Breast cancer organizations often come under fire for not adequately acknowledging the metastatic community and for their inability to show the reality of breast cancer – the side that can actually kill you. We can see this discourse happening a lot through movements like Don’t Ignore Stage IV, and through films like Pink Ribbons Inc. Those living with metastatic breast cancer often feel alienated from their fellow “survivors” and don’t identify with the pink ribbon dogma which proclaims that if you fight hard enough you can win the battle with breast cancer. Where does that leave women who are living with breast cancer for the rest of their lives?

When I got back from the Advanced Breast Cancer (ABC2) conference in Lisbon almost two years ago, I wanted to ensure that Rethink’s support and education programs were inclusive of everyone, not just those women who finish treatment or get the NED (no evidence of disease) from their oncologist. I questioned how we, as an organization, were helping these women and including them as a part of the breast cancer experience: not as an afterthought and not only in relation to end of life issues. I am now realizing that we are not able to do that without the voices of the metastatic community – they are experts about what they need and we need to hear them. Even if this means challenging us in what we say, what we do, and who we are as a breast cancer charity.

As an organization that serves a broad audience of young people concerned and affected by breast cancer, it is always challenging to bring to light issues that are difficult to talk about. On the one hand we want to show the raw and gritty side of breast cancer, but we also want to make it accessible so people aren’t scared enough to turn away from the reality of the disease. The fact that breast cancer can kill you is not something that someone who is newly diagnosed wants to hear. In fact, there are those in the metastatic community who don’t want to think about this either. This dichotomy creates a very complicated and challenging task for all organizations who want to genuinely help and effect change.

As a start, I think it comes back to listening closely to what those from the metastatic community are telling us. These are some of things we are already hearing:

Cancer organizations love to focus on inspiration and positivity, not DEATH

In general, our culture has a phobia about death and dying and therefore there is a heavy stigma attached to this issue. If you were someone living with a disease that can and will kill you, you’d likely feel completely ostracized by the fact that no one wants to talk to you about it. How can organizations like Rethink help to encourage this dialogue and help break the stigma in a way that isn’t frightening? Is this even possible?

Lack of services and psychosocial support for the young metastatic community

The metastatic community is complicated and one size does not fit all in terms of support and resources. Some people gain a lot from support groups, and others find attending a conference is helpful. Then there are those that don’t want to immerse themselves in support at all because it feels scary. These people may appreciate one-on-one counselling, or a nurse navigator to guide them through the process of having a chronic disease. There is also the need for bereavement counselling and grief work. Like the AIDS crisis of the 80s, women with metastatic breast cancer are watching their friends and peers succumb to the disease. How are they supposed to continue to live life fully and feel positive when this is happening? How are breast cancer organizations supposed to create support and resources for these diverse needs? Where do we start?

The term “survivor”

This word is very controversial among the metastatic community. For the most part, it is an empowering word use to describe those who “beat” or “battled” cancer and it is used by the medical community to refer to those who are finished treatment. They ring bells and are congratulated for entering the “survivorship phase.” However, recently I was at the Young Survivor Coalition Summit in Houston where young women with metastatic breast cancer were taking back the word survivor. Some women there felt that they were survivors because they are surviving with chronic disease. Do organizations ban this word to be more inclusive or do we empower all women to use it to describe their perseverance and strength?

Unfortunately, I don’t yet have the answers to these complicated questions, but I think we all stand to learn more from this group if we collectively listen to them. As the young women’s breast cancer movement, we must provide them with opportunities to express and explore their needs together, and follow up with quick and impactful action.

On Wednesday, Rethink Breast Cancer will be having a screening of I AM ANNA, our newest documentary which is about a young woman living with metastatic breast cancer. Following the screening there will be a panel discussion made up of four young women living with stage 4 breast cancer. They will have the floor to help us understand their experience, the needs of this community, and their ideas around inspiring other young metastatic women to use their voices for change.

I am hopeful that this event will be a starting point for us to continue the conversation around metastatic disease and help us create a public engagement strategy that invokes change for those living with breast cancer for the rest of their lives.

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