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"An Individual Doesn't Get Cancer, a Family Does"

July 27, 2023

"An Individual Doesn't Get Cancer, a Family Does"

by Mark A. Hicks

Odd how a quote can catch your attention, and you are not quite sure why. However, you soon forget about it until it vividly comes back to mind one day when it profoundly applies to your life.

The headline for this blog is a quote by writer, educator and activist Terry Tempest Williams. The first time I saw the quote, it briefly gave me pause. It was probably because I had known so many families that were affected by cancer, including my late wife’s. But I didn’t give it much more thought.

Williams had lost numerous members of her family to cancer, but I wasn’t reading her books or essays about that. I happened to come across the quote as I was looking up information about her books on nature. I read her stories and other nature writers’ narratives because of my love of the wilderness. I was focused on nature and future plans.

At the time, life was going well and my retirement was not far off. My wife Donna and I had plans to visit and hike every US national park and see as many national monuments as we could. And maybe volunteer at a couple of them. Our plans also included regular visits to the national park where our daughter worked. I was already creating illustrations for the National Park Service as a volunteer, and I was hoping to continue doing so. With Donna being an exceptionally talented educator and fellow nature enthusiast, the opportunities seemed plentiful.

The nightmare begins

Our plans changed forever in November 2017 when Donna was diagnosed with advanced-stage triple-negative breast cancer and a BRCA2 mutation. Terry Tempest Williams’ quote was suddenly very relevant as I became Donna’s caregiver and our daughter found that she inherited the same BRCA2 mutation.

Ironically, Donna first started feeling symptoms on a nature hike. After returning home from that hike, I started searching for answers ahead of an urgent appointment at the breast imaging center she had been going to for years. I’m not sure; maybe it was Williams' quote subconsciously speaking to me, but I felt that I needed to research Donna’s family cancer history ASAP.

I knew both of Donna’s parents had died of cancer but neither one of breast cancer. Her father died of metastatic melanoma but also had non-Hodgkin’s lymphoma, and Donna’s mother died of adenocarcinoma of unknown origin. To make a long and complicated story short, I also knew that a second-degree relative on her father’s side, who was the self-designated family genealogist, had survived a rare breast cancer. So I sent a message asking for details about the family’s cancer history.

It should have never happened

I was shocked and angered to receive a gene sequencing report a short time later from this relative that spelled out a specific deleterious BRCA2 mutation. It also stated, “Each first-degree relative of this individual has a one-in-two chance of having this mutation.” I instantly knew what that might mean and how important that statement was. Donna’s late father was a first-degree relative of this individual. This information had been available since 2010—why was it just being shared now?

I had always assumed that this type of potentially life-saving information would be openly shared within the family. And that the individual’s doctors would alert other family members as well. Naively, I had believed the “duty to warn” applied to genetic cancer risks. But under HIPAA laws still stuck in the last century, nobody has to say a word.

Donna’s cancer was a hellish nightmare. It metastasized rapidly to her spine and brain. And on June 26, 2021, Donna died while I embraced her. A few weeks later my daughter had a bilateral prophylactic mastectomy. Looking into my child’s eyes as they took her back for surgery was indescribably heartbreaking. We both knew her beloved mother should have been there that day too.

Because of what happened to Donna, and since our daughter is a previvor, I have become a determined advocate for hereditary cancer awareness and prevention and a volunteer at FORCE. My focus is on family communication and cascade genetic testing when there’s a history of cancer.

By speaking up, I hope to prevent other families from getting cancer.

Posted in: Stories
Tags: BRCA2 , Triple Negative Breast Cancer , Advanced Breast Cancer

10 Comments

September 29, 2023

Hayley North says:
Mark, thank you for sharing this. I have a different story with some similar themes, we just need someone high profile enough for a Netflix documentary on how appalling then sharing of vital genetic data is - my CDKN2a mutation was known about since around 2005 but I only found out in 2018, in the middle of my own cancer treatment. To say I felt both furious and very let down by doctors is an understatement. I would love to work with you to try and fix this. Hayley

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October 2, 2023

Mark says:
Hayley, I’m so sorry to hear what you have gone through. And yes, I’d be glad to work with you as a fellow advocate so we can hopefully prevent others from getting a cancer that could have been prevented. I have created a page of hereditary cancer awareness infographics on my website at www.MARKiX.net. There is a contact link at the bottom of the page.

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July 31, 2023

Mark A. Hicks says:
Thank you, Debbie! Sharing information is vital in breaking the cycle of hereditary cancer. That’s what I sincerely hope readers will take away from my story.

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September 6, 2023

Jennifer Moriarty says:
I have shared my anger and story with you Mark in my own family's failings. I don't think that people always understand what it means to have these mutations and may not get the support to reach out to family or get rid of the barriers in the way- maybe its family they don't know (or like) or can't find or are ashamed. Maybe Genetic Counselors could do a better job of communicating the importance of sharing the information broadly to those it can help and without shame. I suspect that this neutral stance the GCs seem to take isn't helping. And healthcare providers need to do a better job educating men and women on the importance of 1,2 and 3rd degree cancer histories in their family and determining when a referral for GC is appropriate. Take the time. Take it seriously for men too. This failure to do so is part of why so many people like me, failed to know our own risk before a cancer diagnosis.

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September 7, 2023

Mark A. Hicks says:
Jennifer, I know your heartbreaking story, and I agree with everything you said. Thank you for speaking up! I hope you will continue to share your story. So many people need to hear it too.

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October 13, 2023

Lauri Perman says:
Mark, I remember reading your story once before and it had a big impact on me, although I didn't comment at the time. Thank you for sharing it and for being an advocate. I'm sorry for the loss of your beloved wife and dreams for your future together.

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October 17, 2023

Mark A. Hicks says:
Lauri, thank you reading my story and for your kind words! Knowing that my story is being read and having an impact gives me hope that the conversation about hereditary cancer will change.

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November 27, 2023

Cory Hansen says:
Hi Mark. Even though I knew your family story, reading this today brought back powerful memories and made your commitment to advocacy for hereditary cancer awareness and prevention ring loud in my ears. I love knowing that our work together, as author and illustrator, will contribute to this cause.

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November 29, 2023

Mark Hicks says:
Thank you, Cory. As a writer and educator, you understand the importance of sharing information. You knew Donna years before her cancer diagnosis and know that a gifted fellow educator died needlessly because information was not shared. Thank you for supporting me in my advocacy!

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July 29, 2023

Debbie Denardi says:
Dear Mark, thank you for sharing your family history. I am sure it is a painful story but this will help many families facing hereditary cancer.

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