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The Rookie Cancer Advocate

The Rookie Cancer Advocate
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Published on January 18, 2018

dana-stewart-friendI’m a rookie cancer advocate. [I am the one in the red scarf].  There’s no other way to describe it.  I am also a retired cancer patient and hope to stay in that status for the rest of my life.  After I was done with my own cancer treatment, I took a turn at going to support groups and then leading support groups.  It was helpful for me to be able to support the newly diagnosed.   I was 32 years old when I was diagnosed with stage 1 ER+ breast cancer.  I knew literally no one my age who had been diagnosed.  I had nowhere to turn.  To say I felt like an outcast was an understatement.  I did end up finding a few women my age who were also diagnosed with breast cancer, and it made a world of difference in my treatment and recovery.  So I wanted to return that favor by helping others going through the same.

Over time though, hearing stories of diagnosis and treatments started to cause more harm than good for me.  I had struggled with my anxiety about recurrence to the point that it was getting worse over time, not better.  I was eventually diagnosed with PTSD thanks to that “c” word and knew what I had to do.  In order for me to heal emotionally, I needed to take a step back from directly helping others via support groups.  It bothered me to quit the support groups, but I had to make sure I was helping myself move forward as well.  I still needed some way to help others affected by cancer.  It was then that I started to hear about cancer advocacy and science of cancer training.  I applied for a program offered by Young Survival Coalition (YSC) called RISE – Respected Influencers through Science and Education.  I knew this was where I wanted to be.  I was accepted into the RISE program, and that’s where my cancer advocacy story begins. 

Being a rookie cancer advocate means I have no experience in the field, for lack of a better explanation.  I have been training for 18 months on the science of cancer, how to discuss healthcare with politicians, etc.  However, I have yet to actually put my training to use.  Thanks to the YSC RISE program, I went through Project LEAD training via National Breast Cancer Coalition as well as health care advocacy training in Washington, DC also through the National Breast Cancer Coalition.  My last training was in the experience of advocacy itself—The San Antonio Breast Cancer Symposium (SABCS), which is only the biggest breast cancer symposium in the country.  I knew it would be exciting to be in attendance with 7,500 other medical professionals, scientists and advocates.  I knew it would be a bit overwhelming hearing all the information on new treatments, findings and clinical trials.  Being a newbie in the advocacy world left me wide-eyed and almost dumbfounded.  I do wish was that there was some guide out there or someone else’s Do’s and Don’ts list I could have followed that might have made things a bit easier.  I don’t know if it would have made a difference, but it might have at least helped me with preparing to simply be overwhelmed.

Since there is no official documentation on how to be a new cancer advocate, I figured I would give it a go.  As I went through the week in San Antonio, I wrote down thoughts that came to mind as I was navigating the week.  How would I explain this to someone else?  How would I share my experience with another newbie?  What did I wish I could have told myself before I left, now having experienced the whole week first hand?  Well, here goes:

1. Make friends with the word overwhelmed.  You can look at this word any way you want.  Sometimes it is seen as a bad thing.  In this case, I see it dressed in nothing but good.  How?  Well, simple.  If you go to an event or symposium like SABCS, you will be overwhelmed.  For starters, there are 7,500 people attending one convention.  So just that number of attendees alone is overwhelming.  The amount of research is overwhelming and all the verbiage, medical terms cancer, information, etc. is overwhelming.  Knowing you will not be able to grasp it all is helpful.  Knowing that you won’t be able to hear every presentation, every word spoken, or see every poster will make it less overwhelming. 
2. Plan ahead.  No matter if you are going to SABCS or any other cancer summit, take a look at the schedule, the speakers and the exhibitors up front.  You don’t have to plan out every move but getting to know what is being covered and when will help you get a feel for who you want to hear speak and presentations you want to attend. 
3. Brush up on your cancer knowledge.  Okay, if you are a cancer advocate, chances are you have joined up because you were a patient at some point or knew someone who has battled cancer or is currently in the fight.  This does not necessarily mean you are an expert in DNA, cell biology, or human genetics.  So, don’t expect to know every term that the doctors spew during their presentations.  That’s to be expected.  However, look up some basic cancer terms, spend some time Googling cancer and just get a feel for the basic terminology.  This will help you understand a bit better what is being presented.
4. Listen!!  This is a big one to me.  We all have stories to tell and experiences to share.  That’s how we learn and I would encourage everyone to chat with doctors, scientists and other advocates.  However, I found that during quite a bit of my conversations, everyone wanted to talk about what they thought was important and only hear what they themselves had to say.  You can miss out on a lot of good information if you are the only one talking.  Trust me, you will get your turn to be heard.  Just make sure you are truly listening to the others.  It will be fascinating what you learn.
5. Find experienced advocates and ask them to share their tips, ideas, and involvement.  Cancer advocacy is not a competition.  It is not about who can talk to the top doctor or be the most known in the advocacy community.  It’s not about keeping secrets.  It’s about sharing knowledge and experience with each other.  The more cancer fighters we have out there, the better the chance that we can keep the medical professionals focused on what matters—figuring out how to beat cancer and stop it before it even starts.  Make sure you talk to the advocates.  Ask them how they got experience, what they do, organizations and websites that are helpful and to introduce you to other advocates and medical professionals. 

I could go on and on, as there is so much that I have learned in my short time as an advocate.  These points and tips are strictly from my perspective.  Most of these five points I learned as I have gone on are ideas I wish I would have known before even starting.  I look forward to continuing to learn as a cancer advocate and hope I can use my new skills to make a difference for myself as a cancer survivor as well as other cancer survivors I may never meet.  I don’t mind being a rookie.  It puts me in a good place to learn from the pros and hear their tips and tricks as we all navigate cancer advocacy together.

Accept, believe and life will proceed,

Dana Stewart
Co-Founder, Dragonfly Angel Society 
FB:  The Dragonfly Angel Society – Cancer Survivorship

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