Delayed Diagnosis of BIA-ALCL
Updated: Apr 16, 2019
I had Allergan Natrelle Textured implants, Style 115, from 2009 to 2015
My Journey to Diagnosis:
I displayed no symptoms of BIA-ALCL.
I had a routine mammogram at age 50, and there was difficulty with left implant image. After having this mammogram, I was left with hard, marble lumps on my left breast.
An MRI confirmed that my implant was ruptured.
In July, 2015 Routine Rupture was diagnosed, so re-operation was scheduled. My Surgeon chose to replace the implants, despite the concerning appearance of the capsule.
The Pathology Report revealed that I had BIA-ALCL: CD30 positive & ALK negative.
Surgical oncology was performed by a Plastic Surgeon.
Oncology Staging & Chemotherapy Relapse:
Staging and lymphoma treatment was done at a Large Cancer Centre. Following a Stage IV diagnosis, my cancer failed to respond to standard lymphoma protocol with excruciating side effects from: (6) CHOEP and salvage chemotherapy (2) GDP; Gemcitabine, dexamethasone and cisplatin.
My failure to respond to lymphoma protocol is common within our patient group - our distinct solid tumour disease is a hybrid for hemapathology oncologists. We strongly recommend our Patient Group seek treatment from large academic cancer centres for best-practice approach.
After (4) Brentuximab treatments, through a clinical trial, I achieved N.E.D. (no evidence of disease). Brentuximab has proven itself in our Patient Group. We recommend Brentuximab as the first line of treatment for the 30+% in need of adjunct treatment. Most cannot access this targeted drug treatment without failure on existing Lymphoma protocol, for Insurance, Medicare or National Health Care.
Without the benefit of oncology recommendations via MedPub case reports for Stage 4, the Tumour Board opted for Stem Cell Transplant as my best chance to avoid recurrence. 90 Days post Stem Cell Transplant, I agreed with my Tumour Board, despite the lack of evidence for Radiation and BIA-ALCL, additional benefit may be achieved with 15 rounds of radiation. Radiation was targeted to the Pec muscle tumour only, as abdominal radiation risk out weighed the potential benefit.
Like all BIA-ALCL patients, I experienced financial decline in addition to my health decline.
Our symptomatic Canadian patients are being denied appropriate malignancy testing. Unlike other breast suspicions for malignancy, the presence of an implant changes the course for at risk patients. Our disease requires Plastic Surgeons to change their role and become Oncology investigators rather than relying only on aesthetic skill and training of their specialty.
This leap to investigative medicine is effecting women’s health.
Terri McGregor presented at the FDA Hearings on March 25, 2019.