Losing My Mother, Previving For My Children

Thank you to Grey Genetics and Patient Stories for having me on to discuss my journey with BRCA and surgery, but more importantly, for allowing me to discuss my children, who were/are a big part of all the decisions I made along the way.

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Show notes from Grey Genetics

At just 13, Heather lost her mother to breast cancer. Fifteen years later, a mother herself, Heather had genetic testing done and learned that she carried a mutation in a BRCA gene. Heather shares her experience as a previvor–from genetic counseling to finding the right doctors to her continued involvement in the BRCA community and the many changes she’s witnessed since she was tested in 2005.

Interview Reference Points: 

Heather learns that she carries a BRCA1 mutation @ 1:20

Making major medical decisions and finding the right doctors @ 7:54

Heather’s children’s books @ 19:59

Heather remembers her mother @ 22:19

Heather’s surveillance today and memories of scanxiety @ 27:24

The Breast Advocate app @ 29:14

Life after an oophorectomy @ 31:30 

Heather’s children’s and their BRCA risks @ 36:07

BRCA resources: then and now and the shift toward shared decision making @ 41:00

Heather’s advice to individuals considering genetic testing @ 43:35

Heather’s advice to individuals looking for the right doctors @ 45:08

My BRCA Story (Heather’s blog)

The Breast Advocate app

Breast Reconstruction Resources:

Terri Coutee on Twitter: @6state

The Diep C Foundation

The Diep C Journey Facebook Group

Heather’s books on Amazon:

Why is Mommy Having Surgery? She Looks OK to Me: For families with BRCA risk and undergoing prophylactic surgery and implant reconstruction

This Much I Know

Long Term Surveillance...Yes or No

This past week, I was fortunate enough to be asked to sit down for an interview and discuss BRCA as an expat.  One of the questions I was asked focused on the choices out there for women who find out they are BRCA+.  The one I always discuss, is the preventive prophylactic mastectomy, because, well, I had one and that was the topic everyone was curious about!  I didn't focus as much on the 10 years I spent doing surveillance due to having babies and being an expat.  But I feel that needs just as much discussion these days, because there are a lot of women out there who want nothing to do with surgery...just yet.

I look back, and I think about how crazy it is that I went through all this testing and getting my BRCA+ results before the Angelina Jolie Effect.  I had nothing to read online, no one to guide me and certainly no one to see photos of who had had a mastectomy and direct to implant surgery.  What I did have was a great team of doctors and a genetic counselor at Huntsman Cancer Institute in Utah, who were able to talk to me about my options at the time.  

Because I had just had a baby when I got my results, and I fell pregnant again, it was recommended to delay any surgeries for a while, and because I was breast feeding, even my mammograms and MRIs would be delayed.  That was the hardest part for me.  I knew for sure that I was BRCA+, but I still couldn't do anything about it.  I honestly would have had the surgery that day if I could have.  I was on self breast exam surveillance mode, and as soon as I could, I'd begin alternating MRIs and mammograms every six months.

Photo from Pixaby

I finally had my first mammogram in 2007, 2 years after learning I was BRCA+.  That was a long time to keep wondering, will I get cancer before I try to prevent it?  I was done breastfeeding my second child and I hadn't yet fallen pregnant with my third.  I held my breath before, during and after as I waited for results.  Luckily, it was negative.  After my third child was born and I was done breastfeeding, I had my first MRI, in 2009.  I hated every minute of it, and wished more than anything that I would never have to have another one again.  That began my surveillance, on a regular six month cycle, for the next six years.  Why did it take me six more years to finally have surgery?  Because we decided to pick up the family and move to the United Arab Emirates for a teaching position in 2010.

So, there we were, plopping down in the middle of the desert, and the first task I had was to find a new medical team, let alone, how to get a mammogram or MRI under my new, foreign insurance.  It took A LOT of talking, A LOT of doctors offices, and A LOT of panic.  I was an anomaly.  Doctors in the Middle East didn't have much experience with BRCA in 2010.  They honestly didn't know what to do with me.  

Thankfully, persistence paid off, as I found Tawam Hospital in the Emirate of Al Ain, a partner of Johns Hopkins.  Finally, people who knew what I needed.  They set me up on my six month schedule of MRIs and mammograms, and actually told me NOT to have reconstruction surgery in the UAE, as they just weren't proficient in it yet.  I couldn't go back to the States for it, due to insurance, so surveillance it was.  I continued my six month routine, holding my breath before, during and after every scan, developing scanxiety, and just worrying more and more that I was playing with fire.  Would I develop cancer before I could actually do something about it?  It wasn't a way to live.

I felt like a clock was ticking as entered my 30s.  My mother and grandmother were diagnosed by 40.  I was getting closer and closer to that age with each passing year and each passing scan.  From 2010-2014, I lived in the UAE and had no choices for preventive surgery.  But, in 2014, we moved once again, to Singapore.  I found a doctor who referred me to my first MRI and mammogram in Singapore.  Unfortunately, it was my first abnormal scan, they found a cyst.  All that went through my mind was how I waited too long and I shouldn't have done surveillance for so long.  I should have been more proactive.  As I discussed the results of the scan with the doctor, her response was to do a lumpectomy or watch it for six months to see what happens.  WHAT?  I'm BRCA+ and you want to "sit on it"!  I was out of there and began a furious search for an expat doctor.

It was here that I met a phenomenal expat doctor who trained in genetics and oncology at UCLA.  We discussed my recent scan and my history, and he was shocked that I had lasted this long with surveillance.  He was putting wheels in motion after our first meeting.  Luckily, my husband's new insurance covered me in the States, and I could pick the doctor of my dreams and have the surgery I had been waiting for after 10 years.  In 2015, my six month scans were over, and I had my preventive prophylactic mastectomy.

Surveillance isn't for everyone.  As I mentioned earlier, I wished I'd had my surgery right away.  Those 10 years were awful for me.  I hated wondering and not knowing.  I hated taking that risk of waiting.  It's an internal conversation you need to have with yourself, but also with your genetic counselor and doctor.  Do what's right for your situation.  If you have questions and are wondering about how to navigate all this information, please download The Breast Advocate app.

Fat Grafting or No...One of the Most Asked Questions of Me

I had an amazing experience with my surgery, from beginning to end.  I'm one of the ones who truly had a one and done experience.  I chose a phenomenal team at PRMA in San Antonio, using Dr. Chrysopoulo as my surgeon.  Dr. C, as we all affectionately call him, is a microsurgeon and even more importantly, a board certified plastic surgeon skilled in breast reconstruction.  I cannot emphasize enough how important it is to do your research before you settle on a surgeon or surgical team.  You have a choice. You have the right.  You need to choose someone who knows what he/she is doing.  Someone who can connect you to previous patients, someone who can show before and after photos, and most importantly, someone who will listen to YOU.

That being said, I often get asked whether or not I had any fat grafting done after my "one and done" surgery.  The answer is, no.  For me, I feel like my results really couldn't be any better.  Could I be fuller?  Maybe.  Is there animation I wish would be covered?  Slightly.  But is the process worth it?  I don't feel it is, for ME.  Firstly, let me explain what fat grafting is.

File:Breasts.svg - Wikimedia Commons

Fat grafting basically involves taking fat from one part of the body and putting it in another.  In this case, it is most often taken from the stomach or thighs and placed into the breasts via liposuction.  Again, DO YOUR RESEARCH.  You need to make sure the place you're going to does this often, has correct procedures and know how to handle the fat cells properly.  But that's it.  In and out.

So why don't I want to do it?  I don't want to go through any more procedures, I really don't.  But that, on top of the fact that there's no guarantee that the first procedure will stick, added to me thinking it just wasn't worth it.  There's actually a chance that 30-50% of the fat in the first transfer will be reabsorbed by the body.  30-50%!  That's too high for me to think it's worth it.  I'm reading Facebook posts talking about this very thing, weekly.  Women going in for fat grafting, loving the immediate results, but then having reabsorption and having to choose whether to go through another procedure or just leave it alone and be happy with what they have.

So, for those of you who write in and ask if I ever did fat grafting, or why I didn't, there you go.  It was a personal decision and I'm happy with it.  For me, my journey was always about removing my ticking time bombs, not about perfection.  But, I'm pretty damn close, and I'm happy with that.

For answers to questions you might have, check out The Breast Advocate App.

Surgically Induced Menopause...The Truth

Let's be real for a moment.  Honest.  Brutally honest.  Let's talk about menopause.  Not just menopause, but surgically induced menopause.  It's no joke.  I don't write this to scare anyone, I write it to tell you MY journey and things I'VE learned.  May you be blessed enough to have none of these symptoms or only one or two.

Two and a half years ago, I had my bilateral salpingo oophorectomy...that's fancy talk for taking out my ovaries and tubes.  I did it only six months after having my bilateral prophylactic mastectomy with reconstruction.  I figured I'd just get it all done and put it all behind me.  My only goals were 1) to decrease my chances of developing breast or ovarian cancer and 2) doing it before I turned 40, as that's when my mom was diagnosed.

I've talked in previous posts about how well my mastectomy went, how I felt I was better prepared for it, and how calm I was...eerily calm, about the whole thing.  I wasn't attached to my breasts in any way, and really, my surgeon did such an amazing job that I don't miss a single thing about my old breasts.  Now, I will say, I had already had my children and got to breast feed.  So perhaps I'd feel differently if that wasn't the case.  But taking all that into account, I'm extremely happy with the results.

But then there's the oophorectomy.  It scared the crap out of me.  In one of my initial consults, I learned all about the risks of the surgery and all the side effects of losing my ovaries.  To hear words like memory loss, heart disease, bone density, psychological well-being and sexual disfunction...I'm amazed I went through with it.  But we need to keep one thing in mind...we're trying to avoid getting cancer, right?  So the only choice I had was to go through with it.  Now, let's fast forward to today, 2018, two and a half years later.

Ladies, I'm not going to lie.  It pretty much sucks.  Is it doable?  Of course.  Are there drawbacks, absolutely.  Some days my glass is half full and sometimes it's half empty.  But here we are, it is what it is, so I'm just going to let you know how it's all panning out.

Hair

My once thick beautiful hair is now thinning.  I take biotin, collagen, buy shampoos with lavender...anything people suggest, I try.  But alas, it's thinning and I hate it.  The positive side?  I don't have to shave as often anymore because hair, anywhere, barely grows anymore, and the ones that do are soft.  That's a plus, right?  Some say to get your testosterone tested as it can cause male pattern baldness type issues.  My testosterone is AOK, so what's next?

Skin

Awww, say goodbye to  beautiful, supple skin.  The elasticity just isn't the same anymore.  I now look down and see my mom.  Not that mom looked bad!  But come on, when I was little, I thought my mom was old, when really she was only 39...lol.  In addition to the supplements above, I use wonderful lotions...but really, it's just my reality now.  It's a bit more wrinkly and a bit more loose.

HRT

So, I tried to avoid HRT, but the reality is, I couldn't.  My hot flashes were non-stop...8-10 massive whammies during the day alone, ones that caused me to mop myself down with tissues.   So, I started taking progesterone and estrogen.  Ahhhh, the joys of estrogen gel.  Every night, I get my measuring stick, squeeze out my gel, and rub it onto my arm.  I then wait for it to dry while trying to avoid getting it on anything.  It's so sexy.  The hot flashes went down to about 4-6 a day and were more manageable.

Sleep

Once I had my oophorectomy, it's like I woke up to life, and can't go back to sleep.  Sadly, I've tried all the herbal remedies, compounds and HRT, but nothing can get me to sleep...and stay asleep.  So, I take half an over the counter sleeping pill a night which keeps me in a beautiful slumber.  Some doctors recommend taking some anti-depressants for hot flashes which also helps with insomnia, but I'm not sure I'm ready for that.

Weight Gain

Oh, the weight.  It kept coming and coming and coming.  I was at my wit's end!  I hadn't changed my eating habits, I went on HRT to be more hormonally balanced, and yet it was as if my body said, "hey, it is what it is...accept it!."  Ummmm, no.  Wasn't going to.  So, my doctor put me on the keto way of eating and guess what...all the weight melted off.  I haven't stopped, going on over a year now.  It also dramatically reduced my hot flashes to about 2-3 a day and barely noticeable!  I'm guessing the lack of any and all sugar did that, but I'll let a medial genius disprove me.

Memory

I scoffed at the idea that a simple surgery, ok, not simple, but you know what I mean, could change my memory capability.  But wow.  I notice a huge difference as the years go on.  I'm not as mentally sharp.  Sometimes it takes me a bit longer to realize what I'm trying to do in the moment, what I came into the room to do, think of something I was supposed to tell someone...just these blips here and there that are happening more often.  Sometimes I just laugh at myself and say, oops, another oopho brain moment.

Sex

Ok, SOOOOOO personal, but so real.  So, here it goes.  You'll be dry.  That changes everything.  It instills fears.  Fear of pain, fear of lack of pleasure, fear of everything being different.  You can try estrogen insertion pills to help, different gels, whatever will work for you...BUT KEEP AT IT.  Keep trying to find a solution and don't let the fear take over.

Babies

So, I knew I was done having children.  I really did.  Really.  Well, I tell myself that anyway.  But oh my goodness, now that I'm 2.5 years out, something strange is happening to me.  I have baby fever.  I see them and I want them.  I imagine having one.  And then, it sets in.  I can never have a baby that is genetically mine.  And it makes me sad.  Should I have harvested eggs?  Too late now.  I wasn't even thinking about it because I was done having kids.  Honestly, I was done.  I think.

That's it.  That's the joys of having surgically induced menopause.  The gift bestowed upon you for completing a life saving surgery.  Am I thankful for having the opportunity I had to chance my life's course?  Absolutely.  But am I human, experiencing grief, anger and change?  Absolutely.