March is kidney cancer awareness month, and we’re talking with our community about our shared experiences.  Mollie Worcester, our Board President, was diagnosed with Wilms Tumor as a very young child. Learn more about how it affected her and her family, and what inspires her most about Candlelighters.

Q. How old were you when you were diagnosed, and what were the signs and symptoms?

I was 2.5 years old when my parents noticed a lump on my right side, and that I had become fussy, which wasn’t my nature. My regular pediatrician was away, so I was taken to the covering Doctor, who misdiagnosed me. My parents were diligent, and because they knew that something was wrong, they got me right to my regular Doctor as soon as he returned. He immediately suspected what was going on, and sent me for scans and bloodwork, which came back positive for Wilms Tumor, a type of kidney cancer.  I was in surgery the following week having my right kidney removed.

 

Q. Do you recall how you felt when you first learned about your diagnosis?

I was not old enough to know of the diagnosis, for me cancer was sort of of my normal.  It wasn’t until later (4^thor 5^th grade) that I realized I was slightly different from others.

Q. How did your parents respond to this news?

My parents had already lost 2 children to a congenital heart defect. When I came along with this random cancer completely unrelated to anything, they had to brace themselves for the potential loss of another child.  They had to explain to my older siblings that they were all going to have to face this again, plus, my mom was pregnant.

Q. How did cancer affect your day to day life, school, friendships?

My parents did a really great job in keeping things as normal as possible for me.  When I hit Jr. High and had to change for PE, that was hard. I had never really understood that my body was misshapen from my surgery and the scoliosis caused by the radiation. This was about the time that my parents and Doctors sat me down to explain what I had gone through.

Q. What were some challenges your family faced during your diagnosis and treatment? What was helpful to your family getting through this time?

There were so many challenges.  My mom was pregnant when I was diagnosed, so they had a newborn while I was going through inpatient Chemo, along with my 2 older siblings. They had to balance themselves and all of my siblings while going through this.  Another big challenge was trying to make the right decisions for my treatment.  When I was sick, treatment was very high doses of chemo (Vincristine and Dactinomyocin) and Cobalt radiation, which is no longer used due to its toxicity.  My dad was a journalist so he did what he knew best to do—research everything to understand the effects and make an informed decision. He spoke with specialists around the country, getting very detailed and unfiltered information, so that they were able to make as informed a decision as possible.

 

Q. Did you know any other kids or families at that time facing cancer?

I knew of one other girl was the daughter of a dear family friend who got and subsequently passed from Leukemia when I had been out of treatment for 7 or 8 years. When she died, I began to understand the gravity of my situation.

Q. What advice do you have for families facing a kidney cancer diagnosis?

Easier said than done, but try not to go to “worse case scenarios”.  Do as much research on your own as possible, but know that you will be surrounded by a team of medical professionals who will give your family the best options.

Q. Do you have any advice for families on detection or warning signs?

It depends on the age.  If your child is able to articulate that something feels wrong in their body, that can help guide the conversation with your Doctor. Watch for blood in the urine and or bloating around where the kidneys are.

Q. How does your experience affect you today, physically, emotionally… if at all?

Living with just one kidney has not really been an issue.  However, the late effects from my cancer and treatment have definitely take a toll on me both physically and emotionally.  I live with chronic pain as a direct result of my treatment.  Trying to find Doctors who know how to treat a kidney cancer patient years after treatment, and to help navigate the various late effects has been a big challenge, so I have had to be very diligent about finding the right team as I age.

Q. As a survivor, what  do you wish you could tell your newly diagnosed self?

Be strong!  You will have challenges, some of which may seem insurmountable at the time, but hang on, keep fighting and surround yourself people to help keep you going when you feel you can’t.  Join support groups so you will have others who truly know what it is you are going through.

Q. Were there any organizations like Candlelighters that you or your parents were aware of when you were diagnosed?

Unfortunately, there were not any groups like CL when my family went through this so they did not have the type of support that comes from a peer to peer type relationship.

Q. As board president, and a cancer survivor, what about Candlelighters work are you most passionate about?

I am so proud of ALL the work we do at Candlelighters, but most of all, I am so proud of all the families who use our services and attend our programs and events.  The first time I interacted with a Candlelighters family, I was blown away.  The strength and courage that was demonstrated by all members of the family was so inspiring. They provided a glimpse into what my family went through all those years ago, and I wished that my parents and siblings had been able to turn to Candlelighters for support.  Later, once I had an understanding of what I had been through, I know I could have benefitted from the peer to peer opportunities we provide, if for no other reason than to have had someone else who knew what I was going through to talk to and bond with.