In the Beginning…
My name is Diane, and I am 63 years old. As a nurse practitioner, I have a clinical background. I received my diagnosis of Carcinosarcoma on April 16, 2015.
One day in February 2015, I noticed a lump in the area of the umbilicus or belly button. Since it was not painful, I just ignored it for awhile. I thought it was an umbilical hernia and finally went to my primary care physician and a surgeon, both of whom confirmed my self-diagnosis of umbilical hernia. The surgeon recommended surgery, which I wanted to postpone until the end of the summer. However, the surgeon pointed out that it was not going away, so we scheduled the hernia removal in April 2015. I’m grateful that I listened to him. I had the uneventful surgery on April 13, 2015, and my recovery was unremarkable.
On April 16, 2015, everything changed … I received a call from the surgeon who reported that the pathology report showed that the hernia was a cancer. He called it malignant mixed Müllerian tumor or MMMT. The surgeon used the term “Sister Mary Joseph” nodule to describe the tumor. I had no idea what any of that meant. I was soon to find out …
The Internet is a wonderful resource — except when you have a rare cancer. I was home by myself that night, so I started googling the diagnosis. I was stunned and scared. Every article used the terms “rare” and “poor prognosis.” My surgeon strongly suggested that I see a GYN Oncologist ASAP.
The next day I saw a wonderful physician named Dr. Fred Price at the Allegheny Health System in Pittsburgh. My husband Roy and my close friend Kathy were with me. Kathy is a nurse, so she was another set of eyes and ears. Dr. Price was very calming and reassuring. The appointment started out with the assumption that I would have surgery and chemo and be good to go. However, as the test results came in, it was clear that I was not a surgical candidate. It was obvious that this monster was out of control, and we would need to explore other options.
A Problem to Be Solved
After recovering from the initial shock, the rational brain kicked in. Despite the grim prognosis reported in every article I read, I decided I needed much more information. My amazing family and friends were all behind me. We mapped out a road trip to the major cancer centers. Here is where I went for consultation and what I found:
- Allegheny Health System in Pittsburgh – Wonderful, very competent and compassionate people but lacked research strength.
- University of Pittsburgh Medical Center – Very good facility, but I found other Cancer Centers to be more innovative.
- MD Anderson – Awesome facility, top researchers who are interested in making history to find a cure. MDA wants to cure cancer.
- Sloan Kettering – Advised me to come back if standard treatment did not work and maybe a clinical trial would be available.
- Johns Hopkins – Advised me to go home and spend time with my family. (Really?) So disappointed in JH.
- Huntsman Cancer Institute – Excellent facility and wonderful staff. Unfortunately for me, they only see about one GCS patient per year.
- Massachusetts General Hospital – I did not visit MGH on the first round. Too bad — Exceptional research and clinical facilities with a research lab to bedside model which enables the cancer center to speedily apply latest research findings to patients.
- University of California San Francisco (UCSF) – Did not have expertise or experience with GCS.
I Chose …
MD Anderson in Houston, Texas. MDA is rated as the top cancer hospital in the country with good reason. They are amazing, and I felt like everyone I met wanted to cure my cancer. I scheduled an appointment with Dr. Alpa Nick. Dr. Nick is direct and no nonsense, and I felt I could trust her judgment. If you read her bio, it was mind boggling that a woman so young could accomplish so much. I also believed that Dr. Nick and MDA were interested in finding a cure for me.
The first-line treatment for my cancer is carboplatin and paclitaxel (Taxol) which is administered intravenously in one day over 6 hours every 3 weeks. The other first-line treatment is ifosfamide and Taxol which is delivered inpatient over 3-4 days every three weeks. Ifosfamide is pretty rough on the system. Research shows that the outcome between the two therapies tends to be the same. Every physician except UPMC recommended Carboplatin and Taxol. So that is what we decided to start with. Three cycles of Carboplatin and Taxol and repeat CT scans. If the tumor shrinks, then off to surgery. I was certain it would work. First treatment was on May 5, 2015.
You lose your hair with Taxol. I thought I was prepared with wigs, hats and scarves. Everyone was so supportive, but wigs are hot and itchy, and scarves and hats are the tell-tale sign of chemotherapy. I found out about chemo caps many months later. Too late for me. Once the hair is gone, it’s gone. It has to grow back.
I was rescanned at MDA on July 12, 2015. Dr. Nick reported that there were lesions on my liver and lung. The Carbo/Taxol did not work. Dr. Nick wanted to biopsy the lung and liver lesions to see if I might be a candidate for a clinical trial. Regardless, I would start on the regimen of ifosfamide and Mesna (to reduce side effects of ifos on the bladder). MDA delivered this treatment as an outpatient unlike the other facilities. After 3 treatments, I would be scanned again. I was less certain of success this time.
Finally, some good news came from the biopsy. The lung lesion was an inflammatory nodule and not metastatic disease. So Happy! The liver lesion was carcinosarcoma and was sent off to a lab called Foundation Health in Boston to be genetically profiled. That would take about 4 weeks and tell us if I had any targetable genetic mutations. This is the new direction in cancer care — harnessing the power of the immune system to attack mutations that cause disease. If standard protocols fall short of a cure, clinical trials are next. I would continue with standard therapy while waiting for the Foundation Health report.
The next scan was in August 2015. I was totally prepared for bad news and was so happy when Dr. Nick reported stable disease. Dr. Nick gives no false hope, so I knew that this was great news. So Happy! Continue on with standard therapy until it stops working. Scans every few months to keep a close eye on the monster. It’s good the Ifosfamide was working because the Foundation Health report came back. While there were some targetable mutations, the mutations were not associated with any current clinical trials. The next scan was in October 2015 and again showed stable disease. I felt great, and my hair was starting to grow back. Ifosfamide does not cause hair loss. Yeah!
While the Ifosfamide was working, I knew that it would eventually wear out its welcome. That’s the problem with chemotherapy. It tends to work for a while, and then the cancer finds a way to circumvent the drug. I wanted to explore my options in terms of other therapies and clinical trials. If the Ifosfamide stopped working, I wanted to be prepared. This search is what took me to Massachusetts General Hospital (MGH) and Dr. Michael Birrer, a world-renowned expert in GYN Oncology, head of the GYN Oncology research program at MGH, and faculty member at Harvard Medical School. I was referred to Dr. Birrer by Dr. Bruce Chabner who is related to a close friend of my sister’s. Dr. Chabner is renowned in his own right and has made many groundbreaking contributions to the field of oncology. It was a miracle that I was able to make this connection. I would not have had access to this level of expertise were it not for people with connections.
The GCS Project is Born
Again, my wonderful family and friends have helped me all along the way. We met with Dr. Birrer several times and quickly became convinced of the brainpower and innovation of Dr. Birrer and MGH. The initial consult included Dr. Birrer, Dr. Marcela Del Carmen who is a GYN ONC surgeon, and Dr. Dejan Jurik who is head of clinical trials at MGH. I believed that each person I came into contact with was brilliant, energetic and competent and wanted to help me.
Dr. Birrer’s first recommendation was to change the therapy from ifosfamide to cyclophosphamide (Cytoxan) with bevacizumab (Avastin). He believed that ifosfamide is too toxic, and my bone marrow would be depleted within a few months. This could affect my eligibility for future clinical trials. Cyclophosphamide works in the same way as ifosfamide but is less toxic and can be taken as a pill every day. Avastin is a new therapy, a monoclonal antibody that inhibits new blood vessel growth, which has shown some positive results for ovarian cancer. It is delivered via an infusion over 30 minutes every 3 weeks. Since it has very few side effects, a high quality of life is maintained.
I shared with Dr. Birrer my frustration about the lack of research interest in GCS and asked him how we could encourage research on this cancer. He frankly said, “Money.” I asked him how much money, and Dr. Birrer said that for $300,000, he would be able to launch a research initiative that would use existing technology to investigate the GCS tumor. It was then that we decided to raise $300,000 to support targeted research on GCS. Dr. Birrer was willing to provide the brainpower, and I knew I could raise the necessary funds.
That is how this all began …
It’s hard to know how much to include in my story. There are so many people and events that I could talk about. But I want this website to be a place of hope and help — not about me. For the first time, Dr. Birrer and his team will focus on GCS and its cure. It will take a community of people to make this happen. My dream is to harness the power of the people I love, the women who are affected by this disease, and the medical community to discover the next game-changing breakthrough to cure this disease.
Read an update on My Story that Diane posted March 2017.