Ask the Expert - Kelly Kashmer

Q&A with Kelly Kashmer, Nothing Pink, Founder and CEO

In 2023, I joined other survivors, previvors and caregivers at the Young Survivor Coalition’s Annual Summit in Charlotte North Carolina. There were various sessions to attend, one of them  was on genetics. After finding out I was positive for the BrCa gene shortly after my breast cancer diagnosis, I became intrigued with genetics and learning more. I did my homework finding out facts about being BrCa positive as well as what other genes could cause cancer. It was important for me to educate myself about the impact of genetic predispositions. I chose to sit in on this session to educate myself more. 

The session was led by Kelly Kashmer, founder and CEO of Nothing Pink. Nothing Pink’s mission is to create awareness of hereditary breast and ovarian cancer and provide personalized support to individuals at high risk. Kelly and genetic counselor ( FILL IN) spoke to the audience about information that should be provided to us all and I’m thrilled to take action and pass along this very important knowledge to those who are interested in learning more!

Thank you Kelly for taking the time to be a part of this month’s Q&A. I know it’s going to be a busy month for you all with National Hereditary Cancer Week being September 29 - Oct 5, 2024.

You share that you received a positive cancer diagnosis only two weeks after a BRCA2 positive result. What led you to receive testing?

I was actually at a routine doctors appointment and it was the first time my doctor really went through my family history of cancer. I realized after telling her that I did in fact have a few people on both sides of my family with breast and ovarian cancer. She really encouraged me that day to have genetic testing to rule out any additional risk of developing cancer.

After you received the results did you connect with a genetic counselor? If you don’t mind sharing, what did they uncover?

So, my story is a little unconventional in that my doctor tested me rather than seeking genetic counseling prior. I always recommend making an appointment with a genetic counselor as they are the most knowledgable in the field. Because I had the test performed prior, my doctor was the one who called me with the results. I was BRCA2+. She then informed me I needed to speak with a genetic counselor.

For those who aren’t familiar, who are genetic counselors, what do genetic counselors do and how can genetic counselors help someone understand results form the genetic testing?

I think they are my most favorite people in the world. They truly are saving lives and helping people reduce their risk of developing cancer. Genetic Counselors are available in person at most medical institutions or virtually. They are the experts. They will talk with you thoroughly about your family history and determine if and when testing is necessary. They provide options for you based on a positive or negative result which is so important prior to testing. We always say, you can’t unknow what you know. So having the direction of what you would do after a test result is so empowering going in. Once the results come in, they will again meet with you to review in detail. There are multiple options that you can choose based on the results and they will walk through these details. 

How did Nothing Pink get started? Tell us a little about you and your story.

In September 2013, my doctor called to tell me I had tested positive for the BRCA2 gene mutation—a test I took at her urging due to my family history. That’s all I heard during the 30-minute call, as my kids played in the background. BRCA what? I barely remembered agreeing to the test, and all I could think about was whether my insurance covered it, especially with my husband’s company being bought out. My health wasn’t top of mind—I had even tossed the BRCA pamphlet from my doctor just two weeks earlier.

At 31, I didn’t think a genetic test, which reveals a high risk of breast and ovarian cancer, was something I’d need to worry about until I was much older. My youngest was just a year old, and despite my doctor mentioning Angelina Jolie, it didn’t resonate. A few days later, I met with a genetic counselor who explained that I had an 80% chance of developing breast cancer and a 40% chance of ovarian cancer. As she reviewed my family history, I wondered why it took until now for this to be discussed.

I was given two options: regular monitoring with mammograms and blood work every six months or preventive surgeries to remove my breasts and ovaries. Even with two young children, I wasn’t ready to make such drastic decisions—I wasn’t even sure if our family was complete. 

Choosing regular monitoring was a decision that didn’t last long. I’ll never forget sitting in that dark, mahogany room with my husband, waiting for the doctor. When he walked in with a stack of papers marked with red letters, I knew what was coming. In October, during Breast Cancer Awareness Month, I was diagnosed with Stage II Triple Negative Breast Cancer—a rare, aggressive type that feeds itself and is the least studied. My treatment would follow the protocol for more common breast cancers because that’s all that was known.

I grabbed my husband’s hand and prayed, drawing strength from my faith. I knew it would be hard, but I believed God would use this for His glory. But I’m not going to lie—there were moments during chemotherapy when I didn’t feel strong or peaceful. We have a forgiving God, one with more grace and power than I can comprehend.

In those ten months of treatment, I lost everything I knew—my hair, my breasts, my identity. People stared at me. My kids went with other moms while I lay in bed, feeling like my body would fall apart at any moment. I rarely cried, but when I did, I hid in my closet, afraid that if my husband saw, I wouldn’t be able to stop. I battled fevers, allergic reactions, infections, and underwent 11 surgeries in 12 months. I was stripped of everything.

My neighbors, friends, and family wanted to help, but I did a great job of pushing them away or pretending things weren’t that bad. Normally, I’m a positive, upbeat person, but this illness took away everything that made me, me. That’s why I say, “There’s nothing pink about breast cancer.”

I admire women who put on the ribbon and run 40 miles. I wish I could have done that, but it’s just not me. Until you’re in this situation, it’s hard to know how you’d react. I had so much uncertainty—I’d try to get up, but the pain from chemotherapy would send me crawling back to bed. Life went on for my family, but mine was at a standstill.

I still argue with my husband that this was harder for him. He had to make lunches, bathe kids, change diapers, do laundry, and more, while I just sat in a chair for 8-hour infusions. My immune system was so compromised that I was frequently hospitalized with infections. My life was changed by breast cancer, and though I fought it, it changed me forever. It took time to realize that, but it did.

My goal now is to help women avoid experiencing the ugly, “not so pink” world of breast cancer. It’s to educate them about proactive healthcare and being their own best advocates. 

NothingPink was created to increase awareness of hereditary breast and ovarian cancer, provide personalized support, educate women about genetic testing and proactive healthcare, and offer financial assistance for those who can’t afford it. This isn’t just about “breast cancer awareness”—it’s about taking care of ourselves so we can be here for graduations, proms, and preschool. It’s about women coming together as sisters to fight for one another. We need to make this a priority and start the conversation.

There are amazing resources out there—genetic counselors, oncologists, and cancer clinic specialists who support our mission. We have the technology to identify what could one day harm us, and the nutritional plans to protect ourselves. The weapons are there; we just need to arm ourselves.

What’s one of the most surprising facts that you have learned over the past 8 years since starting Nothing Pink and learning what researchers are finding? I saw a study on the site about skin cancer and this finding caught my attention especially after learning the impact of having a genetic predisposition. “When researchers looked at previous cancers among participants, the lifetime risk of any skin cancer increased after a breast cancer diagnosis only among BRCA1 mutation carriers.”

A surprising fact would be that I’m still baffled that this is not something that every person is aware of or that it’s available. Genetics is the key to change the cancer landscape. This is just the beginning. I think that is what is so exciting. My diagnosis was 10 years ago and what researchers have found on genetics has evolved immensely! I personally believe that genetics is the key and we are just starting to scratch the surface of what will come of it.

What are screening options? Is it just a blood test? I came across the risk quiz on the site - which I’ve provided links for here. How can this determine if you should pursue testing or speaking to a genetic counselor?

https://www.nothingpink.org/basserriskquiz

There are many screening options which is why it’s vital to seek genetic counseling first. They will determine the most appropriate test based on the need and your insurance coverage. I caution against using any over the counter test. To give you and example, I have tested with 2 very reputable labs and tested positive for the BRCA2 mutation. I then tested with 23&Me, which can be found on the end cap at Target, and tested negative. The over the counter tests are not comprehensive and can lead to false results.

Men can have breast cancer too! I read “ it should be understood that men who carry BRCA mutations have an increased risk for developing cancers associated with the mutation and can pass this mutation onto their children.”  When should they seek out testing and preventative measures?

Yes, men absolutely can get breast cancer. Under the BRCA mutation umbrella specifcally, it is breast, ovarian (not aplicable), prostate, melanoma and pancreatic cancer. If there is a history of cancer in the family, I would seek genetic counseling so it can be determined the appropriate age for testing. And if testing is not recommended at age 18, then they can get into a screening program to ensure they are keeping a close watch on the patient. I want to also mention that God made us from two people and the mutation can be passed by your Mom or your Dad. We commonly think of breast cancer and assume maternal. However, this mutation was actually passed down to me by my Father.

Speaking of men, I was reading a study that spoke of a 39-year-old African American woman who had been recently diagnosed with invasive ductal carcinoma, triple negative. The patient recounted that she had three aunts, two of whom had breast cancer in their 40s, and a third who had died of the disease at age 28. All three aunts had lost daughters to breast cancer while they were in their 20s and 30s. One of the patient's cousins — one of the daughters of the third aunt — didn't have cancer but had gotten genetic testing that revealed a pathogenic variant in the BRCA1 gene, known to increase the risk of breast, ovarian, and other cancers. The patient told the genetic counselor that she asked the Ob/Gyn about genetic testing in the past, but the doctor had said she did not need testing as the BRCA1 variant was on her father’s side of the family. Can you talk a little bit about genes being passed down through the gene line and mutations?

This is heartbreaking to me as testing and screening may not have been able to 100% prevent these scenarios, but it would have led to screening and discussions that needed to be had with the family. The routine appointment I referenced in the beginning was actually with my Ob/gyn. I was fortunate that she was educated enough to inform me of the test. But this is exactly why it’s so important to seek out a genetic counselor. They are the experts. Think of all the things and Ob/gyn or a primary care doctor has to discuss in a standard appointment. I’m sure genetics, even though it should be, is not on the top of mind. There is so much power in patient advocacy. Ask the questions, get the conversation started, get second opinions and demand answers or guidance. 

I mentioned before that this gene mutation was passed down from my fathers side of the family. To give you reference. My Mom is 1 out of 10 ( girls) had breast cancer. My Dad is 1 out of 6 (2 girls) two women on my Dad’s side had ovarian cancer. Ovarian cancer is much more rare than breast cancer so my genetic counselor was pretty certain it had come from my Dad’s side. My Dad, mom and sister all tested and my Dad came back positive. It can be a lot which is why I push for counseling first.

Let’s talk about genes in black, white and Jewish. Are there diseases and genetic predispositions that impact certain groups such as these more than others?

Ashkenazi Jewish people have a predisposition to a genetic cancer mutation. It’s recommended that anyone who is Ashkenzi Jewish to be tested. The cancer mortality rate in black women is much higher and needs to be addressed through appropriate screening and patient advocacy.

Is there anything that you feel is important for those with family history cancer to understand and be aware of?

Be your own best advocate. This is so vital to making sure you are taking the best posible steps for your health and future. I was 31 when I received my cancer diagnosis, 9 years away from my first recommended mammogram. If you have a history of cancer, make sure you are pushing for screening. It can be life saving.