Aloha,
It was pleasure being able to give you a sneak peak into my story about breast cancer during the Facebook Live Event last month. As promised in my previous blog, this is part two which I am excited to share testimonials of two significant women in my life. Let me share a little background with you.
I was diagnosed at age 30 with stage 3 breast cancer. My mother passed at age 42 of stage 4 breast cancer. Many of my siblings and cousins - at young ages - have had to discuss with spouses this same topic of selective mastectomy, to lower their chances for breast cancer. These women are making life altering decisions with their body at the young age of 18 all the way to 37. Breast cancer has become an inescapable reality in my family. With my diagnoses being the first in my generation, I think it shocked my entire family to wake up to the real possibilities of it happening to more.
I had the opportunity to interview two amazingly strong women in my life that are tremendous examples to me. These two women have never been diagnosed with breast cancer but chose to have preventive (prophylactic) mastectomies. They made the choice to be proactive in decreasing their risks of getting breast cancer while increasing the longevity of their life. They decided to take control of their health and life. As I share their touching story of their thoughts and experience of why they chose this path, I will also share some of my experience of what happens when you are diagnosed and have treatment to go through, as is the goal to be the path to never have to walk down.
Meet my sister Jena, she has been my sister since she was 2 and I was 5. But technically, and to help with any confusion, she is my step-sister with no blood relation. Her mother passed away from breast cancer at the age of 46. She passed away 1 year and 1 month after my mother (Jena’s stepmother). I can’t imagine losing two mother figures 1 year apart at the age of 19. Jena’s mother was positive for the BRCA gene. After thinking about it she decided after having her second child she wanted to know if she carried the BRCA gene or not. She was ready to know what her life would hold, and at the age of 27 her results came back positive and her immediate response to her doctor was “when is the surgery?”. I love how strong my little sister was in her decision making and her strength helped me with my own decision of treatments when I was diagnosed around 6 months after she went through her first surgery. My response to my surgeon was “I want a bilateral mastectomy”, she was thrilled she didn’t need to talk me into such an radical surgery as lumpectomies still have a risk of cancer coming back.
My young sister opting for this surgery as a young mother of a 3 ½ and 1 year old at home had a different experience and perspective of her surgery process. And I hope those of you that may have children at home can relate to her story. With Jena’s experience of losing her own mother at a young age and then testing positive at a young age she told me there was no decision to make, she wanted to see her children grow and be a grandmother, it was just about setting the date for her surgery.
Jena went on to tell me how she didn’t know what she was in for with her surgeries, but no one really can. She said it was “a lot better than expected”. The hardest part was not driving and not being able to pick up her 1 year old son. For her fat grafting she didn’t have enough stomach fat (I offered to donate some of mine!) and had to have lipo in her thighs which was extremely painful during the recovery process, it took 2 months to recover. She also had to go through physical therapy, which is something else I did not have to experience. She informed me she was scared to push herself in recovery and got stiff and needed to improve her range of motion. I’m the opposite and probably push myself too hard too quickly.
Jena’s advice for those that test positive for the BRCA gene is “the sooner you have it (mastectomy) the easier it is… especially before you get older and get cancer.” She goes on to say, “you will have peace of mind, if you get cancer you will have to have the surgery anyways and you get a new set of boobs! It is an easier road to get through than all the cancer treatments and the surgery.”
I asked about her kids and the counsel she will give them since they have the possibility of caring the BRCA gene. She said she has always been an advocate to each their own, everyone reacts differently. All she can do is share her story of how she felt in control of her own body and decisions rather than having to get tested every 6 months. She doesn’t feel like a ticking time bomb, “once you know you can’t unknow … you can come for me and can’t have me”. What a powerful outlook on making the decision to control her own fate as much as she canNext I was able to visit with my aunt, she has been my rock through my entire treatment. We come from a strong background of women who have fought and lost the battle of cancer. My mother, aunt, and great-aunt. So far I am the only survivor. Once I was diagnosed, it became a wake up call to the women in my family. The next generation has now been affected, it didn’t end with my mom and aunt, it showed any of us could be at risk. Fortunately with my family none of us test positive for the BRCA gene. However, COMT seems to be a common factor in our family genetics. This makes it a little more scary as to who could possibly be diagnosed next, as we have no basis to go off on.
My aunt didn’t want to be a walking bomb, she didn’t want breast cancer to control her life. However, she was 49 when she had a breast infection and after seeing three different specialist they all encouraged her to start the process for a mastectomy. She also said she didn’t want me to go through this alone… meaning my treatment and surgeries. I never knew this was one reason she chose to have her mastectomy so quickly. As I am typing this I have tears in my eyes with how much that meant to me. At the time I was living in a different state completely alone, I finished up my treatments and quickly moved to be close to my family. My aunt and I went to the same plastic surgeon for our reconstructive surgery and we both finished our reconstructive surgeries this year. During her mastectomy surgery there was a mass found that did come back benign, this confirmed even more that this was the right decision for her.
I asked about her surgery process, she in turn said the unknown is always frightening… wondering at her age how she would do under anesthesia. But she was desperate to have it done and wasn’t concerned with how she looked. The hardest part was waiting for her infection to clear to be able to start the surgery process, a process that would take multiple surgeries. She mentioned how pleased she was and was so blessed to have minimal suffering. She said the tubes were annoying, and awkward and truly hated them but are critical for draining.
She also mentions she would do it in a heartbeat all over again and is so thankful. Her husband said “how shockingly less fatalistic she was” I can't imagine having that mindset of what could cause fear all the time, to be in the clear and less fatalistic for your family to have comfort that it most likely won’t be cancer that will take you down. My aunt said she was living a life of “when, not if” and she no longer is living her life that way.
Her advice to women that are in a similar situation, “What are you waiting for? Live your life with no regrets, why not when you are a target”. She has said to me on multiple occasions how it was a perk for her to have a breast reduction, she is enjoying her results and they look better than ever. She is also thoroughly enjoying not wearing a bra.
I was told in this interview that I was an inspiration to her for my bravery through my treatment and surgery and it has tremendously impacted her and her daughters. I do know the majority of her daughters, after my diagnoses, are planning to have selective mastectomy surgery because of how real this diagnoses has become within our family. And with us paving the way for other women in our family to follow suit, I hope to see more of all the amazingly strong women in my family live past their 50’s. To take control of their lives and health, just as I wish the same for all of you. Whatever your decision may be, the impact you will make can pave the way for others, your family, loved ones and even strangers. Be the example you wish them to have, just as these two women have done for their families.
Keep smiling,
Melissa