A Plea to the Government From a Young Woman with Breast Cancer
I was diagnosed in November 2014 with stage 2, grade 2 Invasive Ductal Carcinoma. I was 35 years old, young for a breast cancer diagnosis. I had a single mastectomy just three weeks after my diagnosis. The pathology report showed that my tumour was strongly hormone positive, and that there was no lymph node involvement. In short, I was the perfect candidate for the Oncotype Dx test. One problem: I live in Nova Scotia, where the Oncotype test isn’t funded by the provincial health care system.
I knew about the Oncotype test, because a young family member had been diagnosed and treated for early stage breast cancer in Ontario. She had the test done as part of the standard practice of care in her province. She was able to make treatment decisions based on evidence specific to her tumour, something that Nova Scotians are currently not given easy access to.
After my surgery, I had resigned myself to the fact that I would receive chemotherapy, as this is currently the protocol for women with breast cancer in my province. I was willing to do it without the information available from the Oncotype test, as I was unable to afford the $4800 expense, and I didn’t want to ask for a loan or gift of that amount.
I underwent the preliminary tests to determine if my heart could withstand chemotherapy. I went to the hospital’s chemotherapy information session, in which I was the only participant under age 70. I asked questions about fertility, job retention, and whether it would be safe for me to ride public transit during chemo. During a break in the session, one of the other participants asked me if I wouldn’t mind asking my questions to the instructor after the session because she (correctly) identified that my chemotherapy fears were dramatically different from the rest of the group’s.
In a meeting with my oncologist days before I was scheduled to begin chemo, with my family present, he strongly recommended that we find a way to have the test done, and my wonderful parents agreed to pay for it without hesitation. There was still time to delay chemotherapy until the test results came back, without compromising its effectiveness. I consider myself very fortunate to have parents who were able to afford the test, and generous enough to offer to pay on my behalf. Many women are not so lucky.
When the test results came back, I was blown away. The Oncotype test gives you a score out of 100, with a high score indicating that there is a high chance of breast cancer recurrence, and a strong likelihood that chemotherapy will be helpful in reducing this risk of recurrence.
My score was three. Three! That’s about as low a score as you can get on the Oncotype test, which means that undergoing chemotherapy would have been completely unnecessary.
My province would have assumed the cost and the risks for me to receive chemo, without knowing that it would have next to no benefit. How many women are being asked to compromise their health for no good reason other than that it’s the provincial protocol?
Chemotherapy is a costly treatment in itself. There’s the cost of the medication, but there’s also the costs of:
- Preliminary tests to determine if a person is well enough to receive chemotherapy
- The salaries of health care workers to administer chemotherapy safely, and to monitor the person’s health during treatment
- Blood work before each chemotherapy session
- Surgical procedures (for some recipients) for chemo administration device insertion, like Port-a-Caths
- Cleaning and maintenance costs of medical equipment, and treatment centre rooms
- Medical care for secondary health complications from chemotherapy, including hospitalizations and emergency room visits due to infection and dehydration
- Medical (and psychiatric or psychological) care for a person who has long-lasting, even lifelong side effects and harm from receiving chemo treatments
There’s also the potential cost to governments in supporting women if they’re unable to work during and after chemotherapy, whether that be through employment insurance, income assistance, or employer’s insurance. Compared to the cost of receiving chemotherapy, a $4800 price tag for a prognostic test is miniscule.
For women who receive the Oncotype test and score in the higher range, there would be confidence that the risks of chemotherapy will have personal benefit, and the costs to the province would be easily justified. For the women who score low, the financial cost to the Nova Scotia health care system would be dramatically reduced.
The Oncotype test is also valuable to doctors in determining treatment plans that are unique and highly specific to the individual patient’s needs. This, of course leads to better outcomes in treatment effectiveness.
My parents’ generosity saved me from unnecessary chemotherapy. I sincerely hope that the Oncotype test will be funded for all eligible women in Nova Scotia, in order to allow for people to make evidence-informed decisions about their breast cancer treatment. I hope that the people in charge of making decisions to fund the Oncotype test read my story and recognize the importance of this test becoming part of Nova Scotia’s standard practice of care.- Heather from Nova Scotia, diagnosed with breast cancer at age 35