Polling Snapshots from Group Member’s Entries

The following are “snapshots” (results) of Facebook polls conducted by the The Metaplastic Breast Cancer Global Alliance, Inc in collaboration with the Facebook groups The Metaplastic Breast Cancer Women’s Only Site and The Metaplastic Breast Cancer Support and Information Group.

The following data provides those interested in this rare breast cancer a “picture” of information that our diagnosed members are able to share.

These polls are completely voluntary and in no way are to replace your medical professionals advice or recommendations. Members of the Women’s Only site may see all comments that follow. Any questions relating to the following polls or inquiring about more information, please contact us at: admin@mpbcalliance.org .

Raising Global Awareness and Supporting Research into Metaplastic Breast Cancer

QuickLinks to Polls:

POLL # 16
Start Date: June 24, 2019
End Date: July 24, 2019

This poll was for Stage 4 Metaplastic members only- How did you find out that your disease had spread?

How did you find out your disease had spread?# of Members
How did you find out your disease had spread?:
I had symptoms that were suspicious of metastatic disease and therefore my oncologist supported recommending a scan
# of Members:
6
How did you find out your disease had spread?:
Oncologist supported follow up scanning after 3 months of initial treatment
# of Members:
2
How did you find out your disease had spread?:
Oncologist supported follow up scanning after 6 months of initial treatment
# of Members:
1
How did you find out your disease had spread?:
I had to insist on having a follow up scan after initial treatments
# of Members:
0
How did you find out your disease had spread?:
I was scanned during neoaduvant chemotherapy and disease progressed to stage 4 during treatment
# of Members:
0
 
9  diagnosed participants

POLL # 15
Start Date: June 23, 2019
End Date: July 23, 2019

After initial treatments for Metaplastic Breast Cancer, what was your follow up screening protocol?

Follow Up Protocol Used# of Members
Follow Up Protocol Used:
No scans unless I had symptoms, only follow up mammograms
# of Members:
33
Follow Up Protocol Used:
My oncologist was proactive with a scanning protocol (i.e. CT, PET, MRI, X-Rays, Bone Scans) approximately every 3 months
# of Members:
9
Follow Up Protocol Used:
My oncologist was proactive with a scanning protocol (i.e. CT, PET, MRI, X-Rays, Bone Scans) approximately every 6 months
# of Members:
7
Follow Up Protocol Used:
My oncologist was proactive with a scanning protocol (i.e. CT, PET, MRI, X-Rays, Bone Scans) approximately yearly following
# of Members:
3
Follow Up Protocol Used:
No scans, no mammogram with double mastectomy
# of Members:
3
Follow Up Protocol Used:
When I get symptoms my Oncologist sends me to get appropriate scans/CTs/MRIs
# of Members:
2
Follow Up Protocol Used:
Alternate between mammogram and MRI every six months and quarterly bloodwork
# of Members:
1
Follow Up Protocol Used:
I was diagnosed at Stage 4 and am scanned often
# of Members:
0
58  diagnosed participants

POLL # 14
Start Date: April 18, 2019
End Date: May 18, 2019

What Main Genomic Alterations have been detected from your Advanced Genomic Tumor Testing?

Advanced Genomic testing is very new. Because of this participants have found interpreting their results a little challenging.  Although we feel that this poll provides some insight, we believe that we will obtain more clarity in the near future. For more information, visit HERE

Advanced Tumor Testing# of Members
Advanced Tumor Testing:
No Advanced Genomic Tumor Testing Done
# of Members:
34
Advanced Tumor Testing:
TP53
# of Members:
7
Advanced Tumor Testing:
PIK3CA
# of Members:
4
Advanced Tumor Testing:
TET2
# of Members:
1
Advanced Tumor Testing:
CDKN2A/B
# of Members:
1
Advanced Tumor Testing:
NOTCH2
# of Members:
1
Advanced Tumor Testing:
XRCC3
# of Members:
1
Advanced Tumor Testing:
ATM Gene Alteration
# of Members:
1
Advanced Tumor Testing:
PIK3R1
# of Members:
1
Advanced Tumor Testing:
DNMT3A
# of Members:
1
Advanced Tumor Testing:
NF2
# of Members:
1
41 diagnosed participants

POLL # 13
Start Date: April 16, 2019
End Date: May 16, 2019

Were you initially misdiagnosed and what was your initial diagnosis before finding metaplastic?

Initial Diagnosis / Misdiagnosis# of Members
Initial Diagnosis / Misdiagnosis:
First diagnosis was metaplastic
# of Members:
45
Initial Diagnosis / Misdiagnosis:
Diagnosed with other type of breast cancer before metaplastic breast cancer
# of Members:
14
Initial Diagnosis / Misdiagnosis:
Was diagnosed as TNBC
# of Members:
10
Initial Diagnosis / Misdiagnosis:
Breast sarcoma / possible Angiosarcoma
# of Members:
3
Initial Diagnosis / Misdiagnosis:
Misdiagnosed 2 times a cyst - each time fluid drained
# of Members:
3
Initial Diagnosis / Misdiagnosis:
Was told my tumors were "nothing. Four months later mammogram still didn't detect the lumps, but ultrasound did.
# of Members:
2
Initial Diagnosis / Misdiagnosis:
Misdiagnosed as an infected lymph node by routine breast screen.
# of Members:
1
Initial Diagnosis / Misdiagnosis:
Initially diagnosed as benign fibroadenoma
# of Members:
1
Initial Diagnosis / Misdiagnosis:
Misdiagnosed as mucinous IDC. After lupectomy, diagnosed as IDC with metaplastic features
# of Members:
1
Initial Diagnosis / Misdiagnosis:
Mammogram did not detect the dime size lump, six months later, it did.
# of Members:
1
81 diagnosed participants

POLL # 12
Start Date: November 29, 2018
End Date: December 29, 2018

Thinking back to when you were initially diagnosed, what/who led you to decide on the direction you chose for your initial treatments?

Initial Influences on Treatment Decision/Direction# of Members
Initial Influences on Treatment Decision/Direction:
My local oncologist
# of Members:
20
Initial Influences on Treatment Decision/Direction:
Went directly to a large cancer/research facility due to the rare nature of metaplastic breast cancer
# of Members:
15
Initial Influences on Treatment Decision/Direction:
Did what my oncology surgeon said
# of Members:
12
Initial Influences on Treatment Decision/Direction:
A combination of my local oncologist and my own research
# of Members:
9
Initial Influences on Treatment Decision/Direction:
Local oncologist and a second opinion by a larger research hospital
# of Members:
5
Initial Influences on Treatment Decision/Direction:
Local oncologist was overwhelmed and this supported my decision of moving treatments to a large cancer/research facility
# of Members:
3
Initial Influences on Treatment Decision/Direction:
I was so confused and just did what my local oncologist suggested
# of Members:
2
Initial Influences on Treatment Decision/Direction:
A family member
# of Members:
1
Initial Influences on Treatment Decision/Direction:
Chemo with local then large center for surgery and radiation
# of Members:
1
Initial Influences on Treatment Decision/Direction:
Non-local specialist opinion and own research
# of Members:
1
Initial Influences on Treatment Decision/Direction:
Family doctor
# of Members:
1
Initial Influences on Treatment Decision/Direction:
Research publications only
# of Members:
Initial Influences on Treatment Decision/Direction:
Made my own decisions day by day
# of Members:
70 diagnosed participants

POLL # 11
Start Date: October 30, 2018
End Date: November 30, 2018

For Our Stage 4 Members Only: How long after initial treatments (Chemotherapy and Radiation) did you discover Metastatic Disease?

Metastatic Breast Cancer Diagnosis# of Members
Metastatic Breast Cancer Diagnosis:
0-6 months after initial treatments
# of Members:
10
Metastatic Breast Cancer Diagnosis:
During chemotherapy/radiation or neoadjuvant treatment
# of Members:
5
Metastatic Breast Cancer Diagnosis:
7-12 months after initial treatments
# of Members:
4
Metastatic Breast Cancer Diagnosis:
13-18 months after initial treatments
# of Members:
4
Metastatic Breast Cancer Diagnosis:
I was diagnosed stage 4
# of Members:
3
Metastatic Breast Cancer Diagnosis:
25-30 months after initial treatments
# of Members:
2
Metastatic Breast Cancer Diagnosis:
19-24 months after initial treatments
# of Members:
1
Metastatic Breast Cancer Diagnosis:
31-36 months after initial treatments
# of Members:
1
30 diagnosed participants

POLL # 10
Start Date: July 19, 2018
End Date: August 19, 2018

Did you test positive for the BRCA Gene?

Test Results for BRCA Gene# of Members
Test Results for BRCA Gene:
No- tested negative for both BRCA 1 and BRCA 2 genes
# of Members:
87
Test Results for BRCA Gene:
Yes- tested positive for only the BRCA 1 gene
# of Members:
13
Test Results for BRCA Gene:
Not tested for BRCA
# of Members:
13
Test Results for BRCA Gene:
Yes- tested positive for only the BRCA 2 gene
# of Members:
5
Test Results for BRCA Gene:
Yes - tested positive for both BRCA 1 and BRCA 2 genes
# of Members:
0
118 diagnosed participants

POLL # 9
Start Date: June 4, 2018
End Date: July 4, 2018

Did you have radiation treatments for Metaplastic Breast Cancer?

Radiation Treatments for Metaplastic Breast Cancer# of Members
Radiation Treatments for Metaplastic Breast Cancer:
Yes and no reoccurence in breast
# of Members:
69
Radiation Treatments for Metaplastic Breast Cancer:
No and no reoccurrence in breast
# of Members:
27
Radiation Treatments for Metaplastic Breast Cancer:
Yes and I had a breast reoccurrence
# of Members:
12
Radiation Treatments for Metaplastic Breast Cancer:
No and no reoccurrence in breast BRCA+
# of Members:
8
Radiation Treatments for Metaplastic Breast Cancer:
Yes and no reoccurrance in breast BRCA+
# of Members:
3
Radiation Treatments for Metaplastic Breast Cancer:
No and I had a breast reoccurrence
# of Members:
2
Radiation Treatments for Metaplastic Breast Cancer:
Yes both breasts and no reoccurrence in breast BRCA+
# of Members:
1
122 diagnosed participants

POLL # 8
Start Date: June 2, 2018
End Date: July 2, 2018

After your initial Metaplastic Breast Cancer Diagnosis was confirmed what was your initial treatment plan?

Initial Post Diagnosis Treatment Plan# of Members
Initial Post Diagnosis Treatment Plan:
Mastectomy then Chemotherapy
# of Members:
57
Initial Post Diagnosis Treatment Plan:
Lumpectomy then Chemotherapy
# of Members:
46
Initial Post Diagnosis Treatment Plan:
Neoadjuvant Chemotherapy then Mastectomy
# of Members:
28
Initial Post Diagnosis Treatment Plan:
Neoadjuvant Chemotherapy then Lumpectomy
# of Members:
9
Initial Post Diagnosis Treatment Plan:
Mastectomy Only
# of Members:
6
Initial Post Diagnosis Treatment Plan:
Lumpectomy/Chemotherapy/Mastectomy/ BRCA+
# of Members:
4
Initial Post Diagnosis Treatment Plan:
Lumpectomy/Chemotherapy/Mastectomy/ BRCA-
# of Members:
4
Initial Post Diagnosis Treatment Plan:
Lumpectomy/Mastectomy/Chemotherapy BRCA+
# of Members:
3
Initial Post Diagnosis Treatment Plan:
Lumpectomy/Rads only
# of Members:
3
Initial Post Diagnosis Treatment Plan:
Prophylactic Mastectomy/ DX/ Neoadjuvant Chemotherapy/ Lumpectomy/ BRCA+
# of Members:
1
Initial Post Diagnosis Treatment Plan:
Lumpectomy Only
# of Members:
1
Initial Post Diagnosis Treatment Plan:
Neoadjuvant Chemotherapy Only
# of Members:
1
Initial Post Diagnosis Treatment Plan:
Lumpectomy/Mastectomy/Chemotherapy BRCA-
# of Members:
Initial Post Diagnosis Treatment Plan:
# of Members:
163 diagnosed participants

POLL # 7
Start Date: June 2, 2018
End Date: July 2, 2018

Specific to Ultrasounds and detection of Metaplastic Breast Cancer whether or not you felt the lump: AT INITIAL DIAGNOSIS, did an Ultrasound capture your Breast Cancer?

Did an ultrasound capture your breast cancer# of Members
Did an ultrasound capture your breast cancer:
Yes
# of Members:
114
Did an ultrasound capture your breast cancer:
No
# of Members:
36
150 diagnosed participants

POLL # 6
Start Date: May 29, 2018
End Date: June 29, 2018

Specific to Mammograms and detection of Metaplastic Breast Cancer, whether or not you felt the lump: At initial diagnosis did a mammogram capture your breast cancer?

Did the mammogram detect a lump?# of Members
Did the mammogram detect a lump?:
Yes
# of Members:
94
Did the mammogram detect a lump?:
No
# of Members:
82
176 diagnosed participants

POLL # 5
Start Date: May 17, 2018
End Date: June17, 2018

How old were you when you were initially diagnosed with metaplastic breast cancer?

Age at Diagnosis# of Members
Age at Diagnosis:
40-49 years old
# of Members:
42
Age at Diagnosis:
50-59 years old
# of Members:
39
Age at Diagnosis:
60-69 years old
# of Members:
24
Age at Diagnosis:
30-39 years old
# of Members:
22
Age at Diagnosis:
70-79 years old
# of Members:
3
Age at Diagnosis:
20-29 years old
# of Members:
3
Age at Diagnosis:
80-89 years old
# of Members:
1
134 diagnosed participants

POLL # 4
Start Date: April 24, 2018
End Date: May 24, 2018

When intially diagnosed with Metaplastic Breast Cancer, my STAGE was: (please retrieve information from your STAGING NOTE).

Stage at Diagnosis# of Members
Stage at Diagnosis:
Stage 2A
# of Members:
35
Stage at Diagnosis:
Stage 2B
# of Members:
24
Stage at Diagnosis:
Stage 3A
# of Members:
12
Stage at Diagnosis:
Stage 1B
# of Members:
9
Stage at Diagnosis:
Stage 3B
# of Members:
8
Stage at Diagnosis:
Stage Unknown
# of Members:
6
Stage at Diagnosis:
Stage 1
# of Members:
5
Stage at Diagnosis:
Stage 1A
# of Members:
4
Stage at Diagnosis:
Stage 4
# of Members:
2
Stage at Diagnosis:
Stage 2
# of Members:
1
106 diagnosed participants

POLL # 3
Start Date: April 24, 2018
End Date: May 24, 2018

When diagnosed with Metaplastic Breast Cancer, my Histologic Grade was: (please retrieve information from your pathology report).

Histologic Grade at Diagnosis# of Members
Histologic Grade at Diagnosis:
Grade 3
# of Members:
101
Histologic Grade at Diagnosis:
Grade 2
# of Members:
14
Histologic Grade at Diagnosis:
Unknown
# of Members:
3
Histologic Grade at Diagnosis:
Grade 1
# of Members:
2
Histologic Grade at Diagnosis:
Grade 4
# of Members:
1
121 diagnosed participants

POLL # 2
Start Date: April 17, 2018
End Date: May 17, 2018

What are your hormone receptors? (please retrieve information from pathology report).

Hormone Receptors# of Members
Hormone Receptors:
Triple Negative
# of Members:
108
Hormone Receptors:
ER+ PR- HER-
# of Members:
11
Hormone Receptors:
ER- PR- HER2+
# of Members:
6
Hormone Receptors:
ER+ PR+ HER-
# of Members:
5
Hormone Receptors:
PR+
# of Members:
3
Hormone Receptors:
ER+ PR- HER2+
# of Members:
3
Hormone Receptors:
ER+ PR+ HER2+
# of Members:
1
Hormone Receptors:
switching: 1st dx of breast cancer: 20% ER+ > at mastectomy TN > mets to brain 60% ER+ > biopsy lymph node TN
# of Members:
1
Hormone Receptors:
Hormone Receptors Unknown
# of Members:
1
139 diagnosed participants

POLL # 1
Start Date: April 16, 2018
End Date: May 16, 2018

What is your Metaplastic Breast Cancer Subtype?

Metaplastic Breast Cancer Subtype# of Members
Metaplastic Breast Cancer Subtype:
Squamous
# of Members:
58
Metaplastic Breast Cancer Subtype:
Spindle
# of Members:
37
Metaplastic Breast Cancer Subtype:
Carcinosarcoma
# of Members:
23
Metaplastic Breast Cancer Subtype:
Spindle / Squamous
# of Members:
13
Metaplastic Breast Cancer Subtype:
Chondroid
# of Members:
8
Metaplastic Breast Cancer Subtype:
High Grade Adenosquamous
# of Members:
7
Metaplastic Breast Cancer Subtype:
Matrix
# of Members:
7
Metaplastic Breast Cancer Subtype:
Subtype Unknown
# of Members:
6
Metaplastic Breast Cancer Subtype:
Spindle & Chondroid
# of Members:
6
Metaplastic Breast Cancer Subtype:
Myxoid
# of Members:
2
Metaplastic Breast Cancer Subtype:
Spindle Sarcoma Mix
# of Members:
2
Metaplastic Breast Cancer Subtype:
Chondromyxoid
# of Members:
1
Metaplastic Breast Cancer Subtype:
Osteoid Matrix and Spindle
# of Members:
1
Metaplastic Breast Cancer Subtype:
Myxoid Matrix
# of Members:
1
Metaplastic Breast Cancer Subtype:
Chondroid Matrix with Squamous Differentiation
# of Members:
1
168 diagnosed participants