At the young age of 32, my daughter, Stephanie, was diagnosed with stage 3 breast cancer. She accidentally found a lump by merely running her hand over it. She received radiation and chemo from MD Anderson in Houston, Texas. There was no follow-up PET scan, yet one of their doctors told my daughter she was cancer-free. When Stephanie asked the doctor how she knew she was cancer-free, the doctor shot her a "how dare you question me," look. My daughter, being pretty meek, didn't pursue any further investigative action. Within a year of her double mastectomy and reconstruction, she was experiencing neck, spine and leg pain, as well as shortness of breath. She contacted her oncologist and was told to just contact her primary care physician.
Stephanies' shocking metastasis
After over a year of suffering from pain, and at least two ER visits, she emailed me and her sister, who is an RN, the results from her very first ER visit. An ER doctor noted Stephanie had nodules in her lungs, spots on her femurs, neck, and spine. This report was sent to her oncologist at that time, but apparently it was filed and not read. The last two and a half years of her life were a constant battle, and from her mother's eyes there was not much quality of life, but she was willing to suffer in hopes of a cure. She had been receiving treatments at a cancer hospital in Orlando for those two and a half years.
Stephanies' decision to stop treatment
In her last month of life, she opted to stop treatment of her liver to radiate her brain tumors that were discovered only a few months prior. I still question why she had to stop chemo during radiation treatments. After her 10th and final radiation, she beamed while ringing that bell. With that big smile on her face, she never realized how sick she was. Two days later she was taken by ambulance to the Orlando cancer hospital with seizures. She was told by her oncologist she was in liver failure and no more could be done for her. We started home hospice on a Monday, she passed on Saturday. Ten days from ringing that bell, she passed surrounded by family, with mom and dad holding her hands.
If something doesn't feel right, go with your gut feeling
My reason for sharing Stephanie's story is not for sympathy, but to implore those living with cancer to take an active role in your treatments. Don't be afraid to ask questions, challenge your doctor(s), do your own research. Most importantly, demand a PET scan to verify your breast cancer has not metastasized, so you can get immediate treatment if it has. May God give you peace, my love, and compassion to you all.
Do you have an MBC mentor/mentee?