Cynthia Kinsella didn’t sleep much the night after a biopsy revealed she had invasive bladder cancer. In fact, she calls it one of the worst nights of her life, and spent much of it curled on the bathroom floor in the fetal position.
Now, Kinsella is approaching 12 years with no evidence of cancer. She and her husband commemorated their 25th wedding anniversary with a road trip as ambitious as a 20-year-old’s. And, the American Bladder Cancer Society, the support network she founded to connect survivors when they feel like crying on the bathroom floor as she had so many years ago, celebrated its 10-year anniversary with about 5,000 registered users.
Here’s what she shared about the experience.
HealthCentral (HC): How were you diagnosed with bladder cancer?
Cynthia: I thought I was spotting between my periods, so I mentioned it to my doctor. It kept happening, and they sent me to a gynecologist who did a uterine biopsy that came back normal. They thought I was perimenopausal. After a couple of years, I figured out it wasn’t vaginal bleeding, and it was very consistent. At that point they sent me in for bladder cancer testing. By then, I had invasive bladder cancer.
I found a research study at Massachusetts General that combined low doses of chemo with radiation. But the cancer came back. We tried another treatment, Bacillus Calmette-Guerin (BCG) immunotherapy, but I was developing tumors while doing it. I had to decide what my priorities were: living, or losing my bladder.
I was terrified of having a radical cystectomy. What was it going to do to my sexuality, my body image? There was so much that went into it over and above the medical portion. But, what you do is you adapt.
I went to the University of Chicago Medical Center to a doctor who specializes in a urinary reconstruction called the Indiana Pouch. With the Indiana pouch, you’ve got to train it. And you have to have catheters with you — I have a collection of cosmetic bags and I [take] lubricant and antibacterial everywhere I go. If I’m out with a girlfriend and we each go into a stall in a public restroom, we’re out in about the same time. It really doesn’t slow me down, but it’s an adjustment.
HC: What are the challenges of having a less-well known cancer?
Cynthia: During my treatment period, I was at a hotel in Boston where someone had hung a full-length mirror outside the bathroom. I saw myself bruised and bloated and looking like hell. And then I heard the television, and there was a piece on about women who had breast cancer getting a spa day with limos and gift baskets. I sat down on the bed and cried. It wasn’t that I wanted a spa day — although I could have used one — it was that I just wanted someone to talk to, someone who had been through it and had come out on the other side.
When doctors tell you, “no matter what we do, you may die ”— you need some support.
HC: How did you decide to change that?
Cynthia: I decided then and there I would find a way to ensure it wasn’t going to be that hard — that no one would have to sit and cry because they just wanted someone to talk to.
For my anniversary, I asked my husband for money to start a website. I knew the technology was there — I knew that from all of the dating sites — and there was no way anyone could set up a brick and mortar support group to reach even half as many people. He said sure, and I formed a board 10 years ago. We do a lot with a very little money.
HC: How has cancer changed your life?
Cynthia: I’m a different person than I was 10 years ago. At 48, it was all about business, paying for college [for my kids], being successful. My definition of “successful” has changed a great deal. Now, it’s more about relationships. When you’re diagnosed with [certain] forms of cancer, you lose some friends because they can’t deal with it. You learn who your friends are, and you get a better grasp of what’s really important.
HC: If you could go back in time, what would you tell yourself when you were lying on the bathroom floor?
Cynthia: Take a deep breath. Having cancer is a journey, and you have to take it a step at a time. Educate yourself. Some things are going to be incredibly unpleasant and incredibly hard, but you have to have a mindset that everything is going to be a step toward getting to the other side. There will be days you can’t get your chin off the mattress, but you have to keep in mind where you’re trying to go with this.
I’m not sure I would have taken that advice, because at that stage you’re in such a panic that you’re in a hurry — you want it out, you want it out now. And, there wasn’t the support back then.