Sue’s Story: Four Different Cancer Diagnoses, Including Bladder Cancer

I was no stranger to hearing the words “you have cancer” because bladder cancer was my third cancer and fourth cancer diagnosis.

Many people would think that learning of my diagnosis, I would be scared and shocked, but it was the opposite. Despite my illnesses, I have always maintained a positive attitude and outlook on life.

Three different cancer diagnoses

My journey with cancer started in 1993 when my doctor noticed I had two nodules on my thyroid gland. They could not biopsy the second one because it was too deep; it was on my thyroid, so they tried giving me Synthroid for a year, but nothing changed. In 1994 I had a thyroidectomy and it came back that the smaller nodule was malignant. Fast forward to 2006 and I noticed a change in my left breast; it was sagging more than my right. Something in me knew this was not normal, prompting me to see my doctor. After many tests and a biopsy, I soon learned I had stage one invasive breast cancer. Two years later, my thyroid cancer decided to make a special reappearance.

My doctor explained to me there could be stray cells left behind from the thyroidectomy, but the Synthroid was supposed to suppress any cancerous cells from growing if any were left behind. After some grew, as shown on the thyroglobulin blood test years later, my oncologist felt that the endocrinologist had not adjusted the Synthroid dose to keep them suppressed enough. We decided that best course of action would be radioactive iodine treatment.

Blood in my urine

In 2016 at 56 years of age, one evening while returning home from work, I used the restroom, and when flushed, I noticed an alarming amount of blood the entire toilet was full! I thought, “How did I get my period again?” I had not had a period in years, and what was even more strange was that there was no cramping. I was very confused, so I checked my temperature, thinking maybe I had a urinary tract infection. Since I had no fever, I searched for what could cause that much bleeding. My Google search said it could be a UTI or kidney infection; the other possibility was bladder cancer. I thought to myself it was probably cancer, I made an appointment with my doctor and decided to go from there.

Once I arrived at my appointment, my doctor ran a test for an infection which came back clear. I was sent out for a scan to check for kidney stones, and to no surprise, they were none. After the scan showed no signs of kidney stones, I had to follow up with a urologist. When I met with the urologist, she informed me one of the chemo treatments I received in the past could be linked to bladder cancer. I later spoke with my oncologist, and they informed me that my prior chemo dose was only a 0.01% risk for additional cancers because it was the smallest dose for the shortest amount of time to still be effective. I left my appointment with another date to return, but this time it was for a cystoscopy.

Getting a cystoscopy

I did not know what to expect from the cystoscopy because I was unfamiliar with the process. While lying on the table, on the monitor in the room, I remember seeing what looked like a sea coral in my bladder but it was a tumor. They could not biopsy the tumor during the procedure, so I was scheduled to have a TURBT, an outpatient procedure given under general anesthesia 4 days later. 2 weeks later, I returned for the  results and found out that I had non-muscle invasive, high-grade bladder cancer and carcinoma in situ, both of which were aggressive.

I now had bladder cancer.

The first tumor we saw that looked like sea coral was papillary, and it grows up from the lining, and the other one, CIS, was flatter. My doctor said, “Unfortunately, they are both high grade,” so she started me on six weeks of BCG, and after my bladder healed a little bit, they went in and did another cystoscopy. Unfortunately, I still had CIS cells. So, she said, “The next treatment is to repeat the six weeks of BCG, but we’ll add interferon, and hopefully, that’ll take care of it.” I was terrified to go back for the scan after that because I thought they would take out my bladder if they still saw cancer cells. I was trying very hard to keep my bladder.

BCG plus interferon treatments

Going into my following scan, I was scared. I hoped the second round of BCG with the interferon got rid of those stubborn CIS cells.

The scan came back and fortunately, I was cancer-free and have been cancer-free since. I did go through what is called the maintenance phase of BCG, so I received it first every three months and then every six months for three years from that point on. I was getting cystoscopies to monitor for recurrence but am happy to say I have graduated to yearly monitoring.

Help from my sisters and friends

As stated at the story’s beginning, I maintain a positive attitude and outlook on life. Do I get a little nervous right before my scans? Of course, but that quickly fades. I have two older sisters and very supportive friends who have been amazing at helping me which made it easier.

I have always been independent, but one of my sisters would come and drive me to my appointments and treatments. When my oncologist let me know the side effects from the BCG and interferon might be harsher, being the concerned big sister, she stayed with me the night of treatment to ensure I was okay. My neighbors would also stop by and bring me meals. I am so grateful for the outpouring of support from my friends and family.

Giving back through Survivor to Survivor

Seeing the love and support I received helped me decide to become a BCAN Survivor to Survivor volunteer. Survivor to Survivor is a BCAN program that matches newly diagnosed patients with those who have been impacted by a similar diagnosis.

Years ago, you would hear the word cancer, and it was, a lot of times, a death sentence. People are terrified by a cancer diagnosis and understandably so because potentially dying is frightening. I am not going to say that my journey was easy, but I also feel that after everything that I have been through, I am smiling and healthy. I hope that my story serves as an inspiration to help someone who is scared see there can be a positive light at the end of the tunnel and there is something to be hopeful for.  I hope my story conveys that.

One day at a time

With any type of cancer diagnosis, there is the fear of the unknown, the fear of going through something that will be painful, both physically and emotionally. I would recommend to other bladder cancer patients and survivors, to try and take it one day at a time, and remember, you are a strong person, and you will get through it. Do not be afraid to rely on other people if you need their help.