HEADstrong Heroes: Meet Anne Hagner
By Drew Haig
Small cell carcinoma of the ovary of hypercalcemic type. Do you know much about it?
If not, you are among the vast majority of humanity including the oncology departments at some of the most prestigious hospitals in the United States. For Anne Hagner, the diagnosis means that in the fight for her life that was already riddled with uncertainties, she would first need to find a doctor capable of joining her.
A New Jersey native, Anne played four years of lacrosse at Cabrini college before landing a position in Philadelphia. Her love for the game continued to flourish, as she spent her free time as an assistant coach at Sacred Heart Academy, an all-girls preparatory school Bryn Mawr, PA. It was around this time that she met her future husband, Mike, and moved to the Delaware County suburbs of Philadelphia.
Anne now works as a Contracting Office for the Defense Contract Agency, which builds and services helicopters for the United States Navy. Her most important and favorite role however, is that of Mom to her two elementary school-aged sons Mikey and Tom. With the busy home schedule and a demanding but satisfying professional life, the initial symptoms that onset at the beginning of March 2020 did not immediately become a priority for the family.
“Around the middle of March, I started having some regular cramping–but I had previously had an ovarian cyst and figured it may be reoccurring,” said Anne Hagner. “The upside was that I had an annual checkup with my OBGYN scheduled for two-weeks after these developed, so I figured I would mention it then. Of course, that appointment got pushed to the middle of April due to the COVID-19. When the second appointment was cancelled again, I told the office that I really wanted to come in because the symptoms were worsening.”
Her primary care doctor urged her to get an ultrasound, and Anne made the soonest available appointment, which at that time was the middle of June. When she finally got in, the office called immediately after receiving the results: she had a mass on her right ovary that was 15cm in length. The surgery to remove the mass was scheduled for the very next week.
Anne could barely digest what was happening, and the rapidity of the situation aided in the confusion. She immediately went in for pre-mission testing and learned that she had high calcium; she would need a visit to the Emergency Department for fluids that would get her calcium and electrolytes in-check before the surgery.
Once the mass was removed, the biopsy results were more daunting than the family could have ever imagined. This particular ovarian cancer is so rare that the oncology department at the Hospital of the University of Pennsylvania had never seen a case; the same was true of nearby Thomas Jefferson University Hospital. Both facilities have strong oncology departments, and UPENN in particular has experts in the fields and is known for its advanced treatment care. Some of the oncologists were transparent and let Anne know that while they had studied the cancer or attended seminars on the subject, this was the first case that they had come into contact with.
After meeting with local doctors who were willing to treat her but had not previously tackled this form of cancer, Anne began to get nervous and started researching on her own. The small cell carcinoma of the ovary of hypercalcemic type is not only rare, it is particularly rare in adults. When it is found, the vast majority of cases are in adolescent females which compounded the confusion. Anne and Mike spent hours online searching for facilities that had treated patients, read through dozens of research papers, and finally found a Facebook support group that would make all the difference.
After nervously posting in the group for the first time, Anne immediately received positive feedback and support, as well as a recommendation to contact a Dr. Pressey at Cincinnati Children’s hospital. Although primarily a pediatric oncology specialist, Dr. Pressey had treated several adult women, and began studying and treating this particular cancer in the early 2000s.
“The support group made all the difference in the world,” said Anne. People bounce ideas off of each other and it’s helpful to know that someone has been through it and they are open and supportive and they are willing to answer. I can get through it because they provide a sense of hope–I will see what happens. And people are posting from all over the world–Europe and Brazil and Canada and all. I in turn want to share my story because maybe it will be able to help everyone else too.”
The hardest part of the entire journey has been the lack of available resources for Anne and her family. When the decision was made to travel to Cincinnati for treatment, Anne reached out to social workers and groups in the area to see if there was any situation similar to HEADstrong’s Nick’s House. Anne has been a long time supporter and friend of the foundation, even living next to Chief Development Officer Pat Colleluori for years.
Unfortunately, there are no short-term living facilities for patients in the area, and the growing costs of a hotel have been an added burden on top of medical expenses. COVID-19 means that access to any residence is limited, and many of the treatments are done in complete isolation as well.
After spending multiple weeks with nothing but a hot plate to cook meals on, Anne and her husband finally located an apartment complex near the hospital that would allow for short term residency. She has traveled back and forth from Cincinnati to Philadelphia during her treatment, which consists of six rounds of in-patient chemotherapy, stem cell treatment, and a preventative hysterectomy. The treatment plan is extremely taxing both physically and emotionally, but luckily Anne has had the support of her family. Mike continues to travel with her whenever possible, and her mother, brother, and sister have been instrumental in spending time with her, or back in Philadelphia with Mikey and Tom who are recently back to school.
“The whole process is insane,” said Anne. “Perspective on life and others changes. You really don’t know what people are going through and you really start to appreciate things. Really start to look at good things. The importance of having a great support system is unbelievable. Being far away from home is hard, but knowing they are there and that they care. Organizations are out there and there is a community behind you. You are not alone.”
Since beginning treatment, Anne’s CT and MRIs have all been clear, which is a positive and telling sign. Anne was quite grateful for the small comfort package sent along by HEADstrong that contained sandwiches from a local Philadelphia spot and some Tasty Cakes. The small things bring a sense of normalcy and help focus on things other than the difficult treatment.
The services provided by the HEADstrong Foundation are vital. Residential, financial, and emotional support for families affected by cancer can bring some positivity and normalcy to an otherwise dire situation. If you would like to learn more or support the HEADstrong mission, please visit HEADstrong.org.