The ABC's of Breast Cancer Advocacy

Today I'm just talking from my own experience about some of the simpler ways to "stay in" the breast cancer community as an active advocate. 

 

Here are some of the organizations that came up:

 

After Breast Cancer Diagnosis gives and trains mentors here: https://abcdbreastcancersupport.org/

Stand Tall AFC is the flat visibility organization that I work for: https://standtallafc.org

Lobular Breast Cancer Alliance welcomes advocates of all types: https://lobularbreastcancer.org

Wildfire Magazine is here: https://www.wildfirecommunity.org/

AskEllyn's blog is here: https://askellyn.ai/lifestyle-blog-sharing-breast-cancer-wisdom-stories/

Blessing Box, out of Texas, is here: https://blessingboxproject.com/

Knitted Knockers is here: https://www.knittedknockers.org/

 

Transcript:

Today I want to talk about advocacy, and I realize that I have so much to say on this subject that I think I'm gonna do two episodes on it. So, this will be the first of two in a two-part series, and I think this is a really important topic. I kind of wish that I had addressed it earlier. I've had a lot of folks asking me about advocacy lately, and it's a tricky topic because you don't really approach it in the same way in other parts of life. Um, we don't see a lot of people, uh, for example, you know, when you get diabetes, you don't hear about diabetic advocates, but you do in the breast cancer community a lot. And I think it's because it's a women's health issue. And women's health issues, usually they involve some amount of maybe injustice or a lack of power, or a lack of notoriety, traditionally. I think that that is not true at this point about breast cancer, but for whatever reason, the breast cancer community has really pushed itself into the public eye in so many different ways. And so now being an advocate in this space is very normative.

And yet most people don't know as they enter the breast cancer community as a new patient, what it really means to be an advocate. And if they have permission to be an advocate. So advocacy is actually one of the main reasons that I started this podcast. I wanted to tell the stories of all of the amazing advocates that I've met in the world, and I meet more and more every year, and I never seem to run out of interesting advocacy stories, and yet I've never really qualified that... I've never said, well, this is today's advocate is as I'm interviewing people. So I've done a poor job of defining what an advocate is and. That's mostly because it's pretty hard to define. It is so broad reaching and multifaceted, and it can be very simple or it can be very complex. And so today I wanna talk about the ways to do advocacy that are simple.

And next week I'm gonna talk about the ways to do advocacy that are a little bit more complex and involve a little more education and oversight. Uh, maybe some mentoring, maybe some coaching from others along the way. So first I wanna define my. Kind of idea of what it means to be an advocate in this context.

Unfortunately, the word advocate stems from a Latin word, which means lawyer. And so a lot of people when they hear this word advocate, they think about legal spaces. And I, most of all, because I actually had one of my, uh, most recent jobs actually was working for, uh, the foster care community. .

There's an organization that's a national organization called CASA, which is court appointed special advocates, is what CASA stands for.  And CASAs are volunteers that go into the court system and advocate for foster kids in a way that their attorneys can't. And I won't go into that because it's a totally different subject, but like most people, I have the same association of the legal system when I hear the word advocate, but in our culture and in our language, advocate means something different. It means supporter of a cause or public support of a cause or a group.

And that's what we mean when we stand in the breast cancer community and use the word advocate or the word advocacy. We just mean support and raising your voice in some way. Or doing an action in some way that supports this cause or this group, or in most cases, a subgroup of this larger group of breast cancer patients and breast cancer science and all the different ways that we need to be active in breast cancer.

And so the simple ways that you can do that, uh, and still call yourself an advocate legitimately, are to raise visibility and support in any of the niches that are involved in breast cancer culture. So first off, visibility. What does that look like? Well, it means raising awareness and showing up in groups where there's under, or misrepresentation of a minority group. So in breast cancer, there are many minority groups. There are the typical minority groups which have to do with race and gender, and then we have other minorities that have to deal with subgroups of diagnoses and, um, subgroups of, of breast cancer itself.

So we have the triple negative subgroup that represents about 15% of the total population of those diagnosed with breast cancer and the lobular breast cancer subgroup, which also represents about 15%. And then there's inflammatory breast cancer, which has a smaller percentage. And then there's other kinds of even more rare, uh, diagnoses like LCIS, for example, which is pretty rare, um, as opposed to DCIS, which is the more common type of precancer. And then there's the markers, which triple negative does refer to, but there are people that are triple positive and that's a pretty rare category of markers and diagnoses. So, I don't think that there's any triple positive advocacy groups out there in the world. But there are triple negative advocacy groups and um, and then the category of metastatic stage four cancer is another major subgroup in breast cancer culture and breast cancer community that is highly under and misrepresented, um, in terms of the number of dollars that go toward the research to pro provide a cure.

Traditionally, although there is more and more research now. Oh, and I didn't mention, there's also the subgroup of the type of closure you get after mastectomy. So that's another area where I am highly involved in raising awareness and visibility is for flat closure as opposed to the main. Kind of closure that gets a lot of support and accolades right now, which is implants, um, as a, a way of walking away from mastectomy. And then deep flap is the other way that is a little bit more commonly endorsed by the medical community, but flat closure is a lot less endorsed in this day and age.

So raising visibility, what does that look like? Well, it can look all kinds of different ways. It really basically means just not staying hidden in your identification with a particular minority group or a niche of the breast cancer community.

So being active on your own social media platform is actually an active advocacy. So even if you never leave your house or talk to another person in real life about the kinds of things you're dealing with. In your subgroup of the breast cancer community, if you feel like you're underrepresented and that that topic or that diagnosis or that subgroup is not getting as much visibility as it should, you have the option to go online and make a statement to your community or the wider community at large about how much you care about that.

And that is raising visibility. And in my book, that is advocacy big time. And I think that's the way that most of us start as an advocate is just going onto Facebook or Instagram or various other social media platforms and telling our stories and telling why this part of my story is really important to me and why the fact that other people aren't seeming to value that part of my story or that part of my breast cancer experience.

Uh, is is even more important to me to bring it into the light when it seems to be being shoved into the darkness or into the corners. And so we have an amazing tool at our disposal right now to raise awareness and raise visibility for all of these things. And we can do it in isolation as a single agent, or we can do it in community and in groups and non-profit and other charitable organizations.

So when you want to attend a larger group gathering that is for advocates in particular, you do have to many times have a sponsoring group or agency or nonprofit that you're identified with as an advocate and that. I will leave for next week's exploration of advocacy because that's a little bit more, um, of a complex relationship with advocacy than what I was gonna discuss today.

But in terms of visibility and support, um, I just wanted to say that you are counted among us as an official advocate, even if you aren't associated with a nonprofit, a government agency, or some other charitable organization, even though you might not get into NBCC's project LEAD, for example, without an organization sponsoring you or, um, you may not get to be a part of something, uh, that would call you an advocate and bring you up to the stage as an advocate, quite as readily. If you're not associated with a larger organization or community, you still are an advocate. I just wanna clarify that, uh, because the advocates that I have coached and led, for the Lobular Breast Cancer Alliance sometimes get a little confused about that.

And if they're confused, I'm sure that the general population of. Breast cancer survivors is also somewhat confused about that as well. So the second area of lighter weight advocacy and the ways that we tend to start out as advocates in the world would be, uh, as a "support agent", an agent of support.

So there's visibility and then there's support. And there's also probably a hundred ways that you can show support or provide support, either in person or um, through the mail or online. Lots of different ways. So I'm just gonna list out some of the ways that other people have supported me. I had my local breast cancer support group that was here in my rural area in Oregon that was ready to catch me first off.

That was the first place that I went for support personally and where I gave support personally by showing up to an in real life, in person coffee shop meetup, and talking to other brand new survivors and patients in treatment. And then the next place that I went after that was to a mentoring organization to receive a mentor.

I went to the organization called After Breast Cancer Diagnosis, ABCD, and um, all of these organizations that I'm mentioning in today's episode. I will definitely list in the show notes with links. Um, and ABCD provided me with a mentor and my mentor, Lori, uh, was also a member of the LBCA, and she's actually the executive director of the LBCA.

So that was the third organization that I received support when I started volunteering for them. Another place that I went for support, um, very early on was, uh, for physical needs. So I went and asked for a mastectomy pillow from one of the many organizations and individuals across the US that provide mastectomy pillows as a service to other patients through the mail.

And the one that I received my. My mastectomy pillow from was called a blessing box, and, uh, I'll leave the, the link to that below. But I've since found out about other places all across the US that provide these kinds of supports. Uh, not only did I get a mastectomy pillow out of it, but I got a little mini seatbelt pillow, which was also very handy, and a bunch of other little goodies that they sent as just kind of a, a gift in the mail.

Uh, a lot of women that I know need prosthetics and they don't have their prosthetics provided by their insurance, and so a lot of women that I know go to an organization called Knitted Knockers to get their first prosthetics, which are knitted as the name implies. Um, they're knitted prosthetics, and they have, they're stuffed with a fiber fill.

So just a really lightweight. Polyester filling that makes a very lightweight breast form that's pretty gentle right after mastectomy. So those are ways of providing advocacy too. And those are ways that a person can sit in their home and not interface with people if they're shy or if they're introverts.

They can do that kind of very physical service to others, um, through the mail. And there you probably, if you wanna do that kind of work, you probably would be best off with joining with all the others that are currently doing that work, um, and maybe being a regional representative of that work for them so that your package that goes through the mail and gets to people maybe goes a little bit quicker, uh, because they live in your general area.

So I would say it's probably wise to not reinvent the wheel and do all of that kind of marketing work that gets the word out to patients, because they're gonna be going to places that they already know and that their support groups already know exist. So no need to develop your own kind of brand new program that does its own marketing, uh, unless you have a, a really strong connection to your local support groups and local breast.

Cancer recovery, uh, organizations in which you could provide it to them directly and they could provide it to the people who come through their doors. So there's all kinds of ways. Um, you know, my mentor lives on the other side of the US from me, and I receive support from her, , all, all those miles away.

And I've, I met her in person when I finally showed up to a breast cancer conference, a science-based breast cancer conference for the first time that she's involved with. Even mentoring can be very much online and over Zoom or over the phone rather than in person. So these kinds of ways of offering support and receiving support, um, they can be in any form that you need them to be in many cases.

I think that. We kind of know where our calling is when we step into the advocacy space for the first time and we think about what we wanna do in terms of visibility and support for other people. We kind of find our niche, you know, just based on what we wish we had been provided sooner as a patient, I think most of us know what was missing for us, the other ways that I have been an advocate in the world is just through this magazine, wildfire Magazine, that receives essays from. Amateur writers that write about their breast cancer experience, that has actually been one of the most powerful ways that I have received support as a breast cancer survivor is listening to the podcast that Wildfire Magazine puts out called The Burn, which tells stories over and over every single week from the voice of the actual survivor who wrote their story in essay form for the magazine.

It's powerful, powerful work to share that deeply. And again, you don't have to be an extrovert to write for Wildfire magazine. You just have to write something and submit it and be willing to take the risk of maybe not having your essay printed in that magazine that you've submitted it to. But there's very little risk in terms of being.

Known in a public way or a personal face-to-face way. You can go really deep and be anonymous, and you can even write anonymously for places like wildfire. There are also breast cancer blogs, like the one that I write for. It's called Ask Ellyn. And , there are many breast cancer blogs that receive guest appearances and guest writers.

And you can write anonymously in those cases as well. And Ellen was recently on the podcast with me and she encouraged folks to send her any form of content. Um, she said, even if you're not a good writer, you can send her an audio file of you telling your story or you overcoming the challenge that is most important to you. And she'll put it on her blog. So the barriers are very, very low, in terms of doing this. And again, even if you only write one essay. Let's say one essay a year for a blog or for a magazine like Wildfire, you can still call yourself a breast cancer advocate because you are stepping up and being public about your support and being public about your story.

You're being known as a breast cancer patient. Which is really, it's hard, it's not a part of our tradition in terms of our breast cancer behavior. Um, and you know, in, in terms of the generations before mine, , certainly my mother's generation, but even. The one in between me and her. I think it is more common to be secretive, quiet and dismissive about your breast cancer experience in those generations.

And it is becoming super common now in the younger generations to be more open, known and public and articulate about even the most embarrassing and somewhat shameful parts of our experience. And that's really the. The crux of what I'm getting at in this podcast is wanting to hear people's stories, the most painful parts of their stories, how they came through them, and how they have achieved success in that area of struggle.

Um, so that other people can hear what it was like and how it happened for them and be encouraged. So, of course, being a podcast guest and on a podcast like mine would be a wonderful way of starting out being an advocate and raising visibility for whatever issue in the breast cancer space that you have struggled through, and I welcome that.

If you're interested in telling your story with me, I'll just go ahead and tell you my email address right now. Since we're talking about it so that you can get in touch with me directly. My email address is [email protected], and when I reply to you at the bottom of my email in the signature part, there's a scheduling app that you can sign up right away.

And talk to me about what story you wanna tell. So there's not a lot of barriers in that case either. I think a lot of people are really intimidated and think that being on a podcast requires expertise. But this podcast is not that kind of podcast at all. Uh, you don't have to have any kind of expertise except for the story --telling the story of your own body and your own experience going through breast cancer.

That is the best kind of expertise that I can find. So I would love to talk more about what you all as listeners are thinking and experiencing and trying on as a new way to do advocacy in your own life. Um, I can tell you what I do right now in terms of visibility and support, um, what I'm doing right now.

Uh, throughout the year is I show up to breast cancer events, so I go to as many walks as I can in my region. And I let it be known that I'm flat, flat chested after mastectomy. I do that either by taking my shirt off if it's appropriate in that space, um, which it usually is at a walk, or I wear a t-shirt that has a really large font in clear letters like, and it just says "flat" on my chest.

And in a breast cancer event, everyone knows what I mean when I say flat. Um, there's no questioning that. So it's pretty clear that I'm identifying myself as a Flattie and I'm saying, come talk to me if you'd like to. So come talk to me if you'd like to as a step beyond visibility, but wearing the t-shirt is definitely a step toward visibility.

Um, I also go to walks and handout literature now, so I, I stand at a table and I hand out brochures and stickers and other information about, especially lobular. And flat closure. So those are my two little niches of interest in minority groups. Um, actually flat closure is not so much of a minority. There are still about half of us that ask to go flat after mastectomy, but it's a perceived minority and it is a choice that is being squelched for whatever reason.

For most surgeons these days, they don't mention it as a choice. So because it is under and misrepresented. In the medical space, we see it as a minority kind of cause. So I wear T-shirts also for the lobular community and say, ask me about lobular cancer or ILC. Um. I wear those in the conference settings , or just community settings where a breast cancer contingent is present.

So today I just got a brochure from a another breast cancer survivor about a gathering around dragon boat racing, uh, where there'll be hundreds of breast cancer survivors there because they are dragon boat racers or their supporters or families. And so. In that case, I'm going to have to decide whether I'm going to wear my flat garb or my lobular cancer garb.

And I'll definitely bring , both of those brochures because I always like to bring all of the brochures that I have and, uh, share them depending on who I'm talking to and what their need is. So for me, I have to kind of choose between those two groups. I'm very equally committed to both the lobular visibility, raising awareness raising, and the flat closure visibility and awareness raising.

But I think for most advocates, they have one in particular that they are favoring and more passionate about.

I still go to breast cancer support groups, and I have also a general cancer support group, so I show a lot of visibility in those groups beyond just sharing my personal struggle and my experience and my resources. I also almost always bring up my passion for flat closure awareness and lobular breast cancer awareness

I went to a, a fitness retreat about a month ago, and of course brought all of the brochures and information there. And depending on the conversation that I would have with folks and their particular passion or bent or struggle, I would share a particular piece of literature with them, um, after getting to know them.

So that's a very personalized way of. Showing visibility and it, it kind of goes a little bit into the area of education, which is, I'll save that for next week's. Little bit more complex discussion on how to be an advocate in the education and science spaces, but those are some of the contexts that I am visible as a, a particular kind of advocate, doing particular kind of visibility work

when I go into my hospital system, I carry those brochures as well and I make an attempt to go into the library as well as sharing with my clinicians those brochures. And , again, that is a little bit, um, bordering on education, but sharing brochures is not. Being an educator, it's just handing, handing things off.

So I would like to encourage you if you're interested in getting brochures and sharing them in those settings, like with the library at your hospital or with your clinicians, when you go in to see them. You don't have to call yourself an educating. Advocate or an educational advocate, um, you can still call yourself a visibility advocate in that case because you're just raising awareness and visibility by handing a piece of paper over whether they ever read that piece of paper or not.

You're making it visible to them, and so that's kind of a borderline issue. Or a way of being an advocate, and you don't have to have anyone's permission to do that. I just wanna say, you can, you can get their brochures. You don't have to have a relationship with the organization that produces those brochures.

You can, but you don't have to. You can ask for them or you can print them out yourself in many cases. And just give them out to the folks that you run into in your life. And you don't have to have knowledge to back it up or a schpiel or an elevator speech or anything. You can just carry literature around with you about the thing that you care about, getting visibility and, and just maybe place them out in places where, you know, breast cancer survivors or their clinicians are.

So that's a pretty powerful way of, promoting visibility for your niche. So in the two organizations that I work with, Stand Tall, AFC, uh, which works for flat visibility, and the Lobular Breast Cancer Alliance, which works for lobular breast cancer visibility. Those organizations will give you brochures.

Or we'll send you the PDF to print out your own brochures. And they're very happy to do so. Whether you are an official advocate of theirs that's been trained and is being ongoingly supported by them or not. So that is a way that they are very supportive of you just taking the first little step of sharing literature.

And that is a. Like I said, a powerful way to promote visibility and awareness that is bordering on education because if the person does actually open it up and read it, they will be educated because of you and your action. So I would love, in the days between. Today and next Sunday when I do my follow up part two more Complex Ways of Being An Advocate episode, I would love to hear from you any questions or barriers or things that are intimidating to you about doing these kinds of things and just want to encourage you to try it out this week.

Um, and think about making a goal however you make goals and track your goals in your life to become. A simple, quiet, um, somewhat lightweight advocate in some of these ways, in the areas which you are passionate about, and maybe like my friend Danyel, who's studio I was at this morning and who I interviewed a couple of weeks ago.

Maybe you'll start your own thing. That is about breast cancer advocacy. Danielle was a photographer when she became a breast cancer patient, so it only makes sense that she would become then a photographer of breast cancer survivors in the way that made her feel the most powerful and resilient after breast cancer, which for her was.

To dress them up as warriors and take pictures of folks that resonate with that. Not everyone resonates with that, but for those that do, um, she's able to able to be an advocate in her own unique way using her own vocation and her skills and gifts. So maybe you'll have a way to do that as well, and maybe it'll be a lightweight way that you do that.

Um. Writing for someone else's blog or taking pictures and sharing them online in your Instagram, or maybe it'll be a more complex way, uh, like myself and some of the work that I do and Danyel and some of the work that she's doing. Um, really getting into the lives of other patients and opening yourself up to their emotions and needs.

So next week I will talk about some of those more complex ways of being an advocate that is maybe trained in a more official way, working on things like science, changing the way we do science. And, uh, as I said in my last episode, I think there'll be more of a need for activism actually in the science community now that we're going to be lacking money and support for the research community because of what's going on in the federal government.

So, um, maybe some advocacy and activism for the science community coming up, and that'll be. A good thing to see blooming and growing across the country. And um, and then the training that's involved in becoming an official advocate and some of the organizations that you might need to support you in doing that well.

So next week's talk will be a little bit more on that level of, where do you go when you wanna really get busy and make this kind of your life's work in, you know, at least a part-time way as a vocation? And that's a different kind of advocacy than the lightweight ones that I've talked about today.

So I hope you'll tune in for that if you're interested and if you're interested in these subjects of advocacy and these avenues of doing it, I know you'll really enjoy my future guests on this podcast because that's the kind of conversations that I wanna have in the future. So I will talk to you next week on the episode about Heavyweight advocacy! Talk to you then.