRCA1+.  Ah, more stress.

So she took me back and had a tech do an ultrasound.  Between two pregnancies full of complications, I've had about a billion ultrasounds so these I can handle quite well.  I actually almost fell asleep on the bed because I was so tired.  After taking some pictures, the tech got up and said, "Wait here, I want to have the radiologist look too."  Of course this leads me to freak out, because when they do that on a pregnancy ultrasound it's never been a good thing.  Commence The Waiting: Part Two.

After about ten minutes of laying on a flat pillow with my arm raised above my head and that sticky gel running down my chest and into my armpit, the radiologist finally came back.  She scanned things too and said it was all fine, and there hadn't been anything wrong, she just liked to be 10000% sure.  So I guess I should feel good that at least they're thorough.  It's a nice change for someone in the medical field, other than my breast doctor, to be concerned about my BRCA status.

I also remembered to ask about my last mammogram, the one that set all of this in motion.  She told me that there had been a small spot on there, but that its gone now and she can't find any traces of it, so it most likely was due to not having enough compression in that first mammogram.  I'm grateful to know there was never anything wrong with me.

I'm also especially grateful that I don't have to have a biopsy.

A Diagnostic

So here it is.  My very first cancer scare.  I got a blunt little letter in the mail today from the radiology center where I had my mammogram last week.  I'm going to try and attach it to this post, so you can see it.  But it basically says there was a problem with my test and they need to do another one.  I called the number on the letter and they told me that I'll need a diagnostic mammogram on the right side.  The word "diagnostic" scares me.  But not as much as the words "biopsy," or "cancer".

After I processed this information I talked to my mom.  She told me that her second bout with cancer started just like this.  She apparently went in for a routine mammogram and it came back inconclusive. So she went in for a diagnostic, which was also inconclusive.  Because of her history of cancer, they ordered an immediate biopsy, and sure enough, it was very early cancer.

I'm surprised by how not upset I am.  I'm actually taking this in stride, I think.  I mean, it scares me, but I also know that I have an excellent plan ready to go into action at any time, and I know that I'm sort of prepared for this.  Seriously, I have an 87% chance of getting cancer, so it's not like I should be surprised, right?

I've also read about other women who are BRCA+ and have had inconclusive tests or other issues leading to biopsies that came back negative.  So part of me is thinking that's what's happening here.  But another part of me is thinking about the 5 previous years that I've been having exams and screenings and everything has always been clear.  I've never had to come back for additional screenings.

My "diagnostic" is scheduled for Tuesday.  I'm willing to bet that it will take two weeks or more for my results to come back, just to add to my stress.  Cross your fingers for me.

Coming to Terms?

Lately I've been a teeny bit obsessed with finding before and after photos of PBMs online.  I stumbled across this website, and it's got a large variety of before/after shots.  I'm mainly posting it so I can remember where to find it, because I'm positive I'll want to study it again at some point in the near future!

I've never been terribly vain, but I do worry that my new boobies won't look normal.  I'm more concerned with what they'll look like in clothes.  As I like to tell people, it's not like I'm ever going to be a topless dancer, so some scarring won't be the end of the world lol!  And I'm not going to pursue nipple reconstruction, so they're already going to look weird naked I suppose.  That's always an option in the future but for now I'm not too concerned about nipples.

I guess I don't really have a huge attachment to my "girls", but it still seems surreal to be without them, and have them replaced with imposters.  I've read about people going through a mourning period while coming to terms with the surgery they're about to have.  I guess that's where I'm at emotionally.  I don't feel like I'm mourning, necessarily, but definitely mentally preparing.  I told my mom, cancer patients do have one advantage over me here.  At least they don't have the emotional tug of war about whether to do the surgery.  For them, its a necessity.  For me, its not, and it comes with quite a bit of second guessing and opinions from everyone around me.  I hope that comment about cancer patients having an advantage isn't offensive, because its not meant to be.  I know they have it a lot harder than me.  That's why I'm doing this afterall, to avoid becoming a cancer patient.  I don't EVER want to have to wear a pink shirt at a Susan G. Komen walk.  One survivor (my mom) in the family is enough.

Implants or Fat Flaps?

Today began with my first visit to the plastic surgeon, Dr. C.  I don't really know what I was expecting, but for some reason I was surprised by the amount of "fake" in that office.  Everyone in the waiting room seemed to be in the process of  a facelift or botox or something, and I felt very awkward and out of place.  I kept wanting to go tell people that I was there for a breast reconstruction, so they wouldn't think I'm superficial or something.  Not that they would care, I imagine.  But that's just my own insecurity with it I guess.

I was so nervous sitting in the waiting room.  My hands were shaking when I filled out my forms.  I don't know why I was so terrified, but it was very stressful.  Plus they made me wait 45 minutes before I was called back, so that didn't help matters.

First I met with the physician's assistant, who was very nice.  She showed me a video about breast reconstruction and brought me a book of pictures and some things to play with, like a fluid drain (it gets inserted into each breast during surgery and then removed about a week later), a tissue expander, a saline implant and a silicone implant.  She asked me a lot of questions about my history and what I liked and didn't like, and what my expectations were.  She also told me that I looked pretty thin (LOVE that girl!) and that I might not be a good candidate for the flap procedure.  Then she told me to get changed into yet another jersey knit gown (I am so glad someone finally decided to make these things comfortable!) and that Dr. C would be in shortly.

Dr. C was really nice.  He made me feel very comfortable, he's very soft spoken and calm and friendly.  I really liked him a lot.  He agreed that if I do the flap surgery I will probably only get to be a B, whereas right now I'm a DD.  I would like to be just a tiny bit bigger than he thinks he can make me with flap surgery, so we decided that implants would be the way to go.  I'm very excited about this, and I like the plan.  I looked at a lot of pictures and I think I'll be pretty pleased with the results.  The first surgery will be about 5 hours long and I'll have one overnight in the hospital.  During that surgery Dr. F will remove my breast tissue and Dr. C will put in the expanders.  Then I'll have tissue expanders in for 3 months with weekly or biweekly injections, and then silicone implants will be put in during the exchange surgery (my second procedure, which is outpatient).  Nipple sparing is not an option, but they can do nipple reconstruction if I want.  Honestly, I think I'm going to pass on that.  I think I'll get sunflower tattoos there instead :)

After Dr. C left, his nurse took me to a photo studio so they could take my "before" pictures.  It was kind of weird to take topless photos in a photo studio in a doctor's office!  She also told me that when I'm ready to go forward, all I have to do is contact Dr. F and they'll coordinate everything for me.  It seems like a very easy and streamlined process, which I'm excited about.  Less loose ends for me to worry about.

So that's my experience with the plastic surgeon.  This afternoon I have my annual mammogram, which is always so much fun!

The Delightful Dr. F

My second opinion came from my new doctor, Dr. F.  He has a beautiful office in a newly renovated downtown hospital, and his staff is super nice and helpful.  I found him through recommendations on the FORCE message boards.  I really like him.

We talked in depth about my predicament and his experience with it, and his opinions as well as mine.  He asked me what I think, what I want, and how I feel, and he answered all of my questions to my satisfaction.  He met with me for over an hour.  (Also, it's worth noting that his office has fantastic gowns. They're made out of jersey knit so they're super comfy.  I would really like to keep one....  lol.)  He told me he has done over 200 mastectomies like the one I'm considering.  He has only had one person develop breast cancer post-mastectomy.  Those are better odds than the national average.  He works closely with a plastic surgeon in the same hospital, who also has extensive experience.  I have an appointment with him later this week.

Let me tell you a little about this mastectomy.  Basically, what happens is the breast surgeon (Dr. F) will scoop out all of my breast tissue, including some lymph nodes (if I choose, so he can test for cancer cells).  Then I have three options.  Option 1:  the plastic surgeon will immediately put in implants.  This is called a one-step.  Option 2:  the plastic surgeon will put in tissue expanders, which are hard crescent shaped shells that he will inject with fluid every few weeks until I like the size, and then he'll do a swap surgery where he takes out the expanders and puts in the implants.  Option 3:  flap surgery, where basically the plastic surgeon takes fat from other parts of my body, like my belly or butt, and puts it in the space that used to be occupied by breast tissue.  There are complications and things to consider with each of these surgeries, so I'm not really sure which route I like best.  I lean away from the flap surgery just because I feel like its a lot of surgery at once and it seems like it would be harder to recover, and I'd be left with more scars.  But implants come with their own problems as well, like needing to be replaced every so often.  Anyway, these are things I'll be asking the plastic surgeon about when I meet him.

Dr. F and I also discussed my own personal cancer risk, and he told me what I've felt in my gut all along.  My mother's age does have a bearing on my own time frame.  I'm 29.  She was 35 when she got cancer for the first time.  That's only 6 years away for me.  That's scary stuff.  There's no guarantee that I'd get cancer at her age, but the fact that she had it so young is not good news for me.  However, I feel better that I'm in his hands because he seems to have the same ideas about it that I do.  He feels that I need to be vigilant with my surveillance, and that I need to be screened every six months.  I hate the screenings, but I'm so glad to have a doctor who doesn't think I'm overreacting.

I'm tired of hearing that I'm overreacting.  You can't know how someone in my position feels unless you've been there.  Its so hard to constantly worry about whether I should just do the screenings or do the surgery, and if I don't do the surgery and I get cancer then I made the wrong choice, and then what if I get cancer and it spreads really super fast and kills me, and my babies have to grow up without a mom?  It's hard to be in a position to have to decide these things.

Anyway, back to Dr. F.  I've decided that I am going to stay with him.  He's really nice, he had a good handle on everything I asked about, and he has lots of experience with women in my position.  He didn't put any pressure on me about surgery either, he told me to think about it and ask any questions I have and I can call all the shots.  He said I am in charge here.  I like that.  He also told me to call his office any time and he'd get back to me with any answers I need.  I left feeling really good about the visit, and I'm looking forward to meeting with the plastic surgeon!

Additional information:
Cancer.gov Fact Sheet
Article about PBMs becoming more common
Christina Applegate's experience with being BRCA1+ and PBM

Doctors, Round One

In October of 2011, I had finally wrapped my head around the idea of being BRCA 1+, and that I needed to do something about it.  Obviously I was not interested in seeing another oncologist, so I started doing what I do best: research.  After a few hours I had a good plan.  I scheduled an appointment with a genetic counselor, and then another appointment with a breast specialist, and finally an appointment for a mammogram.

The genetic counselor was not especially helpful to me, since I already knew I was BRCA 1+ and I knew where it came from genealogically.  But if you're considering getting tested, I highly recommend going through a genetic counselor.  I wish I had gone that route initially, because I think my experience would have been much better.

My appointment with the breast specialist was okay.  He was friendly and nice and when I cried in his office he gave me a tissue and his nurse gave me a hug.  They were so helpful and wonderful to me.  They were the first people throughout this journey that had been truly understanding and for that I am eternally grateful to them.  The doctor even called to schedule my MRI with me sitting there crying because he wanted to help me.  I don't know why I was crying, by the way.  I think everything just caught up to me and I broke down.  I try to be brave and strong for everyone else's benefit but sometimes it just gets to be too much.  It happens a lot.  I'm emotional :)

Next was the mammogram.  I'm very lucky to live in Baltimore, where we have tons of amazing hospitals.  And I know Johns Hopkins is known for being innovative and they're a top hospital in the country.  BUT, I am not a fan.  I went to one of their radiology centers for my mammogram.  I've been having mammograms since I was 25, as recommended by my mother's oncologist.  I always have resistance from the staff, and lots of questions regarding my age and why I need a mammogram.  I'm used to it.  But this experience was the worst by far.  After the annoying onslaught of questions I've grown accustomed to, they sent me back to the little dressing room thing and made me put on a gown.  I sat there for half an hour.  Finally someone came and told me that she was so very sorry, but my appointment would have to be rescheduled because the doctor had left early and they needed him on site to perform the mammogram because of my age.  What?!  I had never heard that information before, and I had taken the day off work (I work from home) and found a babysitter and everything.  It was extremely inconvenient, and I was livid.  Needless to say, I will not be going there again.  I also never did get that mammogram, but it's okay because I had a breast MRI instead.

That was an experience, for sure.  Nothing like laying inside a tube with your boobs tucked into these holes while you lay on your belly with your arms above your head for half an hour.  Not something I'm looking forward to doing annually, but it has to be done.  At least it came back clear so I could breathe again!  Its very stressful to sit around waiting for those results to see if there's any kind of a mass or abnormal cell growth.

So that was my first round of doctors and tests.  My breast specialist came up with a plan that I would have imaging (either mammogram or MRI) every 18 months.  I initially agreed to this, but after I thought about it for a few days I decided that it didn't seem vigilant enough.  Everything I've read recommends screenings at least every 6 months.  This doctor, although fabulous and caring, had the idea that I was jumping the gun by asking about a prophylactic bilateral mastectomy (which I will explain more about later).  He also told me that he felt my mother developing breast cancer at a young age had no bearing on my future.  While I know there are two different medical opinions on this, I tend to like to err on the side of caution.  So I sought a second opinion, which I will chronicle in the next post, since this one is getting pretty long :)

Previvor

I felt compelled to address this term after reading this post on a blog I recently discovered, written by a woman who is also BRCA+ and had a PBM (Prophylactic Bilateral Mastectomy) and reconstruction.  I'll probably use this term a lot, so let me explain it.  I'm not a survivor.  I've never had cancer, and I hope I never do.  My goal is to never have to call myself a survivor.  Instead, I am a previvor, a person with a predisposition to cancer.  According to FORCE (Facing Our Risk of Cancer Empowered):

What is a Previvor?

A previvor is a survivor of a predisposition to cancer.  The term specifically applies to the portion of our community that has its own needs and concerns separate from the general population, and different from those already diagnosed with cancer. Previvor was coined in 2000 after a challenge from a community member who said she “needed a label.”

In 2007, Time magazine declared the term #3 on their list of top 10 buzzwords of the year. Ten years after we created the term, Congress passed a resolution declaring September 29, 2010, Previvor Day, recognizing the unique challenges faced by women and men at high risk for cancer.

The Oncologist

The first doctor I had the displeasure to meet with was an oncologist.  I happened upon him after months of back and forth conversations with my primary care doctor and my insurance company, explaining to them what BRCA testing is and why I need it.  You would be amazed and how little education there is in the medical community about BRCA.  Nobody ever knows what it is and I find myself explaining it to doctors and nurses constantly.  It really upsets me that its so unknown, yet so important.  Anyway, back to the awful oncologist.

I met with him to get my BRCA blood test done.  Its a simple blood draw, and it takes weeks for the results to come in because only one lab in the country does the test (Myriad, in case you're wondering).  My insurance didn't cover the test, so it cost $400 payable directly to Myriad.  When I got to the oncologists office, they immediately did my blood draw and then made me sit in an exam room for half an hour before the doctor came to see me.  I was scared and nervous and alone and had no idea what he was going to say to me.  I thought he'd be nice and sympathetic and try to make me not worry so much.  I was never more wrong in my life!

He was an older man, and very sexist obviously.  He immediately wanted to know where my husband was (at work) and whether I had children.  He then went on to ask me whether I breast fed (no), and then chastised my choice and told me that I should have and that it is known to reduce breast cancer risk (let me just say that after this conversation I did extensive research. Breastfeeding only slightly reduces the risk, and since I am BRCA +, it wouldn't do a damn thing for my risk.  He was wrong and rude and arrogant about it. Don't believe everything the doctors tell you).  He also told me that if my test came back positive he recommends that I have another baby as soon as possible and breast feed for as long as I can (!!!).  When he concluded the meeting, after brushing off all of my questions, he told me this is a terrible situation and he feels really bad for me and my family.  After I left that appointment I called my mom and cried in my car for about ten minutes before I headed back to work.  He made me feel like it was all my fault and I was destined to die from breast cancer.  He was awful and I will never go back to that man again.

Several weeks later, I got a phone call at 8 am from this lovely doctor.  He said, "Well, I have bad news, you're positive for this thing.  It's really terrible.  You're going to need to get some surgery done, so you'll have to set that stuff up.  Call my staff at some point and set up an MRI too."  That was all.  No further explanation, no empathy.

It took me a few months to come to terms with these results.  I shared the news with people, who (as I said in my previous post) were less than supportive, and I thought about my options a lot.  It was a lot more emotional than I was prepared for, and I wish I had known then what I know now about the different doctors I could have seen.  There are genetic counselors who perform these tests, and offer you counseling and support groups and provide resources and information.  There are breast specialists who are very familiar with this test and condition and they're experienced in helping previvors navigate this process.  I think my first steps in this journey were harder than they should have been because I was not aware of the resources available to me.  I only hope that the understanding of BRCA becomes more known in the medical community, so others in my position don't have to face the same unpleasant process I had.

The Beginning

I guess I should start this blog off with some information about who I am and how I got to this point.  My name is Erin.  I have two lovely little girls, a husband of six years, and a miniature zoo of pets.  I am a cake decorator, a crocheter, an amateur chef, and a college student, studying physical therapy.  I have a mom and a dad and some siblings and I grew up like everyone does, with one exception.  When I was 15 my mom was diagnosed with breast cancer at the age of 35.  BRCA testing was mentioned at that point but nobody pushed the issue and it was never done.  Fast forward ten years, and my mom was diagnosed with breast cancer again, a month after my oldest daughter was born.  This time she pushed the doctors into doing the full BRCA test.  Months later, her expected positive result came in and she proceeded to have an oopherectomy (removal of ovaries).  She'd already had mastectomies on each breast.  Her BRCA test now meant that I had a 50% chance of being BRCA+ as well.  A lot of people freak out when they're faced with whether or not they should find out.  For me, it was easy.  I had to know.

As expected, I am BRCA1+.  I knew I would be, I just had a gut feeling.  I was sort of prepared for it, in the sense that I had a plan.  What I didn't know was how I would feel about it, or how other people would react to it.  That was the hardest part I think.  I wish I could be one of those people who says that I'm lucky to have lots of support but I'm not.  The only person throughout that truly supports me and stands behind my decisions is my mom, and I think that's because she understands.  Mostly I've been met with opposition though.  I've heard that I'm borrowing trouble by even having the test done.  I've heard that genetic testing is weird and wrong and that I should stop worrying about such things.  I've been told that "everyone's going to die of something, and you can't run around getting tested for everything".  And of course, I have heard from numerous people that considering mutilating my body is absurd and way too drastic and I'm overreacting.

Here are the facts:  I have a deleterious mutation of the BRCA 1 gene.  It is an inherited trait, so I had a 50% chance of having it, and so do my siblings.  Because I tested positive, my daughters now have a 50% chance of having it.  While I can't make them get the test done when they're 18, I can educate them, and I plan to.  I'll use every opportunity I have to educate them on their genetics and how they can save their own lives.  My particular BRCA 1 mutation gives me an 87% chance of developing breast cancer in my lifetime.  Yes, that's almost 90%, which in my mind is almost 100%, so basically, I am destined to get breast cancer.  I also have a 40% risk of developing ovarian cancer.  Since ovarian cancer isn't present in my family, I have a tendency to not worry about this one as much, although I should.  Ovarian cancer has been termed the "silent killer" because it is very hard to detect and has almost no symptoms until the late stages.  Scary stuff.  To put it in perspective, the average woman has a 1% chance of developing ovarian cancer and a 12% chance of developing breast cancer.  My chances are dramatically higher, obviously.  I don't feel like I'm crazy for being concerned about this, and I'm not sure why other people think I am....?

So that's my background.  I'll have more posts upcoming about my experiences with my previous and current doctors, tests, and the choices I'm facing.  There's just too much information for one post.  But I hope this blog can at least shed light on this topic for some people, and help some other previvors in their journey.

You can read more about the BRCA mutations here.