On Sunday April 28, my friends and I will be participating as “Team ThyroidChange” in a walk and fundraiser organized by REACT Thyroid Foundation, a public charity that is dedicated to creating awareness for thyroid cancer and raising funds to support research for new treatment options and ultimately find a cure. Should you wish to support us, you can make a donation to our team here. On the right of the page, you will see a big DONATE button. On the left, you will see the names of each individual member and you also have the option to make a donation to one of them instead (clicking on their hyperlinked name will take you to their personal page – you can find mine here) . It all goes to the team and towards increasing research and hopefully improving the treatment of thyroid cancer.
As many of you know, I’ve been passionately involved in patient advocacy since my own diagnosis of Hashimoto’s (autoimmune hypothyroidism) back in 2009. I write my own blog Butterflies & Phoenixes and I am also the blog editor for the ThyroidChange initiative, which is a petition that aims to improve care and raise awareness for thyroid disease with the ultimate goal of achieving better treatment for all.
Our team was initiated by Amy Graeber who is “walking because I’m a thyroid cancer survivor and it’s so rare to find an opportunity like this specifically for thyroid cancer. Being that it’s the fastest increasing cancer in men and women, we need to dedicate more research into finding out why, and to finding treatments for the types that are resistant to standard protocols.” Another of my fellow walkers, ThyroidChange co-founder Michelle Bickford, doesn’t have thyroid cancer, but (like me) has Hashimoto’s and she aptly pointed out that a familial predisposition to Hashimoto’s puts people at higher risk for thyroid cancer, which is partly what has inspired her to take part.
To find out more about thyroid cancer, read on for my interview with the inspiring and insightful REACT founder, Michelle LeBeau, who talked to me about her personal experiences with this illness and what prompted her to found REACT …
Sarah: How did you grow your foundation so fast?
Michelle: I got the idea to start a foundation after an appointment with my oncologist, Dr. Marcia Brose. She is a leading researcher in advanced stage thyroid cancer treatments and was explaining to me how difficult it is to get the funds and attention needed to make advancements in treatment options. She is extremely dedicated and passionate about her work and I believed in her so much that I was inspired to make a difference. On my flight home, I decided I would send an email to friends and family to raise some funds … but shortly after I changed my mind and said, “Go big or go home, Michelle!” and it was then that the REACT Thyroid Foundation was born. I quickly formed a committee of friends and family who have been instrumental in helping me get things started and it hasn’t slowed down yet!
Sarah: Could you tell me a few words about your own journey, including your struggles and what you have learned from your illness? My journey started in 2009 when I went to the doctor for a nagging cough. When the chest X-ray came back, it was clear that something was very wrong in my lungs. After several tests and a few surgeries, it was determined that at the age of 30 I had a rare form of stage IV thyroid cancer. It had spread extensively throughout my lungs and I was told that I probably had two years to live. At that point I had to decide how I was going to handle this news and I decided that I would not let cancer define who I was and that it would just be another interesting part that makes me who I am. Having cancer has helped me to realize what is truly important in life and learn to not sweat the small stuff. I have also learned that having a positive attitude is a must when fighting cancer. Of course there will be bad days, but you have to seek out all the good things that happen in every situation … there are plenty if you just look for them. And last but not least, I’ve learned that sharing your story is so important and can help and inspire others in ways that you never thought possible.
Sarah: How has your illness affected your self-image?
Michelle: Initially, I was afraid to tell people that I had cancer because I thought they would treat me differently. After a year of keeping it quiet, I learned that sharing my story is a great feeling because it inspires people and educates them on a cancer that is on the rise. I would say the biggest struggle that I had to deal with was all the various side effects of the chemotherapy, especially losing my hair. I have always had thick and curly red hair and that is how people knew me. When it first started falling out, I was very concerned about it and felt like I had lost my identity, but I quickly realized that if losing my hair was all I had to worry about then life was pretty good. It has now started to grow back and I’ve really enjoyed having short hair … it saves so much time when getting ready in the morning!
Sarah: What do you look for in a good doctor? Have you been able to find a good doctor?
Michelle: I feel extremely lucky to have found an amazing doctor, Marcia Brose, from the Abramson Cancer Center at the University of Pennsylvania. When I was initially given a diagnosis of two years to live, I quickly started traveling around the country to find someone who knew anything about this rare cancer (medullary thryoid carcinoma) that I had. Dr. Brose specializes solely in advanced stage thyroid cancer and is one of the leading researchers in her field. She actually wrote the clinical trial for the chemotherapy treatment that I have been on for two years. She is also one of the most compassionate and humble doctors I’ve ever met.
When looking for a doctor, I think it is critical that you feel comfortable talking to them and that they spend time listening to you and answering questions. You are entering into a relationship with this person and if you don’t feel respected then it’s not a good fit. I also think it is very important that their support staff are informative, helpful and available. You need to be able to contact them and get a quick response whether it’s a weekday, evening or weekend. Lastly, they should have extensive experience in treating your specific type of condition.
Sarah: How do you feel about hormone replacement therapy after thyroidectomy? Do you feel there needs to be varied treatment options?
Michelle: I have met so many people over the past three years who are on some form of hormone replacement therapy and it is amazing how varied the side effects can be. I also hear about many different variations and combinations that are used by doctors. Yet there doesn’t seem to be much that has changed in the actual guidelines over the years. I definitely feel that more research could be done on the long-term impact of being on these drugs, as well as various combinations that can be used.
Sarah: What kind of thyroid hormone replacement do you take and what do you think of the thyroid testing currently available?
Michelle: I have been on various doses of Synthroid since my thyroidectomy in November of 2009. I consider myself to be lucky in that I have not had much trouble with the treatment outside of dose changes mainly due to the chemotherapy. As for the testing, it seems to me that more research could be done in this area as there are so many people impacted by it in so many different ways. I’ve heard many stories of people who have gone undiagnosed for a very long time because their “numbers” were within a normal range despite complaining of common symptoms.
Sarah: What advice do you have for a newly diagnosed thyca patient?
Michelle: First and foremost, you should get to a good doctor and make sure they have experience in treating MANY cases of thyroid cancer. The same goes for your surgeon. Do not settle for just anyone! Secondly, I would find a support group. There is an excellent organization called ThyCa (www.thyca.org) which has great support groups that meet in person, by email and even Facebook. You are not alone. You just need to reach out to them. Lastly, learn all you can about thyroid cancer and share that information with others. The more we educate those around us, the more we can make a difference and save lives.
Sarah: How do you feel about doctors calling thyroid cancer “the good cancer”?
Michelle: I think everyone would agree that no cancer is a good cancer. It is unfortunate that this is how some doctors choose to comfort patients and at times it even gets picked up by the media. Yes, there are varying degrees of thyroid cancer but calling it a “good cancer” doesn’t do any of us justice, nor does it help us in our fight to advance research. If we ALL continue to unite as a thyroid cancer community and educate as many people as possible, we will gain the attention that the fastest increasing cancer among men and women deserves!