Archives For Genetic Cancer Syndromes

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In March, like millions of people, I sat enrapt watching the three-night premier of the documentary by Ken Burns, “Cancer: The Emperor of All Maladies.” As you know cancer is very personal to me. I have “battled” and “survived” the diagnoses of multiple tumors for more than twenty years. I am not a doctor or scientist but a “career” cancer patient. I have had different bilateral breast cancers, pancreatic Continue Reading…

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Then

As most of you know, my daughter had another tumor removed last July. This was her second occurrence of leiomyosarcoma. She had a liver resection. Two institutions opined that it could not be determined if it was a new primary tumor or Stage IV as the cells of leiomyosarcoma were exactly the same. She was 6 months shy of her 5-year anniversary.

As a parent, at first I was first in warrior mode, then caregiver mode and then when the dust had settled became completely distraught. I have complex PTSD and this event was a trauma trigger on the magnitude of an 8.0 earthquake collapsing the entire house. I went into the usual grieving over whether she would live or die. I had to wrestle with Can I stand by and watch my daughter die from this? Would I rather be dead? Even after all I had been through, fighting to live, living through my first husband’s death, could I do this again? I asked myself these questions and more. Continue Reading…

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March is Colon Cancer Awareness Month. I don’t know why it is not called Colorectal Awareness Month.

It is only the middle of the month as I write this and the ‘colon’ has been everywhere in my life. I have Li-Fraumeni Syndrome and a predisposition to cancer – basically anywhere – with a multiple family member history of colon cancer and precancerous polyps. The screening protocol for my Syndrome recommends biennial screening with a colonoscopy after age 40 or beginning 10 years before the age of any family member with a history of colon cancer.

So on March 5th I began my FIVE-day prep for my biennial colonoscopy. This was the 4th or 5th time I was Continue Reading…

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As many of you know I have a genetic defect called Li-Fraumeni Syndrome.

Per ‘’Medscape” Li-Fraumeni syndrome (LFS) is a rare autosomal dominant syndrome in which patients are predisposed to cancer. Li-Fraumeni syndrome is characterized by the wide variety of cancer types seen in affected individuals, a young age at onset of malignancies, and the potential for multiple primary sites of cancer during the lifetime of affected individuals.

(see http://emedicine.medscape.com/article/987356-overview)

This past year a group of friends that also are affected by LFS started a non-profit called LivingLFS.org. All of us ‘met’ in a ‘closed’ Facebook support group and then in person last year. It Continue Reading…

Leiomyosarcoma

The wave is coming!

There has been so much going on since my last blog post necessitating my absence. In July, from a biopsy, my daughter was diagnosed with a leiomyosarcoma in her liver. This required finding a liver surgeon to determine if this was operable, while all of her and my usual doctors were on extended vacations. We knew the wave was coming and were trying to strategize how to get to the highest ground to be able to survive the hit. Continue Reading…