“They say lightening doesn’t strike twice, but man were they wrong.
Growing up, my sister and I were VERY competitive. We played similar sports, had similar interests, worked together and even dated guys with the same first name. That was not intentional, but nonetheless, everything we did was similar. We also bickered a lot and had a love-hate relationship with each other. As we grew older, the similarities didn’t cease to exist. In fact, my sister showed up to my son’s first birthday in nearly an identical outfit with her hair curled. I never curled my hair, but on this occasion, I did. My husband even got us confused. Oddly enough, the similarities continued as we grew older.
Back in November 2018, my sister went in for an annual OB appointment where she mentioned pain in her left breast. She hadn’t felt any lumps, but assumed the pain stemmed from a clogged milk duct. Her OB did ended up feeling a lump and had a diagnostic mammogram and ultrasound done only a week later. Because of her dense breast tissue, which I also have, there were some suspicious spots identified. Only a few weeks later, she had a biopsy done. She remained positive throughout this process. She knew that breast cancer was typically found when women were older, but she knew she needed peace of mind, so she anxiously awaited the results.
On November 26th, her doctor called with the results of her biopsy. The results stunned her. I remember I was home sick with a migraine when I got a message from her simply saying, ‘I have cancer.’ Ashley was diagnosed with stage 2 invasive ductal carcinoma at the age of 32. Her doctor recommended she have genetic testing done since there was a history of breast cancer. My mother’s sister had battled and beat breast cancer. My grandfather had battled breast cancer, even undergoing a single mastectomy, but later lost the battle to cancer after his cancer came back as bone cancer. She came back positive for the BCRA2 gene.
Her geneticist recommended that I get genetic testing done. As first, I was adamantly against it. I thought, ‘What are the chances that lightening would strike twice?’ I was encouraged by family members to go through with the testing, and in January of 2018, I met with a genetic counselor. I was also tested for the BCRA2 gene. Being a twin meant my chances of having the gene were much higher. As it turns out, I also tested positive for the mutated gene. We also quickly determined the gene was from my dad’s side since our mother tested negative for the gene.
The geneticist recommended a biopsy, and at this point I knew I had to do it. Everything else was working against me at this point. So, on February 14th (Valentine’s Day), I had a biopsy done. It was a horrible experience. They took 20 samples, and I remember looking down and seeing blood dripping onto the floor. After it was done, I called my husband crying, telling him that I never wanted to have to do that again. I stopped for a heart-shaped pizza for Valentine’s Day and tried to forget the horrible procedure. I knew I wouldn’t hear anything about the results until the following week, so I knew I would worry that weekend. I just wanted closure on my journey so I could better support my sister on hers.
The next day, I went about my day as normal. In the early afternoon, I received a phone call. It was from my doctor’s office, and although I knew the results wouldn’t be in, I still picked it up expecting to have to answer some follow-up questions or possibly even a survey from my visit. It was a nurse from Bronson letting me know that my biopsy results were in.
I remember thinking how fast that was and was pretty sure fast results were good. They couldn’t have found anything. The nurse put the doctor on the phone, ‘Hi, Danielle. I wanted to let you know that we got your results back and we did find cancer…’ All of the air was suddenly sucked out of my body, and instinctively I walked down to my boss’ office and closed the door. She knew immediately that it wasn’t good news. I mouthed that they had found cancer. I sat in her office as they outlined the report and next steps. I would have to meet with a surgeon right away. My cancer was less progressed than my sister’s. I was diagnosed with ductal carcinoma in-situ, meaning my cancer was contained to a milk duct and hadn’t yet become invasive. Nonetheless, I had a big decision to make.
I remember calling my sister and saying, ‘Man, you cursed me.’ I told her that they had found cancer too, and I could hear my mom in the background saying, ‘Are you f*cking kidding me?!’ I then made the dreaded rounds of phone calls to my dad, older sister, and mother-in-law. My husband was at work, so I had to text him which I felt horrible about. His response was ‘OMFG.’ I left work shortly after the news. I wouldn’t be seeing him as I had a funeral later that evening that I was attending. I remember coming home later that night. My husband was already in bed, but as soon as he sensed my presence he wrapped his arms around me and I cried.
Reality slapped me in the face a few weeks later. I met with a surgeon who advised me to schedule surgery right away. I had two choices: 1. Lumpectomy or 2: Bilateral Double Mastectomy. My sister had undergone a bilateral double mastectomy in January and I wasn’t sure that’s what I wanted to do. They had removed 17 lymph nodes, 5 of which came back cancerous. I saw the pain she was in. I saw the scars she had. If I opted for a lumpectomy, they would simply remove the cancer and leave everything else in-tact. But, the cancer has a high repeat offender rate, and I wasn’t sure I wanted to have to have follow-ups every 6 months and possibly additional surgeries. I remember having a conversation with my husband. We both came to the conclusion that if I underwent a mastectomy, I could close this chapter. Since my sisters was more progressed, she would have to go through chemo and radiation.
My bilateral mastectomy was scheduled for March, and as the day approached I became more and more anxious. I wanted to close this chapter. During my 5-hour surgery, they removed a lymph node on both sides to ensure my cancer hadn’t spread. Thankfully, it hadn’t, which meant I wouldn’t have to go through chemo or radiation. I remember standing in front of the mirror looking at my chest. I had tubes sticking out in two spots on each side draining the excess blood and tissue. I knew in that moment that I would have a hard time loving the new me. I knew this was something my sister was experiencing as well. Her surgeon had to remove her nipples during surgery because of the progression. My sister was there when I came out of surgery. I was there when she came out of surgery. Our journey was so similar, yet different.
My sister went through months of chemo and radiation. I saw her struggle with the treatments. Her hair started falling out after her first treatment, and eventually she had to shave her head. She lost fingernails and toenails and suffered horrible radiation burns. There were moments she broke down about the weight she had gained or the looks she received from those who had no idea the fight she was fighting. Meanwhile, I battled with understanding why she had to have the difficult path. She had wanted more children, but because of this disease and the treatment required to save her life, her wanting more kids would be just that. A thought. A wish. A past tense feeling. I was done having children. I remember thinking, ‘I wish I could have switched places with her.’
In early November 2019, she will be undergoing a full hysterectomy. She finished chemo and then radiation as of September 2019. She’s sitting in limbo now until that surgery. She’ll have reconstructive surgery next year, whereas I had reconstructive surgery in July. I opened and closed the door on my cancer journey all while my sister is still in her journey. I meet with my oncologist, the same oncologist my sister has, next week to determine how long I wait to do my hysterectomy. With the BCRA2 gene, we are at a higher risk of cervical and ovarian cancer. I’m not ready to go that route yet, but if it keeps me from battling cancer again, I’ll do what my oncologist advises me to do.
My journey was easy in comparison. I often find myself minimizing my battle. I got to keep my long hair and eye lashes. I was able to keep my nipples and with the reconstructive surgery, you’d never know I went through cancer. The scars are minimal underneath my breasts. The scars from the lymph node removal are still dark and very visible. I am very self-conscious about my scars. I don’t openly bring up my cancer battle unless I’m asked or prompted because I see all of the women and men fighting their cancer, some winning, others losing the battle.
My sister often reminds me that my battle matters, and although I know her point is valid, I can’t help but minimize it. My sister’s battle is on-going and will last well into next year. Sure, will I have to undergo another surgery? Yes, but I have a say in when that happens. I’m now 33, and originally my oncologist advised that a full hysterectomy would be a good idea before the age of 40. I have 7 years. My sister was forced into her surgery. Chemo threw her body into menopause at 33.
I will say that it helped me to fight my cancer knowing that my sister had just gone through it. Any questions I had, I knew I could call her because she had gone through the same thing only months prior. The impact cancer has left on us is one of love and strength. We found strength in each other. We found love in our family and community who rallied together to pray for our family and support us in whatever ways they could. So many people within our community took interest in our story and reached out to hear more about it and support us.
Cancer tried to kill us, but we fought it together. Our stories are similar, yet different. We have the same genetic mutation. We had the same surgery. We had the same surgeon and oncologist. The nurses and staff always laughed about not being able to tell us apart in the beginning. We will forever live with scars and phantom pains as the damaged nerves try to come back to life. We will live in fear we could potentially battle ovarian or cervical cancer. We live in fear that our children will test positive with the BCRA2 gene. We pray they never have to go through what we did. Our journey brought us closer. We laugh about it now because we joke that we took the whole twin thing to an entirely new level. We were truly ‘twinning’ it. We are now huge advocates of early detection and mammograms. We’ve shared our story in hopes we can helps others.
I never thought lightening would strike twice, but it did. Our lives are forever changed. We will never be the same. We will never look the same. We will forever battle the little voice inside our head that tries pointing out all of the ways our body failed us. Cancer tried to beat us, but we beat cancer. Together.”
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This story was submitted to Love What Matters by Danielle Jones. You can follow her journey on her blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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