It’s Okay to Get a Second Opinion

It’s ok to get a second opinion (and a third and a fourth)

As a Metaplastic Breast Cancer (MpBC) patient, your diagnosis and path forward may not always be clear. It’s a disease that still lacks awareness and education – even among oncologists. If you’re not feeling confident with the information that you’re receiving from your care team or simply want another expert to confirm you’re on the best path, you should have complete confidence in getting a second opinion.

An article by Yale Medicine states, “Patients should seek another opinion if they feel uncomfortable with their initial team, if they have a rare cancer that another doctor may have more expertise with, or if they are confused about their diagnosis or treatment options.”

“When my mom’s oncologist started rolling her eyes when I brought up Metaplastic Breast Cancer, I knew it was time for a second opinion,” said Jessica Brooke, daughter, and advocate of a MpBC patient. “I took my mom to five leading cancer hospitals. The doctors I trusted embraced collaboration, welcomed questions, and treated my mom like a whole person instead of a diagnosis.”

Below are second-opinion tips from the Patient Advocate Foundation and the Mayo Clinic that resonate with us:

Be Clear What You’re Looking For From a Second Opinion

Do you need confirmation that your current treatment recommendation is correct for you? Or are you looking for other options? Are you interested in clinical trials? As you work with any new doctor, explain why you’re seeking a second opinion, and communicate your primary needs for the visit.

Feel Empowered and Take Control

By seeking a second opinion, you will naturally become more informed about all of your available treatment options and even have a better sense of the possible side effects of each. Many patients say that learning more about their condition and treatment helps them feel more in control of their health and ensures they make the best decisions.

Find a Doctor You Really Like

Most doctors understand that patients have the right to a second opinion and often encourage it. You are under no obligation to be treated by the first doctors you see. When meeting with a new doctor, pay attention to the nurses, office staff, and environment to ensure you choose the best team for your treatment. You can find a list of doctors who work with Metaplastic Breast Cancer patients here.

Discover Alternate Treatment Options

Not all hospitals and doctors have access to the same treatment options. A second opinion could lead you to a more advanced treatment or one tailored to your needs.

Have No Fear

If a doctor is insulted by your choice to get another opinion or pressures you in any way, they may not be the best choice. Adding emotional stress between doctors and patients has been shown to keep patients from healing as fast as possible.

And here are a few pieces of second-opinion advice from our MpBC Community:

“Absolutely, get a second opinion. My first doctor told me I had six months to live. That was in 2004. I got a second opinion, which truly saved my life,” Ann M.
“Ask if your hospital has multidisciplinary tumor boards and confirm that your doctor participates. These expert groups review a patient’s records and discuss a diagnosis and treatment plan. Ask that your case be presented and request that your doctor brief you on the discussion the tumor board had about your case,” Jenna P.
“Medicine is indeed a “practice,” and I wanted as many professional perspectives as possible to make informed decisions. I also felt like expanding my care team could only benefit me and provide exposure to more resources and opportunities,” Carolyn J.
“I got three opinions and wound up feeling the most confident about the third one,” Bridget S.
“I got a second opinion but ended up staying with my first doctor. The second opinion made me realize how much I trusted my first doctor,” Nicole P.

Articles cited in blog:

Should I get a second opinion? from Patient Advocate Foundation

Advice on Second Opinions from the Mayo Clinic

2019 SABCS San Antonio Breast Cancer Symposium

News, Information, Research

2019 SABCS : Metaplastic Breast Cancer Global Alliance

San Antonio, TX : December 10-14, 2019

Meeting for San Antonia Breast Cancer Symposium

San Antonio, TX : December 10-14, 2019

The Metaplastic Breast Cancer Global Alliance was accepted to exhibit at our first SABCS Symposium. We were well represented and maintained a busy booth. Many professionals are interested in learning more about us and Metaplastic breast cancer. Every conference we attend offers us valuable time to collaborate and share information. Jim Harvey Sy met an oncologist from Saudi Arabia that successfully treated a metaplastic patient that had a complete response with this immunotherapy protocol : https://pubmed.ncbi.nlm.nih.gov/31690713/

We were able to share our Diagnosed Member Map at our Booth from a LapTop and some Group Member Polls that we felt were valuable.

metaplastic-breast-cancer-global-alliance-member-map

convention-poster-metaplastic-breast-cancer-global-alliance

MpBC advocates supporting our busy booth:

san-antonia-breast-cancer-symposium-2019

Our handouts:

Breakfast with the Researchers at Marriott Riverwalk Cactus Flower Resturant:

Scenes from our booth:

We met Sophia with Ciitizen which led to our recently launched MpBC Data Collection Project https://www.ciitizen.com/metaplasticbc/

37th Annual Miami Breast Cancer Conference March 2020

News, Information, Research

Update on the 37th Annual Miami Breast Cancer Conference March 2020

March 5-8, 2020

Program Chair- Patrick Borgen, MD (Maimonides)

Program Co-Chairs- Aness Chagpar MD, MSc, MPH, MA, MBA, FACS, FRSC(C) (Yale)

Hope Rugo, MD, FASCO (UCSF)

Debu Tripathy, MD (MD Anderson)

Scientific Keynote Speaker- Scott Gottlieb, MD (FDA)

I was able to represent the MpBC Global Alliance, Inc. this past March 5th -8th 2020 for the Miami Breast Cancer Conference. Before she passed away this past January, Patti Hennessey the late wife of Mike Hennessey CEO & President of MJH Life Sciences arranged for me to attend. Patti was originally diagnosed in 2011 with ovarian cancer and was also BRCA+. She joined our group in 2018 after being diagnosed with Metaplastic Breast Cancer. She fought a hard, long battle. She managed to beat all the odds until metastatic disease was found in her brain this past January. While she still carried on with a positive outlook she passed away January 28th. I remember her expressing her joy with the birth of her grandchildren. It was a shock to Susan Oran and I as we communicated often with her and she was our go-to-expert in regards to the BRCA mutation.

I was privileged to attend the Patient Keynote Address done by an energetic young metastatic Nalie Agustin and was blown away by her documented story. This year and forward the Keynote Address is renamed “The Patti Hennessy Keynote Address”. Her son, Mike Hennessey Jr. did a touching tribute. You can visit her story here: https://www.mpbcalliance.org/news/patti-member-story-spotlight/

My takeaways: Metaplastic Breast Cancer is not on the “general” research radar. Triple Negative Breast Cancer is and there were sessions in regards to TNBC. These conference days begin at 6:30am and can go into the evenings. I am learning to navigate my way through the schedule and pick and choose which sessions are of most value for our rare group. I do not have a medical background but tend to understand and pick up on details that may help keep us up to date on treatment options.

What I have learned? This research takes a long time! Nothing stands out for me to consider focusing on or report other than Immunotherapy is advancing in combination with other targeted options or chemotherapy. Focus was also placed on identifying biomarkers to benefit from precision medicine.

ASCO and SABCS attract more global experts. MBCC, for now is a bit more intimate and relaxed, which allows personal interaction with the most knowledgeable experts studying and treating the most difficult breast cancer cases. At First, I was nervous to sit in on “Meet the Facility Case Discussion” sessions but by the second day I relaxed a bit more and listened and learned about difficult cases that treating oncologist are being challenged with.

Due to the Coronavirus some Faculty did not make it in town. Luckily, I was still able to introduce myself and our organization to these top research oncologists: Debu Tripathy (MD Anderson), Patrick Borgen (Maimonides Medical Ctr), Michael Alvarado (UCSF), Adam Brufsky (UPMC), Judy Boughey (Mayo) Fleure Gallant (Miami Med). I was also able to reconnect with Hope Rugo (UCSF).

To date our Metaplastic Breast Cancer Global Alliance, Inc. has been represented at ASCO 2019, SABCS 2019 and now Miami Breast Cancer Conference 2020. We are making headway. This is tough and we have a great team with Susan D. Oran, Stephanie Oran, Casie A. Houmes (PA), Jim Harvey Sy, Mary Anne Baysac (MD), our supports from the Diagnosed Women’s only Group and The Support and Information Group run by Linda Pirkle and our Growing Global Communities. Together we are all “Supporting The Advancement Of Research Into Metaplastic Carcinoma of the Breast”

Our future will be focusing on gathering data with Ciitizen and we recently have been introduced to a dedicated researcher supporting Dr. Stacy Moulder’s efforts affiliated with MD Anderson, Clinton Yam M.D. We are seeing the benefits from his assistance and look forward to his involvement.

-Laura A. Houmes

American Society of Clinical Oncology ASCO 2019

News, Information, Research

ASCO 2019 : Metaplastic Breast Cancer Global Alliance

Chicago, IL : May 31st– June 4th 2019

Meeting for American Society of Clinical Oncology

Chicago, IL : May 31st– June 4 2019

The Metaplastic Breast Cancer Global Alliance was excited to qualify for an ASCO-Sponsored Patient Advocacy Booth this past May 31st through June 4th, 2019. This annual meeting of the American Society of Clinical Oncology provides nonprofit patient organizations the opportunity to meet, interact and exchange information with approximately 40,000 meeting attendees from all over the globe.

Florida -- 22

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South Carolina -- 4

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Georgia -- 8

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Alabama -- 2

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North Carolina -- 4

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Tennessee -- 3

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Mexico --

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Texas--25

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New Mexico -- 4

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Arizona -- 3

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Utah -- 1

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California -- 23

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Oregon -- 4

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Montana -- 2

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South Dakota -- 1

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Minnesota -- 4

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Iowa -- 5

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Illinois -- 14

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Wisconsin -- 5

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Michigan - 11

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New York -- 10

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New Jersey -- 8

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Pennsylvania -- 10

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Maryland -- 5

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Washington State -- 3

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Virginia -- 8

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South Africa -- 1

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Costa Rica --

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Romania -- 1

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Germany -- 3

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Netherlands -- 1

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New Hampshire -- 1

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Kentucky -- 4

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Indiana -- 8

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Greece - 2

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Poland - 1

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Ohio-- 5

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Missouri--3

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Colorado--7

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Nebraska--3

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Curacao--1

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Louisiana--3

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Spain--1

Connecticut -- 1

Hawaii-- 1

West Virginia-- 1

Maine-- 2

Massachusetts--1

Puerto Rico--1

Mississippi--1

Kansas--1

Philippines--1

Ontario Canada-- 6

Manitoba Canada-- 2

Alberta Canada-- 2

Toronto Canada-- 2

Newfoundland Canada-- 1

Quebec Canada -- 0

British Columbia Canada-- 0

Saskatchewan Canada-- 0

New Brunswick Canada-- 0

Nova Scotia Canada-- 0

Prince Edward Island, Canada-- 0

Nunavut, Canada--0

Northwest Territories Canada--0

Yukon Canada --0

British Columbia Canada--0

Western Australia--4

Northern Territory Australia--0

South Australia--0

Queensland Australia--8

New South Wales Australia--2

Victoria Australia--2

Tasmania Australia--0

New Zealand--2

Malta--1

India-- 1

Scotland, United Kingdom --

Northern Ireland, United Kingdom

Wales, United Kingdom -- 1

England, United Kingdom -- 17

Republic of Ireland -- 1

Alaska -- 1

India -- 1

Singapore -- 1

Turkey -- 1

We were able to share our Diagnosed Member Map at our Booth from a LapTop.

Members, Family and Friends

We were very fortunate to have ten diagnosed members, family and friends attend this valuable conference and assist our busy booth. We were thrilled with the welcome we received from doctors all over the world who were surprised to see a patient advocacy group representing MpBC! We shared information with many doctors and even made a short video with a doctor from Brazil so that she could provide better support to her patients!

“Raising Global Awareness and Supporting Research for Metaplastic Breast Cancer”

Our handouts:

Continued Need for Research

The week was capped off by an early-morning session on Monday the last day of the conference, delivered by Dr. Stacey Moulder, that highlighted Metaplastic Breast Cancer and the need for research.

Take Home Points and Conclusions

ASCO is the largest venue for sharing cutting edge scientific and educational developments in oncology and we were very proud of all our efforts and how we represented our rare community.

Meeting with Dr. Moulder at our Booth

Other Patient Advocates We Met

Ian Still Sporting Our Shirt!

Best Memories and Takeaways from ASCO 2019!

Susan D. Oran– “For me, the highlight was hearing Metaplastic Breast Cancer discussed in a session attended by hundreds of doctors at 8am and meeting with Dr. Moulder again. Eating dip-n-dots with my oncologist Dr. Michael Nissenblatt and meeting all of you wonderful people and seeing how we were able to ban together towards our common goals so easily!”

Nancy McCormack Buschener– “Meeting all of you and your amazing doctors. I learned so much! Oh and the cake building!”

Sue McCaldon– “For me it was meeting you all and having the opportunity to go into sessions to learn so much. Also, seeing my doctor and finding my drug trial poster and talking to the research people in the drug company.”

Dr. Janku stopped by to say Hi!

Jim Harvey Sy– “Best part was meeting you guys and learning that there is so much out there focused on finding a cure for cancer”

Casie Friedrich- “For me it was seeing oncologists and other oncology professionals from all around the world looking to us for information to better help their patients! And the Lattes with your face on them!”

Stephanie Oran– “Hearing Dr. Moulder say that social media has provided a way for doctors to meet patient advocacy groups (like us!) Oh and all the free snacks!”

Laura Houmes– “My first takeaway is WOW! I am completely exhausted but was worth all our combined efforts. I can’t say there was any “best” part of our ASCO gathering. The whole event was a blessing to me and more than I could have imagined. Metaplastic breast cancer brought us all together and we all are trying to make a difference. I believe we made all who have donated to our nonprofit proud!”

Finally, just some images from our time at a local historical, 1800s haunted AirBnB!

Follow Up Care For Metaplastic Carcinoma of the Breast

Information, follow up, News

Follow up care for metaplastic carcinoma of the breast

MpBC Global Alliance, Inc. Recommendations

Metaplastic Breast Cancer is a uniquely complicated, rare breast cancer that to this date is not well understood. Because of higher than normal incidence of metastatic disease in metaplastic breast cancer, follow up monitoring and scanning, either during neoadjuvant therapy or during and after initial treatment, can be critical. Plans for monitoring and scanning should be discussed with a patient and their treating physician early in their treatment plan. Based on surveys of our members, early detection of metastases has resulted in early adoption of additional therapies and has led to long-term survival and NED.

Referencing the ACS/ASCO April 2015 Breast Cancer Survivorship Care Guidelines, diagnosed patients may focus on the Guideline Disclaimer Section. This publication specifically states:

“The Information herein should not be relied on as being complete or accurate, nor should it be considered as inclusive of all proper treatments of methods of care or as a statement of the standard of care. With the rapid development of scientific knowledge, new evidence may emerge between the time information is developed and when it is published or read.”

The following is also stated:

“This information does not mandate any particular course of medical care. Furthermore, the information is not intended to substitute for the independent professional judgment of the treating provider, as the information does not account for individual variation among patients.”

The Metaplastic Breast Cancer Global Alliance polled 30 Stage 4 diagnosed members in October 2018. 26 of the 30 reported metastatic disease within 18 months following initial treatments.

Conclusion: Based on the published guidelines and our members’ experiences, patients with metaplastic breast cancer should work with their physicians to establish an aggressive scanning protocol during and after treatment. Physicians should evaluate these patients’ need for careful watching, especially during the first 2 years after treatment, and work with insurance providers to meet these patients’ needs.

14 Ways to Advocate for Yourself as a Metaplastic Breast Cancer Patient

Information, News

14 Ways to Advocate for Yourself as a Metaplastic Breast Cancer Patient

As a patient with a rare disease, it is crucial to take charge of your care

You, as a patient with Metaplastic Breast Cancer (MpBC), have been given life-changing news. Suddenly your world is turned upside down. Your days are filled with nonstop doctor’s appointments, scans, radiation, bloodwork, and chemotherapy. It can all become very overwhelming, and it’s often difficult to keep up with all the new information you are being given.

It Takes Work

My mother — a Metaplastic patient herself — learned that she had to become her own advocate. Once she found out she had MpBC, she researched it endlessly online. She wrote down questions she had and brought them to her appointments. She bought a binder and organized all her reports. She did her best to understand how to read lab results. She was able to get valuable information from the members of the Facebook support groups she joined. She went through the usual surgery, chemotherapy, and radiation therapy.

Left with No Options

After a lung resection of the initial nodule, my mother’s cancer reoccurred. Clinical trials were then her best option. She ended up going on a clinical trial that kept her stable. The side-effects affected her liver so bad that she was pulled out of the trial.

Left with no options, she told her story on Facebook and did a lot of online research. Because of her efforts, she ended up finding a clinical trial at MD Anderson Cancer Center in Houston, Texas. The trial ultimately worked and she is still with us today — 5 years later. This is why being a proactive patient is so important.

Get the Upper Hand

Metaplastic Breast Cancer is very fast growing. It is also very rare, accounting for less than one percent of all breast cancers [1]. Because it’s so rare, there aren’t many oncologists that are familiar with exactly how to treat it. In fact, there isn’t even a specific standard-of-care treatment for this type of cancer. It is treated the same as invasive breast cancer and triple-negative breast cancer [2].

One thing we’ve learned is staying ahead of disease progression gives patients the upper hand. You must have your next plan-of-action in your back pocket. This way, you can immediately take the next steps.

You Are Also a Member of Your Care Team

I cannot emphasize this enough. You are a vital member of your care team. As a patient diagnosed with a rare type of cancer, it is absolutely crucial that you stay on top of your care. Yes, it’s scary — and stressful — but your future depends on you taking an active role in your health. Below are some helpful tips that can help give you a jump-start on being your own patient advocate:

Keep a binder so that you can organize all test results, imaging, pathology reports, and visit notes in. It’s important that you ask for copies of these so you can hand-deliver them to other physicians that are on your care team. It is also helpful to keep for your own reference.

Use the calendar on your phone and set reminders for your appointments — or a physical calendar that you can handwrite them in.

Have a friend or family member with you taking notes while you talk with the doctor. It’s good to have another set of ears and emotional support.

Speaking of support…

Join a support group. Facebook is a great way to connect with many support groups. There are some specific to MpBC — the MpBC Global Alliance Facebook group is a great place to start. These groups not only supply emotional support, but also valuable information on new research, clinical trials, and ways to handle side-effects of cancer treatment. In-person support groups and seeing a therapist are also great options.

Focus on taking care of yourself. This is a good time to reflect back on your past and examine any bad health habits. Not saying they caused this cancer, but you need to strengthen your body. You need to stay as strong as possible mentally and physically during cancer treatments. Seeing a nutritionist can support this effort.

Set an alarm or reminder on your phone to take your medications.

Make sure your oncologist is familiar with MpBC. Being that this is a very rare type of cancer, it is important to make sure your cancer care team is familiar with it or has treated patients with it in the past.

Get a second opinion. It’s absolutely OK to get a second opinion. Especially when you’re diagnosed with a rare disease. Don’t worry about offending your doctor. Any good practitioner would respect your right to one. This is a time where you should consider all your options, and have a reassurance that you have the right treatment plan for you.

Schedule a port placement. Ask your oncologist about getting a port placed. This will make it easier on your veins and give better access when you are having frequent blood draws and IV medications administered.

Discuss having genomic testing done on your tumor with your oncologist. This will help your doctor individualize your treatment. There’s a list of companies that do this listed here.

Have regular scans to track disease progression. Get a plan in place with your oncologist to have regular scans done to track the status of your cancer.

Develop an understanding of the terminology. You’re probably asking, “Why should I need to know that?” Well, it’ll help you understand your diagnosis better and in decision-making. This is part of being a proactive patient.

Know the possible side-effects of your treatment. This way you know what to look out for ahead of time and how you can treat them.

Write down questions that pop into your head during the day and bring that list in with you to your appointment. Having your questions answered will give you some peace of mind.

Communication Is Key

Express to your physicians and care team how you feel. It’s true when they say that you know your body better than anyone else. Is something bothering you? Are you feeling depressed? Is there a new pain that you’ve been experiencing? If something doesn’t feel right, let your doctor know! Communication is key in healthcare.

If there is anything that your physician is talking to you about you don’t understand, ask them to repeat it in a different way. All this ensures that you are getting the best care. Patients who play an active role in their care usually have better outcomes when compared to patients who play a passive role [3]. So, I hope these tips help involve you in your care and take charge of your health today.

Casie Friedrich, PA-C

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