“Cancer, A New Baby, and Discovering BRCA Within My Family Tree.”

By: Gillian Rice Maupin

I was 35 years old and 36 weeks pregnant with my second child on November 29, 2018 when I was diagnosed with breast cancer.  I had noticed a lump in my left breast several weeks earlier.  Had I known it was going to end up being the big C, I would have noted with more particularity exactly when I found it.  But I remember having my husband feel it and also telling two of my girlfriends when we did the photoshoot for my Christmas card where I recreated Demi Moore’s iconic Vanity Fair cover from the 90s.  And that was a year ago tomorrow on October 20th.

When I found the lump, I googled it since I was heavily pregnant at that point and my breasts had started producing colostrum sometime around the 4th month just like they had when I was pregnant with my first child.  Dr. Google told me not to worry and said lumps in the breasts were common during pregnancy as the body starts to ramp up milk production. It suggested trying to massage the lump out manually and also running hot water over it.  Needless to say, neither one of those worked for me and I know I had at least one prenatal appointment with my wonderful OBGYN, Dr. Danielle Holmes, where while redressing myself after our meeting, I thought, “Shit I forgot to ask her about my lumpy left boob.”  But since I was seeing her again a week or two later, I decided I would just ask about it then.

 So I arrived at my 36th week appointment, which happened to be scheduled right before my 36th week sonogram at Maternal Fetal Medicine where you get sent for all your sonograms when you’re a geriatric pregnancy which I still could not get over the fact I was at only 35 years old.  I told Dr. Holmes about the lump and she laid me down to examine me and feel it herself.  She got out a tape measure and measured what she could feel at 7 centimeters stretching right across the center of my left breast.  And what Dr. Holmes did, instead of telling me it was probably nothing and not to worry, was call over to Women’s Imaging at Virginia Hospital Center to see if they could fit me in for an ultrasound that very afternoon.

 I rushed through the sonogram telling the technician that I had to make it down to Women’s Imaging ASAP.  The good news was that my daughter was measuring large – 7.5 pounds they thought – and I was thrilled that I might have another almost 10-pound baby like my first since I still had 4 weeks left in my pregnancy.  My ultrasound was performed Dr. Bonnie Ahn.  Dr. Ahn told me that I had very dense breast tissue so that and the fact that I was pretty pregnant was making it hard for her to see the mass on the ultrasound.  I remember asking her if she was seeing anything that would lead her to believe that the mass might be malignant.  She told me that most of the time, benign masses were smooth and that mine had tentacles which she didn’t like.  She said that if I could be back the next morning at 8:00 am, she would fit me in before her day officially started to do a biopsy.

The biopsy was on a Thursday morning and they told me I probably wouldn’t get the results until early the following week.  In the meantime, Google was helping me to feel reassured that it probably wasn’t cancer.  Only 1 in 3,000 pregnant women is diagnosed with breast cancer I read.  And I was only 35 years old with only 1 relative I knew of who had ever had breast cancer.  My dad’s oldest sister was diagnosed with breast cancer in 2008 under not especially suspicious circumstances – she was 65 years old when she was diagnosed and died 6 years later because the cancer was metastatic before she she found it.

 The following day was my last day at a job I was leaving.  Even though I was only 36 weeks at that point, my husband and I had decided that after a very stressful year, I should give myself those 4 weeks off before I gave birth to recharge my battery and ready myself for Baby #2.  The joke was on us –  life had other plans for what I would be doing over the next several weeks.

I left my office downtown and headed home to Alexandria, Virginia around 3:00 pm.  I was about a half hour early for when I could pick up my older daughter Ramsey, who was 2.5 at the time, from daycare, so I decided to run to the supermarket.  I had just pulled into the parking garage when Dr. Ahn called me to tell me the news.  She said the biopsy results were back and it was what we were hoping it was not – cancer.  Instead of panicking, I just asked her what I needed to do.  She said first thing Monday morning I needed to come back and see her so she could examine my right breast and my lymph nodes on the left side.  Then she said I needed to go see someone in the Breast Health Center at Virginia Hospital Center and she referred me to Dr. Claire Edwards.  Finally, she told me I should get in to see Dr. Holmes on Monday as well because there were diagnostic tools that were unavailable to me as long as I was pregnant.

By the time I called both Dr. Edwards and Dr. Holmes’ offices to schedule my appointments, after a quick call to my husband dropping the cancer bomb, Dr. Ahn had already talked to both doctors and told them to fit me in whenever they could on Monday after my appointment with her. I later learned that Dr. Ahn, Dr. Holmes, and Dr. Edwards had exchanged cell phone numbers that Friday afternoon so that they could coordinate on my case.

 That weekend was one of the scariest times of my life.  I knew nothing other than that I had an enormous mass in my left boob and that it was cancer.  I was worried I wasn’t going to be around to watch my daughters grow up – the one sleeping in the room next to me or the one still growing in my belly.  In hindsight, spending the weekend thinking I might die ended up being kind of a blessing in disguise for both my husband and I.  It meant that everything that came after it was easier because no matter how terrible things seemed, I was going to live.

 My husband told his work he had a family emergency so he could come with me to all my appointments on Monday.  At the ultrasound, Dr. Ahn didn’t find anything concerning in the right breast, but detected swollen lymph nodes on the left so she wanted to do a biopsy.  Her schedule didn’t allow for it to be done in time for me to make my next appointment with Dr. Edwards, so she offered to do it after that appointment on her lunch hour.  I remember Dr. Ahn telling me that day that she was impressed with how well I was handling everything and that she had seen firsthand how attitude is everything in these situations.  She said it would serve me well if I could keep that positivity going for the fight ahead.

 Next up was my first appointment with Dr. Edwards.  Having hit it off so well with Dr. Ahn, I was encouraged by her referral of Dr. Edwards.  And I had of course Googled her.  I saw that she went to Thomas Jefferson for high school, which being a local kid, I knew meant she was no slouch in the classroom.  Then on to the University of Virginia, my alma mater, and Duke Medical School.  In short, she is exactly whose care you want to be in if you have breast cancer.

 Dr. Edwards gave me all the nuts and bolts of my diagnosis.  My cancer was estrogen and progesterone positive which meant that while the pregnancy did not cause my breast cancer, it had fed it in a sense.  Because of my age and the size of the mass, which I learned was appearing between 4 and 5 centimeters on the ultrasound, she wanted to treat my cancer as aggressively as possible, which meant surgery, chemotherapy, maybe radiation if the biopsy found that the cancer had spread to my lymph nodes, and 5-10 years of hormone therapy after that to prevent recurrence. 

The surgery I was prepared for.  I guess you never know how you’re going to react about the possibility of losing your breasts until you have cancer, but my attitude was cut them both off immediately – they’re trying to kill me.  Dr. Edwards asked if I wanted to be tested for the BRCA genes because that could inform treatment decisions and I said of course never assuming there was any possibility I might have one of them.  Like I said, I only had one relative who had ever had breast cancer and she got it when she was in her 60s.  But chemo scared the shit out of me.  Dr. Edwards said something that day that really helped my mindset about the road ahead.  She said to stop picturing chemo the way it looks in 90s movies, which incidentally was exactly how I was picturing it.  Specifically, I was envisioning myself puking in the bathroom while my newborn baby cried in the next room.

 The only time I came close to breaking down in that first meeting with Dr. Edwards was when I asked her point blank if I was going to die.  She answered very quickly and confidently said no.  Catching herself just a bit, she did say that cancer was weird and that she had seen cancer do weird things.  But that even if it had spread beyond my breast and beyond my lymph nodes, breast cancer specialists had a plethora of tools in their arsenal that could keep me alive for years.  I left Dr. Edwards office feeling like the cancer growing inside of me was a beast, but it was a beast that I was going to kill with her help.  And I can’t thank her enough for that sense of empowerment.  It was exactly what I needed on that very scary day.

 My last stop was to see Dr. Holmes.  I understood before I went to that meeting that we were going to have to get the baby out as soon as possible.  Dr. Holmes walked into the exam room where I was sitting with my husband and just said, “How does Thursday sound for McCoy’s birthday?”  I had shared my baby name with Dr. Holmes probably on my first prenatal appointment since it was the name I was going to use whether my baby was a girl or a boy.  Then she gave me a big hug and told me how sorry she was about my diagnosis.  I was and remain so thankful to have had Dr. Holmes as my OBGYN.  You hear all these horror stories of women who bring suspicious lumps to the attention of their doctors only to be told that its probably nothing.  From the get-go, Dr. Holmes was proactive and advocated for me immediately by getting me to Women’s Imaging the very day she felt the lump.

My daughter, McCoy Alexandra Drewry, arrived on December 6, 2018.  Turns out the prior week’s ultrasound was wrong about her size and she was only 6 pounds 6 ounces when she made her way into the world.  I delivered her via C-section at Virginia Hospital Center where I received the most outstanding care from my nurses and physicians.  Every single person I encountered during my hospital stay was aware of my situation and the nurses were all helpful and sensitive about the breastfeeding issue.  I wore 2 sports bras during and after delivery and they gave me Benadryl to help dry up the breastmilk that was coming.

I got to spend two nights at home with McCoy before heading back to the hospital that Monday to have my full body and bone scans.  In retrospect, I am amazed that I wasn’t freaking out walking into the hospital that day.  The biopsy of my left lymph node had come back inconclusive and so they didn’t know whether the cancer had spread there or whether they were just swollen from the breast biopsy.  My scans took most of the afternoon and I was alone because I thought it was better for my husband to be at home with our newborn daughter than sitting in the waiting room at the hospital just to be with me.  But by the time I pulled into my driveway in Alexandria that evening, Dr. Edwards called me to say there was no evidence of the cancer spreading anywhere else in my body or in my bones.  But she also told me that I had tested positive for the BRCA II gene mutation.  I was shocked.

At first, finding out about the BRCA II gene made me feel relief.  It helped explain why this happened to me at 35.  But then the fears creeped in.  I have a younger sister who was 33 years old and who I now understood had a 50/50 chance of having the gene as well.  And now I had two daughters who might also carry the gene.

At the end of our conversation, Dr. Edwards told me before I made any decisions about surgery – because like I said, my initial reaction was to cut both of my breasts off and the sooner the better so as to exorcise the cancer from my body – she wanted me to meet with the breast oncologist at Virginia Cancer Specialists, Dr. Neelima Denduluri.  Dr. Denduluri was able to fit me in later that week and then I would go back to see Dr. Edwards again the following day once I had heard what Dr. Dendulurri recommended.

In the intervening days, I read all that I could about the BRCA II gene.  I understood anecdotally from my conversation with Dr. Edwards that it had probably come from my dad’s side of the family, since it was his sister who had breast cancer, since my paternal grandfather had died of prostate cancer, and since on my mom’s large Irish Catholic side there was absolutely no breast cancer.  Since my father had passed away in 2003, the only way to know for certain was to test my mom for the gene, but when I met her Dr. Denduluri concurred with my suspicion, based on my family history, that it had probably come from my dad’s side.  She scheduled an appointment for me with Virginia Cancer Specialist’s genetic counselor so I could better understand the ramifications of having the BRCA II gene and suggested that I also bring along my mom and sister to that appointment.  But that appointment was weeks away and knowing what I did, I decided to reach out to my paternal cousins sooner rather than later and let them know about my discovery of the BRCA gene and why I suspected it came from that side.

Not having emails or cell phones for all 5 of them, I composed a Facebook message explaining that I had been diagnosed with breast cancer which led to the discovery of the BRCA II gene and why my doctors believed it came from that side of the family.  I encouraged them to do their own research and consider meeting with a genetic counselor and/or being tested for the gene themselves.  I explained that my aunt had probably had the gene as well and that she probably got it from our grandfather who died of prostate cancer.  My paternal grandmother, who had just passed away about a year and a half prior, had lived to be 95 without ever having a breast cancer diagnosis.  Within minutes of sending the message, my aunt’s only son reached out to me telling me he was sorry to hear that I had cancer and that his mom had the BRCA II gene as well, as did one of his half-sisters or so he thought.  I was floored.  Another one of my cousins, the daughter of my dad’s other sister, asked if I had the same gene our aunt had.  So she knew too.  In fact, I would learn, they all had known but none of them thought to ever inform my sister or I.  This discovery was and has remained one of the hardest aspects of my experience this past year.  I felt betrayed by my own family and spent a lot of time going through all the could’ves and would’ves if I had learned about the possibility I might have the gene back in 2008 when I was only 25 years old.

When I met with Dr. Denduluri, she also explained why she wanted to do chemotherapy before surgery in my case.  First and foremost, even though my scans were clear, she wanted the chemo to attack any rogue cancer cells that might have escaped from the breast and be looking to set up shop somewhere else in my body.  She also explained that if the chemotherapy shrank my tumor, it would allow Dr. Edwards to hopefully perform a skin-sparing nipple-sparing double mastectomy – which meant I could keep my skin and my nipples.  Finally, since I carry the BRCA II gene and have an elevated risk of other types of cancer, we should know my body’s response to chemotherapy if I ever find myself facing another cancer diagnosis down the road.  Despite my deep desire and initial inclination to just cut the cancer out immediately, Dr. Denduluri had made her case.  I just wanted to know how soon they could get me in for my first infusion.  Dr. D said I had to chill.  First, I had just had a baby a week prior.  Second, there were a number of things I had to do before I could start chemo, including having a port to deliver the medicine installed and also having an EKG to test the strength of my heart for chemo.  And we were at this point in the middle of December with the holidays around the corner, so these appointments were not going to happen overnight.  They did happen over the next two weeks however and I had my first infusion on New Year’s Eve.

Turns out, Dr. Edwards was right and chemotherapy in 2019 is not what it looks like in 90s movies.  The advances in oncology mean that doctors know how to pre-dose most of the more major side effects of chemo.  I was never sick from the chemotherapy, aside from feeling very tired and worn out the days of my infusions.  That’s not to say I didn’t experience some more than mild discomfort, like constipation from the anti-nausea medicine and a real case of roid rage from the steroids they pump you full of before the Taxol.  But it was all manageable.  I had friends and family who volunteered to watch McCoy for me on every chemo day and my husband was able to pick me up after every infusion.  The rest of the time, I was able to stay home, rest, and snuggle with my newborn.  Thank goodness it was the dead of winter.

I did 16 weeks of dose dense ACT.  I had infusions every other Monday.  Throughout that time, I saw Dr. Denduluri or her wonderful nurse practitioner Julie Park the Friday before every infusion.  I lost my hair just like the Internet said I would on Day 16 after my first infusion.  But knowing that it would be too painful to lose my long brown hair by the fistful, I went ahead and shaved my head the day before my first infusion.  I had my husband’s hairdresser come to my house that day and first give Ramsey her first haircut and then shave my head.  My closest friends were there in my kitchen with me and took turns cutting off long strands before the big shave.

I was terrified my daughter was going to be scared of me but at some point well after the hair on my head was gone, we were talking about hair color and I asked her what color my hair was.  She said “Nothing mommy. You’ve just got a bald head!”

By the time my last infusion rolled around on April 8th, the temperature outside had warmed up and UVA men’s basketball had made it to the national championship.  When I arrived home from the hospital that day, two of my best girlfriends were waiting with champagne and had decorated my house with balloons.  I continued the celebration that evening with the first wine I had had since I found out I was pregnant and a UVA national championship win.  All in all, it was a very, very good day.

In the 4 weeks in between finishing chemo and having my surgery, I had an MRI to see what the chemo had done to my tumor.  On Easter Sunday the results of the scan popped up on my MyVHC account and I learned that the mass had nearly been eviscerated and was now less than half a millimeter.

Next up was my bilateral mastectomy which was scheduled for May 8th.  Halfway through my regimen of chemotherapy, I did back to back appointments at the Breast Health Center with Dr. Edwards and Dr. Marilyn Nguyen, the plastic surgeon Dr. Edwards referred me to.  Dr. Nguyen and I got along famously right from the get-go and we decided that I would go with implant reconstruction.  Dr. Nguyen would place tissue expanders immediately following Dr. Edwards’ removal of all of my breast tissue.  The final implants would be placed at a second surgery which would either be 12 weeks after the mastectomy or quite a bit further down the road if I needed radiation.  Unfortunately, my team didn’t know if I was going to need radiation until after the mastectomy when Dr. Edwards would perform a sentinel node biopsy on my left lymph nodes.  And the results of that full biopsy wouldn’t be ready until several days after the surgery.  I actually went and bought myself a healing candle where you write out an intention on the label and burn the candle while thinking about that intention.  And guess what? It worked! Knowing how anxious I was about the results, Dr. Edwards sent me a MyVHC message the minute she got the biopsy results.  No evidence of the cancer ever having made its way to my lymph nodes which meant no radiation.

I had a very easy time recovering from my mastectomy thanks to my husband and my brother-in-law who came up and lived with us for 10 days to help take care of me and my gals.  I was back on my feet just a few days after surgery and holding my kids again within a week.  In some ways, I think recovering from my C sections was worse.

After a few appointments with Dr. Nguyen to inflate my tissue expanders to my desired size (which was just my 22-year old rack), I spent the rest of the early summer resting and recovering and watching my hair grow back slowly but surely.  I had my final surgery on July 24th when Dr. Nguyen switched out the expanders for my implants and I had Dr. Holmes remove my ovaries and fallopian tubes to prevent an ovarian cancer diagnosis down the road.  Before making the decision to undergo the prophylactic oophorectomy, Dr. Edwards had referred me to the wonderful (and very handsome) Dr. Richard Acevedo-Lopez, a gynecological oncologist at GW, who explained that I would be thrown into surgical menopause without my ovaries and what the side effects of that looks like.  But since I was already going to have my ovaries medically shut off as part of the hormone therapy I would receive to prevent recurrence of my breast cancer, I opted to undergo the oophorectomy immediately, rather than at 40 as is the current recommendation for BRCA II carriers who have not had cancer.

Finally, the pot of gold at the end of the rainbow was the tummy tuck Dr. Nguyen also performed during my surgery in July to repair the diastasis recti I developed from both of my pregnancies – I mentioned my older daughter was almost 10 pounds right?  So standing before you here today, I am a cancer survivor and I have probably the best body I’ve ever had in my entire life.  And while the discovery that an entire side of my family knew about the BRCA II mutation, and had known about it since 2008 when my aunt was diagnosed with cancer at a time when I could have taken steps to prevent myself from ever actually getting the disease, remains a mental struggle I confront on a nearly daily basis, I have a renewed sense of the good in the world thanks to:

  • my husband, who told me everyday I was bald how beautiful and strong I was
  • my two beautiful daughters, who I hope because of conferences just like this one will never have to go through what I went through even if they do end up carrying the BRCA II gene
  • my entire network of extended family and friends who took care of me and my family while we fought this beast that is breast cancer
  • and my entire team of amazing, badass (all female might I add) doctors who came together to save my life
    • Dr. Danielle Holmes, my OBGYN
    • Dr. Bonnie Ahn, the radiologist who diagnosed my cancer
    • Dr. Claire Edwards, my breast surgeon
    • Dr. Neelima Denduluri, my oncologist and her excellent nurse practitioner, Julie Park
    • Dr. Marilyn Nguyen, my plastic surgeon and her incredible physician’s assistant, Brittany Christopher
    • And all the amazing women at the Cancer Resource Center here at Virginia Hospital Center, as well as the wonderful nurses in labor and delivery and at the outpatient infusion center

From the bottom of my heart, thank you for everything you did for me and I promise never to take this life that you saved for granted and to be a resource and hopefully a source of strength for any woman who finds herself in my shoes facing a breast cancer diagnosis.

(Gillian.maupin@gmail.com)

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