Hear From Leanne: Bladder Cancer Symptoms, Chemotherapy, & Surgery
We're highlighting people in the bladder cancer community. I talked to Leanne about her early symptoms and how she felt when she received her diagnosis of invasive high-grade bladder cancer. She discusses getting a second opinion and moving forward with chemotherapy and surgery with an Indiana Pouch. Read on to learn about Leanne's journey and what she considered when making treatment decisions!
Blood in urine
Mother's Day 2015, I discovered blood in my urine. A lot. The following day I saw my doctor. He told me it could be an infection and wrote me a prescription for antibiotics. He explained to me that if it didn't clear up, I would have to see a specialist, that it could be cancer. In just a few days, it did clear up. I was so thankful.
"I was frightened and angry"
Three weeks later, the blood was back. I was out-of-state on vacation at the time. Because my sister is a hospital nurse, I asked her to find a good urologist for me. I made an appointment and had to wait 3 weeks to get in. I finally saw him and had a cystoscopy. He knew right away it was cancer. He told my sister it was really bad. I was frightened and angry. I was only 57 and had no risk factors. I was also a single parent to a 14-year-old daughter. I adopted her as a 1-year-old. I didn't want to leave her without a parent.
My pathology report and getting a second opinion
I had a TURBT just a few days later. The pathology report said my cancer was an invasive high-grade papillary urothelial carcinoma with invasion of muscularis propria. It was an aggressive cancer. I would need chemotherapy and surgery to remove my bladder. I wanted a second opinion so I sent my scans, etc. to a very good friend who is a hematologist/oncologist. He agreed with the proposed treatment. I would have 4 cycles of gemcitabine and cisplatin, then surgery.
Getting my affairs in order just in case
I am a pharmacist, so I was well aware of the possible side effects. I had a wonderful oncologist. In my first meeting with him, I asked him if he felt we could beat this cancer. He said yes. I met with an attorney to get my will updated and to set up guardianship for my daughter – just in case. A PICC line was inserted to give my chemo through. Then it began.
My chemo experience
I had very little trouble with the chemo. Some nausea which was treated with medication, and exhaustion. The symptoms got worse with each cycle but nothing I couldn’t handle. At the end of my second cycle, I began to have trouble breathing. Turns out I had bilateral pulmonary embolism (blood clots in my lungs). I was hospitalized for a week and ended up with atrial fibrillation. Blood clots in my leg and my arm. They inserted an IVC filter through my neck to catch any more clots. Went home on more meds.
They performed another cystoscopy between my 2nd and 3rd chemo cycle. If any of the tumor was seen, I would need to have surgery right away. If there was no residual tumor, I would continue with 2 more cycles. Luckily, there was no evidence of the tumor.
Deciding on the Indiana Pouch
Prior to surgery, I discussed with my urologist the different choices for urinary diversion. I could not have a neobladder because they were removing my urethra. I spoke with some of the urology nurses and asked their opinion. I decided on an Indiana Pouch instead of an ileal conduit because the IP would change my body the least. I was not given much information and there was no one to ask about their experience with the IP. The stoma nurse was helpful and she marked on my abdomen where my stoma should go. A big purple mark. Now it was real. I was never going to be the same again.
Have your views towards bladder removal changed since you were diagnosed?