It’s Bladder Cancer Awareness Month: Time To Share My Story

May is Bladder Cancer Awareness Month.

It’s time to share my personal story. Bladder cancer is the sixth most common cancer (and 11th most common for women) – a cancer I never knew existed until I was told six months ago that “you have bladder cancer.” Not something I wanted to hear on the eve of my 60th birthday.

You Have Bladder Cancer

I asked my urologist Dr. F three times if he really said the “C” word. Mind you, I had never seen  a urologist before.

“Did you say cancer?” I asked Dr. F after my surgery to remove a tumor from my bladder. “Yes, it looks like cancer,” said Dr. F.

Orange ribbons are the symbol of bladder cancer. Photo courtesy of BCAN.org.

Why me? Men are more likely to develop bladder cancer than women. I am not a smoker and during my full-time career I wasn’t in an environment where I was exposed to certain harmful substances — two of the risk factors. According to BladderCancer.net, people who are older are at a higher risk for developing bladder cancer—around 90% of people diagnosed with it are over the age of 55. I’m over 50, guess that’s me! “You live in New Jersey. It’s the chemical capital of the U.S,.” said my friend L. Ugh, that’s right!  

More men are diagnosed with bladder cancer than women. Stats from BCAN.org.

“You mean it’s cancer?” I asked Dr. F again. “Yes, we have to wait for the biopsy report to determine next steps.” Those were the longest two weeks ever, especially since one of the weeks I had a catheter attached to my bladder to facilitate healing. Ugh! I was scared. I was really scared. Not able to do yoga, I used all my mindfulness meditation tools and techniques to calm my thoughts.

“Are you sure it’s cancer?” I asked the third time. Dr. F shook his head up and down. Thankfully, my biopsy showed that my bladder cancer was stage T1a, non-invasive. The good news is my tumor had not penetrated the bladder wall or muscle. I didn’t need any additional treatment for now, just scopes every three months going forward for a year, every six months in year two, and then yearly for the rest of my life — as long as another tumor or tumors don’t return. The bad news is bladder cancer has a high rate of return — 50 – 80 percent. Ugh!

Finding It Challenging To Diagnose

Flashback to summer 2017. My diagnosis took months to confirm. First there were the frequent urinary tract infections (UTIs). Then there was the speck of blood in my urine. Then it went away. Then another UTI  Then it cleared.

“Blood can appear in the urine when you have a UTI,” said my general practitioner (GP) Dr. S.

Multiple antibiotics were prescribed to clear up my UTIs. But the frequency remained. At night, I was peeing almost every hour, my bladder never fully emptying.

Risk Factors for bladder cancer. (BCAN.org)

There was constant lower abdominal pain too. I attributed the pain to my irritable bowl (IBS) acting up from all the antibiotics. I had a colonoscopy to make sure my colon was okay. “All clear in the colon,” said my gastroenterologist Dr. S.

“I think we need to send you to a urologist,” said my GP Dr. S.

“Your urine is clear. You have an overactive bladder,” said the initial urologist Dr. C. “Take these pills and let me know if they help you.” I tried the pills but they gave me such headaches that I stopped taking them.

Seeing Red On The Aegean Sea

In October, I left for my Viking Ocean Cruise. Once out on the beautiful blue of the Aegean Sea and two days into my 15 day voyage, there in my urine sat three large red blood clots. I was scared. I was really scared. 

The signs and symptoms of bladder cancer. (BCAN.org)

Dr. Z and the nurses on board the Viking Star were amazing. Dr. Z calmed my anxiety and gave me antibiotics. He scheduled an appointment for me at the hospital in Rhodes, Greece. The incredible doctor Z was able to secure a spot on a Sunday!

The urologist in Rhodes suggested I get a cystoscopy (scope of my bladder) upon my return home. He said it might be a tumor.

“Do you want to go home early from the cruise?” asked Dr. Z. I decided to continue on with the cruise and adjusted my excursions appropriately. “If there’s bad news down the road, I want to see Israel,” I said to my boyfriend L. I was scared. I was really scared. But seeing the Holy Land brought spiritual comfort.

I also want to make a plug for Allianz Insurance. I bought the insurance prior to my trip and never thought I would need it. When you are traveling abroad it is very important to purchase insurance that provides healthcare. You never know when you are going to need it. The team at Allianz reimbursed almost all of my expenses when I submitted my claims upon returning to the States.

Looking Back and Looking Ahead

Once home from my cruise, after another UTI had cleared and a cystoscopy was performed it was confirmed: “I see the tumor,” said Dr. F.  Prior to surgery I had scans of my kidneys, my uterus and ovaries, and an X-ray of my lungs. Everything was clear. Yay!

The surgery was scheduled for December, two weeks before my 60th birthday. I feel lucky that my bladder cancer was noninvasive. I’m glad I listened to my body and when I noticed something not right, I persisted and went to the doctor until the culprit – the cancer – was found, and found early before it had spread. I’m glad it’s out of my body now and hope it never returns.

Bladder Cancer statistics. (BCAN.org)

Each morning, I take my cranberry supplements to hopefully help keep my bladder in good health. I drink plenty of water and always find a bathroom when I have to pee – which is still often being post-menopausal – but not as often as it used to be. (BTW, I don’t have an overactive bladder!)  I had my first three month scope in March – my bladder was clear. Yay!

My life feels forever changed since that December day when I was told I have bladder cancer. I don’t take any part of my body for granted anymore. Yes, I do look in the toilet bowl each time after I pee. This will likely ease up as time goes by. Yes, I do get anxious when the date draws near for my next scope, as it does now with my next scope scheduled for early June. This will likely ease up too as time goes by.

Resources For Those With Bladder Cancer

Being the type-A person that I am, I read up on bladder cancer, both before and after my surgery. American Cancer Society and bladdercancer.net provide good information about bladder cancer. I also found the Bladder Cancer Advocacy Network at BCAN.org, which offers local support networks, research and clinical trials to those diagnosed with bladder cancer. I researched urologists in the Southern New Jersey and Philadelphia area and went for a second opinion with Dr. M at the University of Pennsylvania Hospital. He confirmed that my care was appropriate. Dr. M’s words eased my worries.

The Bladder Cancer Advocacy Network is an excellent resource for those with bladder cancer or caregivers.

Taking Time To Stop, Breathe, And Be

I noticed I’m speeding up again now that I’ve recovered from my surgery. Slow down, Judi! Slow down and smell the roses, I told myself the other day. I’m still learning to stop, breathe and be. It’s a part of my mindfulness practice that is front and center these days. I feel blessed to have such supportive family and friends during the past six months.

And to you dear readers. I share my story with you in the hopes that it will help other women who may be going through a similar health journey, now or in the future — so they know they are not alone. Any kind of cancer diagnosis is scary. I thank you for always being there during my ups and my downs. Your virtual friendship means the world to me.

Thanks for listening.

Judi