Never Out of the Woods
After He Said Cancer | A Memoir
Today was our second visit with the new breast cancer doctor, and I was standing in the patient library adjoining the waiting room. There had been a booklet talking about “cancer survivorship” that caught my eye the last time we were here. Ah! There it was. I picked up the booklet and started to scan the text.
“Cancer survivorship” was a term to describe the challenge of trying to live life with the uncertainty of a cancer diagnosis and the lingering health issues remaining after treatment. My husband didn’t have much anxiety about his health, but he did have several health issues from the cancer treatment – nerve damage in his feet, fatigue, and a low white blood cell count that had yet to recover. He rarely complained, and so life went on as normally as possible.
While he soldiered on, I struggled with anxiety about his health and our future, in the back of my mind. Giving myself grace and letting go of the fear and anger toward the cancer was hard. Few people I knew understood this station in the cancer journey and it was easy to feel alone. I turned the page in the booklet and my eyes drifted toward the heading, “Exercise”. Yes, I probably needed to do more of this.
It had been three and a half years since his diagnosis when he was given a roughly 50-50 chance of living five years. Initially, I had hoped he would live for at least three years so that he could see our daughters move from middle school to high school. Now that our youngest was starting high school in the fall, I was beginning to feel hopeful that he would live to see them graduate.
A medical assistant called his name, and I took the booklet with me, hoping to learn about resources recommended for caregivers. If there was a class for ‘caregiver-cancer-survivorship’, I would have signed up in a heartbeat.
We followed the medical assistant to the exam room. Warm yellow-orange wood paneling decorated the hallway and the office. As ridiculous as it sounds, the colors and textures lifted my spirit. I also trusted the new breast cancer specialist to fight harder to save my husband than the last one. Today, we would also test the extent to which she would be frank with us about his chances.
The medical assistant checked his vital signs and asked the usual questions. How was he doing? Very well. Did we have any questions for the doctor? Yes, several.
After she left, we looked at each other for a moment. There was one question that we had been afraid to ask for a long time.
The door opened and the new breast cancer doctor came in. She had long, straight black hair and was well-dressed. Professional and warm, she greeted us both by first name.
She seemed highly dedicated to her work, driven, and the kind of physician who didn’t miss the details. The patient was first, plain and simple. The sooner a cancer recurrence was caught, the easier it would be to treat. She was aggressive in tracking down any small signs of disease.
“Before I get into your test results, I wanted to start by answering any questions you might have,” she said.
My husband hesitated for a moment and then cleared his throat. I held my breath. It was just a question, but the answer meant everything to our girls. Our family.
“Now that I have lived this long, I am wondering…has my life expectancy changed?” my husband asked with his voice faltering at the end.
I watched her face intently for a sign that she might try to withhold bad news. Perhaps she would flinch or look down, hoping to find the right words.
“Most breast cancers recur in the first two years after the initial diagnosis,” she said maintaining eye contact. “The good news is that you have lived beyond this time.”
This hadn’t been communicated to us before. I hadn’t realized that this was good news.
“However, breast cancer is unlike other cancers in that the recurrence risk never really goes away,” she continued. “Even decades after your initial diagnosis, you are still at risk.”
It took me a moment to take in what she was saying. Her words hung in the air and I slowly turned them over in my mind. Would he never be out of the woods? So, if I kept worrying that the cancer would come back, I might be in a state of perpetual purgatory?
“Your risk of having a recurrence is about 3-4% each year and it is greatest in the first few years after your diagnosis, but even decades later, you are still at risk,” she said.
Whether the cancer might come back depends on many things, she explained. A smaller tumor, fewer cancerous lymph nodes, and an estrogen-receptor-positive cancer were factors linked to a better chance of staying cancer-free. I suddenly remembered that my aunt’s breast cancer came back after she had been ‘cancer-free’ for 10 years. When she developed back pain, the cancer had spread to her bones.
My husband’s main tumor wasn’t big, but he had more than 14 cancerous lymph nodes in his armpit and several deeper in his chest. His cancer was estrogen-receptor positive, which was common in men. As men had poorer survival than women for breast cancer – even when comparing people with the same cancer stage – this might not be helpful.
“I haven’t gotten the result of your blood test checking for tumor DNA yet but expect that it will come back in the next few weeks,” she said, leaning closer to us. “I will call you when we get that first result.”
“As you know, the company requested a wax block of the tissue from the hospital where you had surgery to create a blood test to detect the specific cancer markers from your tumor,” she continued. “This process takes time. Once the test has been developed for your cancer, the results of subsequent blood tests will return more quickly.”
“Although you didn’t qualify to be a part of their clinical trial, I am happy that I managed to convince the company to pay for your blood tests outside the trial because you are a unique case,” she said.
In medicine, you never wanted to be ‘unique’. What she meant was that there was a good chance that his cancer might come roaring back in the next six months.
A few more weeks until we had the blood test result. I had waited so long already. What was a few more weeks?
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If you would like to read other posts, here are a few:
How It Began. This story is the origins of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began
Extremes. The extremes of poverty give me perspective on my grief.
That Ribbon. https://www.afterhesaidcancer.com/p/that-ribbon
The Day He Nearly Died. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died
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Thank you for sharing. My grandmother and mother passed away from leukemia, they were both amazing human beings, my grandmother was 55 when the cancer took her and my mom was 41. I’m happy to see your strength in all of this as I know firsthand how hard it is. You’re an inspiration to many!
Hang in there!! Yes you’re never out of the woods, but you can definitely make the best when you’re not in the woods!!