Jim’s Story: “It’s been a long journey, but I’ve been hopeful all the time. There is a positive out of this.”

Blood in the urine led Jim Rieker to a startling discovery: a tumor in his bladder. Diagnosed with aggressive bladder cancer, swift action was required. He braced himself for surgery to confront this relentless adversary. However, through his discovery of BCAN, as well as guidance from a bladder cancer survivor in the BCAN community, Jim was able to face his bladder cancer journey with a hopeful mindset and believes his story can inspire others to do the same: “You can’t worry about what’s going to happen next. You have to accentuate the positive because there are going to be ups and downs.”

Here is Jim’s story:

In 2022, I had blood in my urine, and I immediately called my primary care provider because I was very concerned. He referred me to a urologist, and I had been going to a urologist off and on because of my age for PSA tests. He said that it could be several things. It could be a UTI, or it could be something else, so he wanted me to go see a urological surgeon in Pittsburgh.

I had a cystoscopy done, and I looked up on the TV during the procedure and I could see that I had a tumor inside of my bladder. I immediately said, “Well, what’s that? What do you think’s going on here?” He said, “We won’t know until we get the results back from the biopsy that we’re going to do and then we’ll see.”

In my next appointment with him, I had a TURBT, where they scraped off the tumor and took a biopsy. I waited for about a week to get the results. When I got the results back, I was told that it was muscle invasive bladder cancer, an aggressive form of bladder cancer. I was going to have my tumor removed.

I decided not to freak out. I just talked with the doctor, and the doctor was very willing to explain everything. He said, “I think we need to have your bladder removed because that’s the standard of care.” He said, “If you want to make sure that you have the greatest chance of non recurrence, then we’re going to remove your bladder. You’re going to have a couple of options from there. You can either have a neobladder or a diversion.”

I was informed in May 2022 that before my bladder was to be removed, I would need to have chemotherapy. There were three different medications of which cisplatin was one of them, and I did chemotherapy every other week for six sessions. I have to say, of all the things that happened during my journey, I didn’t tolerate the chemotherapy very well. I lost 35 pounds. I couldn’t eat. I was nauseous all the time. But I had very good support around me though, and I had other people to talk to help me through it.

Five weeks after I ended those sessions, I had a radical cystectomy. During this journey, I had usually been making decisions by myself, but I did look up BCAN and some other resources. In the middle of chemotherapy, I started talking to somebody very well-known at BCAN who was immensely helpful, Bill Russell. Bill became my ostomy buddy. He helped explain what was going on, and I had a decision to make.

The decision was I could either have a urological diversion and have an ostomy, an Indiana pouch or I could have a neobladder. The Indiana pouch wasn’t much of a discussion. Along the way, I talked to Bill a lot, and I found out as much as I could. That’s where I started reading the BCAN Inspire forums. I tried to get as much information as I could, but one of the things that helped me through all of this was that Bill told me he experienced the same thing I did 12 years prior. When you hear somebody say, “Hey, I’ve been around for 12 years after my diagnosis,” that is an incredible help.

I finished the chemotherapy and then was ready to have my bladder surgery. I decided on a urological diversion. I havean ostomy with a bag now, and that surgery was on September 29, 2022. So I’m over a year out now. As far as I can tell, everything is good.

Following the surgery, everything went well but then you look down and you realize that you have this hole in your gut and that life is going to be different. One of the things I learned from talking to other people, and especially Bill, is to keep a positive mental attitude. I would say that to anybody. You always have to have hope. You can’t worry about the bad things that are going to happen. Things go up, things go down, but that positive attitude helps immensely. It’s infectious and if the people around you see your positive outlook, it helps them support you.

I did have great support through all of this. My wife, Sylvia was very good. She was there through all of this. I have two sons who were also very supportive during this time. They’re both in college. In fact, one of my sons immediately read about my diagnosis and told me about my possible outcomes before my doctor did. I have them to thank and Bill.

Post cystectomy, I had some tests run and December 7^th, 2022. The results were positive with one of the things being the chemotherapy, as far as they could tell, had done its job, and there was no sign of cancer at all. I had my prostate removed as well so the other news was that my chance of survival was very good.

Ever since then, I’ve been part of local support groups. I belong to a general ostomy group, as well as a urostomy one. My treatment and surgery were during COVID, so we met virtually until about six months ago when we started meeting face-to-face.

It’s been a long journey, but I’ve been hopeful all the time. There is a positive out of this. I don’t have to wake up in the middle of the night and go to the bathroom. I retired in August of 2023. So, I’m trying to squeeze the most out of everything that I can. Currently, I’m not receiving any treatment. I walk three miles a day, and I see walking as an extremely important part of recovery and moving forward.

BCAN has helped immensely and I encourage people to read the patient stories –  you can learn about a lot of inspirational things from others. Telling stories is a huge piece to all of this, just listening to other people. Stories are very powerful. They give people hope and they give people understanding.

I watched some of the educational videos on the BCAN website. They are very informative, especially some of the animated videos are very helpful in understanding what’s going on during a bladder cancer journey. The BCAN website is a tremendous resource.

I would tell fellow patients and survivors to not be afraid to gather information. Sometimes it’s hard for people to because things are scary and they don’t want to know too much, but information is good, and good information is even better. So, if you have a resource like BCAN, use it. Join a support group before you have your surgery. Not every location has access to in-person groups, but there are online support groups. I think that’s extremely important.

Although it can be difficult, I encourage others to have positive mental attitude about everything. You can’t worry about what’s going to happen next. You have to accentuate the positive because there are going to be ups and downs. You have to look forward to the best of possibilities. I think that makes a huge difference.