Finding the Right Oncologist

I knew nothing about metastatic breast cancer (MBC) before my diagnosis in July 2020—even in the early months that followed, when I thought I only had two years to live. What I have learned since then has a lot to do with my fierce self-advocacy today and my call to patient advocacy.

I learned the hard way not to assume that a doctor or medical “team” is getting it right, or that they aren’t missing or ignoring important information. I truly wish we all got the care we need and deserve, but that was not my experience, especially during my first one and a half years of treatment.

Navigating a challenging start with my first oncologist

I never should have started on chemo as a first-line treatment, and I am still angry that I was subjected to unnecessary toxicities. It seemed to age me overnight. My teeth are messed up and I have wrinkles I never had before. My appetite only recently returned, along with my ability to eat favorite foods again without the texture or smell causing me to gag or become nauseous.

While I did need to lose weight, I lost 40 pounds without trying during my first year of treatment. Plus, I lost my hair, physical stamina, and lung capacity. I suffered through other challenges like hand-foot syndrome. I braved video job interviews when I looked sick and struggled with what to say to prospective employers that my bald head didn’t already disclose. All because I didn’t know any better.

My first oncologist insisted that treatment is exactly the same regardless of breast cancer stage. I only learned later that this is not the case. But it was her snapping at me and making “off-the-cuff” changes to my treatment plan that made me uneasy.

My port placement was done and chemo was already scheduled before I even had a PET scan. I kept hearing that I was minimally Stage II and, at most, Stage III. It’s not as though “de novo” is rare, as 5% to 10% of all MBC patients are Stage IV from the start. To tell someone they are NOT Stage IV before final staging is negligent. It is also cruel.

Red flags: When the treatment plan felt wrong

I found out about my bone metastasis from reading my own PET scan report the very morning I expected to hear whether I was Stage II or III. I raced to my computer after waking up to a confusing call from a scheduler about a bone biopsy.

Despite the fact that hormonal treatment is the standard, first-line treatment for my HR+/HER2- subtype, grade, and bone-only metastases, my first oncologist still went ahead with chemo only days later. Still, I didn’t know enough at this point to question what was happening treatment-wise.

After my third chemo infusion, I asked this oncologist about my expected lifespan. She told me, “I’m not God,” and that I should “stop thinking about the future.” During this same video call, I asked her for specifics about my cancer. She said, “It is complex,” then refused to explain how or why. When she next told me to lean on my family, friends, and faith congregation, it struck me that she had no idea who she was talking to during our call.

Oh, it gets better. Next, I heard that radiation was suddenly off the table, without any new diagnostic information that might alter a treatment plan. And then she asked, “When is your surgery?”

I yelled back, “YOU tell ME!”

Confronting misdiagnosis and demanding accuracy

The very last question I ever posed to this oncologist was about my inflammatory breast cancer. (Note: I do not have inflammatory breast cancer.) Defensive in reply, she made it clear that she didn’t put that in my health record. I stated I didn’t care who put it there, but it needed to be corrected if it was wrong. Right then and there, she changed my official diagnosis to “female breast cancer, left breast” just to shut me up.

It took me a while to find out what my actual diagnosis was, but it didn’t take me long to seek a new oncologist. I put that search in motion as soon as that video call ended.

I deserve better. And so do you.

Finding safety and partnership in my current care

If you do not feel safe with your oncologist, find another. It does not matter why you feel this way. If it doesn’t feel right to you, it is not right for you. It could be that your intuition knows something you haven’t yet figured out.

When I wanted a second opinion, it was pretty much a foregone conclusion that my insurance company—which was the same as my healthcare provider—would not allow me to seek an outside consult from Johns Hopkins. But this is what I had wanted as early as August 2020.

Reclaiming my agency and switching providers

About six months after this, I made a formal request for a consultation with the MBC expert at Johns Hopkins who is now my trusted and beloved oncologist. My former insurer/provider denied this request, which included my hope to add my new oncologist to my team. So, guess what? My former healthcare provider lost my business.

And, trust me, I looked beyond my current oncologist’s bio when I picked her. Her expertise is inspiring in itself, but YouTube videos showed me her kind and gentle spirit. This is what I needed in an oncologist. I just prayed she could take me on as a patient once I could get out of my first healthcare situation.

It took me another nine months to be able to get to Johns Hopkins, as I had to wait until my insurance was up for renewal. I have been with Hopkins—and my amazing physician-scientist, MBC expert, and patient-respecting oncologist—since late November 2021.

Dr. Stearns is my PARTNER in my treatment and has been instrumental in my move to patient advocacy as well. While there continue to be challenges with the healthcare system as a whole, I finally feel safe. And heard. And known.

This has made ALL the difference.