This post is part of Listen to HER2, a program hosted by Living Beyond Breast Cancer that highlights personal stories from people affected by HER2-positive breast cancer. Visit lbbc.org/ListentoHER2 for more stories about life with HER2-positive breast cancer.
Living Beyond Breast Cancer is a national nonprofit that provides educational resources and emotional support to people who have been impacted by breast cancer. Its goal is to provide information, community and support that you can trust, is easy for you to access and respectful of you and your situation. For more information, visit LBBC.ORG.
By: Lianne Zhang – thepinkribboneffect.com
Cancer changes you. I think it’s safe to say that no one’s battled cancer and didn’t come out of it a completely different, probably better version of themselves. I’ve partnered up with Living Beyond Breast Cancer on this Listen to Her2 project because I want to channel the disruption that cancer caused me into something positive. I’ll do that here in three parts. First, I want to initiate change to the young cancer survivor landscape by making the act of sharing and talking about cancer less taboo. Secondly, I will try and educate you on what Her2 is (nerd alert). Lastly, I’ll pass along some insight I picked up through this crazy cancer chapter. Stick with me, hopefully you’ll find this post helpful and with any luck, even a little inspiring. We have to have hope, but as the saying goes, hope alone is not a strategy.
Part 1- Initiate: If you want a no-fail way to awkwardly silence a room, just tell them you have/had cancer. But why is that the status quo? It shouldn’t be. I’m normally a pretty private person. I didn’t grow up with social media nor did I find sharing every ounce of my feelings/life with a wide net of folks mildly satisfying. Sure, I like posting photos of fun trips/experiences and the occasional random cat video (just kidding on the last one, I don’t like cats) however – it always made me a little uncomfortable to reveal deeply on social. Then I was diagnosed with breast cancer at 32 years young. I was devastated for obvious reasons but I quickly learned what a truly special club I was forcefully inducted into. I also learned how crappy the resources for young cancer fighters are. They are outdated, unreliable and seemed to cause more stress than relief. I found myself drowning in medical jargon and useless forums. I wanted to commiserate with fellow young women who were also in the prime of their lives, robbed of some of the best years of our youth. For me, the answer was the Instagram community. It was filled with women all over the world, who were also fighting for their lives instead of worrying about whatever things young people worry about. And women that had to grow up overnight, women grasping at straws to feel a little less alone. Social is a powerful thing and I never understood it until then. It opened up a world of answers and connections. It allowed me to connect with but most importantly, contribute to changing the way people view cancer (and those who survive it.) Both online and offline. The more I shared the more I found that people felt connected to me. Fighters, survivors, friends and colleagues asked questions. I answered. I openly told people I was fighting breast cancer and diverted the awkward moments. Some wanted to be bystanders as I took my position on that battlefield. I know that for every uncomfortable or insecure moment I endure by sharing my own cancer experience, there may be one more (young) fighter out there who feels less alone. That thought drives me to keep sharing. It’s time to initiate change. The word cancer is no longer synonymous with death and it’s time the world knows that.
Part 2 – Educate : For those of you that have followed my blog and instagram for some time (thank you!) you probably read when I initially shared being diagnosed with triple positive breast cancer. It’s been 9 months exactly since I heard the awful words that changed my life forever. In those 9 months I’ve been to hell and back and I can attest that what doesn’t kill you (literally) only serves to make you that much stronger.
As a refresher, I was diagnosed with Stage 2A ER/PR/Her2 positive breast cancer. I’m ER/PR positive, meaning my cancer was caused in part by excessive estrogen hormones. In addition, I’m also Her2 positive. This means the Her2 protein receptors (found on all breast cells) in my case aren’t working properly. Where normally Her2 protein act as the white knight, controlling healthy breast cells going about their business, in about 20-25% of breast cancers, the Her2 gene has gone rogue and made too many copies of itself. This over expression contributes to or speeds up cancer growth, making it more aggressive and more likely to come back. Having a Her2 type of cancer is considered higher risk but the good news is in the last decade or so, game changing drugs have come out. Herceptin and Perjeta (and even new player Puma’s Neratinib) have really leveled the playing field as evidenced by studies like Cleopatra and Aphinity. Studies also show that a year’s worth of Herceptin is most effective versus 2 years or 6 months so I will be finishing out this year with continued treatment of Herceptin and Perjeta. My doctor is keeping me on Perjeta even though the long-awaited Aphinity results didn’t show too much benefit for both in a post-surgery (adjuvant) setting but I’ll take every small percentage of uptick that I can to better my odds. In addition, Neratinib has just been cleared by the FDA and I am curious to see how it will gain market share as it’s been proven to be helpful for hormone receptor positive warriors in particular. Hearing you have Her2 is scary but we have to have hope. And as I mentioned earlier, hope alone is not a strategy, so we also have to combat. We can do this by arming ourselves with as much information as possible. When dealing with something like this, knowledge is power. I spent a lot of time reading articles, talking with my medical team, understanding case studies, stats and what the best Her2 medications out there were and what was coming up the pipeline. It’s not our choice to get this disease but we do have choices in how we want to battle it. I’ve included some Her2 articles I found most helpful for me **** at the end of this post. I hope you find them helpful too.
Part 3 – Insight: Fighting cancer has been the hardest thing I have ever had to do. It’s taken everything out of me physically and mentally. In the last 9 months I have gone through 4 intense months of chemotherapy, two surgeries, finished 4 weeks of radiation, and continue to endure targeted therapy every 3 weeks (Herceptin + Perjeta). While I am excited and hopeful in reaching my goal of NED (no evidence of disease), there is a little part of me that is scared for once the Her2 treatment ends. With no more active treatment, what will stop the bad cells?
This is when I say a prayer and I actively stop myself from thinking those thoughts. I realize that despite it all, I am so lucky. I still have hope to hold onto, a body that is still capable of fighting back and the love of so many incredible people to get me through. The difference between someone surviving and not is learning to not live in fear. When people get diagnosed with disease, we all react similarly. We grieve, then accept it and move on. I recently heard of a friend from college who was diagnosed with sudden hearing loss. He just suddenly lost his hearing in his right ear for no reason at all. We’ve kept in sporadic contact through the years and upon hearing the news I reached out. We had spoken fairly recently when he found out about my illness. I felt an instant role reversal and a little at loss for words. I can’t imagine what I would do in that situation. We both said to each other. It could be worse. We reiterated to each other. I am constantly in horror of how non-discriminating disease can be. It shows up, always uninvited and robs so many people of so many things. However, for any survivor of anything we have to remember that it always could be worse. “Positivity is the best solution/resolution to it all for we only can do what we can do to the best of our abilities. We can’t prevent or change what’s happened to us, only learn and grow from it.” Very well said, my friend. We can choose to rise from the ashes or become the ashes and for me – I’ll always choose to rise. There is something so beautiful about feeling lucky in the face of tragedy and being able to have this new appreciation for life that others don’t or won’t ever have.
Cancer is a disease that can potentially come back at any time. Some days, that thought alone has me numb with fear. Other days, it makes me feel so bad ass because I know if I can get through this, I can literally get through anything. When we’re forced in a situation that wasn’t our choice, we have to do everything we can to control what we can control. This ranges from mentality to lifestyle changes. There were so many disappointments, tears, and fearful moments this past year. However, I never stopped having hope that I’d get through the darkness and see sunlight again so I kept going. Sure, every time I see someone’s relapsed or passed away, it stops my heart for a second. I let my heart skip a beat and then thank the stars that it beats again. Reality is, no one can escape death. No one. Before getting cancer I never spent my time being fearful of being hit by a bus or getting a random illness and I don’t see the point in doing that even now. We have to have hope.
I hope for a world where we can take a pill and our cancer would be gone. Where we get a shot and the disease will go away. I hope for a world where we don’t have to stop our lives to withstand treatments that make us sicker before we get better. I hope for a world without drugs stripping us of our beauty and leaving us with just a withering shell of our former selves. Maybe in our lifetime we’ll be able to see chemotherapy and radiation retired by targeted and effective drugs- and a world where medicine actually cures. We have to have hope.
My entire life changed on November 9, 2016. But upon hearing the worst news, I’ve also found a new purpose in life. Since that awful day, I’ve learned to appreciate the most basic, beautiful things out of life. I’ve learned to stop spending time with people who don’t care about me. To invest more time in the ones that do. I’ve learned to live boldly, stress less, value health the most and to love with every fiber of my being. No one knows what tomorrow may bring. No one. You can have all the money in the world but it won’t buy you the knowledge of what will happen tomorrow. We can’t live in fear nor should we. Despite Her2 cancer, or any disease you may be fighting – we all have to have hope that this was all a fluke, that we’ll beat the statistics, that we’ll prevail. We have to have hope that we’re put on this earth for a reason bigger than ourselves and that our only responsibility is to live each day to the fullest. With no regrets. So get answers, even if it’s a no. Reach for the stars, even if we fall. We’ll always have the satisfaction of knowing that at least we tried. We hoped.
Hope alone is not a strategy but hope with a will to live is what makes one a true survivor. For more of my journey, follow me (Lianne) on instagram.
**** Follow up from Part 2. Some really helpful Her2 resources: