Len’s Story: “I noticed blood in my urine, and I said, This is really not good, period.”

A bladder cancer diagnosis was the last thing Len Magnus expected to hear after seeing blood in his urine. His journey has not been easy, filled with many medical procedures, but he believes one of the things that helped him overcome his diagnosis was being able to be part of a community where he did not feel defined by this disease: “I don’t feel that my bladder cancer journey has been much of an impediment to the way I want to live my life.”

Here is Len’s story:

My journey started when I had brownish urine before I had visible blood in my urine. I called my partner over and said, “What the hell is this?” He said, “I don’t like the look of this at all.”

I still stalled, which is not my personality, by the way. I’m not afraid of going to doctors, but I thought I was maybe having too much chocolate ice cream or something.

On September 10^th, 2019, I noticed blood in my urine, and I said, “This is really not good, period.”

My primary care doctor did some initial chest X-rays, then referred me to the Urology Department of Presbyterian Hospital in Albuquerque, New Mexico.  The doctor did a cystoscopy and a TURBT (trans urethral resection of bladder tumor) and said, “You have bladder cancer. It’s non-muscle invasive, but it‘s high grade.” This was scary news.

She added, “You have a diverticulum sticking out of your bladder which also has cancer in it in addition to other cancer in the bladder.”

She started me on a course of six BCG treatments almost immediately. They made me a little ill every night that I had them but I was okay the next morning each time.

I was very frightened during all of this. I didn’t know what it was all about. I never smoked or worked with chemicals. I thought to myself, “Why did I get bladder cancer?”

When I saw her following my cystoscopy and TURBT, she said the cancer, if anything, either was the same or had gotten worse despite BCG treatments. She then said, “I have a colleague at the University of NM Hospital (UNM) I want to consult with.”  This was Dr. Michael Davis, who eventually did my bladder removal (radical cystectomy).

She said, “I spoke with Dr. Davis, and he believes you should have your bladder removed through a radical cystectomy with an ileal conduit.”

And I thought, “I’m not doing this without getting a second opinion.”

So I booked a flight to Phoenix and I saw Dr. Scott Cheney at the Mayo Clinic. He did his own TURBT with blue light since using it during a TURBT provides doctors with a much clearer picture of which cells are cancerous, allowing the doctor to do a much more accurate removal of malignant cells.

Afterward, we had a lengthier conversation where he said, “I’m telling you what I would tell my wife, my daughter, my son, my child, get your bladder out.”

I asked, “Why are you so definitive?”

He said, “The recurrence rate for bladder cancer is in the 70% range. You will hear stories that someone took a new drug regimen and has NED, no evidence of disease, for many years, and it’s all wonderful, but I also see failures where the tumor has come back and has metastasized.”

I then called the University of New Mexico hospital and spoke with Michael Davis, who was the doctor who performed my radical cystectomy with an ileal conduit. He might or might not have been willing to create a neobladder for me, but I told him I didn’t want it. When I heard that I might have to catheterize myself daily, if I got a neobladder, I lost interest in that option.

My radical cystectomy was done on July 29, 2020, five months after COVID hit, and that was done at the UNM Hospital in Albuquerque, New Mexico by Dr. Davis. I felt as though my education in the hospital about how to put on a pouch was almost non-existent. Fortunately, my partner was there with me when we did a pouch change.

When it came to coping with my diagnosis in general, I don’t think I received proper psychological counseling about what was going to happen to me, or what my life was going to look like, nor was I told how my daily life would change. Was this going to be very difficult for me? Were there going to be embarrassing moments? As it turns out, however, it has not been that much of a burden.

This is where BCAN was very beneficial. I went on Google and did a search for bladder cancer and discovered the organization that way.

I began using the word “journey” rather than anything else because I heard that phrase from BCAN.

I think it’s important to network with other people. It’s important to hear their stories because bladder cancer is scary. BCAN provides a number of videos that allowed me to learn a lot, and not feel so ignorant about the surgery I had.

Pretty soon after my surgery, I joined BCAN’s Survivor to Survivor program as a mentor to newly diagnosed patients. I connect with about one person per month. Most of the people I talk with are men in their 70s who’ve been diagnosed with high grade, non-muscle invasive bladder cancer. I give them the best advice and counsel I can based upon my own experiences. I tell them everything I can. I say “If you can possibly go home with a wound and ostomy care nurse, a visit scheduled in two days, do it. Insist on it. Know that in the initial period, you’ll probably have some urinary leaks. You should have an emergency kit in the car.”

I tell people to always get a second opinion. That’s really important. While this disease can be scary, my personal experience hasn’t been entirely negative. I don’t wake up anymore to urinate at night because I use a Bard night bag. And believe it or not, even though it might sound odd to someone who is a beginner, I don’t get up during the night. It doesn’t disturb my sleep. I’m able to go swimming, bike riding, and hiking. I’ve never had a leak during any one of those occurrences, although you can expect to have them occasionally.

Initially, when I received my bladder cancer diagnosis, I felt complete panic. I couldn’t understand why this happened to me and what I did to deserve this. However, I now have a greater appreciation for the community I have been able to help through this disease. I did not want people to repeat some of the stuff that I went through, the lack of education, the lack of reference to resources. I wanted them to know that they could continue to engage in sports and other activities. I wanted them to know that they could go to a three-hour movie. Three years post-surgery, I don’t feel that my bladder cancer journey has been much of an impediment to the way I want to live my life.  

I am so thankful to BCAN for all the support they’ve given me.