Stage IV Invasive Lobular Carcinoma: Lisa's Patient Story
This breast cancer diagnosis at a glance
- Stage at diagnosis
- Stage IV
- Subtype
- Invasive Lobular Carcinoma
- Sex
- Female
- Spread to
- Bone
- Treatment
- surgery and hormone therapy
- Outcome
- Setback / Progression
Treatment course, step by step
- 2017 inverted nipple followed 6 weeks later by swollen right upper breast area
- mammogram, sonogram, and biopsy diagnosed lobular breast cancer within 2 weeks
- cancer first thought Stage I, grade 1
- bilateral mastectomy with reconstruction 6 weeks later
- final pathology Stage II, grade 2, 5.4 cm tumor
- tamoxifen because recurrence risk was thought low
- back pain 3 years later; March 2020 X-ray did not show cancer
- October CT suspicious for cancer and PET scan verified metastatic ILC in the bones.
What happened, in summary
Lisa was living in Kentucky with her husband, 3 sons, and 7 grandchildren when she learned that her invasive lobular carcinoma had returned as metastatic disease. Her first signs had appeared in 2017: an inverted nipple, followed about 6 weeks later by swelling in the right upper breast. She quickly called her doctor. Mammogram, sonogram, and biopsy led to a lobular breast cancer diagnosis within 2 weeks. The cancer was first thought to be Stage I, grade 1, and her doctor recommended bilateral mastectomy with reconstruction. Surgery took place 6 weeks later. Afterward, Lisa learned the cancer was actually Stage II, grade 2, with a 5.4 cm tumor. Because the recurrence risk was thought to be low, she was given tamoxifen. Three years later, Lisa developed back pain and thought it might be arthritis. An X-ray in March 2020 did not show cancer, but the pain became severe enough that she raised it again in October. A CT scan looked suspicious for cancer, and a PET scan confirmed metastatic ILC in the bones. Lisa later used her experience to teach family and friends about self-breast exams, nipple changes, mammogram limitations, and the importance of self-advocacy. She emphasized that ILC can return in bones without an obvious breast-area warning.
Where this story comes from
This is a lay summary of an account first published by Lobular Breast Cancer Alliance. Read the original in full
How we source and attribute stories Accuracy and limitations
These are lay summaries of published cancer stories, for information only. No two cancers behave the same way, and nothing here predicts your own diagnosis or replaces advice from your oncology team. Read the full disclaimer