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?
Count me in. And I'm sorry about your friend, yet another sad loss.
Anna, you've captured the situation so well. It's ironic that the group that needs the greatest support from the breast cancer community is the one that is forgotten.ReplyDelete
All the pink in the world will do nothing to eradicate this disease without giving strong attention to primary prevention (i.e., stopping breast cancer before it starts), understanding why recurrence happens regardless of stage of diagnosis, and determining the mechanisms of metastasis. Only the last one will have any impact on reducing mortality when 90% of deaths occur in stage 4.
How many more? How many more? How many more?
It is high time we started to dispel the myth that breast cancer is a curable disease. Writing like this begins to get the message out there. Thank you for your clarity.ReplyDelete
Well as you know you have done more to educate my woefully ignorant mind about MBC - and to think I called myself an advocate! I am ashamed of what i didn't know, but through your efforts you have awakened my eyes to the reality of things. As an example of my ignorance, your quoting of Dr Love's statement about staging is the first time I have heard this and I admit it is a shocking statement that we really all need to be aware of.ReplyDelete
MBC Network and METAvivor were both founded after women were literally ignored at "regular" support meetings. CJ at Metavivor actually had a moderator cut off a Q&A apparently to avoid any Stage IV buzzkill.
Perhaps because they have a vested interest, I see a lot of advocates rallying behind "Survivorship" issues. Which aren't insignificant, but hey, don't write us off.
Wow. Insightful and educational post. A wonderful job of explaining the issues, why it is important, and inspiring to action.ReplyDelete
Great job, we will spread the word and support the MBC community.
Amazing post. I am sharing far and wide.ReplyDelete
love this post, anna. a great combination of data and social analysis. your voice is so valuable.ReplyDelete
big hugs to you.
Brilliant post Anna! Everytime I read your blog I wanna scream out my window (that's a good thing)!ReplyDelete
totally agree with what yu are saying - I think at some stage I will get more active but not now. I'm not ready and I feel cowardly for admitting it when I admire you and Susan so much for letting your passion push you forward. One of my problems is that I live in New Zealand and with such a small population of MBC especially amongst younger women, I'm 48, I feel quite alone when I do do advocacy and awareness,especially around IBC. I'm considered more activist than most of the MBC/IBC women I know here but I know it isn't enough.ReplyDelete
This is excellent information, excellent writing. YOU are amazing. Thank you for the times when you echo my thoughts and help me stand up for what I feel needs to be said.ReplyDelete
Jenny by taking the time to read and comment here and other places, you are already doing something very important. Being informed and having an opinion is powerful in of itself. And on top of that you have a blog too! You have a voice and are being heard. Thank you! XxReplyDelete
Shelli - your blog is part of this movement as well. And your advocacy with the support group is such a great example of the power of one voice. Thanks to you too!
First of all, I am just so jealous that you were able to attend a workshop with Dr. Susan Love! I admire her work so much.ReplyDelete
My oncologist avoid telling me that I am cured. It is just not realistic. My mom was Stage 1 when she was diagnosed at age 40, and she died from MBC. I would love to be able to avoid MBC, but am certain that even though my cancer was Stage 1, I'll die from MBC also.
One of my good friends is in remission from metastatic melanoma...in talking with her, she is fairly certain she is not cured either. So many people are affected by this thing called cancer!
when I first looked at Army of Women when Susan put me on to it - it seemed to be more for US women - I have joined now. Hopefully there is something I can do here. I have already given my permission for all my info to be on a breast cancer register here in NZ as well.ReplyDelete
What a wonderful post, Anna. I went through treatment with two women who had inflammatory breast cancer and died. That has shaped my own survivorship and what I do. Part of that has been to advocate for women with metastatic disease.ReplyDelete
I can't thank you enough for everything you're doing. Count me in sister.
A must read for anyone who considers themselves a cancer advocate. Before I met you I thought I was, but it was a very narrow field that I concentrated on - chiefly my own experience of one issue which I faced in my breast cancer journey. But how my eyes have been opened and I can see that to be a true advocate you must embrace all parts of the journey. I think the reasons you cite as a lack of MBC advocates are spot on, but it is time to change this. Thank you for broadening my advocacy horizons and for waking me up again and again to the reality of this insidious disease.ReplyDelete
Anna, this is a fantastic, articulate post. This is what ALL of us should be focusing on, first and foremost. There are never a paucity of issues to address in the world of breast cancer, but if an advocate is not at least acknowledging and hopefully addressing MBC in some way, then whatever else she's doing, she's ultimately betraying herself & all of us.ReplyDelete
It's amazing to me that we would even have to remind anyone of this. Why is Getting The News such a horrifying, unforgettable moment in our lives? BECAUSE WE ALL KNOW THAT THERE'S A CHANCE WE COULD DIE. We all KNOW instantly, in our hearts, as soon as we hear our diagnosis, that we are threatened by the possibility of metastatic disease. It's the why of everything, the reason behind all current treatment for ALL stages of breast cancer. [okay, I think I need to write a post...] I mean, DUH!!
None of us is immune. None of us. Early on, I started calling breast cancer the Stalker because of this. You know I'm with ya, girlfriend, making noise, causing trouble. Whatever it takes.
Like I said, COUNT ME IN!
The lack of attention to MBC really gets me riled up. I lost my mom to it. (diagnosed at early stage) I know I am at risk. I have friends on and off-line there and I care about all those other women out there as well. Things need to change. And 30% for 30% sounds totally reasonable and just plain right.
Great informative post!
Thank you for bringing awareness to this issue. Although,to date I do not have Breast Cancer, I have watched my best friend die of it, another close friend die, witness many friends who have survived it for now, and a mother-in-law who was recently diagnosed. I absolutely believe that so much more can & should be done in preventing this disease in the first place and once women are diagnosed formulating a plan of remediation that includes integrative care complemented with holistic modalities. As a Health & Wellness Coach I have learned do much about the power of food & lifestyle enhancements. I see the medical world treating Breast Cancer so aggressively. No matter the diagnosis all the chemo & radiation come out of the war chest without much forethought on the toll this takes on a woman's body as well as in some cases increasing cancer risk. Early Detection and "pinking" cancer causing products is nit the answer You post inspired me to sign up for the Army of Woman.ReplyDelete
It's ironic that the group that needs the greatest support from the breast cancer community is the one that is forgotten.ReplyDelete
All the pink in the world will do nothing to eradicate this disease without giving strong attention to primary prevention (i.e., stopping breast cancer before it starts), understanding why recurrence happens regardless of stage of diagnosis, and determining the mechanisms of metastasis.
I was astounded to hear from mets researchers that the survival for stage 4 breast cancer had not changed in 40 years. Breast cancer doesn't kill people. Metastasis does. What's happening here?
Yes. It's high time we started calling breast cancer an incurable disease. And it kills. It's like it's not OK to say that... but it's true and that's why, as Kathi has said, when we Get The News we're terrified. That's the reality of breast cancer.ReplyDelete
Keep writing. Keep angry. Keep making a noise. We're with you. Best, Sarah
This posting is brilliant. You say it like it is, and that's something I've always admired about you.
I do think many people would rather bury their collective heads in the sand than do the very difficult work of supporting research and acknowledging that MBC is very real and the people who suffer are also very real.
Instead, it's easier to get caught up in all the positive-think hoopla.
I watched a great friend of mine die of MBC. She fought and fought and fought, and it pains me to think of all her suffering.
Keep writing about this issue; your voice needs to be heard, and I'm going to repost this and twitter it, too.
Anna, brilliant, as usual, but this one really strikes deep. I've always thought the only way people could possibly believe early stages were curable were if they had never watched a loved one die from breast cancer. I don't believe for a second I'm cured though I was stage 1. I constantly feel like I'm waiting for the other shoe to drop.ReplyDelete
It's so true MBC needs to be brought out of the shadows and made part of the bigger picture where research is concerned. Truly, what else will help us in the end?
I'm in, however I can help.
Great proactive post! We need you too! Have you heard about FAMEDS's Fight for Avastin to stay on-label? Please sign & share the petition to save 17,500+ women with metastatic breast cancer: www.fameds.org/petition.php
Yes! Thank you for telling me what I SHOULD do! This is so helpful.ReplyDelete
Hi Anna! Just read your comments to my post about the Scar Project and want to make sure you saw my reply. Thanks for weighing in.ReplyDelete
As someone who is doing research in the field of metastasis, specifically in the context of breast cancer, this post (and blog) has been very inspiring. Thank you.ReplyDelete