12 Things I Wish I Knew When I Was Newly Diagnosed With Metastatic Breast Cancer (MBC)
8 MINS to read
Receiving a diagnosis of metastatic breast cancer can be disorienting and shocking. Maybe you’re experiencing a recurrence after an early-stage diagnosis or are stage 4 from day one (also known as de novo). It’s a surreal situation that can’t be fully understood unless you’re going through it.
That’s why the people in Rethink’s Metastatic Advisors Group have come together to share some things they wish they knew when they were first diagnosed with MBC. While cancer is not a one-size-fits-all experience, we hope there is something in the list below that helps you feel less alone.
1. You did not do anything to cause this!!!
Social media can be full of “experts” sharing junk science that implies you’re personally destroying your own health. This pressure can feel overwhelming when cancer enters the conversation. Add in the well-meaning-but-overreaching family, friends, coworkers and acquaintances with ideas on what you should or shouldn’t being doing and it’s all too much. Enjoying drinks with friends, missing your run or having negative thoughts did not bring on your MBC diagnosis. This is not your fault, and no amount of kale, manuka honey or breathwork would have prevented it.
2. The in-between time can be tough
Medical TV dramas suggest that once someone is diagnosed with cancer, things move quickly, and immediate action can be taken on a clear, straightforward treatment path. But in reality, there is often a lot of waiting while more investigation is done to determine a plan that is best for you and your unique case. This time can feel impossibly heavy, filled with unanswered questions and the sense that you are not moving forward. If you are in that phase right now, we see you and want to acknowledge how challenging it can be! Know that having all the test results and appropriate consultations will help ensure you get the treatment you need.
3. You are part of your care team, too
As you navigate your MBC experience, you’ll meet several professionals who become part of your core care team. There can be a bit of a learning curve in understanding the role each will play in your care and knowing what your role is as a patient can be just as confusing. While they are the medical experts, you are the expert in your own experience and values and have a seat at the table. Check out Rethink’s Care Priorities to help prepare for conversations with your care team.
4. You deserve to know all your treatment options
That includes information on available clinical trials and what your options are for future lines of treatment. Understanding what might be possible in your next line of treatment – and how your current treatment choices, including enrolling in a clinical trial, can influence those options – can help you make informed decisions. Feel empowered to ask your team questions, seek clarity and have an understanding of what is happening in your care. Furthermore, know it’s okay (and encouraged) to continue to do this throughout your MBC experience – available treatments can change over time, especially as you and your team learn how your particular cancer behaves.
5. Take caution when visiting Dr. Google
An MBC diagnosis brings many questions to the surface, which can make turning to “Dr. Google” very enticing. We get it; you want to know everything you can about this diagnosis. But resisting the temptation to go deep down a rabbit hole can be one of the more important things you do for your mental health. The information you find online can be overwhelming, often based on older treatments, which don’t reflect the current reality of the MBC landscape, or just plain inaccurate. Instead, stick to credible sources recommended by your doctor, and keep a running list of questions to help give you peace of mind between appointments. At the end of the day, your team will be the source of the most accurate information that’s tailored to your specific case, which leads us to…
6. You are a statistic of one
While stats can be key in guiding your care plan, they don’t define your future. At the end of the day, it’s important to remember that every experience is unique. No one MBC story is exactly like another. There is always room for hope.
7. Palliative care may not mean what you think
Palliative care can sound kind of scary. We understand. The way it is often discussed has caused a lot of misconceptions and confusion, leading many people to think it’s only end-of-life care, but that’s just not true. Palliative care is focused on treating the symptoms of the cancer and the symptoms of treating the cancer, and helping people live well with cancer. Accessing it early on in your MBC experience can actually make a big difference in your experience. If you’re curious, check out our resource debunking common myths about palliative care.
8. If you can, find others going through this experience
This experience can be isolating. Chances are that no one in your immediate circle is grappling with an MBC diagnosis. Even with incredibly supportive loved ones, they might not fully get it. That’s why finding others who understand your experience because they’ve been in your shoes is important. It can be validating and bring hope and clarity when it feels there is little to be had. When you are ready, Rethink offers supportive programming and a library of stories from others diagnosed with MBC. To help guide you further, here are some virtual spaces to start exploring to help find those connections:
On Facebook:
On Instagram:
- Find folks using the hashtags #BusyLivingWithMets, #ThisIsMBC, #Stage4NeedsMore, #RethinkMBC, #MBC, #MetastaticBreastCancer, #LivingWithBreastCancer, #MetsMonday and #bcsm
- Check out our Instagram page for community stories, vetted information and curated content from across the breast cancer social media landscape.
- Find stories from others living with MBC plus trusted information through the accounts @metavivor and @livingourbreastlives
That being said, it’s okay to pick and choose where you give your energy because…
9. Not every community will resonate with you, and that’s okay
The spaces you join may not all be the right fit for you and your relationship with them might change over time. Taking breaks from certain groups, limiting cancer content or changing how you show up in the community can help protect your mental health and preserve your energy. Test out what works for you and what doesn’t! The communities you join and the content you consume should help you feel seen and supported, and what might work for one person may not necessarily work for all.
10. Advocating and getting involved can help, but only if/when you feel ready
Getting involved with the breast cancer community through advocacy and other volunteering initiatives can bring a healthy focus and sense of purpose to your experience. But there’s no rush – it’s okay to take time and process your diagnosis before diving in. Also, if you are hesitant to get involved because you don’t want to talk about your diagnosis publicly, that’s okay! Getting involved doesn’t have to include sharing your story on social media or other public channels. So much of the hard, impactful advocacy work happens through persistent action over time, and a lot of meaningful ways of supporting your community happens behind the scenes.
You can learn more about ways to get involved with Rethink and how to take action in our advocacy work here.
11. You are allowed to protect yourself
Although this was true before a life-altering diagnosis came into the picture, taking care of yourself is important, even if it feels like you are being “selfish.” You are allowed to prioritize yourself and sometimes that can mean pausing or ending your work on something to make sure you aren’t pouring from an empty cup. What your body needs has changed, and your energy will ebb and flow over time. Stepping back from projects and initiatives, even when they support things you really care about, can create needed space in your life, and provide an opportunity for someone else to take their turn doing the work.
12. Finally – this is a marathon, not a sprint
There can be so much external pressure around what a cancer experience “should” look like. This might make you feel like you need to do all the things and do them RIGHT. NOW. But you are the one going through this experience and conserving your energy is going to be key to avoiding burn out. So, take a deep breath and move at a pace that is comfortable for you, knowing that there is a community of people grappling with the same diagnosis who have your back. <3