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The Elsie Lichtman Story

On December 28, 2006 Elsie Lichtman passed away from adenocarcinoma of the lung and paraneoplastic disorder (PND).  Her cancer and PND went undiagnosed for many months. When Elsie first began complaining of slight ataxia she was told by a local San Diego neurologist that she had likely suffered a small stroke.  She was also diagnosed with a hyperactive thyroid. She was given medication to treat both, was advised to undergo physical therapy to treat the ataxia, and was sent on her way.

Over the next few months her condition worsened.  Elsie encountered what many experience with the beginning stages of PND - her ataxia worsened and she started to notice other debilitating symptoms.  She went from a walker to a wheelchair in less than two months, her neurological symptoms depreciated, and her vision began to fade.  Finally, a neuro-opthamologist suspected that something more insidious was going on, performed a chest-scan, and a large tumor was found on her lung.  As it turned out, Elsie had stage 4 adenocarcinoma.  By the time she was diagnosed, she was completely bedridden, likely more from the PND than from the cancer itself.

For Mitchel Licthman, Elsie’s son, this was a turning point.  On a mission to understand why his mother’s health was failing at such a rapid pace, Mitchel took to the internet for answers.  After much research, he reached the grave realization that his mother did indeed have paraneoplastic disorder.  All of the signs were there, however Mitchel had trouble convincing the doctors to take him or the disease seriously.  PND was largely unheard of and most physicians had no idea how to treat it.  From what Mitchel had discovered through his extensive research, PND needed to be addressed immediately.  Left untreated, the outcome of this disease would likely be deadly.  Frightened and worried that it was too late to treat, Mitchel begged the doctors to try an IVIG, a plasmapheresis - anything to prolong his mother’s life and perhaps relieve some of her symptoms or halt or slow her declining condition.  Unfortunately, his pleading fell upon deaf ears.  The doctors continued to focus on treating her adenocarcinoma instead. This is what they thought was the best thing to do.  And when treating cancer, especially stage 4, which is usually terminal, time is not necessarily of the essence.  With PND it is. They administered radiation therapy to the brain and one chemotherapy session, but by this time Elsie was too weak and too far gone to withstand any treatment. At this time, one of Elsie’s doctors finally capitulated and agreed to IVIG therapy to treat the PND, but Mitchel declined.  It was too late. The PND had taken its toll. There was nothing Mitchel could do but watch as his worse fears came to life.  His mother passed away a short time later.

“It was horribly tragic for me to see my originally healthy and vigorous mother waste away and suffer from the PND while neither I nor the doctors could do anything for her.”  To this day, he believes that his mother’s passing was largely due to the PND and the doctors’ original misdiagnosis and eventual refusal to take the disease seriously.  “I felt and still feel terribly frustrated and angry that I could not have done something to speed up her diagnosis….and possibly prolong her life. I think my mother was failed by the medical system on a number of different levels. One of the ironies is that I think that had the PND been originally diagnosed we might have caught the cancer early enough before it had a chance to metastasize and perhaps been able to save her life. From the first day that she noticed a slight imbalance in her gait in July to her last day in December, I don’t think that she actually ever suffered any symptoms of the cancer itself.  The PND basically destroyed her once healthy body, at an astonishing and horrifying pace.”

Now, almost two years after Elsie’s death, Mitchel continues to support life-saving PND research, so others do not have to suffer.  Because of his support, two new antibodies have been discovered, which allow for quicker diagnosis of the neurological disorders as paraneoplastic, saving the patient from extensive and sometimes invasive tests.  Mitchel feels very honored that he can be part of the great research being done by Dr. Josep Dalmau at the Abramson Cancer Center of the University of Pennsylvania.

Although his mother’s death was indeed a tragedy, there is an opportunity to use his mother’s story as a reminder.  It is a reminder of how important it is to educate not only those suffering from PND, but also the doctors who have little or no education about the disease itself.   It is a reminder of how important it is to support this research so more can be done.  “I would like for her passing and her suffering as well as the suffering of our family to not be in vain,” Mitchel says.  

The faculty and staff at the Abramson Cancer Center are grateful to Mitchel for his support in advancing the diagnosis and treatment of this disease so we can bring hope to patients and their families all over the world.