The meeting was similar to in-person support groups, where we all went around the room and introduced ourselves. I started off and gave my age, and talked a little about my blogging activities and my feelings about having MBC. As we proceeded around the room I noticed how much more detailed everybody's introductions became, expanding to include detailed MBC diagnoses and also their primary diagnoses.
What struck me was the number of women who revealed they were originally diagnosed at Stage I and went on to develop MBC at a later point. Surely this unscientific observation alone is a stark and serious reminder that MBC can happen to anyone. Regardless of stage at original diagnosis. In fact, Dr Susan Love, noted author, and founder of the Dr Susan Love Research Foundation and the Army of Women, discussed in the workshop that I attended, that the Staging system is in her view obsolete. Staging is not a predictor of survival. Molecular biology of cancer cells and the cell micro-environments trump staging hands down.
Here in this room, was living evidence of Dr Love's theories.
The women in this room came from all walks of life and all age groups, although I think fellow blogger @whymommy and I were the youngest.
Each of the women in that room, I would describe as strong, feisty, intelligent and mad as hell about the state of MBC advocacy and research. We understood only too well when someone said "We need to be our own advocates". There was a resounding "Yes!". But then, someone else added this comment:
"But, as well as being our own advocates, we need the rest of the breast cancer community to advocate for us as well".
It seemed so simple, but then I thought about it and I realized that this is something that is not happening on a wide enough scale. Why? MBC advocate Musa Mayer presented some thoughts on this issue during one of the NBCC workshops. Musa says;
"Very few advocates focus on MBC-- WHY?":
Avoidance: Vast majority of advocates are primary breast cancer survivors at risk of recurrence. "We are what the pink crowd wants to forget because we are the painful reminders of what can happen"
Expertise required: Lack of knowledge about complex MBC treatments and the different issues that women with MBC face
Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing
Screening and early detection still a primary focus
Naivete and fatalism both play a role
I'd like to add a few more thoughts to expand Musa's list and perhaps highlight why I think it's so important that we also draw advocates from outside the MBC community.
- Reduced Priorities: Many of us are struggling with grueling treatment regimens, and our energies are focused on just staying alive and trying to enjoy our lives as best we can. It's incredibly difficult to find the room to expand our priorities and the time to focus. In some respects it literally comes down to focusing on what's important from an individual perspective as opposed to a collective view.
- Succession: Let's face facts. Our community is made up of people dealing with incurable and mostly terminal illness. We are all too painfully aware that our time on Earth is limited. Who's taking the reins when we are gone? Do the issues simply die with us?
It's clear to me from my forays into social media and many of the online discussion forums that there are deep chasms within the breast cancer community itself. Many people who have known a breast cancer diagnosis seem to view attempts to question the status quo, as being simply angry, negative, bitter or just plain mean-spirited.
The armchair psychologist in me tends to think that this kind of reaction seems to come from people who believe themselves cured of their cancer. They seem to have adopted the notion of survivorship with such celebratory fervor and zeal, that they tune out any information that may possibly lead them down a path that is personally confronting and contradictory to the culture which they have felt embraced by and have embraced in return.
Trust me when I say that I get it. But the trouble is, by refusing to entertain an alternative viewpoint we just feed and maintain the status quo. And for the MBC community the status quo means;
- no significant decreases in mortality in decades;
- rates of MBC diagnosis that have remained constant for more than 40 years; and
- incremental drug treatments whose "success" is judged by survival in weeks and months;
- very little research funding and focus; and
- disease which is incurable and responsible for 90% of breast cancer deaths
I'm thankful that we have some key organizations helping the MBC community to mobilize and advocate, including MetaVivor, Metastatic Breast Cancer Network, and AdvancedBC.org, to name a few, and links are listed on the right side-bar. Indeed, the NBCC is also chairing a Metastasis Prevention Summit in August, which has drawn some criticism from the community as to the specific agenda, but I'm hoping to see some action items that might benefit people already dealing with MBC, in addition to benefiting those yet to be diagnosed with MBC. There's also going to be an Advanced Breast Cancer International Consensus Conference to be held in November in Lisbon which will be addressing many issues related to MBC. (Incidentally, there are reduced registration fees for patient advocates wishing to attend this conference).
But we need more. We need a critical mass of advocates for MBC, and we need to draw people from outside of the community.
Here are some ideas of things you can all do to help advocate for MBC:
- Join the mailing lists for all these organizations and stay up to date with MBC news and initiatives, and share it with your communities
- Join Dr Love's Army of Women and participate in research. (It doesn't matter where you live in the world!)
- Attend conferences and workshops relating to MBC. Get informed!
- Donate to organizations that support research and advocacy for MBC (see list on this blog)
- Get active in social media. Start blogging, tweeting, or join Facebook and/or simply start participating in online discussions. MBC represents an alternative viewpoint and we need to get it out there. Have an opinion and share it. Every voice matters.
- Question, question and keep questioning. Don't be afraid to dissent; this is what generates discussion. Just be heard.
- Most important of all. Don't ignore MBC. The community needs your support and every little bit helps.
This post is dedicated to my Twitter friend Sarah of @sprucehillfarm who passed away last night from metastatic breast cancer. RIP gorgeous lady, I will miss our chemo-day tweetups. How many more?