Back Again?
In late February 2024, I felt a lump in my breast again. I couldn't imagine it was the same tumor, but I couldn't be sure. I went for imaging and back to Dr. M, who took a biopsy in her office. She called me later to tell me that I had another phyllodes tumor. My husband and I sat in her office and listened as she detailed the action plan: remove the tumor and work with Dr. U to make the area look nice. By this point, I had done more research on phyllodes tumors. I came armed with the knowledge that Duke University Hospital and MD Anderson Cancer Center recommended mastectomy for recurrent phyllodes tumors. By that point, I understood how dangerous a malignant phyllodes tumor could be - the prognosis is poor. Malignant phyllodes tumors do not typically respond to radiation or chemotherapy. I had mentally prepared to learn about mastectomy, but Dr. M told me that such a radical procedure wasn't needed. She also said I wasn't a good candidate for a post-mastectomy reconstruction because of my weight. I listened to and trusted her.
I had a lumpectomy in early March of 2024. When the pathology report came back, Dr. M told me that the tumor was malignant. She wanted to refer me to get started on radiation right away to prevent a recurrence. I was to see a radiation oncologist first, and I would see a medical oncologist when one became available. This plan felt out of order and wrong to me. Shouldn't I see the medical oncologist to make an action plan? Shouldn't the radiology and medical oncologists work together for the best outcome? Plus, I knew that malignant phyllodes tumors do not typically respond to radiation or chemotherapy. I reached out to the recommended providers and tried to wait patiently. Fear was a constant companion.
Changing Providers
In the meantime, I researched where to go for the best treatment for phyllodes tumors. I could consult with either or both MD Anderson or Duke on my case. Alternatively, I could switch my care to one of these medical groups. MD Anderson is only a few hours away from my home, while Duke is across the country. I decided to switch to MD Anderson, as I know they handle cancer daily and have protocols in place for phyllodes tumors, unlike the recommended local provider. I reached out to MD Anderson one morning in late March. They called me back the same day, and I was scheduled to meet with a medical oncologist early the following week. I met Dr. BZ, who reviewed my case, including the images and pathology reports. This is when I learned what I had not been told by Dr. W or Dr. M: the phyllodes tumors previously removed were borderline, and I should have had treatment accordingly. Treatment with recurrent phyllodes tumors involved full mastectomy. I needed to get scheduled for a mastectomy ASAP.
During this time frame, I had all kinds of bloodwork done, plus a range of X-rays, an MRI, and an MRI biopsy, as ordered by Dr. BN, my surgical oncologist. After reviewing all the data, in addition to all the previous reports, Dr. BN explained that another tumor was already growing back and that the pathology reports showed the margins were not large enough from the incision line and the tumor. The only way to be sure that the phyllodes tumor wouldn't return would be a complete mastectomy of the right breast. My care was coordinated with a plastic surgeon at MD Anderson, who would reconstruct a breast capsule and rebuild a breast. The good news? MD Anderson reclassified the most recent tumor removal to borderline. I was relieved.
While none of the doctors at MD Anderson made negative comments or disparaged the work of the doctors who had previously cared for me, I could tell by their reactions as I told (and retold) my story that I should have had a different experience with the treatment.
How Did I Feel About All This?
Angry. I felt so damned angry. I was angry at myself for not pushing Dr. M harder when I knew the research I had read differed so differently from her recommendation. I was angry that I didn't know that the previous tumors had been borderline. I was angry I hadn't gone to MD Anderson sooner. I was just angry, angry, angry. And scared.
No comments:
Post a Comment