The moment that Hannah Earle was diagnosed with breast cancer, she was holding a fussy baby on her hip while her older daughter was also upstairs crying. Her husband walked in the door from running an errand and he saw it on her face. Her entire world was spinning — she had no family history, she was young, healthy, in the midst of breastfeeding her second child, and her family had just booked their first international trip together.
Pretty quickly post diagnosis, Hannah underwent a lumpectomy at Dana Farber in Boston. Her doctors were optimistic. The tumor was small, it was stage one, unlikely to need aggressive treatments. With the family trip canceled, Hannah and her husband decided to go to Rome for a long weekend while they awaited results of the OncotypeDX score, which would guide the next step in her treatment.
Sure enough, her Oncotype score was very high and she needed to have chemotherapy – a dose-dense plan of 8 treatments every other week followed by radiation. She started on tamoxifen and responded well. No ovarian suppression needed.
Hannah became the epitome of the empowered patient. She threw herself into understanding the science, the terminology, and current clinical trial research. She no longer considered herself naïve to think that cancer (or anything for that matter) could not happen to her. She knew that many women who had been through early-stage breast cancer treatment were not immune to recurrence or the development of MBC or metastatic breast cancer. She knew that she needed to be aware, but also that she needed to live. She did everything she could to stay healthy – proper nutrition, exercise, and meditation.
About 1.5 years post treatment, Hannah and her family decided to do a house swap and live in Denmark for a month. A celebration of her recovery and a redo of the family trip that was cancelled 2 years prior. However, the world had other plans. While traveling, she felt a raised bump on her sternum. She knew it wasn’t normal but tried everything she could to compartmentalize the worry of what could be. There is nothing worse than having cancer steal the joy of an experience – again.
When she got home, she had an ultrasound, followed by an MRI to get a closer look. Hannah requested a CD of her scans. Although she wasn’t exactly sure what she saw, the growth on her sternum didn’t look normal and it appeared to be growing into her chest wall. Two days later, her physician also noted a spot her spine that looked suspicious. She needed a bone scan.
The first time she was diagnosed she was caught off guard. This time, barring a miracle, she knew she would be receiving the MBC diagnosis. Unfortunately, she was right.
Her MBC was found in the bones in her sternum, ribs, skull, legs, spine and the soft tissue of her lungs and lymph nodes.
When she was presented with a clinical trial, it was a no brainer. She would receive standard of care plus immunotherapy. Given all her research, she thought the future would be immunotherapy – either as a cure or a way to turn cancer into a chronic condition. It was a long four weeks before the trial started.
She had many hard but necessary conversations with her husband. How would he raise the kids if she wasn’t there? Would he get married again? How would they tell their kids? How would they prepare the kids? Hannah had to talk through it, no matter how difficult, so she could feel some control of the situation surrounding her.
Then, she gave herself permission to fight like hell to stick around. She was determined to not be a statistic, that her life was going to last longer than 3 years. Her initial goal was to get through one year on this first treatment line. In truth, you have no control over how cancer responds.
2.5 years. That’s how long she has been on the treatment line – 40 cycles.
Hannah had some pneumonitis on her lungs from the immunotherapy, but she stayed stable. Then COVID hit. She faced the same decisions as many other patients. The pneumonitis on her lungs put her in a high-risk category. She made the decision to stop the immunotherapy and continue on the standard of care.
Of the 30 people that were enrolled in the breast cancer arm of this clinical trial, there were very few patients remaining. The manufacturer had published the preliminary results. The benefits did not outweigh the risks for most patients. Over the course of Hannah’s treatment, she signed at least 4-5 informed consents because of new side effects.
Hannah, however, has reached what she calls golden unicorn status. 100% shrinkage and no evidence of active disease. To say that she was grateful to her physicians and the incredibly smart scientists involved in her clinical trial would be a massive understatement. She also could not have gotten to where she is today without the unwavering support from her family and friends.
When asked what she wanted to share with pharmaceutical manufacturers about her experience in her clinical trial, she had a few takeaways:
- Trial Participation was a Full-Time Job
Hannah lives 1.5 hours from Boston. The start of the trial was very demanding, and she found it difficult to juggle being a mom, wife, patient, and employee. In the beginning participation was like a job in and of itself. After running out of sick time Hannah left her job as a librarian. She needed any time outside of her responsibilities at home to be focused on being a patient and taking care of her body.
- Receiving Medication at Home During COVID was a Blessing
There were times when Hannah would have to wait 3-4 hours at the pharmacy to refill her trial prescriptions. When they switched to shipping medication via FedEx to her home during COVID, it was such a relief.
- Find a Balance - Virtual Visits vs. In-Person Visits
Something about meeting her team in person made Hannah feel stronger, more hopeful. It is so much harder to feel that by looking at someone on a screen. So she balances in-person vs. virtual visits. This has allowed her to spend less time on the road to Boston and more time with her family.
- Young Women with MBC are Needed in Clinical Trials
For Hannah, being a young woman with MBC was pretty lonely at first. The loneliness was motivation for her to start her blog. She wants to leave a legacy for her children, so they can read about her experience in her own words and she wants to put a voice out there for other young women with MBC, in hopes that they won’t feel alone like she did. Over the years, she has found a small but great community of young women with MBC, but she still doesn’t feel like women under 40 are being represented in the research.
- Clinical Trials Matter
Hannah’s main takeaway was to say thank you to all the trial sponsors, and all the people that make these trials and treatments possible. She is humbled by her response to the treatment, knowing that not everyone does so well. It has become a point of pride for her to have been a part of it. While still uncertain what the future holds, she would absolutely join another clinical trial because she feels a responsibility to represent a minority age group in the MBC research setting and because she believes that research is the only way to find a cure.
To learn more about Hannah’s journey, please visit her blog “Hannah in CancerLand”.
Tag(s): Industry Voices