Scrolling through my inbox, a girlfriend's message stops me. Her daughter—a mother with school-age children—was just diagnosed with her first recurrence (sigh), only months after completing treatment.
Two thoughts interrupt the rush of sadness: My emotional reaction won't help my friend, and nothing I say will change her daughter's diagnosis. So shifting into doctor mode, I prepare to respond by digging through memories of my own first recurrence.
Plucked from the blur of my early survivorship, I vividly recall the moment I heard for the first time the words “It's back.” Like the tunnel vision preceding syncope, my future disappeared. In that instant I knew I wasn't cured and would surely die of cancer. The only thing I remember saying to my doctors is “Don't give up on me.”
In the wee hours of that first night, I stood shivering in my bedroom after being awakened by incisional pain. All my life until then I'd been misusing the word “terror.”
You see, an original cancer diagnosis shatters the normal, adaptive illusion that allows people to know they are mortal without feeling vulnerable all the time. Through that shattering, having cancer feels surreal “like a dream.” In contrast, recurrence means facing a new cancer diagnosis without the comforting cocoon of shock.
This time, treatment is not some vague horribleness ahead, but a return to the dreaded wormhole of needle sticks and pills, side effects and scans, and eternal waiting.
This time, worsening statistics are reflected in the faces of friends and family members. Imagine trying to feel hopeful when people who responded to your original diagnosis with optimism and support now exude palpable pity… or disappear from your life altogether.
If recurrence develops after a short remission, it can feel like beginning another long journey on a quarter tank of gas. The body hasn't had quite enough time to fully recover and the psyche hasn't yet regained confidence in the body. In that sense, a first recurrence is better after a nice, long remission (not that one can choose). Still, “late” recurrence doesn't mean “easy”—it means terrible in different ways.
Looking for the positive, I remember three things: embarking on my second cancer journey already knowing what worked for me—and what didn't—to manage the practical and emotional issues; knowing whom I could count on for help and who would drag me down; and feeling the comfort and strength of tested faith.
With all that mind, I sat up and clicked “Reply”:
My dear friend,
Thanks for your update. How I wish I could beam myself to your side and wrap my arms around you. There's no way to make this an easy time. It's going to be upsetting as you adjust to the news, and until your daughter and her oncologist decide on a plan of action.
Try to stay focused on the tasks at hand: determining your daughter's current medical situation and exploring all treatment options, including clinical trials. Your helping her with the fact-finding and decision-making helps her get good care. And it may alleviate everyone's sense of vulnerability and helplessness—at least a little.
Look for an opening to say, “This is something we knew could happen even if everyone did everything right.” So many patients blame themselves for not doing enough or not hoping enough—a feeling that may smolder on a subconscious level.
If you can, tell your daughter she doesn't have to hold back or protect you. The greatest gift you can give her is a safe place to express any fears, anger, pessimism, and grief—without your trying to fix it or sound upbeat. (Note: Steel yourself beforehand, even if you feel ready to handle her outpourings. And prepare your own safe, judgment-free space in which to decompress afterward.)
As for your grandson, may I suggest you invite him to make a “worry cup” with you? Buy paint pens, playful stickers, and a plain coffee mug. After he's decorated it, give him a handful of pennies. Tell him to drop a coin in the mug each time he says aloud something that is making him sad, angry, confused, or upset—or whatever his heart desires to say. Then, in a way that fits your family's approach to spiritual matters, encourage him to let go. The activity not only helps him, but also clues you in to what's going on in his head. (Don't be surprised if none of his concerns has anything to do with cancer.)
Consider making a worry cup for your daughter and one for you, too. I still have mine! As I told my children, you're never too old for a worry cup.
If nothing else, remember this: Recurrent cancer is a tougher diagnosis to absorb, but it's just another diagnosis. Recurrent cancer is not a death sentence, but an illness that needs evaluation and treatment.
I hope this helps. I won't call you, knowing how disruptive and draining phone calls can be. Just please don't hesitate to contact me 24/7 if you want to talk. I'm only a click or dial tone away.
With love and hope,
For your patients not cured of cancer, their first recurrence can present a treacherous transition. Prevent despair by framing recurrent cancer as a treatable condition—even if the prognosis is poor. Help them to focus on making wise decisions. Boost their confidence by reminding patients how much they know about survivorship, which means they don't have to start from scratch.
Share your confidence that they will adjust with time. Encourage them to nourish hopes of a better tomorrow. And reassure them you will be there for them.