Second Letter to the Newly Diagnosed (Day +1)
And the people who love you...putting together the team
Dear A,
You made it through the night. Perhaps you couldn't sleep, but I hope you did. You will see a lot of pitches in these upcoming innings, and you'll need your rest and strength. If you can't sleep, try Karina Goodwin's Guided Meditations for Surviving Cancer. She's a survivor, too, and her meditations are short, compassionate, and helpful.
Now that you are awake, the next step is to figure out the next step. My surgeon recommended a PET scan to see if the cancer had spread. On cancer diagnosis day + 1, I endured hold times and unattractive options until I found a way to get my PET scan on cancer diagnosis day +2. This is normal, A. You may need to ask people if another location is available earlier. Unbounded, cancer can take over your life. That might be okay! It was not what I wanted. My mind and body do best when I exert some control over the ride by setting the pace. You may need to ask where else something can be done to secure times that work for your schedule. If you haven't guessed, I had the accelerator pressed to the floor because I believed that the sooner I could start treatment, the faster it would be over.
The big next step is going to involve an oncologist. When the surgeon called me and shared my diagnosis, my response was something like:
You have got to be kidding me. That sucks.
Who do you recommend as an oncologist for me?
After telling my first four (see the first letter), on Day 0, I reached out to my longtime breast radiologist for a referral. I asked my sister to contact her extensive network for a referral. I was looking for a doctor that multiple people recommended, and I was looking to mobilize my network to expedite my time to treatment. In the batter's box, these are the first moments where you can have a say in your approach and rely upon your strengths to face the pitch and hopefully crush the curveball.
I was scheduled for a prophylactic bilateral mastectomy the day after I was diagnosed. I had told virtually everyone in my life that I was having that surgery and would be out of touch for 4-6 weeks. Many people wished me well and supported me as I approached my surgery. Since my surgery was not going to happen, I felt an urgency to update the immediate world about what was happening. You probably don't have that urgency - feel free to take your time.
The day after my diagnosis, I went to Caring Bridge and started my first post, "Curve balls and unexpected journeys." I did NOT share it on Facebook. I did share the link in a mass email (everyone BCC) as an update. I offered the Caring Bridge as a way to stay informed and offer support. Setting expectations is essential, and I asked people not to call, text, or offer advice. I was particular that I did not want people searching Google and sending me links. I was open about what I didn't know about stage, treatment, and doctors. I never asked about prognosis and still haven't - I assumed that I was going to live. After all, the vast majority of early-stage breast cancers are treated without metastasis or recurrence.
The other thing I did on this first day was reach out to Sharsheret - an organization focused on supporting people with breast cancer. I've kept them for years, and now I've reached out to see how they could help me. And Sharsheret did not disappoint. Sharsheret connected me with an on-staff social worker, the first mental health professional I met on my journey. She was compassionate and knowledgeable and helped me navigate these first days. She and her peers are available to anyone facing breast or ovarian cancer. Aimee, her name, suggested I create a personalized breast cancer kit through Sharsheret. Using their website, I could specify what I wanted information about (saving your hair, reducing side effects, supporting your teen children while going through treatment, etc.) and clarify what I did not need. My Sharsheret binder was a helpful resource, and I loved the surprise inside it that helped focus my mind and distracted me as I waited for appointments and infusions. I'm not telling you what it is…but it's sweet. Sharsheret later provided a mastectomy kit that was absolutely clutch with managing my post-operative recovery.
There's a hidden benefit of letting your community know what's happening - you may discover people who know people - oncologists, surgeons, donors, health care concierges, other survivors - and they often connect you and help. Try to accept that help until you find your medical team. And if you don't know anyone and there's no one in your network - here's what you can do.
Definitely ask the diagnosing radiologist or other doctor for a referral. If you live within 2 two-hour drive of a National Cancer Institute Designated Cancer Center (and they are in virtually every metropolitan area), ask for referrals, go to their new patient registration form, and complete it. This may be a hardship with childcare and work, but it is worth the headaches. Cancer treatments are most successful with medical teams who treat many of them. My mother was treated for one of her cancers by a team at Stanford while the chemotherapy they prescribed was administered in Florida. Developing and practicing your approach to curve balls can transform your experience and influence your outcomes.
If you live far from any NCI centers (Idaho, Montana, Dakotas, Wyoming, Louisiana, Mississippi, Alaska), see if you can get a telemedicine consult with one. Memorial Sloane Kettering, in NYC, offers this service. It may or may not become your primary care team, but it is at least an excellent second opinion.
I live close to UCSF and Stanford - both NCI Comprehensive Cancer Centers.
One of my friends who received the email had terrific contacts at UCSF, as did one of my sister's friends. Another friend asked if she could introduce me to some local survivors to find out about their oncologists. My sister's colleague turned out to be a well-connected UCSF and connected me with an incredible breast surgeon who is also the Director of the UCSF Breast Cancer Center. Dr. Laura Esserman is an astonishing individual, very direct, and called me that evening (still on Day 2). My radiologist friend's referral called me that same evening (Day 2). It offered the perspective that I don't need to start treatment tomorrow - a couple of weeks to get all the pathology right would lead to a better outcome. The waiting is the hardest part, but ensuring you have the right team for you and that team has the correct information will lead to a better experience.
All the various inputs led to the same oncologist - Dr. Jo Chien. With Dr. Esserman's help, Dr. Chien and Dr. Esserman will see me on Wednesday after my PET scan. The PET scan was clear (a relief). We had MRIs from multiple periods to see that the tumor generated itself only in the last six months. We had the initial pathology from the biopsy, so my medical team knew what treatment they recommended and could explain the timeline to me. I was even assured that my metabolically aggressive tumor would ravenously devour the chemotherapy and was likely to be very responsive to treatment. Luck!
72 hours after the news of my cancer, I had a medical team at a world-class hospital and a treatment plan that was the standard of care. This is a blessing and one of the first of many instances where I felt like the luckiest woman in the world. I asked if my case would be presented at the tumor board, and Dr. Chien laughed and said, "No. Your case is pretty standard. Not interesting enough for tumor board." I was happy to be mundane. You may not have your team organized in 72 hours, but you probably will in the first 7 days - and that's fast enough.
A - it's a lot in the first few days. All the pitches are unfamiliar - curveballs, sliders, knuckleballs, change-ups, and even some fastballs. Your first four are core to your dugout - so lean into them. There is a mental game to facing the cancer curveball, and I'll help you learn it, adapt it, and use it to make these innings as easy as possible for you. I wish you health. I wish you happiness. I wish you peace. You are not alone.
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