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
