My mother’s surgeon encouraged my mom to do genetic testing to see if she was a positive carrier of the BRCA1 or BRCA2 (BReast Cancer) gene.
My mom decided it was important to do the genetic testing. Her surgeon talked to my two sisters and me about what the genetic testing meant to us and the tough decisions we may be faced with if the results came back positive.
We waited for what seemed to be an eternity for our mom’s results to come back as she went through the process of multiple lumpectomies and radiation treatments. The test revealed she was positive for the BRCA 1 gene. I was scared, frightened, selfish, and upset…now I had to make the decision if I wanted to know if I had the gene or not.
What would you do if you knew you were going to get cancer?
Would you wait for it to happen or would you do something about it?
I have two children at home. At the time, they were 5 and 2.
What was I going to do if this test was positive?
Did I really want to take it and face reality?
I was only 27 years old.
I prayed about it and knew in my heart, I had to be proactive to live my life for my boys, Colton and Carter.
I went to my OBGYN in June 2015. I was the first of my sisters to take the test. The doctor prepared me for the best and the worst that could come from this genetic test. Shortly after I did my test, both my older sister and my younger sister took the test.
We talked together about what we would do if one of us was positive and the others were negative and how we could support each other. We waited and waited for phone calls. I finally got a phone call at the beginning of July. My doctor asked me to go into the office to talk about the results. She didn’t want to give me information over the phone.
My heart sank. I instantly knew something was wrong, otherwise she would have told me my results were normal, right?
I made an appointment and my doctor told me that I tested positive for the BRCA 1 gene, just like my mom. She referred me to a breast surgeon at Mercy Katzmann Breast Center and a plastic surgeon at Mercy Plastic Surgery to hear my options.
I could sit back and wait for cancer to show up and be monitored every year with mammograms and pelvic ultrasounds, or I could be proactive and do something about it.
I waited to hear from my sisters about their results.
I first heard that my older sister was negative. To be honest, I was upset and jealous. Why was she the lucky one who didn’t have to make these decisions like I had to?
Then my younger sister got her result. She was positive. Feeling selfish again, I was relieved I didn’t have to go through this alone.
Before meeting with my surgeons, I got my first mammogram. I was the only young woman in the waiting room before and after the procedure.
The blood test showed I was positive for the gene, but did I have cancer currently? That would make a complete difference in the urgency of the action of treatment.
Next, I had to do a breast MRI. I had such anxiety from the positioning of the machine that I couldn’t finish the process and said I would just take the results from my mammogram and trust one exam over the other.
Finally, I had a pelvic ultrasound to check my ovaries, since the gene has a high risk of ovarian cancer as well. After meeting with my plastic surgeons, finding out my mammogram and ultrasound results were negative, and hearing it was going to take a full year and four surgeries, I agreed I was ready to be proactive and get through this part in my life with the love and strength of my mom, my little sister, and of course my family and friends.
My surgeons said at this point, it was more important to remove my breasts before my ovaries, but my ovaries will continue to be a threat. Currently today, I am having growth on my ovaries which is non-cancerous, but causing intense abdominal pain, and I have had frequent ultrasounds to monitor growth of cysts. A hysterectomy will be in the foreseeable future as I will have to make the decision to be done having children soon so the surgery can be performed. My surgeons prefer I do this before the age of 35.
I had my double mastectomy in October 2015. The surgeons completely removed both of my breasts and the tissue. They also put in hard plastic expanders that would eventually help stretch my chest muscles and skin to essentially form new breasts so it would be easier to put in soft implants. But that wouldn’t happen until months later.
After surgery, I had tubes on each side of my chest with drains attached. The drains itched and burned and were so uncomfortable. I learned how to squeeze the excess blood and fluid through the tubing to the drain and empty them multiple times daily.
I couldn’t lift my arms to feed myself, dress, or bathe myself. My chest was bound tightly, and I needed pillows surrounding me for comfort.
I went to the doctor for weekly saline injections. The tissue expanders were hard plastic and very uncomfortable. They shifted with every movement, and I could never get in a comfortable position to sleep, even while laying on my side hugging a pillow. Every week when I went to see my surgeon, he would stick a 3 inch needle into the expander and insert saline into the expander until they stretched my skin to the right amount to have my second surgery.
It took me 16 weeks….16 injections on each side. After looking like a bruised pin cushion, I waited an additional 3 months in-between getting the saline injections and my second surgery to make sure my skin, muscles, incisions, and tissues were healed before the reconstruction phase began.
In April 2016 the scars that ran completely across my chest from my double mastectomy were healed. Now it was time for reconstruction and to open the scars back up. It was such an emotional time as I was just started to get used to the way I looked without breasts.
Knowing I was starting over was really scary. Knowing I was going to have even more scar tissue was even scarier.
During the reconstruction surgery, my surgeon removed the full saline injection tissue expanders and put in the soft implants that will forever stay in my body.
Thankfully there were no drains this time, and I had a much better range of motion! I began having terrible, sharp chest pains once I was taken to my hospital room. I didn’t know there would be such forceful chest pains after this part of the phase. I assumed it would be earlier in the process when the breast tissue was removed completely. There was a time I felt an intense shortness of breath and tingling in my arm and the rapid response team was called.
The team did an EKG, x-rays, and additional tests in my room and told me the pain I was having was “post-mastectomy pain syndrome”, where very sharp, random pains that occur after having a mastectomy. I still experience these pains today as do my mom and sister.
With pain medication I was able to rest and I was thrilled after two nights in the hospital that I was able to go home…I had done all the hard work.
I was a previvor!
Throughout this whole process, I was finishing up my Master’s Degree, and proudly walked across the stage at the University of Iowa in May 2016 with a degree in Educational Policy and Leadership Studies. I was determined and nothing was going to hold me back! There are too many good things in life that I don’t want to miss out on.
I had two more procedures. I had new breasts, but no nipples as mine had been removed with my breast tissue, so it was time for my nipple reconstruction surgery. This was optional, but because I had come this far in the process, I thought it would be silly to not complete what I had started. The surgeon took extra skin from my breasts from my previous surgery and made new nipples for me. I was thrilled that we were now 75% done. I was starting to gain some confidence back, and I was starting to look like a female again!
In October 2016 it had been a year since my double mastectomy. It was time for the finishing touches, areola reconstruction. Again, this was optional, but it was the final cosmetic touch to complete the whole mastectomy and reconstruction process. My surgeon covered some of the scarring and although I still have several scars, I am thrilled that he helped me look like “myself” again.
In December of 2016, I was blessed to receive a Christmas Wish from STAR 102.5 in Des Moines to honor and thank my mom and sister for being at my side throughout my journey while they were facing their own. Although my older sister was blessed to be a negative carrier, she has also been impacted by the BRCA stress, testing, and burden. I was so appreciative of the generous donation of a weekend relaxing with my mom and sisters, away from the hospital. It was even more of an honor that STAR 102.5 made a $1,000 donation the Mercy Katzmann Breast Center in our family’s honor.
I cannot stress enough to be proactive and an advocate for your own health.
Ladies, have you had your annual mammograms? Not old enough to start doing your annual mammograms? You should always do monthly self-exams and pay attention to your body!
If breast cancer runs in your family, talk to your doctor about BRCA testing. It can be scary to be given the opportunity to take the test because then what IF your tests results are positive? What next steps do you do?
Men, have you made sure the ladies you love take care of themselves and are regular in their exams?
Knowing I am healthy makes me extremely relieved that my high risk of breast cancer is gone. At the same time, although my scars – both physical and emotional – fade a little bit each day, I’m not sure they’ll ever disappear completely. This shows I beat something that could have killed me and I am stronger.
Take time to acknowledge the families, including mine, whose members are high at risk for hereditary cancer, those who fought and won like my mom, and remember the unique struggles, challenges, and triumphs we face every day. After all those hurts, scars, and bruises, we made it through!
I’m beyond thankful for the test that saved my life and my sister’s. We fought hard. We fought back. We fought and We WON!
We are previvors, and my mom is a survivor!
Jenn Callahan is the Manager of Childbirth Education and Doula Services at Mercy Medical Center in Des Moines and has worked there for two years. She has a Master’s in Educational Policy and Leadership Studies from the University of Iowa and a Bachelor’s in Family and Consumer Sciences and Health Education from Iowa State University. She spent six years teaching Family and Consumer Sciences prior to coming to Mercy Medical Center. Jenn is an ICEA (International Childbirth Education Association) Certified Professional Childbirth Educator and an ICEA Certified Professional Birth Doula. She is also a Maternal/Child Health Specialist and was selected to serve on the Count the Kicks Medical Advisory Board. She is the mother of two boys, Colton, age 7, and Carter, age 4, and lives with her husband Paul in Grimes.