The Beacon of Light and Hope for those with Lynch syndrome….
The best part of being an advocate for those with hereditary cancer syndromes is having the privilege of getting to know some extraordinary souls. Last January, I received an email from a gentleman named Marco who had recently been diagnosed with Lynch syndrome; his mother Marika was suffering from kidney cancer – this was her third bout with cancer due to Lynch syndrome. Marika inherited Lynch syndrome from her mother who also had multiple Lynch syndrome related cancers. Marika’s mother managed to live until the ripe age of 90 until pancreatic cancer took its toll.
Marika has had an exceptionally challenging and fascinating life history. She was only 5 years old when World War II was raging in Europe; she lost her father when she was 8 years old, managed to survive starvation, and eventually moved to Italy with her mother to flee war-torn Hungary. At the age of 18, Marika appeared in a movie with Sophia Loren and was supposed to be in other movies until polio put the kybosh on her acting career. As a result of contracting polio, she lost much of her ability to use her legs — she must use a cane. Marika moved to the U.S. when she was 22, where she worked, married, and raised two children. Marika developed uterine cancer at the age of 51 and that was treated with a total hysterectomy. Then at the age of 65, she was diagnosed with cancer of the left kidney — that kidney was removed. A few years later, her husband of 44 years died from pulmonary fibrosis. A few years after that, Marika was diagnosed with cancer again — this time the cancer took up residence in her right kidney. The chemotherapy she took failed her and she was told that her days were numbered.
Fortunately, her local oncologist knew of a clinical trial being offered in Sarasota, which she is currently on. She began the immunotherapy clinical trial months ago and has experienced significant tumor shrinkage; she saw a 50% shrinkage in just three months and is still experiencing shrinkage. The doctor has been overwhelmed with the positive results – her fate is currently unknown but with the tumors shrinking her life has been extended. Aside from a small rash, which was treated with hydrocortisone, this particular immunotherapy has held very few side effects for her. She feels better now than she has in years.
Other than her current affliction with cancer, and the lasting results of having had polio, Marika is in great shape at 80. She eats and lives healthfully and — even in her current state – she still conjures the inner strength to regularly swim and do yoga, as she has done so for decades. She abstains from consuming red meat or processed meat but does eat poultry, veggies, and grains. While these epigenetic factors may not have prevented any of her cancers, they may have been responsible for the delay of their onset. Marika is very astute and spends her time reading, listening to classical music, and is highly interested in politics, and world affairs. She maintains a pretty busy social calendar with her friends – they are a tremendous source of joy and laughter in her life. Marika does not practice any religion.
Her biggest challenge with having Lynch syndrome is knowing that her son holds the mutation, her daughter fortunately tested negative. Lynch syndrome is autosomal dominant which mean that each child of a carrier has a 50/50 chance of inheriting the mutation. Marco has luckily never had cancer and has been of tremendous support to his mother. He moved back in with her a couple of years ago to help care for her and I believe Marco has been quite instrumental in her well-being; he’s a sharp, articulate, funny man who is highly involved in his mother’s medical decisions. He adds much-needed levity into her daily life. We should all be so lucky to have doting, selfless children in our later years.
Living with Lynch syndrome and its cancers is difficult. I check in with Marika frequently to see how she’s fairing; I recently asked her how she manages to keep her head above the water with all that has happened to her … “Discipline and willpower,” she says with great confidence. I believe her immeasurable resilience, to her cancers and issues, stems from her early challenges: struggles during and after the war, losing her father, and her lifelong struggle with polio. Marika is a remarkable force — she is adaptable and immeasurably resilient.
Her advice to other patients in her charming Hungarian accent: “Live every day, have hope, don’t dwell the negative … you can sit and stare at the walls and feel sorry for yourself, or go out and live.”
Thank you, Marika for taking the time to talk to me and sharing your story with the Lynch community. You are truly a ray of sunshine on the Lynch syndrome horizon – you give me tremendous perspective. I hope your story gives others hope and perspective, too.
Ellen, Amy and I recently had our #Hcchat in October with Tim Rebbeck, PhD from Harvard, regarding all the latest news for those with BRCA. Please click here to read the transcript: https://storify.com/Hc_chat/hcchat-transcript-10-28-15
And finally, if you’re in Chicago in December and have a hereditary colon cancer syndrome, you may want to mark your calendar for this event:
Hope you’re all well and enjoying the fall.
Founder and Executive Director of the Nonprofit: ihavelynchsyndrome.com.