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 group The Metaplastic Breast Cancer Women’s Only Site.

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 #1 (4/16/2018) What is your Metaplastic Breast Cancer Subtype?
Poll #1B (9/5/2019) What is your Metaplastic Breast Cancer Subtype?
Poll #2 What are your hormone receptors? (please retrieve information from pathology report).
Poll #3 When diagnosed with Metaplastic Breast Cancer, my Histologic Grade was: (please retrieve information from your pathology report).
Poll #4 When intially diagnosed with Metaplastic Breast Cancer, my STAGE was: (please retrieve information from your STAGING NOTE).
Poll #5 How old were you when you were initially diagnosed with metaplastic breast cancer?
Poll #6 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?
Poll #7 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?
Poll #8 After your initial Metaplastic Breast Cancer Diagnosis was confirmed what was your initial treatment plan?
Poll #9 Did you have radiation treatments for Metaplastic Breast Cancer?
Poll #10 Did you test positive for the BRCA Gene?
Poll #11 (10/30/2018) For Our Stage 4 Members Only: How long after initial treatments (Chemotherapy and Radiation) did you discover Metastatic Disease?
Poll #11B (9/12/2019) For Our Stage 4 Members Only: How long after initial treatments (Chemotherapy and Radiation) did you discover Metastatic Disease?
Poll #12 Thinking back to when you were initially diagnosed, what/who led you to decide on the direction you chose for your initial treatments?
Poll #13 (4/16/2019) Were you initially misdiagnosed and what was your initial diagnosis before finding metaplastic?
Poll #13B (9/18/2019) Were you initially misdiagnosed and what was your initial diagnosis before finding metaplastic?
Poll #14 What Main Genomic Alterations have been detected from your Advanced Genomic Tumor Testing?
Poll #15 After initial treatments for Metaplastic Breast Cancer, what was your follow up screening protocol?
Poll #16 For Stage 4 Metaplastic Members only- How did you find out your disease had spread?
Poll #17 When you were initially diagnosed with metaplastic breast cancer, how many past Metaplastic patients did your treating oncologist admit or state that they had seen?
Poll #18A Do You Take A Vitamin D Supplement Daily?
Poll #18B How Many International Units of Vitamin D Do You Take Daily?
Poll #19 How old were you when you were diagnosed with Metaplastic Breast Cancer (2023)
Poll #20 When initially diagnosed with MpBC what stage were you? (please retrieve from your staging note or pathology report) (2024 poll results)
Poll #21A Were you prescribed Ketruda (pembrolizumab) with clinical trial?
Poll #21B At what stage of diagnosis were you prescribed Ketruda (pembrolizumab)?
Poll #21C Was Ketruda (pembrolizumab) successful?
Poll #22 Do you value Functional Medicine (Complimentary, Integrative, Holistic, Alternative)? Would you like for members to share information about these supports that have helped them?
Poll #23 Were you aware that the NIH has a website that is titled the National Center for Complementary and Integrative Health https://www.nccih.nih.gov/

Poll #23

Start date: 2/16/2024
End date: 3/16/2024
Were you aware that the NIH has a website that is titled the National Center for Complementary and Integrative Health https://www.nccih.nih.gov/ ?

Were you aware that the NIH has a website that is titled the National Center for Complementary and Integrative Health ?https://www.nccih.nih.gov/	# of Members
Yes	1
No	50
# of Diagnosed Participants	51

Poll #22

Start date: 2/6/2024
End date:3/6/2024
Do you value Functional Medicine (Complimentary, Integrative, Holistic, Alternative)? Would you like for members to share information about these supports that have helped them?

Do you value Functional Medicine? Would you like information shared?	# of Members
Yes	49
No	16
Depends	8
Important concerns stated in the comments by members were: "These options should not replace or substitute standard of care." "Alternatives would be beneficial to complement and support building up the immune system."
# of Diagnosed Participants	73

Poll #21A

Start date: 1/8/2024
End date: 2/8/2024
Were you prescribed Ketruda (pembrolizumab) with clinical trial?

Were you prescribed Ketruda (pembrolizumab) with clinical trial?	# of Members
Yes	4
No	64
Unknown	0
Yes but not in trial	22
# of Diagnosed Participants	90

Poll #21B

Start date: 1/8/2024
End date: 2/8/2024
At what stage of diagnosis were you prescribed Ketruda (pembrolizumab)?

At what stage of diagnosis were you prescribed Ketruda (pembrolizumab)?	# of Members
Stage 1	5
Stage 2	28
Stage 3	12
Stage 4	10
Unknown	1
Never	52
# of Diagnosed Participants	108

Poll #21C

Start date: 1/8/2024
End date: 2/8/2024
Was Ketruda (pembrolizumab) successful?

Was Ketruda (pembrolizumab) successful?	# of Members
Yes	4
No	64
Too soon to know	0
Yes Ketruda was successful, however I had to stop due to severe side effects	22
Had to stop after one round	90
Important member comments were: "Keytruda was not an option or offered in 2011, 2015, 2017, 2018, 2021, 2023." "Had to stop after one round" "Not allowed due to autoimmune issues" "Severe side effects and watch your cortisol level!"
# of Diagnosed Participants	55

Poll #20

Start Date: 5/20/2024
End Date: 6/10/2024
When initially diagnosed with MpBC what stage were you? (please retrieve from your staging note or pathology report)

These results can be compared with poll #4 from 6/2018

Stage at Diagnosis	# of Members
Stage 1A	13
Stage 1B	14
Stage 2A	22
Stage 2B	35
Stage 3A	1
Stage 3B	9
Stage 3C	2
Stage 4	1
Stage Unknown	5
# of Diagnosed Participants	102

Poll #19

Start 5/10/2023
End 6/10/2023
How old were you when you were diagnosed with Metaplastic Breast Cancer
(these results are comparable to poll #5 from 6/2018)

Age at Diagnosis	# of Members
Under 20	0
20-25 years old	0
26-30 years old	0
31-35 years old	4
36-40 years old	9
41-45 years old	17
46-50 years old	19
51-55 years old	13
56-60 years old	14
61-65 years old	16
66-70 years old	6
71-75 years old	2
76-80 years old	3
81-85 years old	1
86-90 years old	0
90+	0
# of Diagnosed Participants	104

Poll #18A

Start Date: February 15, 2023
End Date: March 15, 2023
Do You Take a Vitamin D Supplement Daily?

Do You Take A Vitamin D Supplement Daily?	# of Members
Yes	63
No	17
Less Than Daily	11
Yes but not until after cancer diagnosis	1
# of Diagnosed Participants	94

Poll #18B

Start Date: February 15, 2023
End Date: March 15, 2023
How Many International Unites of Vitamin D Do You Take Daily?

How Many International Units of Vitamin D Do You Take Daily?	# of Members
5,000 IU	18
10,000 IU	2
1,000 IU	12
2,000 IU	8
None	10
800 IU	2
50,000 IU 3xs per week as prescribed by my endocrinologist and agreed to by my medical oncologist. I haven't been ill a single day!!!	1
# of Diagnosed Participants	53

Poll #17

Start Date: September 24, 2019
End Date: October 24, 2019
When you were initially diagnosed with metaplastic breast cancer, did your treating oncologist admit or state that:

How many Metaplastic patients has your oncologist's treated?	# of Members
Your treating oncologist had seen a few (less than 5) other patients with metaplastic breast cancer	40
Had not seen so many so there were going to treat it like triple negative cancer	26
You were your treating oncologist's first metaplastic breast cancer patient	15
My oncologist wouldn't say	7
Your treating oncologist had treated many others (more than 10) with metaplastic breast cancer	5
My oncologist had seen other cases (unknown number) but sent me to university based hospital with oncologist who treated many for second opinion	2
I was my oncologist's 6th, but had a mentor who had seen many more of us	1
Metaplastic wasn't found until treatment was completed	1
# of Members Polled	97

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
I had symptoms that were suspicious of metastatic disease and therefore my oncologist supported recommending a scan	6
Oncologist supported follow up scanning after 3 months of initial treatment	2
Oncologist supported follow up scanning after 6 months of initial treatment	1
I had to insist on having a follow up scan after initial treatments	0
I was scanned during neoaduvant chemotherapy and disease progressed to stage 4 during treatment	0
# of Diagnosed Participants	9

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

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 https://www.mpbcalliance.org/metaplasti-breast-cancer-genomic-testing/

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

Poll #13B

Start Date: September 18, 2019
End Date: October 18, 2019
Were you initially misdiagnosed, and what was your initial diagnosis before finding metaplastic?

Initial Diagnosis / Misdiagnosis	# of Members
First diagnosis was metaplastic	40
Was diagnosed as TNBC	62
Was diagnosed as having a cyst	19
Was first diagnosed TNBC and metaplastic sarcoma	7
I was diagnosed with IDC	7
Diagnosed with other type of breast cancer	4
Breast Sarcoma	2
Diagnosed from biopsy with benign fibroadenoma	2
Was diagnosed with an infected lymph node	2
Inconclusive	1
Initially diagnosed with radiation fibrosis	1
First diagnosed with Atypical Apocrine Adenosis (benign) from biopsy	1
Medullary	1
1st DX was cyst/ 2nd DX was Phyllodes tumor / 3rd DX was fibroadenoma - then went for 2nd opinion	1
# of Members Poilled	101

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

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

Poll #11B

Start Date: September 12, 2019
End Date: October 12, 2019
This poll was for Stage 4 Metaplastic members only- How long after initial treatments (chemotherapy and radiation) did you discover metastatic disease?

How long after initial treatments did you discover metastatic disease?	# of Members
0-6 months after initial treatment	6
7-12 months after initial treatment	4
13-18 months after initial treatment	4
During chemotherapy/radiation or neoadjuvant treatment	2
19-24 months after initial treatment	1
31-36 months after initial treatment	1
I was diagnosed stage 4	0
25-30 months after initial treatment	0
# of Diagnosed Participants	18

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

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
No- tested negative for both BRCA 1 and BRCA 2 genes	87
Yes- tested positive for only the BRCA 1 gene	13
Not tested for BRCA	13
Yes- tested positive for only the BRCA 2 gene	5
Yes - tested positive for both BRCA 1 and BRCA 2 genes	0
# of Diagnosed Participants	118

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
Yes and no reoccurence in breast	69
No and no reoccurrence in breast	27
Yes and I had a breast reoccurrence	12
No and no reoccurrence in breast BRCA+	8
Yes and no reoccurrance in breast BRCA+	3
No and I had a breast reoccurrence	2
Yes both breasts and no reoccurrence in breast BRCA+	1
# of Diagnosed Participants	122

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
Mastectomy then Chemotherapy	57
Lumpectomy then Chemotherapy	46
Neoadjuvant Chemotherapy then Mastectomy	28
Neoadjuvant Chemotherapy then Lumpectomy	9
Mastectomy Only	6
Lumpectomy/Chemotherapy/Mastectomy/ BRCA+	4
Lumpectomy/Chemotherapy/Mastectomy/ BRCA-	4
Lumpectomy/Mastectomy/Chemotherapy BRCA+	3
Lumpectomy/Rads only	3
Prophylactic Mastectomy/ DX/ Neoadjuvant Chemotherapy/ Lumpectomy/ BRCA+	1
Lumpectomy Only	1
Neoadjuvant Chemotherapy Only	1
Lumpectomy/Mastectomy/Chemotherapy BRCA-
# of Diagnosed Participants	163

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
Yes	114
No	36
# of Diagnosed Participants	150

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
Yes	94
No	82
# of Diagnosed Participants	176

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
40-49 years old	42
50-59 years old	39
60-69 years old	24
30-39 years old	22
70-79 years old	3
20-29 years old	3
80-89 years old	1
# of Diagnosed Participants	134

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 2A	35
Stage 2B	24
Stage 3A	12
Stage 1B	9
Stage 3B	8
Stage Unknown	6
Stage 1	5
Stage 1A	4
Stage 4	2
Stage 2	1
# of Diagnosed Participants	106

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
Grade 3	101
Grade 2	14
Unknown	3
Grade 1	2
Grade 4	1
# Diagnosed Participants	121

Poll #2

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

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

Poll #1B

Start Date: September 5, 2019
End Date: October 5, 2019
What is your metaplastic breast cancer subtype?

Metaplastic Breast Center Subtype	# of Members
Spindle Cell	43
Squamous	24
Carcinosarcoma	11
Chondroid	9
Matrix	7
Spindle & Squamous	6
Chondroid & Matrix Producing	4
Spindle & Osseous	3
Adeno-Squamous	3
Spindle and Chondroid	2
Chondroid Osseous	2
Subtype Unknown	2
Spindle-Cell-Chondroid-Matrix	1
Mucinous with Sarcamatois Features	1
Mesenchymal Differentiation - Matrix Producing and Spindle Cell Features	1
Spindle Cell and Chondroid/Osseous	1
Osteo Sarcomatous	1
Carcinoma with Osteoclast like Giant Cells	1
Spindle Cell and Matrix Producing	1
Chondroid and Osseous, Spindle-Cell and Squamous	1
Basal-like	1
Carcinoma with Chondroid Stroma	1
Osseous	1
# of Diagnosed Participants	126

Poll #1

What is your Metaplastic Breast Cancer Subtype?

Metaplastic Breast Cancer Subtype	# of Members
Squamous	59
Spindle Cell	37
Carcinosarcoma	23
Spindle / Squamous	13
Chondroid	9
Subtype Unknown	7
High Grade Adenosquamous	7
Matrix	7
Spindle & Chondroid	6
Myxoid	2
Spindle Sarcoma Mix	2
Chondromyxoid	1
Osteoid Matrix and Spindle	1
Myxoid Matrix	1
Chondroid Matrix with Squamous Differentiation	1
# of Diagnosed Participants	176