The Path to Diagnosis

You have breast cancer—four terrifying and instantly transformative words. In its most clinical form, the diagnosis can give a masquerading health culprit a name and illuminate a path forward for patient care. A diagnosis may even bring a sense of peace, “At least I know what I have.” For Metaplastic Breast Cancer (MpBC) patients, the journey to the correct diagnosis harbors extra challenges.

The experiences below are from our MpBC Global Alliance Community. You’ll see each is unique. If you are navigating your own MpBC diagnosis, you are not alone. Read the below and join our community on Facebook.

Carolyn R. | Triple Negative Metaplastic Carcinoma

Initial Symptoms: Small, painless lump approximately 1 inch in size

Initial Diagnosis: Invasive Ductal Carcinoma

Time from Initial Diagnosis to Metaplastic Diagnosis: Two years and four months. My initial diagnosis was corrected when I was considering entering a test trial to prevent recurrence of breast cancer. A new pathologist reviewed my original pathology slides from the hospital that did my surgery and gave me the MpBC diagnosis.

Notes of Interest:

I received my diagnosis less than year since my most recent mammogram.

Advice to Others: All of your treatments will rely on the pathology report. I wish I had known the importance of having the pathology performed by a pathologist that specializes in breast cancer. Most community hospitals only have general pathologists, and not breast cancer specific specialists. If your pathology was performed by a general pathologist, get a second pathology opinion from a large cancer center or teaching hospital that has specialists. Once you have a MpBC diagnosis, get a treatment plan from a doctor specializing in MpBC.

Elizabeth S. | Triple Negative Metaplastic Carcinoma

Initial Symptoms: Small, marble-size lump in breast

Initial Diagnosis: Invasive Ductal Carcinoma

Time from Initial Diagnosis to Metaplastic Diagnosis: Six months

Notes of Interest:

The lump grew fast. Within the two weeks between discovery and the initial breast MRI, the mass grew to 5cm.
The tumors were inconsistent in their response to chemotherapy. There was an initial response to AC, but the tumor grew again while on Taxol.
Doctors dismissed concern about tumor re-growth and said it was probably scar tissue.

Advice to Others: Keep pushing. If doctors decline a scan or test, demand documentation of their denial and medical rationale. Get a second and third opinion. Talk to others with your diagnosis.

Kathleen M. | Triple Negative Metaplastic Carcinoma with Spindle Cell and Squamous Cell Differentiation

Initial Symptoms: Small lump

Initial Diagnosis: Triple Negative Metaplastic Carcinoma with Spindle Cell and Squamous Cell Differentiation

Time from Initial Diagnosis to Metaplastic Diagnosis: Same time

Advice to Others: Be careful what you read. Everyone is different. Try not to stress; it makes it all worse.

Laura H. | Metaplastic Carcinosarcoma

Initial Symptoms: Painful breast lump

Initial Diagnosis: Sarcoma

Time from Initial Diagnosis to Metaplastic Diagnosis: One month

Advice to Others: Scan often – even during treatments. Research and become your own best advocate.

Sallie P. | Triple Negative Metaplastic Carcinoma with Squamous Cell Differentiation

Initial Symptoms: General feeling of being unwell with fatigue and generalized pain that doctors designated as fibromyalgia. All bloodwork and tests done to explore symptoms were normal. The symptoms lasted approximately five months before two lumps presented – one in the left breast and one in the left armpit.

Initial Diagnosis: Two independent primary cancers – invasive ductal carcinoma in the breast and squamous cell carcinoma in the armpit.

Time from Initial Diagnosis to Metaplastic Diagnosis: Nine months. The diagnosis kept changing from two independent primary cancers to one primary cancer.

Notes of Interest:

No known genetic indicators or risk factors for breast cancer, and Sallie was up to date on preventative screenings.
The lumps grew fast and seemingly appeared overnight.
The tumors were inconsistent in their response to chemotherapy and immunotherapy, with one growing smaller and the other one initially shrinking but then continued growing.
Doctors initially dismissed feedback that tumors were growing and said that tumors could behave “funny” and get inflamed while undergoing chemotherapy.

Advice to Others: It took going to four leading cancer hospitals before receiving a clear diagnosis and finding a doctor who regularly treats MpBC patients. If you aren’t comfortable with the information you’re getting related to your diagnosis, find another doctor. This disease demands elevated care and out-of-the-box thinking – don’t settle.

Vicky P. | Triple Negative Metaplastic Breast Cancer with Spindle Cell Differentiation

Initial Symptoms: None

Initial Diagnosis: Triple Negative Metaplastic Breast Cancer

Time from Initial Diagnosis to Metaplastic Diagnosis: Just over three weeks.

Notes of Interest:

No family history of cancer.
The tumor was found early by a routine mammogram.

Advice to Others: Be a squeaky wheel. If you’re in pain, ask for better painkillers. If you’re super nauseous, ask for better nausea meds. There is zero reason to suffer any more than you have to during treatment.