Communication challenges with your healthcare team: Jenna Shillingburg

The room in the breast specialist’s office looked different from what Jenna Shillingburg expected. “I knew something was wrong because there were tissues and pamphlets,” she says. “I would call it their ‘bad-news room.’”

Jenna, then 32 years old, had gone to her long-time primary care doctor because her left breast was swollen and painful. She thought she had an infection. Her doctor was worried by what he saw and sent her right away to a breast specialist. “That was the level of communication and concern I was used to when it came to healthcare providers,” Jenna says.

At the specialist’s office, Jenna had a mammogram, an ultrasound, and biopsies. The doctor was supportive a week later when they talked in the “bad-news room.” She explained that Jenna had a lump that was stage I breast cancer. As Jenna cried, the specialist held her hand, told her, “You have the best kind of breast cancer,” and reassured her that things would be okay.

Jenna’s situation wasn’t okay. The pathologist hadn’t tested the skin of her swollen breast, which would have shown she had inflammatory breast cancer, an aggressive disease. More missteps and poor communications with doctors and other providers followed, delaying treatment and keeping her from knowing the full information about her diagnosis for months.

Jenna talked with LBBC contributor Robin Warshaw about how difficulties in communicating with her healthcare team affected her care and well-being.

Robin: After being told you had stage I breast cancer, did you start treatment?

Jenna: The breast specialist sent me to a surgeon who specialized in port placement. Then I lost my insurance from my previous job. I had just started my dream job and it would take a month for my new insurance to kick in. Both doctors said, “You should be fine to wait a month.” I missed out pretty much all of September, treatment-wise.

Finally, I saw the oncologist at the beginning of October. She looked at my reports, described the treatment I would get, and said it was not an aggressive treatment. She was going off everything in the pathology report.

Then she did a physical exam. As soon as she saw how swollen and red my breast was, her face changed. She asked how long it had been like this and said it looked like classic inflammatory breast cancer. She ordered a PET scan, CT scan, and port, saying I would be starting a stronger chemo regimen.

I felt shellshocked. The specialist had hands-on contact to the area for 3 hours and wasn't able to identify this textbook case. The surgeon didn't even really look at the area. She just went off the pathology report.

Robin: How did the oncologist explain it to you?

Jenna: She said, “Everything we just talked about is wrong. We're not doing that treatment anymore.” She said she would talk to the pathologist, ask for a retest of the skin cells, and call me later.

We hadn't even gotten home and she called, saying, “You have inflammatory breast cancer.” Everything got dark really quick. That conversation changed my life.

Robin: You began chemo shortly after that?

Jenna: I had the PET scan before my first chemo on a Tuesday and met with the doctor on Friday to see how the chemo was doing. I had three or four nausea medications and none of them was working. Water, crackers, I couldn't get anything down.

I was there by myself, laying on the table, holding on for dear life due to the nausea. The oncologist came in, saw how sick I was, and went over how treatment was going. She wrote me a prescription for anxiety medicine, saying, “Sometimes people throw up because they can't handle the emotions of having cancer.” Then she said I needed a bone scan because she thought I might have cancer in my bones.

I'm a librarian, so with all the research I did, I knew that's incurable. Again I threw up, and she said, “I'm really worried about you. You keep throwing up.” And I said, “You just told me I might have metastatic cancer.”

Robin: What did the bone scan show?

Jenna: It lit up really badly in my hip and rib. It turned out to be cancer. We got the results on November 9. My mom was with me. My boyfriend went to work that day. They wouldn't give him FMLA (Family and Medical Leave Act benefits) because we weren’t married.

I called him when we found out. We’d been planning to get married. He came rushing home and said, “We can do whatever you want to do. We can go on a cruise, we can go to Harry Potter World.” And I said, “I just want to marry you.” So we went to the courthouse and were married that same day.

Throughout the entire time I was going through chemo, the cancer in my hip and rib was what I thought was the extent of my metastases.

Robin: Were there metastases elsewhere you weren’t told about?

Jenna: I was not told everything that was on the PET scan I had before chemo. I talked to another breast surgeon, to see if I was a candidate to have a mastectomy. She said I would be but they needed a scan of my liver because there were spots on it that showed up in my PET scan. I was, like, “What?”

They did a liver CT and one of the spots from the PET scan was no longer there, probably from the chemo response. They said it was most likely cancer.

When I had a follow-up visit with my oncologist, I said, “Why didn't you tell me about the spots in my liver?” And she said, “It wasn't as much of a priority as your bones.”

Robin: How did you react to her saying that?

Jenna: Angry. I was really frustrated. It was like a crumbling of trust. I was extremely grateful because she got me where I was at that moment. I still feel like it's a miracle that I'm alive after missing a month of treatment due to being misdiagnosed.

I have so much loathing for that entire hospital system. I had some really horrible nurses too. I was given goserelin (Zoladex) and when they found out I had bone metastases they started me on denosumab (Xgeva). Nobody explained to me how either of them worked. They were just ordered and I was ordered to show up.

Robin: Did you ask questions?

Jenna: I was such a newbie, I just assumed that somebody would let me know if they knew something.

Robin: You didn’t decide to switch doctors or hospitals then?

Jenna: I still wanted to give the oncologist the benefit of the doubt. I felt she had saved my life, especially because she was able to identify by sight that I'd been misdiagnosed.

I really didn't get fed up until I went to radiation. The radiation doctor said they were going to set up the machine to target my chest, rib, armpit, hip, and tailbone. I asked, “Why my tailbone?” He said there were spots on my tailbone shown in the PET scan and the bone scan, both ordered by my oncologist.

This was at the middle of April 2019 and he was referencing scans from October and November 2018. So that was my last straw. I was actively seeking a new oncologist.

Robin: How did that go?

Jenna: I found an oncologist there, but I didn't care for his style. On my last visit, I could hear him in the hallway, talking about my case. I could hear him saying my last name, my diagnosis. I thought, “Who else is hearing this?” I was sick of it, so I switched hospitals.

Robin: Are communications better there?

Jenna: At my first oncology visit, in January 2020, the new doctor sat with me for 45 minutes, going over my timeline and my treatment. He said when he got the files from my previous hospital, it was like somebody had dropped them and everything was out of order. He was having difficulty piecing everything together.

To this day, every visit lasts at least 20 minutes. He goes head to toe, through his notes, and asks about issues I was having the last time and if they’ve changed. Then he does a full body physical to make sure he doesn't feel any differences. He asks me if I have any questions or concerns or things I want to bring up.

Robin: Could anything be improved?

Jenna: I feel like a lot of oncologists are just trying to attack the cancer and not the full body. They want to prescribe things to help side effects, but I don't always want to take prescriptions. I want a complementary therapy and he doesn't seem prepared for a complementary therapy.

Robin: Have you expressed that to him?

Jenna: I haven't yet. I just feel so grateful to him, again. I don't want to be contentious.

Robin: Looking back, what do you think about not getting complete information upfront?

Jenna: There were definite communication gaps. I still have anxiety because of the way it was handled. I feel like every time I get a scan or go to the doctor, it's just gonna get worse and worse and worse. I need to process information all at once. Just give me everything and I will sort through on my own.

Robin: Have you changed how you communicate with your healthcare team because of your experiences?

Jenna: I realized that I had to stand up for myself. If I wasn't happy with a doctor, I could change it. If I wasn't getting the information that I wanted, I could demand it. If I wasn't happy with who was helping me, I could say, “You're not touching me,” and ask for somebody else.

I realized that I could be my own advocate and that often I had to be. Asking your own questions and demanding quality care is your right as a patient.