Breast implant-associated anaplastic large cell lymphoma
Prepared with OnCo (onco.cc/prep/breast-implant-associated-alcl/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
12 on the sheet- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example CD30 on the large cells in the seroma fluid, which is how the diagnosis is made, Absence of ALK, as in systemic ALK-negative anaplastic large cell lymphoma, Whether the disease is confined to the capsule or has formed a mass or invaded, which is the main determinant of outcome, The implant surface: cases are almost exclusively associated with textured implants, Amplification at 9p24.1 with PD-L1 overexpression in more than half of cases, and activating mutations of STAT3, STAT5B, JAK1 and JAK2), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
- 5.For my situation (a late swelling around a breast implant), which of the standard options do you recommend and why?
- 6.For my situation (disease confined to the capsule), which of the standard options do you recommend and why?
- 7.For my situation (disease that has formed a mass or spread), which of the standard options do you recommend and why?
- 8.Am I a candidate for Brentuximab vedotin, and what side effects should I expect?
- 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 10.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 11.I read that “The absolute risk is small and the exposure is very common, so the right advice to a woman who already has textured implants and no symptoms is a question about communication rather than about oncology; current guidance is not to remove them”. How does that affect my plan?
- 12.I read that “Why a textured surface and not a smooth one is not fully explained, and the proposed mechanisms, chronic inflammation and an allergic response to the surface, have not been shown to be the cause”. How does that affect my plan?
The words I may hear
- Breast implant-associated anaplastic large cell lymphoma: A rare lymphoma that grows in the scar capsule around a breast implant, usually years later, and usually shows itself as sudden swelling of the reconstructed breast from fluid around the implant.
- B-cell, T-cell and NK-cell lymphoma: The first thing a lymphoma report says is which kind of lymphocyte the cancer came from.
- Nodal and extranodal lymphoma: A lymphoma that starts in a lymph node is called nodal; one that starts in an organ is called extranodal.
- Radiotherapy in lymphoma: involved-site fields, 24 Gy, 4 Gy and total skin electron therapy: Lymphoma is one of the most radiation-sensitive cancers there is, so the doses are low and the fields are small.
- The two lymphoma classifications of 2022 (WHO-HAEM5 and ICC): Since 2022 there have been two reference classifications of lymphoma rather than one, published within months of each other by overlapping groups of experts.
Tests and results to bring
Biomarker results to ask for: CD30 on the large cells in the seroma fluid, which is how the diagnosis is made, Absence of ALK, as in systemic ALK-negative anaplastic large cell lymphoma, Whether the disease is confined to the capsule or has formed a mass or invaded, which is the main determinant of outcome, The implant surface: cases are almost exclusively associated with textured implants, Amplification at 9p24.1 with PD-L1 overexpression in more than half of cases, and activating mutations of STAT3, STAT5B, JAK1 and JAK2.
Scans and tests linked to this cancer: Histopathology & immunohistochemistry.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- A late swelling around a breast implant: A seroma appearing around a breast implant more than a year after the operation is aspirated and the fluid sent for cytology and for CD30 immunohistochemistry, rather than simply drained. That single step is what makes the diagnosis, and draining without testing is how it is missed. The same applies to a new mass in the capsule or to capsular contracture appearing years after surgery. Imaging, usually ultrasound in the first instance, maps the fluid and any mass. (Histopathology & immunohistochemistry, CD30, Breast implant-associated anaplastic large cell lymphoma)
- Disease confined to the capsule: Complete removal of the implant together with the whole capsule, intact where it can be done, and removal of any associated mass. For disease that has not left the capsule this is usually the whole of the treatment, and WHO-HAEM5 describes the entity as usually non-invasive and associated with an excellent outcome. Removal of an implant on the other side is discussed case by case. Women with implants and no symptoms are not advised to have them removed. (Breast implant-associated anaplastic large cell lymphoma, Histopathology & immunohistochemistry)
- Disease that has formed a mass or spread: Staged and treated as a CD30-positive T-cell lymphoma, on the pathway used for systemic anaplastic large cell lymphoma, because WHO-HAEM5 records that invasion of adjacent structures worsens the outlook. Radiotherapy to the chest wall is used in some series for disease that cannot be removed completely. The evidence is case series; there are no trials and there will not be, because the great majority of patients are cured by surgery. (ALK-negative anaplastic large cell lymphoma, Brentuximab vedotin, Radiotherapy in lymphoma: involved-site fields, 24 Gy, 4 Gy and total skin electron therapy, Peripheral T-cell lymphomas (including cutaneous T-cell lymphoma))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.