New LARSCAF Mission 2021
Her Story
On March 27, 2016 Lori Ann Reigert lost her life after a three month treatment and battle with what she was told was “malignant melanoma”, aka per the American Cancer Society, cutaneous/skin cancer melanoma which had inspired the formation, in her honor, of the Lori Ann Reigert Skin Cancer Awareness Foundation (LARSCAF) in order to promote the education and prevention of malignant melanoma skin cancer.
Lori Ann Reigert did not have any melanoma cancer skin lesions common to “malignant melanoma” and as LARSCAF became more informed about melanoma, through meeting many melanoma cancer survivors and families of melanoma cancer victims at melanoma charity events, it became clear that Lori Ann Reigert must have had an uncommon, rare melanoma that had NO SKIN CANCER LESIONS such as cutaneous melanoma of unknown primary (skin lesion) (MUP) or mucosal melanoma of the mucus membranes.
In order to determine which rare non lesion melanoma she actually had, LARSCAF was fortunate to find an expert melanoma researcher to retest a sample of her cancer. He shockingly reported on March 23, 2019, that her “malignant melanoma” had been mistaken for Clear Cell Sarcoma cancer (CCS) which was never treated and took her life.
While trying to comprehend how three experienced pathologists associated with known cancer centers could possibly misdiagnose our beloved daughter in a matter of life and death, the Lori Ann Reigert Skin Cancer Awareness Foundation discovered that:
clear cell sarcoma cancer has been a rare but well known mimic of melanoma cancer in pathology testing for over 30 years and it can be easily detected and distinguished from melanoma with a molecular test called Fluorescence In Situ Hybridization (FISH)
very little research, studies and literature are available about CCS for the last 10 to 20 years,
cancer organizations rarely or never mention CCS,
pathology and oncology associations have no protocols or guidelines for their doctors about when and how to detect CCS with a FISH test and
the national cancer institute (NCI) and other similar government researchers have largely ignored CCS so that no one is held accountable for when CCS is mistaken for melanoma cancer and
there are no statistics on how many lives have been lost from untreated CCS while wrongly believing like Lori Ann Reigert, that they had rare melanoma cancer of unknown primary lesion or other non lesion melanoma
THE NEW LARSCAF MISSION
To raise the awareness of a deadly melanoma cancer mimic and to convince the melanoma cancer community to require a FISH test for every diagnosis of Melanoma of Unknown Primary to rule out this mimic, Clear Cell Sarcoma, so that lives, like Lori Ann Reigert’s will no longer be unnecessarily lost