'About As Close to Death As You Could Get'
- When Danyell Weisinger was overcome with stomach pain, she met with a doctor and a surgeon. Scans revealed several problems: gallstones, a buildup of fat in Weisinger’s liver, and concerning black spots covering her abdomen.
- The black spots turned out to be a rare cancer called peritoneal mesothelioma. Her disease was stage 3, and she had to go through extensive surgery and chemotherapy treatments.
- Two years after Weisinger’s diagnosis, and she is cancer free. Genetic testing identified a gene mutation, which opened up additional treatment possibilities. Weisinger received a novel treatment, and she had a complete response.
It started with persistent stomach pain. When her discomfort did not subside, Weisinger, now 45, visited her family doctor and a surgeon. Scans revealed several problems: gallstones, a buildup of fat in Weisinger’s liver, and concerning black spots covering her abdomen.Read More
When Weisinger returned to her surgeon’s office to discuss her testing results, the first thing he did was hand her a box of tissues. Weisinger’s testing revealed that she had a rare cancer called peritoneal mesothelioma. According to MD Anderson, only about 300 to 500 cases of this specific kind of mesothelioma are diagnosed annually in the United States. Peritoneal mesothelioma is known to be an aggressive type of cancer, and Weisinger’s disease was deemed to be stage 3.
“I was in shock,” Weisinger said, “because the first time I remember hearing about mesothelioma was on a commercial.” There is no cure for the disease, but there are treatments that can meaningfully improve patients’ lives.
Mesothelioma is often caused by exposure to asbestos, but that doesn’t explain Weisinger’s disease. “They say I’ll probably go to my grave not knowing where it came from,” she said. “I never had a job relating anywhere I possibly could have picked it up at because they say once it gets into your body it could take anywhere from 20 to 50 years to surface.”
“I was just in shock,” Weisinger said. “I thought, I’m a healthy 43-year-old young lady, and to hear something like this, and hear how bad it was, and I didn’t even feel sick other than a stomach ache.”
Weisinger had surgery before beginning chemotherapy, because chemo alone would have only extended her life by about six months. Her surgery lasted 18-hours, and involved removing all tumors found in Weisinger’s abdominal lining, as well as a 25-pound tumor in her stomach, her appendix, her spleen, her colon, and her ovaries. The operation was followed by chemotherapy.
Two years have passed since Weisinger’s diagnosis, and miraculously, she is cancer free. Through genetic testing, Weisinger’s doctors identified a BRCA mutation, which opened up additional treatment possibilities. Weisinger received a novel treatment, and she had a complete response.
“I can honestly say I feel better than I ever have,” she said. “I guess I was about as close to death as you could get. I just don’t feel like that at all. I feel like I’m going to be around until I’m about 100 years old.”
How to Find Help After a Rare Cancer Diagnosis
Tens of thousands of people are diagnosed with rare types of cancer every year. People facing an uncommon diagnosis may find it difficult to find a doctor who specializes in their illness. SurvivorNet experts have specific guidance on ways that rare cancer patients can find helpful resources and take the initiative to get the help they need.
Here are some ways to find help:
Many SurvivorNet experts say that once they’ve exhausted all other options for treating their patients’ cancer, or if they have a rare cancer, they’ll recommend looking into clinical trials. How can you find active clinical trials that may be right for you? Check out clinicaltrials.gov.
Clinical trials may offer life-saving treatments for some people but they are also extremely important for scientific research.
This website is a database that the U.S. government maintains. It compiles privately and publicly funded clinical trials conducted around the world. It can be a particularly useful resource for cancer patients with rare conditions as a tool for finding doctors who are experts on their diseases.
Oftentimes, the most specialized doctors in a specific field end up leading clinical trials that push our understanding of diseases forward. If you know what the name of your disease is, you can search the disease name on clinicaltrials.gov and find the names of doctors leading these kinds of studies. This tool can help you identify the doctors who are best qualified to help you.
Academic Centers & Comprehensive Care Centers
For many cancer warriors, community oncology can be a great treatment resource. However, people with rare cancer might require specialized evaluation. Most of the time, the most effective place to find a specialist is at academic centers and comprehensive care centers.
A major benefit to seeking care at a comprehensive cancer center is that there will be a team approach to finding the best treatment.
“A comprehensive cancer center is a cancer center that has been essentially vetted by the National Cancer Institute, and provides outstanding clinical care in addition to basic and translational science and research,” Dr. Ted Teknos, president at University Hospitals Seidman Cancer Center in Cleveland, Ohio, tells SurvivorNet.
Across the U.S., there are only about 50 accredited comprehensive cancer centers. There are also various cancer cancers.
What’s the difference between the two? An NCI-designated cancer center means that a center has met NCI standards for cancer prevention, clinical services or research, but not all three. If a facility is an NCI-designated comprehensive cancer center, that means it meets NCI standards in all three categories.
Dr. Kenneth Miller, a clinical instructor at Mount Sinai, tells SurvivorNet about what differentiates a comprehensive cancer center from other treatment providers, like community medicine.
“Pretty much automatically, there’s going to be a team approach (to your care),” Dr. Miller says. “Surgical oncology, medical oncology, radiation oncology and all the support services — and also wonderful pathology and radiology.” Dr. Miller explains that at a comprehensive cancer center, all of these different specialists work together to help you find the best treatment.
“We call it a tumor board — a group to go through all the details of your case … so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”