I Was Diagnosed with Bladder Cancer at 28
Bladder cancer should typically target older white men who have smoked. Outside of that usual range, it still tends to be diagnosed in those much older. I have noticed in support groups that people gasp when someone under 50 is diagnosed and exclaim, “But you are so young!” So, when I was diagnosed and began reaching out for support, I really shocked the groups I was in. At the time, I was 28 (now 29) and only just beginning to get my life together.
Feeling isolated as a young adult with cancer
When you are a young adult with cancer and especially bladder cancer, you can feel very isolated. For me, I wasn’t able to just take an early retirement or go out on disability. I needed to get well and get back to work to support myself. Also, I WANTED to work. I didn’t want my life to stop at 28. I didn’t spend all that money and time in college to not continue to pursue a profession that I love and have been working in for almost 10 years.
Setting goals for my recovery
Pre-diagnosis, I was incredibly active; I was a bit of a fashionista and was even in the process of looking to purchase my first home with my husband. My diagnosis and subsequent radical cystectomy brought all of this to a screeching halt. I made it my motivation during recovery that I would run a 5K again within a year, I would figure out how to still dress like a young professional, and somehow, we would overcome the medical bills to buy a home. It’s all of those "growing up" experiences that cancer seems to impact the most in young adults. Thankfully, I have met most of these goals for myself, but there are some things bladder cancer has taken away from me that have hit me harder than say, a woman in her 50s.
The impact on intimacy and my ability to have children
During my cystectomy, they also performed a full hysterectomy. I will never have biological children of my own, and at 28, I was thrown into early menopause. Also, I was not made aware prior to my surgery that it is typical for the vaginal canal to be shortened from everything being removed. At 28, only a year into marriage, I was told that intimacy with my husband was going to be very difficult. This would break the heart of a woman at any age, but when you are young, it is devastating.
Bladder cancer can be sneaky for women
I wish people knew how sneaky bladder cancer is, ESPECIALLY in women. I get asked all the time, “Knowing what you know now, what would you do differently?”. I don’t think I could have done anything differently. Many times, the symptoms in women present like something menstrual-related. That is why it is so often diagnosed at later stages and at higher grades.
I had a healthy lifestyle
I wish people knew it isn’t something I did. I never smoked, I was athletic, ate a very healthy diet, and haven’t been around hard chemicals a day in my life. Bladder cancer just happened. Even with my genetic panel, we aren’t sure exactly why I got this type of cancer.
Little awareness of urostomies
I also really wish people were more educated about ostomies. So many people really think I poop and pee in my ostomy bag. Or my favorite is that they think I control when I go. Urostomies are a very underrepresented piece of the ostomy world.
Increasing public knowledge about bladder cancer
But most importantly, I wish people were more informed about bladder cancer and that it is a killer. The statistics for this disease are frightening. All cancers are devastating, but I have noticed the not-so-fashionable ones receive less funding, less awareness, and have led to more people not knowing how to ask the right questions to be screened and hopefully diagnosed earlier.
How long did you wait before telling others about your diagnosis?