My introduction to the world of being a breast cancer patient started with a phone call. I was at work on a Friday afternoon when my OBGYN called to break the news: my biopsy did indeed show cancer. She told me I would be hearing from a nurse navigator to set up my next set of appointments, then asked if I had any questions. I thanked her for telling me and said I was sure I would have plenty of questions moving forward. But the real question going through my mind was: Is this really happening?
I am sharing how I got through the first few weeks after diagnosis in the hope that my experience and recommendations may help others.
Lean on your nurse navigator.
I wasn’t even sure what a nurse navigator was until mine called to get the proverbial treatment ball rolling. Julia introduced herself and told me she would be helping me get the appointments, tests, and procedures I would need. She had an office in my medical oncologist’s office, and her role was to help patients navigate the maze of tests and procedures that follow a cancer diagnosis.
The seriousness of my diagnosis started to dawn on me when Julia rattled off the list of doctors I would initially need to consult: a medical oncologist, a radiation oncologist, and a surgeon. What I would realize after those first few appointments is that a nurse navigator is a traffic cop, a counselor, and a first responder, all rolled into one. I had the benefit of three amazing navigators who helped me get through treatment. If insurance was being difficult, they could fix it. If I couldn’t get an appointment when I needed it, they would find another site that could fit me in. Nurse navigators are indispensable for making heads and tails of what is happening and why.
Bring someone to initial appointments–or all appointments, if you want.
As a newly diagnosed cancer patient, I was overwhelmed. What were my treatment options? Would I need chemo? What side effects should I expect? How long would my treatment last? What was special about my diagnosis? What did we know about my disease?
I’m single and live far from my family, but I’m fortunate to have a fantastic community of friends. I asked my friend Sara to come with me to the first few appointments. At first I felt guilty, since she’s a lawyer and would be missing a lot of six-minute billing increments to sit with me in doctors’ offices.
However, when you get sick, the people who care about you feel helpless. Asking someone to do something–like join you at appointments–gives them something specific and actionable to do. I learned that when I asked for help, I was giving the gift of being useful to the people who wanted to help but didn’t have a cancer-curing magic wand at the ready.
And when I didn’t ask for help, I was the one hurt by that choice. When my chemo port was put in, I had to be at the hospital before 6:00 am. I took an Uber there, even though I had friends who were early birds with flexible schedules. I didn’t want to be a bother.
Walking into that hospital by myself was really hard. Sitting in the gown with a huge needle in my arm waiting for the procedure sucked. I was in an emergency-room-style bay with beds separated by curtains. I could hear muted conversations and soft, ironic laughter coming from the beds around me. I managed to make myself feel really alone. I had arranged for a ride home, and my friend, Mrs. H, patiently waiting for me when I emerged from the procedure is one of the most welcome sights I can remember. There was a huge sense of relief that I could share with someone what was going on. I wasn’t alone anymore.
Set ground rules in advance.
When bringing people to appointments, I strongly advise setting ground rules about their role: Are they just providing moral support, or is it okay if they ask follow-up questions? When I brought Sara along, I wanted her to take notes and ask questions, because I knew I would likely be upset–and indeed, I cried at each of my first three oncology appointments.
Having another set of ears and eyes to understand what is necessarily a complex and stressful process is invaluable. Set yourself up to feel in control by deciding in advance how you want the person to effectively support you.
Write down your questions.
I recently came across the notebook full of questions that I brought to my first medical oncology appointment. It’s not in any organized order and is more a stream of consciousness. I remember writing this list and wanting to get down everything and anything that came to mind. I consulted it frequently during the first few appointments and am grateful I had it.
With the benefit of hindsight, I would suggest asking your doctor the following high-level questions:
- How unusual is my diagnosis? Is there anything unusual about my disease that I should know?
- How standard is the treatment that you are recommending? (This is applicable for surgeons and oncologists).
- How long is treatment going to last? What are the different therapies I will undergo?
- How do the different doctors (medical oncologist, radiation oncologist, and/or surgeon) overseeing my care share information?
- What are the common side effects to expect?
- Can I work during treatment?
- What are the measurements you use to track the progress/recession of the disease? How will we know if treatment is working?
- Are there clinical trials that I should be aware of?
- How many patients with my diagnosis have you seen?
- How has treatment for my type of diagnosis changed in the past five years?
The first question I asked my medical oncologist (the first doctor I saw about my treatment) was “Is this going to kill me?” I asked it with tears streaming down my face. I had been psyching myself up to ask, and I was terrified of the answer. What you want to know about the prognosis is up to you; it’s a terribly personal decision. There may be things you aren’t ready to address at the beginning, which is another reason to set ground rules with anyone who comes along to appointments.
Asking a bunch of questions is the best way I have found to decide if I trust a doctor. Those who have patiently, clearly, and honestly answered my many questions have all turned out to be truly outstanding physicians. If a doctor is unwilling to answer questions, you have every right to seek care from someone who will address your needs.
Be prepared for lots of appointments.
Chest x-rays, heart ultrasounds, and port placement are only a few of the myriad appointments that came with my diagnosis. Before the hard work of treating the disease starts, the doctors need to baseline a lot of other things. I wasn’t prepared for the number of needles, images, and forms I would face as a newly diagnosed cancer patient. I found that bringing my iPad and listening to music helped me deal with the monotony of waiting rooms that always seemed to be 20 minutes behind.
It’s almost impossible to be prepared for the whirlwind of events that come with a serious diagnosis. I had to develop a new mindset as a patient. I was sick, and the things that needed my focus was whatever would get me through treatment. It was hard to accept, but even now as I continue to do the ongoing monitoring and follow up, I accept that I have had a serious disease and I need to do whatever is necessary to stay well.