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A diagnosis of cancer is hard enough. Then Sandra Kaus learned it should have been caught a year earlier.
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How One Patient Reacted to Her Delayed Diagnosis

By IHI Open School | Friday, May 20, 2016
Sandra-Kaus-delayed-diagnosis

Sandra Kaus, pictured here with her family, was diagnosed with breast cancer in 2013. Then, two weeks later, she learned it could have been caught a year before. “All I could think about was my boys," Mrs. Kaus said. "Who was going to raise them?” We asked Mrs. Kaus, who now serves on the Patient and Family Advisory Council for Quality and Safety at Georgetown University Medical Center, a few questions about her experience.

Tell us a little bit about yourself.

I’m a wife and a mom. I have two boys, 13 and 9 years old. My family is the most important thing in my life. Maintaining their happiness is my number one priority. When I was diagnosed with breast cancer, all I could think about was my boys. Who was going to raise them? My husband and I have a wonderful partnership and all of a sudden I might no longer be a partner. It was very scary to me.

How did you first discover you might have breast cancer?

In 2012, I went for my annual OB/GYN appointment and my doctor found a small lump. She immediately recommended that I get a mammogram, which I did. I never heard anything back so I assumed everything was okay.

The following year, at my next annual, my doctor did another breast exam and realized that the lump had grown much, much larger. I told her about the year before and she looked it up in the computer. Sure enough, the mammogram was documented. She sent me to get another mammogram, but before I could get there, my left breast started to feel like someone was hitting me. After a week of tests, I was diagnosed with breast cancer.

It wasn’t until about two weeks later that I received a phone call from a doctor asking to come to my house to speak to me and my husband. It was then that we discovered that the radiologist had found a spot the year before, and it was where my breast cancer was located.

How did you feel about the delayed diagnosis?

You know, it was hard finding out about the late diagnosis. In fact, I was annoyed that they gave me this knowledge to add to my plate. It was only about two weeks after I learned that I had breast cancer.

First off, I’m Hispanic, I’m curvy, and it took me a long time to start loving my curves. Now I was learning that my body was going to change. Furthermore, I never realized how vain I was until I was diagnosed with breast cancer. My hair is awesome! It’s thick, full, and very healthy. And now I was going to lose ALL of it. Oh! And by the way, someone screwed up — we could have caught your breast cancer last year!

What do you do with that information when you’re kind of screwed up at that moment yourself?

My husband wanted to wait until I was done with treatment to figure out how we were going to respond to this knowledge. On the other hand, I just felt like it was a weight that I didn’t want on me going through treatment. It wasn’t my fault; I did what I was supposed to, so I didn’t want to wonder the whole time what the outcome would be. So my husband left it to me to decide what would be a fair and just outcome.

Did you consider suing the hospital?

I love Georgetown Hospital. All my doctors are there. My late diagnosis was an administrative mistake that had been reviewed and fixed so that it would be less likely to happen again. No one did it on purpose, nor was it pure negligence.

I knew my late diagnosis was an accident, but I couldn’t pretend like nothing happened. My recommendation had to be something fair, yet noticeable. One of the things that scared me more than dying was that I would cripple my family in debt due to medical expenses. We have great insurance coverage, but that 20 percent out-of-pocket cost adds up quickly. So I wrote out the settlement myself: [Medstar Georgetown University Hospital] would pay all out-of-pocket expenses for anything associated with my breast cancer or that can be linked to my breast cancer. They could still make claims to my insurance, but the hospital would pay co-pays. And they went for it!

As for the day-to-day dealings, the doctor who came out to my house made time to see me at all my appointments and we became friends. He was actually the one who recommended me for the Patient and Family Advisory Council for Quality and Safety, so I guess you can say it’s come full circle. Because of my medical accident, I am now helping to prevent further accidents from happening. I am really proud to say that.

Did the delay in the diagnosis make a difference in your treatment or outcome?

When I heard the word, “cancer,” I just wanted it out of me with no chance of it coming back — at all! So I decided on a double mastectomy, and that would still have been my preferred choice if I’d found out earlier. If it had been caught the year before, it might have been possible to have had just a lumpectomy or a single mastectomy, but you never know.

What were some of the best moments in your care? Why were they so important?

I had lots of good moments. My mom and I became so close, and she became close with my family, too.

We also had a party for everything! I knew I would have a hard time when my hair fell out, so when it was obvious and I could not hide it anymore, we had a shaving party. The stylist came to the house and my girlfriends threw a huge bash. It was awesome.

Anytime I went to chemo, whether with my mom or with girlfriends, it was an outing. It was not seen as a day I had to have chemo, it was CHEMO DAY! Crazy, I know. We’d get Panera sandwiches in the morning along with some desserts and bagels. We made sure our drinks were packed and enjoyed it like a girls’ lunch. Two other girlfriends made my family dinner on chemo nights, which was the best gift ever. Since I lived 40 miles away from the hospital, we were exhausted by the time we got home.

All of these actions and many more made me feel so loved. I cried and called my best friend when I found out I had to have a bilateral mastectomy. She quickly reminded me that I had always wanted new boobs and then brought over my favorite chocolate muffins. Then we giggled at the fact that I cried because now I could get the boobs that I wanted. I know this may sound silly, but my friends and my mom made sure that I laughed through my whole treatment.

What advice would you give young health professionals about how they can be compassionate toward their patients?

Pretend your patient is your mom or your dad, or your brother or your sister. Sometimes, they need a shoulder to cry on and sometimes they need a giggle to brighten their day.

Sandra Kaus recently spoke to the IHI Open School Chapter at Georgetown University about her experience as a patient. To learn more about IHI Open School Chapters and find on near you, check out our Chapter map.

You can read more patient stories here.

 

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