Second Letter to the Newly Diagnosed (Day +1) And the people who love you…putting together the team

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. This is a long roller coaster ride and you’ll need your rest and strength. If you couldn’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 there is another location with earlier availability.  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 can something be done in order to secure times that work for your schedule and the speed you want to ride on the roller coaster. 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 reach out to 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. On the roller coaster, these are the first moments where you can find the hidden controls in the roller coaster car and speed forward or slow down or even change direction.

I was scheduled for a prophylactic bi-lateral 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.  There were many people who were wishing me well and supporting me as I approached my surgery.  Since my surgery was not going to happen, I felt 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 important and I asked people not to call, text or offer advice. I was very specific 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 early stage breast cancers are treated without metastasis or recurrence after 5 years and my mother was a 40 year survivor and my sister was reaching her 20th anniversary. 

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 supported them for years and now I reached out to see how they could help me. And, Sharsheret did not disappoint.  Sharsheret connected me with an on-staff social worker who was the first mental health professional I met on my journey. She was compassionate, 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 was able to specify what I wanted information about (saving your hair, reducing side effects, supporting your teen children while going through treatment, etc) and clarified 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 distract me as I waited for appointments and infusions. I’m not telling you what it is…but it’s sweet. Sharsheret later provide 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 to connect you and to 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 hours drive of a National Cancer Institute Designated Cancer Center (and they are in virtually every metropolitan area), ask for referrals there and 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 a lot 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. When you take hold of the secret controls of the roller coaster car, you can adapt the track.

If you don’t live near any NCI centers (Idaho, Montana, both Dakotas, Wyoming, Louisiana, Mississippi, Alaska), see if you can get a telemedicine consult with one of them. Memorial Sloane Kettering, in NYC, offers this service. That may or may not become your primary care team, but is at least an excellent second opinion.

I live close to both UCSF and Stanford – both NCI Comprehensive Cancer Centers.

One of my friends who received the email had terrific contacts at UCSF and so did one of my sister’s friends.  Another friend asked if she could introduce me to a couple of 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 incredible individual, very direct and called me that evening (still on Day 2).  My radiologist friend’s referral called me that same evening (Day 2) and 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 right information will lead to a better experience.  A smoother ride on the roller coaster.

And all the various inputs were leading towards the same oncologist – Dr. Jo Chien. With Dr. Esserman’s help, Dr. Chien and Dr. Esserman would see me Wednesday after my pet scan. Pet scan was clear (a relief). We had MRIs from multiple time 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 tumor board and Dr. Chien laughed and said “No. Your case is pretty standard. Not interesting enough for tumor board.”  I was VERY glad 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.  The roller coaster starts and stops abruptly. Your first four are your safety belts and cushions – so lean into them. There is a secret control panel for your roller coaster car and I’ll help you find it, grab it and use it to make this ride as easy as possible for you.  I wish you health. I wish you happiness. I wish you peace. You are not alone. 

Read more from Joelle Kaufman | Substack in her “Steering the Cancer Rollercoaster” here.