5 Things I Wish I Knew at the Time of My Stage 4 Cancer Diagnosis

December 29, 2016 6:00 AM
Tori and her three children walking to school

Three years after learning she has advanced lung cancer, one patient shares some of her takeaways for navigating cancer care.

“Teacher” is one of the many hats Tori Tomalia wears. As a seasoned veteran of the cancer war, she can teach us plenty.

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“Life with cancer looks a whole lot different three years after the diagnosis,” says Tomalia, age 40, who has stage 4 lung cancer.

Here, she reflects on interactions with family, friends and doctors, and on what’s worked and what hasn’t while navigating life with cancer. These are some of her takeaways.

1. Let it sink in.

The “me” of three years ago is very different from how I am today. When I was first diagnosed at the University of Michigan Comprehensive Cancer Center, I was in absolute shock. How could a nonsmoker like me have lung cancer at all, let alone stage 4, incurable cancer? I was terrified. It took about a month to even absorb it — until then, I couldn’t have an intelligent conversation about it.

What I took away from that experience is this: A cancer diagnosis is overwhelming.

If the patient is anything like me, he or she won’t hear or remember anything after “you have cancer.” So even if a patient is nodding, even if a family member is taking notes, doctors shouldn’t assume the patient understands what’s happening. Doctors and patients need to be prepared to discuss the details of the diagnosis and treatment options again and again over several appointments. In my case, both my doctor and the physician’s assistant did a really good job. They were very kind and patient with me.

2. At first, cancer can leave you speechless. Eventually, you’ll find your voice.

Looking back, I wish I had found my voice sooner. We had the results of my lung biopsy in May, but because of scheduling, my chemotherapy didn’t begin until July. At the time, I was too dazed to question that, but knowing what I know today I would never have let that happen. Patients need to ask questions and not hesitate to push back when necessary. Doctors need to expect that, and respect it. I’m probably really obnoxious now — it seems like I question everything — but my care team is too kind to tell me that!

SEE ALSO: Tori’s Story: Finding Cancer Care Through a Rare Genetic Mutation

3. Friends need to find their voices, too.

If you have questions about your friend’s cancer, just come out and ask. And it’s OK to say, “I don’t understand.” It’s much better than whispering behind someone’s back. Maybe I’ve become more open about it over time, but I think the direct approach is best. Today, I feel quite comfortable talking about my cancer.

4. Want to help? Be specific.

It’s great that people ask, “What can I do?” But an open-ended question puts the burden on the patient to come up with something. If you’re sick, that’s a lot to ask. Instead, I find it most helpful when people offer something specific: Can I mow your lawn? Can I come over and do a load of laundry or run the vacuum? Can I pick something up for you at the store? Offer a concrete suggestion.

In the beginning of my treatment, I was incredibly weak. So many wonderful people wanted to help. I was fortunate that one friend stepped up to coordinate everyone, so I didn’t have to field a dozen “what do you need?” calls. She organized everyone offering to make meals or do chores. That was a godsend. I’ve also seen online calendars people can use to coordinate tasks, which would also work.

Tomalia at the business she opened with her husband, Pointless Brewery & Theatre in Ann Arbor.

5. There’s always a reason for hope. Find yours.

You’ve got to have hope. Back when I was first digesting my diagnosis, my sister found a blog by a patient who had been living with stage 4 lung cancer for seven years (it’s now 10 years). Just hearing about someone who was doing OK got me through that initial shock. Whether or not I will have the same experience, it was and is so important to know that it’s possible. I know doctors want to be as honest and direct as they can, but they also need to help patients keep hope alive. They may not realize how vital that little ray of light can be.

For questions about navigating life with cancer, U-M’s Cancer AnswerLine™ is a great resource. Call 1-800-865-1125 from anywhere in the country to connect with an experienced oncology nurse.