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Pam Kohl, Executive Director of Susan G. Komen North Carolina Triangle to the Coast, has been a public face for the fight against breast cancer through her work. However, as a seven-year survivor of ER positive breast cancer, Kohl was shocked late last year to discover that against most odds her cancer had returned and metastasized. With so much emphasis on early detection, metastatic breast cancer (MBC) is often overlooked. Research continues to be key to helping those with MBC live longer, emphasizing why it’s so important to support this month’s Race for the Cure.
Do you ever hesitate in sharing your story with the public?
Yes! On one hand, I hoped my story would be a great “teachable moment” that would remind people the importance of mammograms and staying on their therapy. On the other hand, I certainly did not want to frighten every person who has had ER positive breast cancer. There seemed to me to be a fine line between providing inspiration or creating fear, and I wasn’t quite sure how to walk that line.
But for me, it came down to two things. As the ED of Komen, it was important to me to be honest. Whether I wanted to or not I felt compelled to tell the truth, to be completely authentic about what was happening. Believe me, I had doubts, especially when I received the diagnosis that I had metastatic breast cancer…that was a very difficult time, and I seriously thought about keeping that quiet to protect my children’s and husband’s feelings and their pain. Once I decided to go public with this story though it was important to me that the whole story be told… hopes and fears.
When you found out that your breast cancer returned against most odds were you angry?
For me it was mostly shock, not anger. My original breast cancer was small; I had no lymph node involvement; it was estrogen positive, and it had an Oncotype of 7, which is extremely low! As I said to my oncologist, “This recurrence was not supposed to happen!!!” Although I had great odds and my prognosis looked extremely good, we did know all along that there was a possibility that my breast cancer would recur. I just never really thought it would happen to me since my odds looked so positive. The good news is that I work at Komen so I know a lot, and that gives me great hope. The hard news is that I work at Komen, and I know a lot and that knowledge is sometimes scary.
I am a realist, I know what is ahead of me, I know what metastatic breast cancer means. I also know that I am a stubborn problem solver, and although I know I cannot cure metastatic breast cancer, I also know that with my family, friends and colleagues, we can find some kind of meaning in this journey. And maybe along the way it will make a difference for others who are dealing with this as well.
I know women who have paved the way…they inspire me every day, and I hope I can do the same for those that come behind me! And to be honest, I want my children to know and understand that even in the face of big challenges you need to find your heart, you can embrace the fear and the strength…you can choose to find out what you need and ask for it! And most importantly, even when you know that ultimately you might not “win,” it is important to be on the journey you want!
Is it harder or easier the second time?
The second time is so much harder. It shakes you to the core in many ways because now suddenly you know in a whole new way that this maybe was not just one small detour…that maybe it has become a road with unknown minefields and that is very scary. You begin to lose trust in your own body. It sometimes feels like it is fighting me, and I wonder what it is I am supposed to be learning from all of this. One thing is for sure, cancer is very, very smart, and it is very personal in that it works differently in different people. It takes a truckload of strategies to find the ones that will work for you.
What advice would you give to those facing a similar diagnosis?
Trust your gut! Advocate for yourself…ask for that extra test if your gut is telling you to. Once some of my pathology reports were a little vague and my case was going to go to the “tumor board,” I asked for a PET scan. A PET scan was not in the “protocol” for my situation but somehow my gut knew I needed it. It wasn’t that I thought I had metastatic breast cancer; believe me, I absolutely did not for a minute think that I had metastatic disease. It was just that I wanted all of the information as we were making treatment decisions, and I wanted the baseline information just in case we were back here again in another five years. Yes, I know a lot about breast cancer because I work at Komen, but it was my gut that wanted that PET scan and it was important to advocate for it.
Do you see the mission of Komen any differently now that your cancer has returned?
In October, Komen announced a new BOLD Goal: to reduce the number of breast cancer deaths in the U.S. by 50 percent by 2026! That is a bold goal, and two ways of accomplishing that are through early detection, which we know saves lives, and through research. Obviously research will help find the magic bullets of a cure, but reducing mortality can also mean, in many cases, making breast cancer a chronic disease instead of a death sentence.
I am now even more keenly aware of the importance of the research. I am on a drug that wasn’t even available two years ago, and that drug is helping to delay progression and, trust me, that matters! I am so very proud of the work Komen is currently doing around metastatic breast cancer (MBC). For many years, breast cancer organizations focused so much on early detection and celebrating survivorship, that metastatic breast cancer was not receiving enough attention. Well, now that so many of us are living longer with MBC, more research can and is being done.
Race for the Cure is this month you have a team running for you this year called Pam’s Parade. Your husband talks about how it’s personal this year. Will you be running?
I will not be running/walking in the Race because I will be working! This is a huge event; close to 10,000 people will gather on May 6th and we will be working to make sure it is a great morning for everyone. My friends and family are amazing. They surround me with light, comfort and unconditional support. They will be there—some will run/walk, some are fundraising, my sister and her Triangle Weaver’s Guild are making pink scarves, and many will be volunteering. Many have done this before, but this year, there is a new urgency, a sense of knowing too well just how important this work is, and I think for all of us in Pam’s Parade, this year’s Race feels like an important safety net, a way for us to share hope and comfort.
What is the best part about race day?
The race/walk itself. It is an amazing experience to watch thousands of men, women, families and friends come together to share their hope, to provide inspiration and to honor those they have lost. It always leaves me a little breathless. Secondly, the Survivor Celebration is a magnificently powerful part of the Race. Hundreds of survivors and forever fighters line up in queues based on their years of survivorship for a procession. Our friends and family are there to cheer us on, to support us and, again, to comfort us. I will see women who have just started their treatment, and I will see women who are 40-year survivors. Watching the face of that newly diagnosed woman as she watches that 40-year survivor is worth everything! ν
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