Annmarie’s Story: I don’t have a bag, I have a prosthetic bladder

I am a schoolteacher at a high school in Mashpee, Massachusetts. I started to have symptoms in May 2018. I was at school and I got a sharp pain in my kidney area and I thought, “Oh, kidney stones.” I knew something wasn’t right. I’m not one that runs to the doctor, but I knew there was something wrong. I went to the urgent care, and they said, “Well, it looks like kidney stones,” but they wanted to send me to the hospital for a more thorough evaluation. Once I arrived at the hospital, they decided to do an ultrasound and some other tests. When the test results came back, they found fibroids and other gynecological stuff. I was told if there was a kidney stone, it passed. I had typical symptoms of having a kidney stone. And they said, “You have a UTI,” which I think is standard for people. So, they gave me antibiotics and told me to follow up with the doctor, which I did.

Once I saw my doctor, they let me know I still had signs of a UTI and gave me the option of staying on the antibiotics, which I agreed to make sure that it cleared up. After the appointment with my primary care physician, I followed up with my gynecologist for the fibroids, and she did an ultrasound beginning of July. They were the ones who found the bladder mass. I remember when she called me. It was on July 2nd. She called, and it was early, at around 8:00 am. You know something was wrong when the doctor’s office calls you that early. She said, “There’s a mass on your bladder. You need to call a urologist immediately.”

I had my appointment with a local urologist in July. Once the doctor took me in, they did a scope and he looked at it. You could see the look of concern on his face when he looked at the nurse. I did not hear him say cancer, but I heard him say, “I’m sorry for this diagnosis.” That is all I heard. The doctor told me that he wanted to schedule surgery right away. They scheduled a resection, which was on a Thursday in July. I expected this to be an outpatient procedure, but I was in the hospital for four days. He did the resection and TURBT, but he could not get it all, nor were they able to get enough for an adequate pathology. I went home Sunday. Back in on Tuesday for another one. I was in the hospital again for another four days and they still could not get it. And at that point, I told him I wanted to go to Dana-Farber [Cancer Center]. He agreed and said, “Yeah, I actually have been talking to a friend of mine who’s a urologist up there and he would be happy to take you.”

I went to Dana-Farber and during my visit, the doctor let me know that they did not want to go back in. They did some scans and thought that the cancer had gone outside of the bladder. To take a better look, I was scheduled for an MRI. Because I am claustrophobic, I had to do the MRI under anesthesia. Even with the anesthesia, I still moved, so they could not get a clear picture.  So, the urologist had to go back in. I am happy that they did because they saw there was some kidney involvement. When they went back in, they were able to get a biopsy. He was also able to clear out the ureters, so there was no more hydronephrosis in the kidney.  I was incredibly grateful that I had the MRI, and the doctor was able to do that.

With everything going on, I met with my oncologist because they were getting ready to start me on chemo the following week. That is when they let me know that my biopsy results came back, and I had stage 1 bladder cancer. At that point, we decided to do BCG. I started six weeks of BCG treatments in September and finished in November. In December, I had to do another resection and a cystoscopy. The cancer had come back with multiple tumors and was aggressive. I was devasted when I heard the news. All I could think about was the bag. I did not want to lose my bladder and have a bag. So, I asked my doctor, “What if I don’t do it?” and he said I will die.

With that in mind, I made up my mind that we would handle this aggressively.  I wanted a neobladder, but because of where the tumor was, the doctor had to take the urethra as well. I ended up having a radical cystectomy with an ileal conduit in January.

The radical cystectomy took about seven hours. They typically perform a hysterectomy as well.  You must be open and honest with your doctor and ask as many questions as possible. Having the conversation with my doctor about sexuality was essential to me because I still wanted to have sexual relations with my husband. I let my surgeon know that was a concern of mine. So, he was able to spare my vagina.

I spent four days in the hospital. I had some issues with my iron, so I did need a transfusion. The first day out of surgery, I didn’t have a lot of pain and the nurses wanted me to get up and start to walk. I saw the ostomy nurse and right away I wanted to learn how to do things myself. She was showing me how to do things and helped me change my bag. I told her, “No, no, no. I need to learn how to do it myself. I never had anyone change it for me. I just decided I was going to take charge.

When I finally arrived home, I was very weak. I did have some skin issues that led to the wound getting infected near the staples. Getting the staples removed from the infected skin was the most pain I had. I did end up needing an iron transfusion. A lot happened post-surgery, but I still got up with my husband and walked, I still made breakfast. My husband would offer, and I would decline. I wanted to do as much as I could for myself. I had the benefit of having an ostomy nurse, which I was so grateful for and key to my success. Because of skin issues, we were trying to figure out what bag worked. It wasn’t just the sore skin but also the blisters. We eventually figured things out.

I was a part of BCAN’s Survivor to Survivor program, so I knew what to expect, which was so important. I had all my supplies; The only thing I wish I had was a shower chair because I was so weak; I thought I would faint. Showering was tough. Having knowledge ahead of time allowed me to get through these difficult times.

I absolutely love my surgeon, Dr. Mark Preston. Dr. Preston was very patient and answered all my questions. Prior to surgery, I had to go in for consults and preop stuff. Dr. Preston met with us the week before my radical cystectomy. My whole family, my husband, three adult children, and my oncologist brother via phone, were all present. Dr. Preston gave us over an hour, answering all 25 plus questions I brought to the consult. He made everything simple for us to understand. Throughout my journey, at least one of my kids and my husband were at every appointment. My support network is phenomenal.

Dr. Preston was the one who referred me to BCAN during my first appointment. I was still in denial and was not ready to look at that. I was still processing. My daughter, who was with us at my first appointment, went on bcan.org and did some research. She came back to me and said, “Mom, you should look at this. That is where I found the Survivor to Survivor program. After my surgery, I attended the Walk to End Bladder Cancer in Boston. One of the other doctors from Dana Farber was there and I met a few more who also supported BCAN.

Having a support system while going through this process is important. Not only did I have my family and friends by my side, but I also went to counseling. Prior to my surgery, I couldn’t talk about it without crying. I was scared. I was devastated. I was embarrassed. I had all these visions of what a bag was. It was a fear of the unknown. So many people, myself included, said, “oh, it’s bladder cancer. I’ve never heard of bladder cancer”. Or when you talk about needing to have a bag, an ileal conduit; “What is that?” I had no clue. I had never dealt with this in my life. After surgery I was still processing everything and I wanted to take some of that off my family, and counseling allowed me to do that. It was so helpful.

I want to make sure when I tell my story that I am letting other bladder cancer patients know that we must advocate for ourselves. Do not settle for an easy explanation for what is occurring. Take those signs seriously. They always say blood in the urine is never normal. So, do not let them say, oh, this is normal, you are of an age. Reach out and ask questions. You are not in this alone.

Accept help. Educate yourself. It is ok to be scared but try not to panic and go to the worst-case scenarios. It is hard to believe, but the human spirit is amazing and having a urostomy is very manageable. If I see someone who lost a leg, would I think less of them because they have a prosthetic leg? Of course not. I have a prosthetic bladder. I had to remind myself; it’s not me. This is a piece of medical equipment. It hasn’t changed me. It will not define you.