56 Years and Counting
Kathy Roberts’ remarkable Thriver story begins in the summer of 1965, when she had just completed her first year of college at a small school in Pennsylvania. She had recovered from the case of mononucleosis that had troubled her the previous fall, but now she began to feel ill again; her most frequent symptom was vomiting. Her mother assumed she was pregnant but didn’t come right out and say so, instead expressing her displeasure through constant annoyance. But her irritation turned to alarm that fall when Kathy, troubled by clothes that no longer fit and increasing pain and nausea, went to the small-town doctor who served her college.The doctor told Kathy, “You have a large mass in your abdomen; when you go home for Christmas vacation, I suggest that you have someone take a look at it.” Kathy called her mom and reported this news over the phone; her mom said, “I want you to hang up, call a cab, and check yourself into the nearest hospital. I’m heading to the car right now.”
19-year-old Kathy found the experience of being hospitalized mortifying--all of the hospitals she ended up visiting were teaching hospitals, and all were staffed with what seemed like nothing but young male doctors. Tests revealed a grapefruit-sized mass; the doctors told Kathy’s parents (but not Kathy herself!) that there was about a 95% chance that the mass was cancerous. They located a world-renowned gastrointestinal surgeon, Dr. William Barnes, in New York City and took her to the hospital where he worked to have the mass removed. The tumor had grown from the lining of her bowel and attached to her pancreas, so six inches of her large bowel, six inches of her small bowel, and a third of her pancreas were also removed.
The tumor was sent to Memorial Sloan Kettering for examination by pathologists, who disagreed about how to classify it. A panel of five doctors voted on it; 3 voted “benign,” and 2 voted “malignant.” They decided to treat the tumor as a leiomyoma. No chemotherapy was available for LMS at the time, and the doctors did not want to use radiation because it would have sterilized Kathy, who was only 19, so surgery and five years of follow-up visits were the only treatment Kathy received. (In addition to the surgery to remove the tumor, Kathy required another large surgery 6 months later to repair a bowel obstruction.)
While hospitalizations and surgeries were very hard on Kathy, she believed that at least her tumor had been benign. Whenever she went to a new doctor and was asked “Have you ever had cancer?” she replied, “No!”
Fast forward to 1999--Kathy, now in her 50’s, was in graduate school at Michigan State. She was diagnosed with an ovarian cyst and told she needed a hysterectomy. Recently divorced, she had little money to spare, so she decided to get her healthcare through the school. She told her doctor she had had a tumor years ago and had always worried that it would come back, and he said, “Well, let’s look at your records from Memorial Sloan Kettering.” Kathy joked that the records would probably arrive on stone tablets, they were so old. When they came, they revealed something that shocked Kathy: it appeared that her tumor had actually been LMS. While Kathy recognizes that it might in some ways be a good thing that she was spared as a 19-year-old from knowing that she had a deadly cancer, especially since she would likely have received the exact same treatment regardless, she still wishes her mother would have come to her at some point later and said, “Kathy, we kept some information from you when you were younger.” Fortunately, Kathy has never had an LMS recurrence (her ovarian cyst was benign) or any other kind of cancer, beyond an easily-treated squamous cell carcinoma.
Kathy has, however, experienced long-term consequences from her LMS. In 2017, she began experiencing pain that reminded her of endometriosis; since she no longer had a uterus, she guessed that that was probably not the cause and that adhesions from her multiple surgeries might be to blame. A visit to the doctor for a respiratory problem ended up confirming that: the chest x-ray the doctor requested showed that Kathy’s entire stomach had been forced up past her diaphragm and into her chest by all of the adhesions filling her abdomen. The adhesions meant that the corrective surgery could not be laparoscopic; instead, the surgeons had to perform a thoracotomy, collapsing one of Kathy’s lungs and going in through her back to reposition her stomach. She lost 40 pounds during the course of recovering from that surgery and continues to experience abdominal pain daily. One fascinating note about a procedure Kathy received during her stomach surgery: it is called a Nissen fundoplication, and the version of it currently in use was pioneered by Kathleen’s original LMS surgeon, Dr. Barnes!
Like most LMS patients, Kathy has often wondered what might have caused her to develop cancer, particularly at such a young age. She is very interested in the theory that a virus, simian virus 40 (SV40), might have been a factor. Kathleen was one of the very first people to receive the polio vaccine when it was invented. The first batches of the vaccine were cultured in monkey kidneys, and in the late 1960’s, it was discovered that in some cases, the vaccine was contaminated with viruses the monkeys had been carrying (this was not a problem with later batches). There is some evidence that SV40 causes mesothelioma and soft tissue cancers. Kathy recommends the book “Dr. Mary’s Monkey” to anyone who is interested in this issue.
Despite her early traumatic experience with LMS, Kathy has lived a full and busy life. She has been a teacher, starting in middle school English and then moving to alternative education and adult education, as well as a chaplain for a large hospital, a social worker specializing in addiction, and a stay-at-home mom to two sons (she now has 6 grandchildren) and caregiver to many family members when they were ill. Most recently, she has worked as a hospice chaplain and bereavement coordinator, and she is now about to start a new job as an online tutor. She broke her hip last fall and has been working hard in physical therapy, too.
Kathy is extremely grateful to have survived LMS and to have had excellent physicians--especially Dr. Barnes. Making it through so many medical issues has left her with a sense of purpose; she says, “If I’ve defied the odds, I’d better do something with my life!” She is also grateful to the many people who have cared about her and prayed for her over the years. She does not consider herself an especially religious person, but she recommends that other survivors recognize that LMS is a spiritual battle as well as a physical one: “Cling to whatever you believe in that is greater than yourself, and greater than your cancer,” she advises. Most importantly of all, Kathy says, we must believe that healing is possible. Surely Kathy’s story--56 years and counting of a busy, productive, and deeply meaningful life post-LMS--proves it!