A Cancer Advocate Speaks Out About Bladder Cancer and Survivorship
Editor's Note: This is part of our Survivorship series. Please see other posts in this series.
When Liz Hiles started experiencing urinary problems and pain in her late 30s, she was told it was due to a bladder or urinary tract infection. For Liz, that didn’t add up. Test results showed no evidence of infection. Her symptoms mirrored those of bladder cancer, but she didn’t fit the typical description of a bladder cancer patient. Often, people who are diagnosed with this cancer are older than 55, and men are 4 times more likely to develop the disease.
Liz persisted in seeking answers from medical providers about her urinary problems and pain. She did not give up. When Liz was finally diagnosed with bladder cancer, in August 2016, she was nearing her 41st birthday. She underwent a radical cystectomy with an ileal conduit urinary reconstruction, a common type of urostomy. Results of her surgery revealed she had stage 3B cancer.
Today Liz is passionate about sharing her story to raise awareness about bladder cancer and the detrimental stereotypes around it. She is also passionate about ostomy awareness and education. “Ostomies are never anyone’s first choice, but they will give you your life back,” Liz wrote in a blog about her advocacy work. “You can live a long life and have a great quality of life with an ostomy.”
In this Q&A, we learn more about Liz’s cancer experience, her survivorship story, and her passion for cancer advocacy.
Can you talk a bit about how your own cancer experience has informed your advocacy work today.
Since I had to fight for my diagnosis — and having had previous awareness of the many issues and stigmas that ostomates face — I was determined to share my story from the very beginning. Most of the accounts of bladder cancer I encountered early on were that of the stereotypes: old, chain-smoking (or formerly chain-smoking) white men. That was nowhere near what I was or am. I even searched Google and Amazon for books with patient accounts on bladder cancer. There were hardly any, and the ones I did find were all about men. And I learned about the discrepancies in treatments for women, minorities, and adolescents and young adults (AYAs). I had always been involved with advocacy and activism, just in different areas of interest. So, when I started learning and realizing all these things, I knew I had no other option than to speak up and out about them.
"I learned about the discrepancies in treatments for women, minorities, and adolescents and young adults (AYAs)...So, when I started learning and realizing all these things, I knew I had no other option than to speak up and out about them."
What are the most important things you want to communicate to others when raising awareness about bladder cancer?
Bladder cancer does not discriminate, and it can and does happen to anyone. No cancer discriminates. Age, ethnicity, gender — it doesn’t matter. Medical professionals need to stop using the revolving-door technique. They must try to spend time with their patients and listen to the symptoms being relayed to them. If traditional testing is not yielding results, then it is time to think outside the box and try other things. My bladder cancer did not present in the typical way. Having blood in urine is the single most common symptom of bladder cancer. I never experienced outright blood in my urine. I was having nocturnal accidents and bladder spasms and, eventually, I was urinating blood clots. All things that were not consistently happening. All things that cannot be done on cue. Women have different urinary systems than men. Why wouldn’t anyone have thought of that before? Of course, women are going to experience bladder cancer differently than men!
What does cancer survivorship mean to you?
Cancer survivorship, for me, began the moment I received my diagnosis. I was determined to be cancer-free. I kept having an image in my head of Batman in the Batmobile and hitting the ejector button on some unwanted passenger like The Joker. That’s one of the things that carried me through the grueling 8 months of waiting, treatment, and complications.
Since treatment ended, survivorship has included changing my career focus to do things that I am more passionate about and that allow me to take better care of myself. Now I take more opportunities to travel and have vacation time — even if it is a staycation. I’m more aware of my body, its needs, its limitations, and when something is not quite right. I do better about staying active and eating right. I am less willing to tolerate any negative influences for any amount of time. Survivorship is a funny thing, though, because it is defined and looks differently for each individual person. It is very subjective and is greatly influenced by what the individual ultimately wants out of their life. Ultimately, for me, I want to live a comfortable life doing things I love to do and spending time with people who bring me as much joy as I bring to their lives.
"I was determined to be cancer-free. I kept having an image in my head of Batman in the Batmobile and hitting the ejector button on some unwanted passenger like The Joker."
Survivorship comes with many unique challenges. What has been one of the toughest challenges for you on your journey?
The toughest challenge I’ve faced in survivorship is that most people expect you to return to the person you were — physically, mentally, and emotionally — pre-cancer. That’s not the reality though. It’s not the reality for me and for most of the AYA cancer survivors I know. (AYA traditionally has a cut-off at age 39, but AYA groups have been welcoming to those of us in our 40s as well.) I struggle with ongoing side effects from the chemotherapy I was on. I live with a medical appliance almost constantly attached to my abdomen. My anatomy has changed a lot. I am now in medical menopause. I do not have any sexual desire or even a desire to date now. I have developed secondary diagnoses that I am constantly working with my care team to address. My cancer experience has even caused me to struggle more with depression issues, which I’ve had since I was a teenager. Cancer changes you. You cannot go back to that [earlier] time; you can only move forward. The people in your life must learn to accept that and move forward with you or get left behind.
"Cancer changes you. You cannot go back to that [earlier] time; you can only move forward."
What brings you joy, comfort, and peace as you navigate survivorship?
First and foremost, my phenomenal support system! It gives me great peace of mind to have them supporting me. Despite living alone, being single, and not having an immediate-family support system, I always knew I was not alone. I have amazing friends, from recent connections all the way back to when I was 5 years old, who are in my life. I also have extended family and current and former coworkers who have been truly supportive of me. I love spending quality time with people who take me as I am and love me anyway. I cannot wait to do it more often again when the pandemic fades away.
Other things that bring me joy, comfort, and peace are nature — I love to walk and hike when I’m not in too much pain from my neuropathy; doing anything creative (painting, writing, crochet, scrapbooking); reading; swimming; and being around animals. I don’t have my own pets so I borrow friends’ cats, dogs, and horses for some critter therapy when I can.
"Do your own research. Ask the tough questions. Educate yourself about your conditions. Be aware of what potentially lies ahead so that you are better prepared to deal with it."
What is one piece of advice you’d like to share with other survivors — something you wish someone would have told you when your cancer journey started?
The effects of cancer do not just end when treatment ends. This is not discussed on the front end of things. Usually, doctors do not bring this up at all, especially with AYA cancer patients who must live with the effects of cancer much longer than older survivors — sometimes more than half of our lives. There is a huge emotional and mental impact that many are not able to deal with, or process, when going through actual treatment. For many, there are lasting physical effects of treatment that linger on for years afterwards, sometimes for the rest of life. Medical professionals are not concerned with things like lasting quality of life when they are saving your life. That’s to be expected to some extent, but that is no excuse for not preparing patients for the long-term effects of cancer and providing support beyond cancer treatments. Do your own research. Ask the tough questions. Educate yourself about your conditions. Be aware of what potentially lies ahead so that you are better prepared to deal with it.