Break Through the Bullsh*t: MBC Awareness Day Edition
October 13, 2023
Without a doubt, there is a lot of bullsh*t that comes along with a breast cancer diagnosis. And with a metastatic breast cancer diagnosis – let’s just say there’s a whole lotta extra crap the community has to deal with.
We worked with our MBC Advisory Board to identify the things affecting the MBC community that we think are Bullsh*t. An extra shout out to board members Margaret and Jen who brought a bit of dark humour and sass to the social post. (Side note: We didn’t put the MBC diagnosis itself on the list because, well, that’s just so much more than just B.S.!)
As you read through all the MBC bullsh*t, remember the burden of breaking through can’t be placed on those with MBC alone. They’ve already got too much. We need you to join us as an MBC Ally – we need your help.
1. Having to advocate for yourself: Never wanted to be a “Pick Me” but here we are!
In general, the average person doesn’t realize you must speak up for yourself to avoid falling through the cracks in our healthcare system. Equity is a goal of a publicly-funded healthcare system yet there are so many gaps – between the provinces, between hospitals — despite many attempts at patching these inequities. If you’re relatively healthy and have basic healthcare needs, Canadians experience a simple, seamless system. Even something like having a baby in a hospital is fairly easy with minimal administrative hassle and you never see a “bill.” But for something like a cancer diagnosis, there can be an overwhelming amount of healthcare services with different providers and different payers (and thus hoops, delays, paperwork). And the burden of navigating everything is put on the patient and family/loved ones. This is so unfair when you’re navigating MBC.
Moreover, you don’t know what you don’t know – most of us assume we are getting what we need when we need it – so we don’t know we DO need to advocate. That’s why system change is needed. That’s why we’re always trying to recruit more MBC Allies. Improving outcomes for people with MBC can’t be placed on those with MBC alone. They’ve got too much already. We need the broader breast cancer community to be Allies for MBC. And we need the public to be Allies for those with MBC too.
2. Lack of data on MBC and recurrences: Does anyone really know anything about anything?
Collecting better, more accurate and more inclusive data about metastatic breast cancer is a critical and urgent factor towards improving outcomes for people living with MBC. Some of you will remember, Rethink has been working on this issue since we launched the #MakeMBCCount campaign in 2020. At that time we didn’t know how many active MBC cases there were. Didn’t know who these people are. How many are under the age of 50? What are their experiences? How long are they living? Three years later and we still don’t have the answer to these really important questions. Often the data isn’t being collected and when it is, there isn’t progress extracting MBC data and recurrences information from it.
Most cancer registries around the world collect information about initial diagnosis and mortality but do not document recurrences, which represent the majority of MBC cases. Without this, we cannot truly understand MBC. We don’t know where to push for change to improve outcomes and improve survival. We must accurately measure, track and clearly articulate the realities of MBC in order to address the disease burden and unmet needs of those with living with it. Race-based data also isn’t collected, leaving us in the dark in understanding the effects of breast cancer on Black, Indigenous and People of Colour, including whether race and/or systemic racism impacts rates of recurrence or metastasis.
The Canadian Cancer Society and the Canadian Partnership Against Cancer recently teamed up on the pan-Canadian Cancer Data Strategy to address the need to close gaps in cancer data in Canada. Rethink is glad to see these national pan-cancer organizations prioritizing this important issue. But we will keep pushing to #MakeMBCCount because we need more accurate and inclusive data about MBC and know it’s going to take advocacy to keep moving this forward. At the risk of sounding jaded, on this issue it feels like we’ve been yelling into the void for so long.
3. Long waits for test results: I’m fine, it’s fine, just waiting to exhale!
Scanxiety is real for the MBC community. But what we’re really getting at here is the challenge to access timely biomarker testing in Canada. Biomarker testing can determine the most effective treatment option for an MBC patient, improving their chance of disease stability and better quality of life. Breast cancers can mutate, with a significant percentage of patients experiencing changes in receptor status over time. Timely testing can mean the treatment targets the current breast cancer subtype. Delays in biomarker testing can result in MBC patients waiting to start treatment or receiving the wrong treatments, causing them to endure side effects for an ineffective therapy that was costly to our cancer system. Delays in biomarker testing can also limit options, especially when new treatments are only available through clinical trials or compassionate access programs.
Challenges with biomarker testing include the timing and delays of the testing, having enough tumor tissue, the location of biopsies, and the variability in results from multiple samples taken from the same site. On top of that, our labs either cannot afford or are not technologically equipped to perform the commercially-developed companion diagnostic tests approved by our cancer drug regulation bodies. The bottom line is that Canada needs clear guidelines on biomarker testing and consistent provincial access. Getting the right treatment at the right time can be a game changer for someone with MBC. And change is needed because as we mentioned off the top, the onus shouldn’t be on the individual with MBC to self-advocate to optimize their treatment.
4. Lack of dedicated MBC resources: Treatment path = chemo, radiation, surgery, finished! Right?
Much of Rethink’s work over the past decade has been about uniting all stages of the breast cancer community. This addresses the isolation felt by the MBC community and brings everyone together to drive positive cancer system change and improve breast cancer outcomes.
That said, there are definitely times for dedicated MBC support, resources and information. The time of diagnosis of MBC is a really good place to start. Unfortunately, we still hear from people, newly diagnosed with MBC, who were handed the generic “early breast cancer” booklet at their hospital with maybe a blurb on recurrence and metastasis as a footnote of sorts at the end. Not a great way to “onboard” to your difficult news. It’s a slap in the face for someone who has had a recurrence that’s metastasised to be handed the same booklet they received a couple years earlier as an EBC patient and downright confusing for someone diagnosed de novo to have to wade through useless, irrelevant information.
5. Challenges accessing clinical trials: It’s giving “confusion”…Easier to get T. Swift tickets.
Clinical trials can help provide an important route for people with MBC to access new treatments, services, or resources.
Getting into one really is harder than securing Taylor Swift tickets in 2023. Clinical trials are inaccessible to many MBC patients because there are not very many trial sites in Canada, so there are lots of barriers due to geography and related travel expenses. Clinical trials may also require invasive and expensive pre-screening, a treatment-free period; restrictive eligibility criteria based (including pre-treated patients), and monitoring procedures that must be done at a research center (rather than locally).
Rethink’s MBC Advisory Board has called for those establishing clinical trials to support people with MBC and encourage clinical trial participation through:
• eligibility criteria that considers people with MBC as individuals with a spectrum of needs and abilities
• monitoring procedures that do not put those living in rural and remote areas at a disadvantage in participating
• financial aid to patients accessing the clinical trial (e.g. travel support, childcare)
We need innovative thinking so trials can be inclusive while still meeting goals in the changing breast cancer landscape.
6. Not enough psychosocial support services: Guess this sweet hospital security guard will do!
Lack of free-of-charge, accessible psychosocial support services is a huge challenge for our entire society right now. And it’s no different at the cancer centre. Our observations the last few years is that many MBC patients are being “referred” to their cancer centre’s psychosocial services but not seeing anyone (yet). Wait times for the oncology psychosocial services at some centres are out of control – not weeks, not months, but years. Others have shared that psychosocial support was not prioritized by their cancer care team with their MBC diagnosis and had to find mental health support themselves. The bottom line: a lot of people with MBC are not getting the professional support they need to process and navigate their diagnosis.
7. Oversimplification of early detection messages: But you caught it early, right?
People with MBC are not against early detection messages. But many are frustrated by what’s left out of the conversation, especially when it comes to the hot topic of publicly-funded screening mammograms. Screening programs are a public health intervention for a healthy population. The reality is: screening programs are good for detecting the easiest to treat, early-stage breast cancers. Screening programs are not effective at detecting the fast-growing, aggressive tumours, which are what many young people with breast cancer are diagnosed with and which are more likely to metastasize. In addition, finding breast cancer early is not a guarantee that it won’t metastasize. (See #2 about the lack of MBC data.) Screening mammograms and early detection are extremely important AND so is having a sustainable healthcare system that can meet the needs of the MBC community. It’s complicated.
8. Stigma surrounding palliative care: a rose by any other name would still help you feel better.
The way palliative care has been discussed over the past several decades has caused a lot of misconceptions and confusion. And so, it’s no wonder it brings up uncomfortable feelings for so many people. Too many people think it’s only end-of-life care. But a lot of what we commonly know about it simply isn’t true. Palliative care is about supporting physical and emotional health. It focuses on treating the symptoms of the cancer, the symptoms of the cancer treatment, and the emotional impact having cancer can have on the individual and families.
That’s why we’ve been spending time rethinking palliative care, creating content and resources that debunk false perceptions about palliative care and help straighten out its reputation.
9. Not enough awareness of MBC: Metastatic? Is that like Pilates?
This, joking aside, is not that far-fetched. Breast cancer itself is complex and so is MBC. It’s not just one thing. It’s not just one face. It’s not just some rare, unlucky form of the breast cancer. And it’s not the same experience and outcome even for two people with the same subtype of MBC and same treatment plan. But our fast-paced, sound-bite-y media culture is not so good at nuance and complexity. And the result is that the general public lacks insight and understanding of MBC and therefore can say harmful, hurtful things to people with MBC (see #7 and #13).
Raising awareness of MBC is always a tricky balance of explaining the challenges and urgency of the situation while also showing that many with MBC are “living” with their disease. Overall, the public still doesn’t really know what MBC is and there’s still a lot of work to do to increase awareness that MBC is the most serious form of breast cancer, that it’s mostly incurable, that it’s treated differently than early-stage breast cancer and that people with MBC may not look like the ‘typical’ cancer patient as a result.
10. Lack of information for MBC in underserved communities: You mean one size doesn’t fit all?
Many metastatic breast cancer patients feel overwhelmed by treatment decisions and isolated and alone in grappling with them. And if you are Black, Indigenous or a Person of Colour, the isolation of an MBC diagnosis can be intensified. The breast cancer space has long been very white, cis-hetero and ableist, meaning many other identities, including Black, Indigenous, and other People of Colour as well as 2SLGBTQAI+ identifying persons have been left without inclusive, accessible, and culturally-safe ways to find community, get support, and access care. The negative impacts of these barriers and gaps in care are poorer health outcomes and even additional financial burdens.
Racism and discrimination are deeply embedded in our healthcare system, and sometimes in ways that are not obvious. As we continue to amplify diverse stories and experiences in the breast cancer community to address gaps in representation, information, and support, we must advocate for interventions to address systemic barriers.
11. Poor GP understanding of the signs of recurrence: Like, did you forget I had cancer already?
Lots of work has been done to amplify “early detection” messages and educate the public and GPs about signs and symptoms of breast cancer. Early diagnosis of MBC is super high stakes too, yet it’s left out of the public conversation and GPs can find MBC symptoms challenging to spot. There are many different symptoms of MBC depending on where it has spread – back ache, nagging cough, nausea – and are not exclusive to MBC (thus the initial recommendation to take Advil, be given a prescription inhaler etc.). The result can be two or three visits to a GP over many months before finally getting an MBC diagnosis. And, while our little jokey aside is a jab at GPs short term memory, it’s important to remember that MBC can develop a decade or more after initial diagnosis. We need more training, tools and resources to help GPs recognize MBC symptoms so that people with MBC can immediately start treatment, which will improve their quality and quantity of life.
12. Patient blaming: “If only they’d stayed away from sugar!”
Do we need more research on causes and prevention of cancer? Absolutely. Do we need people blaming themselves or others for getting cancer or having progression to MBC? Never.
While certain habits may increase your risk of getting cancer, there are many people with high-risk lifestyles who never get cancer in their lifetime. And there are many others who are in great physical fitness and eat “clean” and healthy who are diagnosed in the prime of their lives.
People with MBC are already exhausted from asking themselves all the “why?” questions they can imagine and beating themselves up with a plethora of “if only” scenarios. The last thing they need is unsolicited advice even if it comes from well-meaning family or friends. And they also don’t need people speculating on what caused their MBC behind their backs. That kind of thinking distracts from the urgency of finding the actual scientific answers to unanswered questions about MBC.
13. Access barriers to new drugs: there’s not enough room on this post. Amirite?
In the past few years, new treatments have brought so much hope to the MBC community. It’s very exciting to see data come out of major oncology conferences and know these treatments will transform lives soon, but heartbreaking for those who needed the treatments yesterday.
Here in Canada, it’s taking longer and longer to get these new treatments to the people who need them. So, the treatment breakthroughs are somewhat bittersweet against the reality of review delays, negotiations, and provincial listings. Also, Canadian Health Technology Assessment (HTA) hasn’t kept up in the way data for more targeted treatments are considered. Canada is falling further and further behind the U.S. and Europe, and it is people living with breast cancer who are losing out.
One of the gut-wrenching parts of our work is taking a call from someone who is desperate to access a new treatment that could make a difference in their outcome but it’s currently going through one of the stages of our evaluation system, and they do not have months to wait. It’s just out of reach and it’s devastating. Patients fight to access the new treatment through the “patches” or interim access solutions. Whether that means a clinical trial or applying to a compassionate access program, private insurance, exceptional access programs, the patient who is in a devastating health crisis is the one banging down doors, jumping through hoops, drowning in red tape and paperwork to get access to the most effective treatment.
And it’s not just the patients, it’s physicians and other healthcare professionals that are also drowning, taking their time away from caring for patients and creating bottlenecks in the clinic.
Canada needs quicker, more adaptive, more patient-centric HTA and reimbursement processes. Because the status quo isn’t working. It’s getting worse.
— MJ DeCoteau, Rethink’s Founder + Executive Director