The MCA BlogConnecting with others one story at a time
When Betsy Brockett was diagnosed with a rare form of mesothelioma in her abdomen she was only 28 years old.
“My first reaction to my diagnosis was complete shock,” she recently told the Mesothelioma Cancer Alliance. “It seemed to come out of nowhere, and the diagnosis dismantled everything in my life.”
Faced with an aggressive form of cancer that typically has an extremely poor diagnosis, Betsy readied herself for the struggle to come. “I immediately had to quit my job and focus on preparing for and facing surgery, so there wasn’t much time to let it all sink in,” she recalled about the time immediately after her diagnosis. “The reality hit me much later, I think.”
The Serendipitous Road to Diagnosis
The first sign that something was wrong took place in April 2014, when Betsy was 28 years old. “I woke up in the middle of the night with extremely intense pain in my abdomen,” she described to MCA. “It was out of the blue, and I felt fine the next day.”
However, a small bit of providence led Betsy to seek out medical help. “That day [after she felt the abdominal pain], however, just happened to be the day of my annual gynecological exam. I mentioned the strange pain, and my doctor immediately sent me to get an ultrasound across town.”
Before that time, Betsy and her husband Dan had been trying unsuccessfully to have a baby. “I had been working with this doctor for about a year to investigate my unexplainable infertility,” Betsy explained, “so I think his desire to investigate the mysterious pain stemmed from that.”
So with her gynecologist’s recommendation, Betsy got an ultrasound to hopefully figure out what might have caused the pain. “The ultrasound revealed that my right ovary was the size of a grapefruit, inexplicably, so a laparoscopic surgery was scheduled to get a better look at what was going on.”
Biopsies taken during that surgery revealed that the mass was peritoneal mesothelioma, an uncommon type of an already rare form of cancer that affects the lining of the abdomen. “The discovery was complete serendipity,” Betsy said of the discovery. Had she not had an exam the day after she felt abdominal pain, the cancer might have continued to grow inside of her. Now, because of that lucky examination and an attentive doctor, she was given an opportunity to do something about the disease.
Surgery and Recurrence
In the summer of 2014, Betsy had debulking surgery to remove the mesothelioma tumor. On her blog, Cured Life, Betsy describes how she tried to maximize her experiences in the days and weeks leading up to the surgery.
I tried to squeeze in an entire summer’s worth of activity, knowing I would have to sacrifice the rest to recovery. I worked on becoming as healthy and strong as possible and enjoying life to the fullest. This time included 15 to 20 mile bike rides each weekend, a road trip to see Bruno Mars in concert, endless hours in my garden, visits to my favorite restaurants, shooting off fireworks in my backyard, and taking pictures of my scar-free abdomen. Life was good, but each beautiful day brought with it an undercurrent of fear and anxiety over what I would soon face. At least I knew I was going to bring a pile full of great memories with me to the hospital.
This surgery was extensive and included the removal of several tumors, as well as her right ovary, right fallopian tube, and appendix. Betsy stayed in the hospital for two weeks before being sent home – only to return a few days later after experiencing uncontrollable sweating, vomiting, and abdominal pain. She spent all of July and most of August recovering from the surgery, going back and forth between the hospital and home.
However, her treatment was not over. Near the end of August 2014, when she started feeling well enough, Betsy was scheduled for chemotherapy treatments – something that had not been a plan of her initial treatment plan. Rather than taking treatments via an IV, the usual way that chemotherapy is administered, Betsy’s doctors recommended that she use an implantable device known as a PowerPort to deliver the chemotherapy drugs. The surgery to implant the device was scheduled for the day before Betsy’s 29th birthday.
Unfortunately, during her first treatment, Betsy and her medical team discovered a previously unknown allergy to the first and most effective anti-nausea drug that was given to her. Before the chemotherapy treatment itself even began, Betsy underwent a potentially life-threatening experience as her doctors and nurses worked frantically to control the allergic reaction with steroids and other measures.
Ultimately, Betsy underwent four courses of chemotherapy from August through October, experiencing a host of side effects that she describes in detail on her blog. Two days before Christmas, approximately two months after her last chemotherapy, Betsy had her PowerPort implant removed. “In addition to having a clean bill of health,” Betsy recalls in her blog post, “it was the best Christmas present I could have ever imagined.”
Throughout 2015, Betsy continued to receive checkups to make sure the disease had not returned, and for almost a year the scans all came back showing no problems. Then, in December 2015, almost exactly a year after her PowerPort had been removed, that changed.
“My scan right after Christmas revealed that the cancer had reappeared,” Betsy told MCA, “so I underwent a second debulking surgery in February 2016, which also included Heated Intraperitoneal Chemotherapy (HIPEC).” This treatment, which is still relatively new and available only in a handful of cancer centers throughout the world, involves washing the abdominal cavity and organs with chemotherapy in an attempt to kill any remaining cancer cells that are not removed as part of the debulking surgery."
In addition to the debulking and HIPEC treatment, Betsy underwent a full hysterectomy, which led her to experience menopause at the age of 30, in addition to a numb right hip and a large scar down her midsection. However, these physical reminders were not the only aftereffects of Betsy’s second surgery. As she described on her blog four months after the treatment, she went through a period of depression as well.
The emotional aftershocks also remain, and are much more difficult to adjust to. I have days which I describe as “storm clouds rolling in” where I am completely immersed in sadness. Sadness for all that I have lost, all that has changed, and all the newness and wreckage that I am left to sort through.
Fortunately, since her treatment earlier this year, there have been no signs of additional recurrence. “I am not currently undergoing any treatments,” Betsy told MCA. “I am back to getting scanned every three months.” Her next scan and MRI are scheduled for the end of this month.
“Take it all one day at a time”
The form of mesothelioma that Betsy had is known as well-differentiated papillary mesothelioma (WDPM), and it is extremely rare. Due to its rarity, there is no standard treatment for WDPM, and unlike other forms of mesothelioma, no specific link to asbestos has been made.
Nonetheless, Betsy understands the importance of being aware of her environment and how it can affect her and her family. “I am a firm believer in being extremely proactive with my own health,” Betsy declared to MCA. “The way I accomplish that is by taking it upon myself to learn and gather as much education and knowledge as I can.That knowledge includes the environments I am in and exposed to, and what I bring into my home and what I put into my body. Because asbestos is not banned (along with many other toxic substances we can come in contact with), I try to empower myself with the knowledge necessary to protect myself.”
She also offers some advice for those who have been diagnosed with cancer. “I will offer the advice that I was given: Take it all one day at a time. It is very easy to become completely overwhelmed by everything you have to face and endure, but the only thing worth focusing on is what you need to accomplish this very day. Don’t worry about all the treatment and subsequent recovery that may be down the road, only what is on your plate today.”
As part of her own survivor story, Betsy is also working to inform others about mesothelioma by sharing her story in an open and transparent way through her blog, Cured Life. “When I was first diagnosed, I struggled to find a resource from a young woman, similar to myself, who had also endured, and survived, this disease,” she explained. “I write and share my stories in an effort to create that archive of knowledge and inspiration that I sought, in the hopes that it may be helpful for others who face the same diagnosis.”
Betsy believes her experience can help others in their own journeys, and she wants to record her thoughts and emotions as they happen. “Still somewhat fresh from treatment, I am taking my reemergence into the world slowly, and doing what I can from home.” But she aspires to do even more. “In the future I would love to become more involved with organizations that champion mesothelioma awareness.”