Survivor Stories: Local woman shares journey from diagnosis to reconstruction
To look at Amy Childers, you wouldn’t assume this petite, artsy wife, mother and resident of what she describes as “hipster Mayberry” has a lot of fight to her. But, you would be wrong – Childers has grit.
Little more than six years ago, at the age of 42, Childers was hit with the harsh reality of a world changing diagnosis.
“I was tested for an found out I was positive for BRCA2 in 2011. My first cousin was diagnosed, which is why I got tested,” Childers said. “My ethnicity is Ashkenazic – which is a sect of Judaism from Eastern Europe. When my cousin tested positive, they branched out to test her siblings and parents. My aunt tested positive, which led to the testing of my dad and then to my testing. Over all in my family we have 13 people who have been positively diagnosed with BRCA2.”
BRCA2 is a human tumor suppressor gene found in all humans and is responsible for repairing DNA. However, when a mutation of this gene occurs, the protein leads to many complications – included breast and ovarian cancer.
For those of the Ashkenazic ethnicity, the chances of having this mutation are even greater.
“The statistic is that 1-in-8 women get breast cancer. In the Ashkenazic, 1-in-40 women test positive for BRCA1 or BRCA2. At the time I was diagnosed, I was told I had an 87 percent chance of developing breast cancer before the age of 80, and a 44 percent chance of ovarian cancer. Ovarian is the scarier of the two, it is basically a death sentence,” Childers said.
Instead of sitting around waiting for the “Big C” to coming knocking at her door, Childers decided to take preventative measures for the sake of her health.
“The recommendations of testing is to remove all susceptible tissue,” she said. “There are varying treatment options with various success rates. At 42, I was already married and past childbearing, so I chose to have the ovarian surgery done first. After that, I wallowed around for six years, completing scans of my breasts every few months.”
It wasn’t until earlier this year that she decided to take the leap toward her next preventive measure – a double mastectomy.
“I had the mastectomy on May 16 as a preventative measure – the same thing as Angelina Jolie. It was a leap of faith decision,” she said. “I am going through the reconstruction process now.”
For Childers, the next step in her journey was undertaken earlier this week.
“I (had) the exchange surgery on Tuesday, which starts me on the process of feeling like a real human again, and not a science experiment,” she remarked.
For the surgery itself, Childers said she is looking forward to getting some much-needed respite from the last several years.
“I’m looking forward to it because I’ve been sitting around for six months waiting for the next steps. I’m looking forward to seeing what my plastic surgeon does. I really searched to fin the right fit for me, and he does good work and is a real collaborator. My procedure required two surgeons: Dr. Justin Sacks is the plastic and reconstructive surgeon who gets and deserves all the glory; then there is Dr. David Euhus at Johns Hopkins who is the breast surgeon who did the actual mastectomy. Dr. Euhus is really the unsung hero.”
However, there are more perks to the reconstruction surgery Childers is looking forward to.
“My husband and I have been going through all of this for six years, we are just ready for the next step. My husband said he is looking forward to a quieter life where this isn’t so much in the spotlight of everything we do,” she said. “And I’m looking forward to boobs! Next year, Mardi Gras baby I like beads.”
Due to complications from BRCA2, Childers and her husband, Jack, were unable to conceive any biological children of their own. However, through the miracle of science – coupled with a third party ovum donor – Childers is raising a wonderfully healthy 12-year-old son. Thankfully for this young man, he need not worry about the hereditary aspect of BRCA2, but for Childers’ young nieces, that isn’t reality.
“My sister is also positive and has two little girls. She had surgery shortly after I did. Aside from the fears and health reasons, we both want to show my nieces that you have choices and that breast cancer isn’t the end of the world,” she said. “(My nieces) are 10 and 7, and they each understand what is happening on their own developmental level. That is the normal scenario with children. My 10-year-old niece can articulate to you that she has a 50 percent chance of having BRCA2.”
While cancer can be a scary prospect, Childers claims the real culprit is metastasis – a development of secondary malignant growths.
“There was a young mother in our community, Victoria Smith, who passed away two years ago from breast cancer. She was young, fit, ate a Paleo diet, but her cancer led to metastasis in her brain. That is what can happen and where more research is needed; metastasis is a killer,” she said.
According to Childers, the attention given to breast cancer awareness – while helpful – can be often misplaced and used for greedy intent.
“We are all really aware of breast cancer. The awareness still needed is to pay attention to your health, to self-check, to go to your doctor,” she said. “However, breast cancer survivors, by and large, don’t like ‘Pinktober.’ We get upset with the pink and the products sold where the money doesn’t go (toward research). If you see a scarf that has pink ribbons and you want to buy it in honor of your aunt, that’s great. But, unless it says otherwise, that money is going toward that company, not to organizations.”
There are, however, various local organizations of which Childers sings praise.
“Breast Cancer Awareness of the Cumberland Valley has all the support anyone could need. They have a wig bank, they purchase meal cards for those going through chemo and they have people who can drive you to treatments. They are a wonderful organization,” she said. “There is also the Bodice Project, which is an art project that started by wrapping women who had mastectomies in plaster and honoring those individuals. The models through the project have had their lives profoundly enhanced by that experience. I have a model being built for me right now by ceramic artist Anne Rule-Thompson in Bolivar that is tremendously beautiful.”
The Bodice Project, which began locally, will soon get broad recognition in other parts of the United States.
“There are fundraisers coming up which will help get the project to a huge oncology conference in Chicago. Hopefully there will eventually be workshops throughout the country to get other areas helping these women heal,” she said.
While Childers’ choice to have surgery was the right one for her, she stressed the importance of those who have been diagnosed in knowing their options.
“By law, if your insurance covers your mastectomy, it must cover your reconstruction. There are also many reconstruction options; not all surgeons offer all options,” she said. “I want every woman who may be facing genetic testing, prophylactic surgery or a diagnosis of breast cancer to know they don’t have to face this alone. The web of networks out there spreads far and wide. Also, you don’t need your breasts to feel beautiful or feminine. I had to learn that the hard way.”
As for Childers’ post-surgery hopes, they couldn’t be simpler.
“It hasn’t been a great year, but it hasn’t been as bad as I thought it would be. After my surgery, I’m going to sleep really well for the next week and binge on Netflix,” she said. “I’m not your typical survivor story. But thankfully, I got to kick cancer’s ass before it kicked mine – and it looks like I won.”
For more information on the Bodice Project, visit www.thebodiceproject.org. For a listing of businesses that donate proceeds to breast cancer programs and research, visit http://read.bi/2ydvMm0.