Navigating Cancer Care

Chapter 1: Our family’s story

A cancer diagnosis for yourself or a family member, is quite simply, devastating. Once you have a diagnosis and a treatment protocol in place, navigating the treatment journey is really hard.

Having lived the journey as a parent, daughter, friend, colleague, physician in training and cancer researcher, I have a reasonable understanding of this topic. My work has also involved building software products for providers, patients and their families.

Helping patients and families navigate cancer has been a constant in my life for almost 17 years. It led me to medical school and cancer research. It changed the course of what I chose to do with my time. I have a few learnings and thoughts to share.

I’ll break this down into a series of posts. Here is what I hope to share and discuss.

1. Our family’s story. The challenges we faced and how we navigated the journey. Our introduction to care navigation and advocacy.
2. What would a (mostly) complete ecosystem of services for navigating cancer care look like?
3. Are there business models that could support this ecosystem?
4. What are products and services needed to support the ecosystem? Any specific technologies that could help?
5. How do the latest entrants in the cancer care navigation space, Jasper Health and Thyme Care, pitch themselves? Which set of stakeholders do they serve? Where are they on target? Where are they incomplete?
6. Everything else. Promoting equity and access in care, cancer research (with a slant toward pediatric cancer), new therapeutics, treatment protocols & business models.

I’m no expert in all of the dimensions I discuss, and where I feel my insight is shaky, I’ll state it. When I can, I will solicit opinions in areas that are not my areas of expertise. Challenges and opportunities will differ for pediatric vs. adult cancers. And finally, this is a US centric view.

So let’s start at the beginning.

In 2004, our then 3.5 year old was diagnosed with cancer. Acute Lymphoblastic Leukemia. She was our strong one. The kid who’d had antibiotics just once and never even suffered from an ear infection. After a series of seemingly benign symptoms, we landed up in the Emergency Department (ED) of Seattle Children’s Hospital (SCH) and were given the diagnosis.

Before I go any further, our child is healthy today. Our other child is well too. And I’m still happily married to the guy I met when I was a teenager. We are the lucky ones.

Coming back to 2004. We had scarcely processed the information when we had to start making decisions. Would we like to enroll her in a clinical trial? Would we prefer to have her on protocol A or B? A never ending stream of doctors, students, nurses, social workers, insurance/billing specialists seemed to enter and exit our small room in the ED. I clearly remember a social worker coming in with her checklist, asking us if we had a fire extinguisher in our house. I wondered why she needed to know that. We got assigned a pediatric nurse practitioner, Karyn. Karyn was patient and sat with us through the evening, answering questions and handing us tissues. She would be a solid presence for the next many years. She would pull me into patient advocacy and years later, would write a letter of reference for me, to medical school.

Our child started chemo by the end of the day. In the next few days, we learned about the prognosis (good), details of the protocol (overwhelming), side effects (scary), the risk to our marriage (high), likelihood of continuity of our social relationships (poor), likelihood of continuity of our child’s engagement at pre-school (poor), etc. Our child had an active infection. We were trained in giving our child antibiotics via IV (so she could be discharged), learned about all the myriad rules that surround caring for a child with cancer (no Beecher’s fresh cheese, for e.g.) , a printout with detailed instructions on how to administer oral chemo, a bag of miscellaneous doo-dahs (pill crushers, a few flavors of syrups to mask the awful taste, anti-nausea meds, meds for sores and blisters, IV supplies), a list of numbers to call in case of trouble, guidance on tracking side-effects etc. We coordinated care for our other child, travel from India for our moms and shared the news with our friends and colleagues.

Pediatric ALL is one of the success stories in medicine. Kids with favorable prognostic indicators have a 5 year survival rate of >90%. At that time, the stats were a bit lower. Around 75%. Our child had 4 phases of treatment. Active chemotherapy would last 2.5 years.

1. Induction (intense treatment)
2. Consolidation (less intense treatment)
3. Delayed Intensification (intense treatment)
4. Maintenance (less intense treatment)

The first 3 phases would take 6–8 months. Maintenance would last for approximately 2 years after. Induction and Delayed Intensification would be hard. “Be prepared and have a support system in place”, the nurses cautioned.

The next six months were challenging. Frequent hospital trips. ED trips. ICU stays. Our colleagues at work, and parents from pre-school pitched in. Rebecca Laszlo introduced us to her father, Dr. John Laszlo, a renowned pediatric oncologist who helped us get second and third opinions about our child’s care (Duke and St.Jude’s). Paul Flessner, who ran our division at work & Dr. Laszlo introduced us to our doctor, Dr. Julie Park, who would be responsible for our child’s care. Remember that this was 2004. Pre-gig economy. No Uber/Lyft, DoorDash or Amazon Fresh. Prasanna Krishnan, my office roomie ran a list of volunteers for help with errands. Her husband, Kartik, played many games of chess with our son. As did Sanjay Anand. Raja and Madhu harvested the freshest veggies from their garden patch and brought them for our family. Mahesh and Jyoti brought home wonderful meals. Charu’s father in India performed a special prayer for our child at Uppiliappan temple. We were humbled by the kindness of our friends.

In the midst of this, my husband and I learned to cope. After the first six months, we realized that our child would get better. Our child’s particular cancer had a good prognosis. She was teaching us about resilience and good cheer. We had good jobs. We had good health insurance and our child’s treatment center was within an hour of our home. Most nights, she was at home and slept in her own bed. We had a network of friends who were generous with their time.

We became volunteers for causes related to childhood cancer: Bone marrow registry drives for minorities, volunteer sessions for Ronald McDonald House, etc. I started helping other parents navigate cancer.

It started off with Karyn, our oncology nurse calling me one day, suggesting that I meet some families who could do with some support from a family further ahead in the journey. I shared our journey, information on treatment and a lot of practical advice (navigating insurance, navigating SCH, tips on communicating with particular providers, managing treatment side-effects, dealing with school, communicating with colleagues at work, writing to the INS for visa extensions (!), etc. ). I became the “phone a friend” for these families.

This soon expanded to helping adults navigate cancer, setting up a volunteer sign-on site at Microsoft (my employer then) and dealing with broader issues to do with care navigation. Helping adult patients introduced me to other treatment challenges (clinical trial enrollment, challenges with getting second opinions, challenges with specialty pharmacies), financial difficulties , professional roadblocks and personal challenges faced by families of adult patients, including sensitive end of life issues.

In 2007, after my child had a relapse scare, I knew I had to make a shift. I left Microsoft and started the path to medical school, starting off with Bio 101. In 2011 started my MD at the UWSOM-Seattle and spent 2 years at Fred Hutch as a cancer researcher in Dr. Soheil Meshinchi’s lab. I worked on Pediatric AML (more on that in a later post). Soheil is one of the most humble and generous human beings I know, a world class researcher and physician. I am lucky to count him as a good friend.

I continue to help patients navigate cancer. Mostly adults with cancer. As an MD and a former cancer researcher, I can dig deep into the literature and study standard of care, engage with my network to solicit second opinions and do the research on clinical trails that might work for the patient. To date, I continue to be a “phone a friend” albeit a bit better educated on the subject and with a deeper rolodex.

Some learnings over the years.

1. Cancer navigation is crazy hard for the most educated, best resourced folks with stellar health insurance. If you’re less educated (ESL speakers, for e.g.), do not have good health insurance or an in-flexible employer, your life (and your family’s life) can get challenging.
2. Your care will vary based on the health-insurance that you have. Your journey navigating that care will depend on the health-insurance that you have. Strong statements, but true.
3. Second opinions (and third opinions) are a must. You cannot be guided by a worry of what your current oncologist thinks of you getting a second opinion for yourself or a family member. Most oncologists will encourage you to get that second opinion. That’s been my experience.
4. If you need to travel for better care and are lucky enough to be able to afford it, please do. It could save your life. There are organizations that can help with transportation costs, housing, logistics at the new site, etc.
5. Delegate a family member or a friend to be your “eyes and ears” for hospital trips. Check every prescription. Every infusion. Doctors and nurses are amazing. But they’re overworked and they’re human. They will not mind.
6. On a related note, insist on scheduling specialist visits on the same day. If you have a blood draw, an oncology visit and a pain specialist visit — insist on not having to make 3 distinct trips. When we were on the cancer journey, this was not the norm. I know that in the Seattle area hospitals, clustering appointments on the same day, is the norm now.
7. Put together a “friends and family” circle of volunteers. They can investigate clinical trial opportunities, navigate appointment scheduling, talk with your company’s HR on your long-term or short-term disability, call your insurance company, etc. They can also participate in social media groups (for investigating new drugs or trials/ side-effects of protocols/ support networks, petitioning pharma for investigational drugs etc.). It really takes a village.
8. Accept help with the rest of the “undifferentiated heavy lifting” that is part of everyday life (errands, house chores, etc..).

In my next post, I’ll talk about the patient centered ecosystem we need, to support navigating cancer care.

Thanks for reading..