Our journey with cancer began in March of 2014. At that time, my wife found a lump on the underside of her left breast. She knew, without a doubt, that it was breast cancer. Doctors were certain it was a clogged milk duct, as she was still nursing our son. She insisted it wasn't and wouldn't "wait and see" as had been recommended. Eleven days later, that diagnosis was confirmed. She was diagnosed with Stage 2A ER/PR+ Breast Cancer. At that time, she had a career as an independently contracted School Psychologist, a career she had to put on hold. She underwent a bilateral mastectomy with latissimus dorsi flap reconstruction and then started chemotherapy. She had 4 dense doses of AC (Adriamycin and Cytoxan) followed by 12 Taxol treatments. She then had her expander to implant exchange surgery and we were on our way to our "new normal". A time my wife took to enjoy and reconnect with our 3 young children (Michaela age 9, Kathryn age 7, and Oliver age 3 now).
Ten months later, on September 17, 2015 while at dance class with our daughters she felt a swollen lymph node in her neck. She looked at me and no words needed to be exchanged. She was certain it was cancer. Eight days later she was diagnosed with Stage IV Metastatic Breast Cancer. Her cancer had recurred and was now in her supraclavicular and mediastinal lymph nodes. Interestingly, her cancer had morphed to Triple Negative Breast Cancer (TNBC). TNBC accounts for approximately 15% of breast cancer diagnoses, is less understood, and tends to be more aggressive. All of this just one week after she had accepted and started a new position as a School Psychologist at a residential facility working with her favorite population of students. She had to painfully accept that her career as a School Psychologist was over.
It was agreed by several medical oncologists at multiple facilities that her best course of treatment was to start chemotherapy (Carboplatin in combination with Gemcitabine - 12 treatments) in hopes of shrinking her cancer enough to allow for radiation therapy (because cancer was located so close to her heart). This combination of chemotherapy was difficult on her and required platelet transfusions. However, it did its job in shrinking the cancer enough to allow for radiation therapy. She then had 28 targeted radiation treatments in addition to receiving Carboplatin. Our next scans showed that radiation therapy was effective in targeting her cancer in her supraclavicular and mediastinal lymph nodes. However, results further revealed that during that time her cancer had progressed to her liver.
It was then recommended, again, by several medical oncologists at multiple facilities that a clinical trial would be the next best step for her, as she still had a low tumor burden. We selected a clinical trial at Spectrum Health (4 hours from home). This was a Phase 1 clinical trial that used chemotherapy (large doses of Taxol and Carboplatin) with an AKT1 inhibitor. This clinical trial was exciting, as it targeted a specific genetic mutation that is present in my wife's cancer. After 2 cycles, with much toxicity and side effects, a scan revealed new lesions on her liver. We were out of this clinical trial and searching for another one. It was again, recommended by several medical oncologists, that a clinical trial with immunotherapy would be the next best option for her. After much searching and dead ends (because TNBC cohorts for immunotherapy clinical trials fill up quickly), we found a trial at Karmanos Cancer Center. We signed consent only to find out days later that she was ineligible because of a low platelet count and the trial sponsor would not allow for any type of medical intervention to elevate them. So, I was back to searching for more clinical trials with dead end after dead end. I finally found a clinical trial at Memorial Sloan Kettering Cancer Center (MSKCC) in New York that looked especially promising. It is a Phase 2 clinical trial with immunotherapy in combination with radiation therapy (which we know has been effective in targeting her cancer). However, the only caveat was that she had to have additional metastases. My wife was confident that she would be eligible, as weeks earlier she had a sudden onset of pain in her right shoulder. A pain that went right to the bone. Again, she was certain it was cancer. And again, she was right. Her most recent PET scan on June 14, 2016 revealed that her cancer had metastasized to her right shoulder acromion.
I can't explain it, but she has been so in tune with her cancer. She has known what was going on with her body before scans have been able to confirm it. It's eery. At one appointment she asked the oncologist to show her where her liver lesions were. He responded "Sure, I'll pull them up on the scan." She replied "No, I want you to physically show me on my body because I feel them." He looked at her and said "I don't think you do." To which she responded while pointing "I think it's here, here, and here." The doctor paused and said while pointing "Yes, it is here, here, and here." All the places she just pointed. The only explanation he could offer is that her lesions are pressing on the lining of her liver and that is pushing on nerve endings. But he was still so surprised because the lesions are so small.
Back to the clinical trial at MSKCC. My wife had a PET scan on Tuesday and the following day we received a call that we were possibly eligible for this clinical trial but had to pass all screening measures first. We had to be in New York that Friday to start testing for eligibilityand hold her spot in the trial. So, we quickly packed our bags and off we were. We had no time to research and/or plan for this trip. While staying overnight in Pennsylvania on our way, we received a phone call informing us that MSKCC is not an in network provider for our insurance company. This means that although we will receive some insurance benefits, they will be at a drastically reduced rate and our already accrued deductible will not apply towards this treatment. This means starting over with an $11,000 deductible before benefits kick in. We made a decision to proceed regardless. After 3 days of blood work, scans, and a biopsy, we found out that she is eligible and has slot 9 of 17 nationwide slots available. Provided this trial is effective, we will be traveling to New York every three weeks for the next two years. While we have been fortunate enough to accommodate this financial burden for more than two years (largely due to the fact that I work for a generous employer who has allowed me to take a great deal of paid time off), with these additional insurance costs and travel expenses we are asking for any financial assistance that can be provided. Additionally, due to the necessity of finding and getting my wife started with this trial, I have had to take a short term leave of absence from work. This is only adding to the financial burden we are experiencing, as I have been the primary financial provider for our family since 2014 when our journey first began. We are hopeful and optimistic that this trial will provide long term benefits and ultimately more time for my wife to watch our children grow up. Any funds left available at the end of this will be donated to research for Metastatic Breast Cancer. No longer with a career as a School Psychologist, my wife has taken on a role of advocacy and education.
Estimated breakdown of funds:
Insurance deductible calendar year 2016 $11,000 Insurance deductible calendar year 2017 $11,000 Insurance deductible calendar year 2018 $11,000 Estimated cost of each trip including travel (driving), lodging, and meals $1,000 (assuming this trial is effective, we will have to make a minimum of 34 trips to New York in the next two years.) $34,000
Some trips in the winter months will be by plane, which is more expensive and are not figured into the $34,000.
We are working with a social worker at MSKCC to help find assistance with traveling costs. My wife is networking with fellow breast cancer sisters in the New York and New Jersey area for tips on traveling and saving expenses.
Here is also a Thirty One Party to help raise funds for Tatum!!
Please follow Tatum on her Facebook page:
- Mary Culbertson
- Richard Cusick
Organizer and beneficiary