She and I recently sat down to discuss her experiences. You can read our full conversation below. Personally I was struck by how very simple changes would have made a big difference, such as:
- Explaining what "navigation" means and how patients should use it;
- Structuring survivorship services and care plans around patients' questions; and
- Ensuring patients know where to turn with questions—and returning their phone calls.
My hope is that my friend's experiences will be instructive for cancer center leaders looking to provide a more coherent and coordinated care experience.
Question: What went well about your cancer care experience?
Answer: Overall, I was so glad to find physicians close to home who I trusted with my care and felt personally comfortable with. I feel like I received high-quality clinical care.
It helped that I was in the fortunate position of having a strong baseline of knowledge about how the health system works. I knew it was important to get a second opinion before treatment, though I hadn't realized how beneficial the second opinion was going to be.
It turns out, I had a lot of treatment options. This also meant that I had a lot of decisions to make. Every option has pros and cons, and the differences can be very subtle. So it was helpful to hear two different breast surgeons and two different reconstructive surgeons explain the procedures and give me their perspectives.
Q: What did not go well?
A: There were several points during my diagnosis and treatment when I was confused about what I was supposed to do, and I wasn't able to get answers to my questions.
My biggest frustration was—and continues to be—the lack of responsiveness. For example, after my surgery, I called my oncologist's office to ask when and how often I should come in for follow-up appointments. It seems like a straightforward question, but no one ever returned my call. Frankly, it makes me want to look for a new doctor.
Q: Can you give some other examples of when you didn't have the information you needed?
A: The first time was after my diagnosis. I didn't know which specialists I should be making appointments with. I guessed that I should meet with a breast surgeon, and so I went ahead and made appointments with two. But it hadn't occurred to me that I should also make an appointment with the reconstructive surgeon. I wish the schedulers had suggested it.
The next confusion came up after my surgery. The pathology report showed that the margins were close, and my surgeon thought I would need radiation. She referred me to the radiation oncologist at her cancer center, though I sought a second opinion, too.
Ultimately, they determined I didn't need radiation, but it wasn't easy to get to that point. I went to the second opinion appointment with my records, but the radiation oncologist told me that the pathology report didn't include enough information for her to be able to make a recommendation. I ended up as the go-between, having to follow up with both my medical oncologist and radiation oncologist multiple times via email to ensure that a decision was made. That process took more than a month. I have the feeling that no decision would have been made had I not continually followed up to make it happen.
Not only was it time consuming and stressful, but I was constantly questioning whether I was following the right steps or overstepping my role as a patient.
Q: A lot of cancer centers have hired patient navigators specifically to address some of these gaps and help with coordination. Did you have access to a navigator?
A: Yes, there is a breast navigator at the cancer center where I was treated. But to be honest, I wasn't clear on her role or how to use her. I didn't meet her until after my surgical consults. She isn't a nurse so I didn't think I could turn to her with my clinical questions. It seemed like she was mainly there to schedule support services—for example, getting a massage. Maybe I should have reached out to her more, but it didn't seem like she was in a position to address my needs.
Q: Were there any other services that would have been useful to you during your treatment?
A: It sounds like a small thing, but it would have made a big difference if the hospital where I had my surgery had offered bedside medication delivery or had a retail pharmacy onsite.
My husband was at the hospital with me and planned to drive me home. But because we couldn't get my prescriptions at the hospital, he had to go to a community pharmacy to pick them up. We live in an urban area so parking is a hassle. As a result, that one errand delayed my discharge by several hours. And it just added one more complication to an already stressful day.
Q: I know that you have a high-deductible health plan. Has that influenced the decisions you've made about where to go for care or what services to use?
A: Yes, it's made a difference. Rather than just follow my doctor's recommendations, I critically evaluate each appointment and procedure. If the doctor says to me, "I want to see you again," that's not enough. They need to tell me why I need the appointment, or I won't go.
For the imaging, I did a price comparison, and not surprisingly, found the freestanding radiology center near me is less expensive. So I get all of my scans there.
That said, I didn't take price into account when choosing where to go for treatment because I knew I was going to spend more than my deductible.
Q: Cancer programs have made major investments in post-treatment survivorship services, and you received your treatment at a health system considered to be a leader in survivorship care. How has your experience been post-treatment?
A: Honestly I've been disappointed. After treatment, I couldn't get clear answers about what kinds of follow-up visits I should get or when. I called my doctors, but they didn't call me back.
Finally, I took it upon myself to schedule an appointment in the cancer center's survivorship clinic. I met with an internist, who covered a lot of information with me and gave me a survivorship treatment summary and care plan. But it was more overwhelming than helpful.
Q: Why was that?
A: Well, the document looks like a data dump. It's 15 pages long, mostly cut and pasted information from my medical record, or general information for women with my diagnosis. I'm not sure how I'm supposed to use it. There aren't a lot of actionable recommendations—more just background information. I guess I'm supposed to share it with all of my doctors, but frankly, I can't believe that they'll be willing to sift through it.
Q: How would you redesign the survivorship treatment summary and care plan to make it more useful?
A: There are two things that I would do improve it. First, add a table of contents. I've read through the document in its entirety twice. But I still have difficulty finding specific pieces of information when I go back to it.
Second, I wish it included a calendar specifying when I should have my follow-up appointments and scans. The survivorship clinic told me general things like, "you should have a follow up appointment in six months," but after I left, I realized I didn't know when the clock was supposed to start. Was it six months from my surgery? From the survivorship clinic visit?
Q: Do you have any advice for patients or caregivers trying to navigate the system?
A: A few things. As I said before, the second opinion is really valuable. Everyone should get a second opinion at an academic cancer center. And keep in mind that you might want a second opinion at multiple points in the course of your care.
I wish that I had kept a list of all of the physicians and support staff I met and made notes about what they do and what they could help me with. I collected business cards, but that wasn't enough. The most overwhelming part of my experience was not knowing who to reach out to and how to contact them.
I also wish that I had asked my physicians to give me the citations for the research behind their recommendations. I am a researcher, and so I wanted to do my own reading. But I found that I didn't always know the terminology to use to find the right references.
Attract (and retain) breast cancer patients
Join us on Tuesday, Oct. 2 as we kick off Breast Cancer Awareness Month to learn how to deliver best-in-class breast cancer care.