“My first diagnosis was in 2007,” said breast cancer patient Alyson Tischler in a recent conversation; “I was 35 and a brand new mom with a six month old son.” She was getting ready to go back to work after eight weeks of maternity leave and had just stopped breastfeeding. “My breasts started to go back to their normal size and that’s when I felt a lump,” she continued; “I didn’t think it was anything.” Alyson went to the doctor a few weeks later thinking it might be a clogged milk duct and was stunned to find out it was stage three breast cancer.
“I was shocked,” she recalled; “I had been in perfect health.” Over the next year, Alyson underwent chemo, a mastectomy and reconstruction, and radiation. “It was a year of complete hell,” she added; “A particularly profound and painful moment was having my hair fall out on my new baby.”
But she got through it and soon enough she was back at work and thriving. “I had ten really good years,” she remembered; “I was in remission, I aced all my oncology screenings, and I became vice president of my company. Things were going really well.”
In November of 2018, Alyson was traveling for work and noticed a lump in her neck. Hoping it was nothing, she went to the doctor who didn’t think it was anything out of the ordinary, but the lump continued to grow. “I went back a few weeks later and it was bigger,” she recalled; “It turned out to be triple negative metastatic breast cancer; it had changed to a different subtype.”
Once again, Alyson was in complete shock. “I had been estrogen positive before, but I was familiar with triple negative because, of all the subtypes, it’s the one we know the least about. That really scared me.”
At first, Alyson continued with her original oncologist, who immediately began IV chemo and started her on common chemotherapy drugs. “I was on that for seven months and I felt really good,” she said; “But then I felt something new pop up in my neck and that’s when I realized the drug had stopped working.” Being a metastatic cancer patient means moving from treatment to treatment because of how the disease continues to change within the body. “I was switched to another drug for the next five months, but ultimately the lump in my neck only got bigger,” she added.
It was during that time that Alyson changed oncologists and began seeing a triple negative specialist. “I realized how unique triple negative is and that I needed a specialist on the forefront of things,” she explained: “He sent me for advanced testing and it turned out I had a PIK3CA mutation.” Her condition made her a candidate for a newer therapy that completely obliterated the tumor in her neck. “It was insane,” she said: “It left a hole like a bullet wound. I started it around Christmas of last year and by January 6th there was nothing left but a gaping wound. It was horrific and wonderful all at once.”
While the drug helped destroy Alyson’s tumor, she eventually began to feel sick from the side effects and it too stopped working. This past April, she switched to yet another treatment, the first one specifically for metastatic triple negative breast cancer. “I’m doing really well on it,” she said; “I’m feeling good, my neck is healing and it’s resolving all of my pain issues, so I was able to come off the opioids. I’m not even taking Advil at this point.”
Because of all the changes in treatment that Alyson has faced, she is intimately versed in the difficulties of sharing her health records. “The first time my treatment failed, I felt like I needed to do something different, so I called to get an appointment at a one of the world’s most renowned institutions to see one of the leading specialists,” she recounted; “The process of setting up the appointment was a extremely taxing—everything from getting my health plan to approve the appointment, to getting on the phone with the office.” Adding insult to injury, was the process of getting her records sent over from her local hospital. “They needed to work directly with the records department of my health plan which involved tons of paperwork, signatures, and constant follow up,” she added; “It was an extremely painful process that took a lot of my time. I was telling them over and over: ‘I have cancer! This is urgent!’”
Eventually the records department did send her data, but it barely arrived in time for her appointment and the process took a toll on Alyson. “It was the last thing I wanted to be dealing with, having to be a project manager with my own data when I was going through so many other challenges,” she recalled. “It was a highly-wrought emotional time for me; I was coming to terms with the fact that my treatments didn’t work and here was this other chore being thrust upon me.”
It’s because of her experience that Alyson understands and supports the mission of Ciitizen, giving patients control over their data to better coordinate their care. “If I could have simply sent them my information with the push of a button, it would have saved me from a lot of unnecessary frustration, at a time when I didn’t particularly need it.”
Join Alyson and sign up with Ciitizen to take control of your health data and help advance important breast cancer research.