Karen Hanberg and her daughter, Heather Lindsay.
Back in October 2016 a childhood friend of mine, Shelly, passed away at the very young age of 35 from a long battle with Breast Cancer. She left behind a husband and 3 beautiful boys. Before being diagnosed with Breast Cancer she had no idea that she carried the BRCA 1 gene.
Shelly Taylor Cuevas & Melessa Bills Paynter in Washington DC 1997.
This post is dedicated in loving memory of Laura Twilley & Shelly Cuevas.
Words by Heather Lindsay and her mother Karen Hanberg
This week I am turning 34 years old. Between planning my son’s birthday party (we share a birthday!), taking my other son to the orthodontist, and going to the dentist, I need to schedule my breast MRI. Getting a breast MRI is not on your typical to-do list for someone my age.
When I was 14 years old I watched my aunt Laura dying of breast cancer. It was hard. Really hard. She was 35 years old when she died and left behind a husband, a 5 year old, 3 year old and 9 month old. I think the most difficult thing to watch was her children slowly and painfully losing their mother. I remember having to leave my school and church classes that year when suddenly the grief would wash over me like a tidal wave until I felt like I was drowning.
Laura Twilley with her husband.
A few years later, my mom’s cousin Elizabeth was also diagnosed with breast cancer. She tested positive for the BRCA 1 gene mutation. Having BRCA 1 means your risk of developing breast cancer is over 80% as well as increasing your chances of uterine, ovarian and other cancers. Your chances of developing cancer increases as you get older as well. Since the gene is hereditary, my mom was also tested and found positive. At the time, my mom was 41 years old and made a brave and bold decision. She wasn’t going to wait for the cancer that killed her sister. She underwent a prophylactic double mastectomy, hysterectomy and oophorectomy. Having these surgeries lowers your cancer rate to that of the general public. At the time, I was glad she was doing all she could to prevent cancer but as an adult I realize how hard that decision was. I watched her struggle with pain after each surgery and reconstructive procedure. I remember helping her change her chest bandages after the first surgery and seeing how my mom’s womanly figure, her breasts, were gone. There was nothing there, not even the nipples.
My mother, Karen Hanberg, said “When I found out that I had the BRCA 1 gene I said to my self, ‘Get rid of these body parts that might betray me.’ So I did the procedures right away all at once. I had people judge me for wanting to know if I had the BRCA 1 gene. I thought people would be more supportive than that. I would think, well I don’t have a choice. This is what was given to me. Of course I have to get through it. So glad I did it! My father died from cancer who also carried the BRCA 1 gene. A few years later my sister died. I didn’t want to wait and treat it when the cancer happened. My worry now is my four children who have the BRCA 1 gene. They are aware of it and monitoring it.”
As I approached my 18th birthday, the University of Utah and University of Washington offered to test me for free to help them study the family tree of those diagnosed with BRCA 1. At the time, testing was not covered by insurance and was quite expensive. Getting tested was a no-brainer to me. Of course I wanted to know if I had the gene. I had a 50/50 chance of inheriting the gene from my mom. They made me wait until I was 18 to legally be an adult. Then I had to meet with a genetic counselor prior to testing. They asked me questions like, would I feel guilty if I don’t have the gene but my sibling does or will this be a mental burden on you if you’re positive? I remember telling them that if I didn’t find out whether I had the gene or not, I would have to live as if I did, just in case. So, why not find out and either eliminate the worry or live with the knowledge. Knowledge is power. I still remember sitting in the hospital office when the doctor came in and told me I tested positive for BRCA 1. The doctor talked for a few minutes about what it all meant but I didn’t take in anything he was saying. Numbly, my mom and I walked through the parking garage, sat in the car and cried.
Karen & Laura with Adam New Years Eve 1987
Since then, I am part of a new generation that is living with the knowledge of my gene mutation. Living with this means mammograms starting at 25 years old and now I have 3D mammograms and MRI’s once a year, each 6 months apart. The doctors urged me to have children sooner than later and have the same procedures as my mom as soon as possible. I got married young luckily and didn’t feel the need to have children right away. So we waited a few years. After two years of infertility though, I started to panic. Being young, those around me told me I had no need to worry and I had plenty of time. They didn’t understand the time line I was living on. Through God’s grace I have since been blessed with three boys but the BRCA 1 has always been a factor is planning our family. My husband and I don’t feel like we have all the time that most people do to plan their children.
I think turning 30 is a milestone for a lot of people to start feeling time slip by but for me, I couldn’t help but put myself on my aunt’s timeline. The last four years have been a constant reminder of how young we lost Laura and how my time to have the surgeries is getting closer. Every day, I am grateful that I have made it this far being cancer free. Every day, I am sad that I will lose my breasts. Every day, I fear I might be developing cancer.
My husband has always been supportive of the surgeries. He simply doesn’t want to lose me. He is a little more anxious for me to have the procedures than I am. Since he works in the medical field, he has seen women younger than me go through the surgeries and feels the pressure to just get the body parts out before they betray us.
I hope this doesn’t all sound gloom and doom. I am optimistic that I won’t develop cancer or that it will be found in the early stages. My mom was in her 40’s when she had the surgeries and besides a small mole with malignant melanoma, has remained cancer free. My mom’s cousin Elizabeth has survived her breast cancer for 20 years now. This is not a story of a death sentence. This is a story of knowledge and hope. Being prepared is a big theme in my religion. Be prepared spiritually to overcome temptations and trials of faith. Knowing I have the BRCA 1 gene means I can prepare for the possibility of cancer. I also have faith in my Heavenly Father. He is in control, not my genes.
So, what does this mean for those reading this? Well, if you have a family history of cancer, don’t be afraid to look into it. Don’t be scared to get tested. The answers will only help you.
Also, I’d like to share a few common reactions that I have encountered as I share my story with others. It’s really what not to say to someone with BRCA or breast cancer. First, many people say, “I wish I had an excuse for a boob job! You’re lucky!” Can I just say that a breast augmentation is NOT a mastectomy? I know this comes from ignorance. A breast augmentation is a fairly simple procedure of adding implants to already healthy breast. A mastectomy usually removes all breast tissue and nipple. The process of removing the tissue usually damages nerves leaving no feeling or sensation in the chest area. The implants are placed in the pectoral muscles, which can be painful and uncomfortable. Some women choose to have skin removed from their abdomen and tattooed with color to replace the nipple. Mastectomy reconstruction does not feel as natural as a breast augmentation. It also usually takes 3 procedures to fully reconstruct the breasts. So please, don’t tell me I’m lucky to get my boob job.
My mother, Karen Hanberg, commented, “There is not more feeling in your chest anymore. I can’t lay on my stomach anymore. There are a lot of small little repercussions when it comes to having your breasts completely removed. For some reason it bothered me after I wasn’t having children anymore. You never forget the sense of a baby crying and your chest responds. And I missed that. I know it might sound silly, but I really miss that. It’s part of being feminine and part of being a woman. It also really effected my sexuality. I didn’t want my husband to see me for a while or touch me. It was quite an adjustment having all your feminine body parts removed.”
Heather Lindsay with her family. Photo by: Naoma Wilkinson of Naoma StewArt Photography
Second, another statement that I have heard (not often I will admit) is people wonder if I should have had children, knowing I could be passing the gene on. Wow. Isn’t this kind of personal? There are so many diseases or accidents that can happen to our children. My kids have a 50/50 chance of inheriting the mutation. Even if they have the mutation it doesn’t mean they will develop cancer. And even if they did, I think their life is worthwhile. If I die next year, my life was worth living. I’ve had a great life! So no, I do not feel guilty about having children.
Third, people often tell me, “I could never find out if I had a gene mutation! I wouldn’t want to know!” Until you have walked in someone’s shoes you should never say this. Is it hard living with this knowledge? Yeah, it can be heavy at times. But what was my alternative? I’m sure anyone who has gone through cancer or watched a loved one go through it would tell you that they would want to know. They would want anything to help them catch the cancer early if it meant living longer or avoiding it.
One final comment from my mother, Karen Hanberg- “People always say time heals, but I don’t think time heals. I think you become adjusted to the reality. Even looking back at pictures of my sister, it was happy, but then the feelings overwhelmed me and I cried. I still think about her. Father’s day is still a raw time for me because my dad is not here. I’m not trying to depress people, but so many people say, “Don’t worry. You’ll get over it.” You don’t, but you can get adjusted. Also, if you haven’t gone through this or know anyone who has gone through something really painful, don’t be afraid of them because you don’t know what to say. Be a listener. Be more sympathetic than empathetic.”
I remember a few years ago when Angelina Jolie went public that she had BRCA and had a double mastectomy after losing her mom to breast cancer. I recorded all the talk shows that featured her story. It was so exciting to see the publicity BRCA received. But it was also hard to hear people judging her. I heard one host question her mastectomy saying it was a bit drastic, why didn’t she just keep a close eye on her health? Again, it’s a decision that you can’t accurately make until it happens to you. When it comes down to doing it for your family, the answer is easy.