Advocating For Yourself | Advice From A Bladder Cancer Survivor
A cancer diagnosis may leave you feeling many things, but one thing you shouldn’t feel is alone. Many people have felt the way you feel and have been through a cancer diagnosis and treatment. In fact, in an effort to help others, many cancer survivors have shared their stories and given advice to help others.
The Bladder Cancer Advocacy Network has a number of inspiring survivor stories. Here is one bladder cancer survivor’s personal experience with bladder cancer, the importance of being proactive, and her advice for other patients.
Megan Is Following Her Dream
Source: bcan.org
It was in 2016, I was 25 and in Physician Assistant (PA) School. I believe it started around the summertime, and I just kept feeling like I was having the classic urinary tract infection (UTI) symptoms. But I had no hematuria and I actually worked for a gynecologist at the time. Every time that I felt like I had a UTI, I would just say, “Can you prescribe me antibiotics?” Since I was in Physician Assistant School, I wasn’t going to go to urgent care and do a urine analysis. I knew what a UTI felt like and it felt like the typical burning, I had to pee every five seconds, was just crampy, uncomfortable.
Now looking back at it, I know that was wrong, but if you’re a young female, you’d never think of anything like that. I just thought I had a UTI. It wasn’t until spring 2017 that I started having hematuria. I would have it for a day or two when it would just be there after I urinated, but just on the toilet paper. I would think, “I’m probably going to get a UTI.” And then a day later I’d have UTI symptoms. Until one week it was sustained for three or four days and I thought, “Eh, this isn’t normal.”
I kept joking with my mom that I thought I had kidney disease. Because I’m in Physician Assistant School and I’m learning all this medicine stuff. I was wondering if it was all in my head and I was being a hypochondriac. But then when the hematuria didn’t stop, I decided “I’m just going to go to the emergency room. Maybe I have a kidney stone and they could do something.” In the emergency room, they did a urine analysis and they said that I should follow up with a gynecologist. I knew that this isn’t a gynecological issue.
I also knew it wasn’t an STD or anything. Though they said the urine analysis just shows blood, no infection, nothing. So they didn’t do any imaging there. And I remember I left the ER and I had the urine analysis and the level of red blood cells was so high. I called the gynecologist I’d worked for, noting “Something is wrong. Something’s not right. This is not normal.” He thought it was a kidney stone and since now the hematuria is more present and has been for so many days, maybe it was going to drop. He told me “So if you get extreme pain in the middle of the night, go to the ER. But I’ll send you for a renal ultrasound anyway.” I thought to myself, “Okay, at least we’re moving forward with some imaging.”
That was the week that I had finals in PA school, so I was going to go home to Long Island to go do my imaging tests. I was so excited my finals were over. My mom picked me up from the train and we went to do the imaging. They did an ultrasound of my kidneys and bladder. They picked up the tumor on an ultrasound! So it was fairly large and that same day, the doctor called and just said, “It warrants further imaging and work-up.”
Of course we went on the computer and tried to find a good urologist. Being from New York, there are so many hospitals in the city. We got some recommendations and I went to Cornell Medical Center and that’s where I have my urologist now. In the initial visit, he did cystoscopy and he planned to take a sample do pathology and then decide how to treat it if it is anything.
Once he did the imaging, he was surprised and said “This tumor is far larger than what the initial report said. I’m not even taking a sample. We’re going to book surgery. It was May 5th, Cinco de Mayo, is when I had surgery and he did the trans-urethral bladder tumor resection (TURBT).
I went home the same day and what I will never forget, it was not a bad surgery. It was fine, but most people go home with a Foley Catheter. My doctor said “You’re young, you can handle it.” It was miserable for so many days because it was so sensitive. Sometimes I think about that and I get the chills, I hate it.
Since the surgery, I was doing follow up every three months with cystoscopy and cytology. Then after a few clear bills of health, then we upgraded to every six months. I’m going back in July and then if that’s good, it will be every year. I never received chemo or BCG because after he did the surgery, he was fairly certain it was just benign. The doctor said that if he had more of an idea in the operating room he would have just done an intra-operative wash. But he commented, “I’m just shocked because you’re so young and you have no risk factors at all. You’ve never smoked in your life, ever, and never worked around dyes, rubbers, all those things. You’re also not a middle-aged male.”
Even the appearance of the tumor, he noted, “It didn’t appear malignant.” All my scans have come back clean, which is good. So now every time I don’t feel so good, I worry, “Oh my God, not again. No, no, no.” But everything has been great. So that’s good. Sometimes I just get nervous about my follow up tests. My doctor said that if the cytology is not clear then he’s going to do something called blue light cystoscopy in which you have to go under anesthesia.
The strangest thing I do now after my diagnosis is that every time I go to the bathroom now I’m conscious of just checking the toilet paper. It’s insane. It’s nerve-racking because there could just be no symptoms this time or something. And especially with cytology, you could just go back and you could have absolutely no symptoms and there could be something there. Being so young, there’s just no explanation for my bladder cancer.
I think that maybe I wasn’t as freaked out or affected by it as much before surgery because I found out that it was cancerous after the tumor was removed. If I would’ve known before, I feel like I would’ve been so much more freaked out. I think that everyone should know and look for any signs of symptoms. That it may not be just an infection. Just go get checked and even if you have no risk factors, this could be something, I would say always follow your gut. And it is possible to have this diagnosis and that even after you have surgery and you have to have close follow-ups. It’s totally doable to follow your dream, whether you’re in school or you have a job and kids and busy life. You can just make time for your appointment and still have a positive outlook and just do what you love to do.
What I would tell other patients is that you can’t let it bring you down and be upset over it. Of course, it’s shocking and it’s upsetting, but you can’t just label yourself as like, “Oh I have bladder cancer, I went through all this.” You still have to just get up the next day and keep doing what you want to do and what you love. Just don’t let it bring you down. I didn’t feel bad for myself because I did everything I could and I caught it at a perfect time. I have to keep going and do what I want and I don’t let something like this drag me down. Just be proactive. I go to my appointments, reach out to people and follow up on research studies and just being in something like BCAN, the support group and reading other people’s stories. You could just get through it that way too.
I guess the biggest thing that I would want people and healthcare providers to know too, is that every person isn’t straight from a textbook. You have to think outside the box. I had classic bladder cancer symptoms, to a T. It took a while for people to think outside the box. So for healthcare providers too, everybody’s not a textbook case. I’m lucky that I followed my instinct and all my scans have been clear since then.
Bladder Cancer Resources
If you or a loved one has recently been diagnosed with bladder cancer, the SURVIVEiT® Resource Library can offer you a number of helpful bladder cancer resources to help you advocate for yourself. Discover a list of questions to ask your oncologist at your next appointment, information about molecular profiling, actionable steps you can take, and more.