Living With Lynch syndrome: The Emotional Rollercoaster by Guest Blogger Kristen Lummis

Living With Lynch syndrome

It was just about a year ago that I started going crazy. Ten months out from a devastating cancer diagnosis and a subsequent Lynch syndrome diagnosis, I’d been holding pretty steady.

At one point, in the first months after my surgeries, flush with hope and my oncologist’s report of NED (no evidence of disease), I was heard to say: “cancer has made me a better person. I put on the best face possible. I told myself I wasn’t bitter. I told myself that I needed to be strong for my two teenage sons. I told myself that Lynch syndrome didn’t have to be a death sentence, philosophically recognizing that life, in itself, is a death sentence. I tried to be mindful and I tried to live in the moment.

My job, as I saw it, was to control the inputs that I could control. I lost weight. I became more fit. I started sleeping more. My diet became plant-based and I chose one bit of chocolate each day over alcohol. It’s possible that I was as healthy as I’ve ever been. Except that I wasn’t. My mental health was a wreck.

Eventually winter turned to spring, and the date of my cancer diagnosis drew closer, many days became anniversaries. There was the day I broke my arm and dislocated my shoulder. The day I realized, while recuperating on the couch from said broken arm and dislocated shoulder, that I was bleeding at times when I should not have been bleeding.

There was the anniversary of the coffee I had with a close friend who, based on the symptoms I described, told me to go see a doctor. And then there were the medical anniversaries: the exam, the ultrasound, the biopsy, the results. Each day became more significant than the last as my date of diagnosis approached.And as this date drew closer, I became emotionally frantic. In my mind, every conversation with every friend or stranger led with me saying “I had cancer. I have Lynch syndrome. It sucks. I may look okay, but I’m not. And no one cares.”

On nightly walks, I’d wear my husband out. I’d cry. I’d share my fears. I’d complain. And I’d seek his attention. Like the ultimate caregiver that he’s been from day one of my illness, he’d comfort and console and he’d listen. And then I’d feel guilty. By all accounts, I was healthy. So why couldn’t I get the disease out of my head?

Finally, on day after yet another nightmare in which I revisited the moments prior to surgery and the interaction with my oncologist, I’d had enough. I went to a counselor.

Working Through More Than I Thought

When I tell my most trusted friends that I’ve been seeing a counselor for nearly a year, they always wonder why.

When I tell them that I am suffering from fear and anxiety related to cancer and Lynch syndrome, they often look a bit quizzical.

And the conversation goes something like this.

“But you’re okay right? You don’t have cancer anymore.” And technically, I am okay, but as I’ve learned from other cancer survivors, even if we have no evidence of disease, we still carry the emotional scars of cancer and a fear of recurrence. It’s part of our permanent baggage. Lynch syndrome adds another dimension, another load, another rather large and unwieldy bag to our burden.

So when I went to my counselor, Evelyn, and unloaded all my feelings, it was relief to hear from her that she understood. She’d had cancer herself just one year before.

For 6 months, we worked through my anxieties about cancer and Lynch syndrome, my guilt at having possibly passed Lynch syndrome to my sons and uncovered numerous difficulties within my family.

While you might think that having a genetic condition could bring a family closer together as a rallying point, a shared experience, a circling of the wagons in a measure of protection and love, that wasn’t my experience.

My mother, who passed the mutation to me, has never had cancer. But having been raised by my grandmother, who suffered numerous cancers, my mother reacted to my news with visceral fear and mind-erasing denial.

Post-surgery, she barely visited me, although I live just 5 miles away. As the months went on, she refused to talk about Lynch syndrome with me or her doctors. Seeing a genetic counselor and undergoing recommended annual screenings was out of the question.

Although I have a brother, he’s adopted. I have two cousins who are positive for Lynch, but they are not cousins with whom I’m close. Finding Georgia and this community were a lifeline. It felt so good to realize I wasn’t alone.

As my confidence in myself, and my ability to process my feelings grew, I began to be less sad. The tears were less frequent, and except for the weeks leading up to my biannual check ups at Mayo Clinic, my stress level went down.

Best of all, my oncologist moved out of my head. Counseling had helped me regain my better self.

It’s Never Over

While I wish I could say that in this second year of my diagnosis, I have everything figured out, that would be a lie. I’ll never have it all figured out and I’ve become accustomed to moments of shock and awe when I think about what I’ve been through.

Every once in awhile, the realization of cancer and Lynch syndrome stops me in my tracks. It comes from nowhere and takes my breath away.

In November, my counselor Evelyn died. She had an inoperable recurrence of breast cancer. It broke my heart. Not only was she a trusted professional who helped me with some of the most intimate pain in my life, but she was a friend. She was a sister in survivorship who didn’t survive. Her death knocked me to the floor.

A month ago, as I was getting ready to return to Rochester for yet another cancer check up, I developed shingles from the stress. My family doctor recommended counseling. And so, I returned to my journey. And while my guide at this time is someone new, counseling helps me to remember the essence of who I am.

I’m not Lynch syndrome. I’m not cancer.

I’m me.

And I’m valuable.

Kristen Lummis

Kristen is a freelance writer based in Colorado, with a professional focus on family skiing and adventure. She blogs at


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