I received an appointment to see a surgeon three weeks after receiving my breast cancer diagnosis. It felt like a very long time to wait, given the size and rapid rate of change of the tumour. But my GP assured me that everything that should be done was being done. The referral was labeled “urgent” but that’s all she was able do. She was empathetic, and said that the hardest part of everyone’s cancer journey is waiting for information and treatment, when it feels like nothing is happening. She was definitely correct about that.
One dismal night, I was searching for more information online and found a page that described my tumour perfectly. I matched every symptom for Inflammatory Breast Cancer (IBC). The page talked about how aggressive this form of cancer is, and how it is imperative to get prompt treatment. Then I thought back and realised that my GP had never actually examined me. She called me a few times and I saw her locum once, but we never met face to face for an exam. And all the reports were being sent to her, assuming that she would be the main point of contact. I began to have deep misgivings that I was falling through multiple “cracks in the system”. Most worrying was that the one person in charge of my care had not actually examined me.
Panic at the disco…
I had never experienced a panic attack before that night. I hope I never do again, and I have a new respect and empathy for people who suffer with them regularly. That night I was full of panic and dread. I felt like the days I had left with my kids were slipping away like sand through my fingers with each day that went by without treatment. I couldn’t stop crying and hyperventilating for at least half an hour. My arms went numb, my legs were like jelly, and I was still a wreck in the morning.
Kenneth and I stayed home the next day to focus 100% on being seen. I talked to an RN at the South Island Integrated Breast Cancer Centralized Referral service. She read the MRI report out to me (remember, 9 x 9 x 8.5 cm). But she said I should just wait to see the surgeon. I asked, “What if this is inflammatory breast cancer (IBC)?” She answered, “It’s not as if it just appeared overnight”, to which I answered, “That’s exactly what it was.” She didn’t have much to offer though, other than calling the surgeon’s office again to ask for an earlier appointment.
(I had previously spoken to an RN at the same office some time before the MRI was done. She said that from my description it did sound possible that it could be IBC, but that there wasn’t anything we should do differently because of it.)
Would you like some drugs with that?
I also went back to see the same Urgent Care Clinic physician who was the first to send me for testing. Thankfully she happened to be on duty that day. She read the MRI report, but said there was nothing to be done except wait to see the surgeon. She prescribed Lorazepam for my anxiety, but I didn’t take any. No pill can take away the fear of having a big scary problem and feeling you’re unheard, somehow falling through the cracks in the system. I left in tears and ashamed, after she said it would be unfair to others waiting in line for care if she were to call the surgeon’s office to ask for an early review of the MRI report.
Fast forward two weeks to the appointment with the surgeon on Sept 3, 2024. She was definitely an ally, a sympathetic ear, and quite concerned about the slow timeline of events. She said that I would need several months of chemotherapy before surgery to remove the tumour. If she had referred me to the Victoria BC Cancer Centre where I live, it would have been another 4 – 6 weeks before my first chemo treatment began. That’s a total of 7 – 9 weeks from biopsy result to first treatment. But remember… it only took 8 weeks from initial discovery for the tumour to grow to 9 x 9 x 8.5 cm.
Happily, I didn’t have to wait that long. In the next post, learn how the BC Cancer Agency in Surrey came to my rescue and saved my life.
