If you are looking for the real deal on cancer resources, CancerHAWK, run by Robyn Stoller, is the place to go. Robyn was inspired to start CancerHAWK after her husband lost his battle with sarcoma in 2010. She has worked tirelessly to bring a wealth of knowledge to many people who find themselves seeking information about cancer for themselves or a loved one.
Robyn, you are respected, smart and strong and we thank you for being such an amazing resource for people around the world. And, we also thank you for taking the time to do this interview with us today.
Eric D. Davis Sarcoma Foundation (EDDF): What have been some of your most fulfilling moments as the leader of CancerHAWK?
Robyn Stoller (RS): The emails and letters I’ve received from families battling cancer touch my heart in a way that is so special and meaningful. Knowing that I have helped them connect with an organization or another person or information that can help them as they navigate their way through this diagnosis is such a great feeling.
EDDF: Where do you get ideas for your CancerHAWK articles? What are some of your favorites?
RS: I do a lot of research on all things cancer related. Lately, my best source of information has come from Twitter. In fact, that’s where I first heard about EDD Foundation and the amazing work you are doing to help people touched by sarcoma. I only write about resources or information that resonate with me. I have gotten some incredible feedback on “Do You Know a Dr. Schmuck?” and “6 Things I Wish I’d Known About Cancer”.
EDDF: You call CancerHAWK your lemonade (as in when life hands you lemons…). For people who have lost a loved one to cancer, do you have any ideas of how they could “make lemonade?”
RS: I know people who have become advocates or activists because of their experiences, while others might choose to start a foundation in memory of their loved one. I think the best thing to do though is take it slowly and know that each person handles loss in a different way and what helps one person may or may not help another person in that same situation.
EDDF: How can we help support the important work you are doing?
RS: Please spread the word. CancerHAWK.com contains a wealth of information on resources and organizations that offer assistance to anyone touched by cancer. Knowledge is power…. So please share the power.
EDDF: It’s Sarcoma Awareness Month, what do you think we can all do to help raise awareness of this rare disease?
RS: Before 2009, I had never heard of sarcoma. Now just 3 years later I can name dozens of people I personally know who have been touched by this disease. The best thing we can do to raise awareness about sarcoma is to talk about it. The Liddy Shriver Sarcoma Initiative has a really cool “pop quiz”- just text LSSIPOLL from your mobile phone to 50555 to participate. Miles2Give is another organization that is working hard to raise awareness of sarcoma- they have a team of 3 people who are literally running across the US from California to Washington DC to bring attention to sarcoma.
EDDF: If a person is newly-diagnosed with sarcoma, based upon your experience, what do you think some of the first steps are that they should take?
RS: 1. Seek treatment from doctors who specialize in sarcoma. Sarcomas are often misdiagnosed (sometimes they are thought to be a benign lump, a lipoma or even a sports injury). And once they are correctly diagnosed, they are often large and difficult to remove surgically. It is best to be treated by a team of doctors who have experience in all aspects of sarcoma care. I would also suggest in getting a second opinion, even if your first opinion was from an expert in sarcoma. If the two opinions you’ve received differ, get a third one. More information is better.
2. Talk to your doctor about molecular profiling.
Two people with the same cancer can and do respond differently to the exact same treatment regimens. Why? Because each person’s cancer is unique. Identifying unique genes, proteins and other molecules (called cancer biomarkers) can provide information about how your particular cancer functions and can be used to help identify potential treatment options. Molecular profiling is especially key if your doctor is choosing between multiple recommended treatments, or if your cancer is particularly aggressive or rare or has limited treatment options, or if your first-line treatment isn’t working. To learn more, visit MyCancer.com and IsMyCancerDifferent.com. Both sites have loads of helpful information on personalizing cancer treatments.
3. Understand the goal of your cancer treatment.
Make no assumptions when it comes to your health or treatment plan. Not all treatments for cancer are given with the intent to cure. Treatment can also be given to help prevent disease recurrence, to minimize symptoms of disease, or to simply prolong survival. Knowing the goal of your particular cancer treatment and the potential risks associated with that treatment will enable you to make the most informed decisions possible about your care.