Advanced Colon Cancer Patient Kept Working During Treatment
Julie Self, 47 when diagnosed with stage 4 colon cancer, continued working as a project assistant for a civil engineering firm throughout her treatment
Feeling unwell — really unwell — can make it hard to function at work. Learning that the reason for your pain and nausea is cancer, then undergoing months of surgery and chemotherapy, can make coping with the daily demands of a job even tougher.
Yet Julie Self, a project assistant for a civil engineering firm in Bellevue, Washington, was determined to work as much as she was able to even after doctors began treating her for stage 4 colon cancer that had spread to her liver.
Self was 47 when she was diagnosed — a huge and horrible surprise, given that the median age at diagnosis for this disease in the U.S. is 72 for women and 68 for men. But she is part of a trend of younger people developing colon cancer. Recognizing this change, the American Cancer Society changed its colon-cancer guidelines in May 2018 and now recommends that screening for the disease begin at age 45 rather than 50.
Unlike people who get colon cancer during their retirement years, younger people like Self are likely to be holding down jobs — and dependent on company-provided health insurance.
The great news is that Self, who was diagnosed in December of 2015, has surpassed the median survival rate of two-and-a-half years, no longer requires any cancer-related medications whatsoever, and is doing well at work.
Here she talks to HealthCentral about getting her diagnosis as well as her strategies for managing other people’s expectations at the office, asking for help when she needs it, and keeping those paychecks coming.
HealthCentral (HC): You were just 47 when you found out you had metastatic colon cancer. Were you shocked?
Julie: I had been talking to my general practitioner for a couple of years prior to diagnosis about some symptoms I was having. I would have diarrhea or constipation, and then I started throwing up. I can count on one hand the number of times I threw up in my lifetime prior to this.
My doctor’s response was, these are classic IBS (irritable bowel syndrome) symptoms. You’re not at the age where we really have to worry about colon cancer.
But it got to a point when I thought, there is something legitimately wrong here. If I don’t have someone listen to me I’m going to die from this. In my mind I’m thinking, am I being melodramatic? But I made an appointment with a GI [gastrointestinal] specialist.
When I went to the GI person, she said “OK, I’ll schedule a CT scan.” Immediately she told me, I need to do a colonoscopy, and it needs to be Monday. That’s when they found out I had a tumor that was almost completely blocking my colon.
The first oncologist we spoke to at the local hospital was like, you will likely die from this. He had absolutely no hope for me whatsoever. And I was like, you’re giving up before you even start.
My brother started doing his own digging to find the best doctor for a second opinion. And he said, we need to get you to the Seattle Cancer Care Alliance (SCCA).
We met Stacey Cohen, M.D., at SCCA. Her approach was very different. She told us, the median survival rate for stage 4 colon cancer is two-and-a-half years. However, some people live longer, some less. She was like, I would treat you like you’re stage 3 and see where that takes us. There are different chemotherapy blends that we can try, and if one doesn’t work we move on to the next one. Then we can look at clinical trials.
HC: You went through months of chemotherapy to shrink the tumor before surgery. Were you going to work the whole time?
Julie: I was. I actually didn’t realize how sick I was until the chemotherapy started making me feel better, because it was fighting my cancer. They set you up with so many anti-nausea medications, and I have a pretty high pain tolerance.
I would work Monday and Tuesday and go into infusion on Wednesday. On Friday I would have the chemo pump removed. And I would have the weekend to start feeling better and go back to work the following Monday.
I did that for, like, eight months.
There were some days when I’d feel OK and days when I’d wake up and feel like my whole body was full of cement. I would reach out to the people that I interacted with the most on my team at work and I would say “Hey, there’s kind of an issue with me today, can you guys help me?” And they would pick up the slack a little bit.
HC: In what other ways did undergoing treatment affect your work life?
Julie: Work was all about scaling back expectations. I told [management], I’m not going to be able to work late. Or, there are certain days I’m not going to be here, but I’m going to find someone to help you. You don’t get to call me after hours.
I was very fortunate in that the coworkers around me were extremely protective of me. To the point where if someone had a cold, my coworkers would say, “Don’t go near Julie, you can’t get her sick.” That was awesome.
At some point, though, I was like, I don’t want to be the cancer girl. There’s a fine balance of “I need some accommodation” and “Please, treat me normally, I’m going to tell you if I have an issue. If you start putting on the kid gloves… I’m fully qualified to do my job.”
But when I came back to work after I’d finished treatment, I think people had it in their minds, oh, you’re here now, you’re fine. We can load you up again. And it’s like no, I’ve just been through months and months of hell and my body is trying to recover now and it’s gonna take a while.
Recovering from surgery was much more difficult than recovering from months of chemotherapy. I work in a pretty big building, and I used to average two miles of walking before I’d even go home for the day. I scaled that back as much as possible after surgery because I’d get winded just walking down the hallway. But over time I’ve built my endurance back up.
HC: Let’s talk about health insurance. How did that factor into things?
Julie: I went back to work eight weeks after surgery, which was probably too early. Part of it was motivated by my insurance situation. I was on intermittent short-term disability while I was taking days off for treatment and at a certain point — ironically, the day before I went for my surgery — it transferred over to long-term disability, and I had to pay for my health insurance through COBRA. I was motivated to come back to work as soon as I could because I didn’t want to pay for COBRA anymore. It’s expensive!
HC: Do you have advice for anybody who is trying to hold down a job while going through cancer treatment?
Julie: They need to make sure they understand what their benefits are. I could have stopped working and gone on Social Security disability, but I just didn’t want to. I liked having the routine of going to work. I felt well enough to go to work. Some people do not, and they shouldn’t. If they have a disability benefit they should use that, because that’s what it’s there for.
One amazing benefit of my company is the employee PTO [paid time off] donation policy. I had people at work donating hundreds of hours of their PTO to me that they couldn’t use or didn’t need themselves. That meant I could get my full paycheck even when I took days off. I can never repay those people adequately for what they did for me.
Interview has been condensed and edited.