002. The Secrets to Strong Self-Advocacy

Updated: Jun 23

10 Tips for Navigating the Chaotic Medical Minefield of Breast Cancer





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Episode Summary:

In this episode of the Your Killer Life podcast, Tammey talks about the importance of taking a position on your medical team as you navigate the chaotic medical minefield of breast cancer. Sharing personal experiences and examples, Tammey walks you through ten tips for self-advocacy success.


“...honor that you are an important part of your healthcare team. You are not along for the ride. You are an active participant.-Tammey Grable-Woodford Click to tweet

Topics in this Episode:

  • Are you sure your nipple hasn't always been inverted?

  • When help is more harmful than helpful

  • Does your new primary care doctor have experience with breast cancer patients?

  • You are the resident expert with your body

  • Acknowledging and navigating provider bias

  • Research your providers

  • Research your diagnosis

  • Always take notes

  • Get copies of everything - absolutely everything

  • Use a medical journal

  • Create an appointment action plan

  • You can say no

  • Escalate as necessary

  • You have more control than you might know


Contact Information and Social Links:


Resources:


Transcript:

Hello and welcome to Your Killer Life, a podcast where we talk about the really real realities of a killer diagnosis, like breast cancer, with a focus on health, hope, and happiness. I'm your host, Tammy Grable-Woodford, and in February of 2015, I was diagnosed with stage 3B micro-metastatic estrogen and progesterone positive infiltrating lobular carcinoma.


That is such a mouthful. And on today's episode, we are going to be talking about the importance of patient advocacy. And after a cancer diagnosis, you know, sometimes, um, sometimes you're provided with a nurse navigator, sometimes you're provided with an advocate of sorts. Sometimes you'll have a family member who will step into that role with you or for you. And sometimes it's a close friend, and then other times it's you. And you're the person that is sort of placed into that advocacy role.


So today I'm going to share three stories, and I have so many examples from my own breast cancer journey, but I'm going to share a couple of personal stories and then 10 tips for really being your own best advocate when it comes to navigating the wild, wacky world of healthcare, as it were.


Are you sure your nipple hasn't always been inverted?

So, there's three examples actually that I did want to talk about. And the very first one is the very first appointment. So, with my initial appointment to the gynecologist, I had noticed that I had had some changes to my left breast, so they were subtle. They weren't huge. I had, as I mentioned in the kickoff episode, I had gotten really healthy in my life, and so part of me was thinking, well, it's just weight loss and whatever, and then it went on long enough and the, and the changes continued enough that I kind of got this, I don’t know, sixth sense, I guess, that said, “You know what, things are not right.”


And so, I scheduled an appointment with the doctor, and in that appointment, it was a new provider to me. It was a new gynecologist. I hadn't seen him before. I was talking with him about how the breast had changed. And, and most of the time when you think about breast cancer, you're often told to look for lumps, look for redness, look for heat, like there's all of these things to look for. And I didn't have the typical symptoms.


What I had instead was an inverted nipple. So my nipple had retracted. One breast was slightly firmer and smaller than the other. And I mean, so subtle, that if you weren't me, you wouldn't, you wouldn't even notice it. And I had a slight, slight dimple. Which you wouldn't even notice. Again unless, unless it's you.


And I guess that's sort of the moral of some of this story today is that paying attention to your own body because you live in it 24 seven. You're the expert. Literally the resident expert when it comes to yourself.


So… with no lump, no heat, no redness, no pain… none of those symptoms. Went to see the doctor and at the exam, after he palpated needed the breast exam, he stepped back and he said, “You know, I don't feel anything. I don't really see anything. Um, are you sure that your nipple has not always been inverted?”


This was the first crossroad, so I could have accepted his statement as truth that he didn't see anything. Everything seemed fine. And I could have left that appointment. But I knew, that things had been changing and not just that they had changed, but that they were changing.


The dimple was getting bigger, the breast was getting firmer, and like I said, subtle as it was, it wasn't this static change. I knew things were changing. So, even though, even though you could argue and say, I could have just accepted what I wanted to hear. Which was, “everything is fine.” I knew it wasn't.


So, he went back, he did another exam. He was a, you know, a little more aggressive with it. And he says to me, “I dunno. Maybe, maybe there's something under the nipple at two o'clock but I'll go ahead and order the mammogram and I'll order the ultrasound at the same time just in case they want to do it, and then you have it there.”


Few days later, I was told I had cancer and a lot of it.


That was my first, my first experience with navigating and being my own advocate in this process. And it's a scary one, and it can be kind of hard to step into that role and you can feel like you don't know what you're talking about, but again, you're the resident expert when it comes to yourself and knowing what feels right and what doesn't feel right.


I was diagnosed to stage 3B. Imagine if I hadn't advocated. If I had accepted everything looks okay. I might not be here today.


When help is more harmful than helpful

The ultrasound appointment was the second immediate opportunity, and I mean immediate. Within the same week, for me to advocate for myself, my husband at the time had asked for a divorce. And I often refer to, to cancer as a marathon and not a sprint… and not everyone who starts this marathon with you is going to make it all the way to the finish line. Meaning that after a while, people get fatigued. You're fatigued, but you can't escape it, right? Like, yeah, I would love to be done with this. I would love to be moving on with my life or find normal.


So not everyone who starts with you, is going to make it through that full marathon. And that's okay. My husband at the time didn't even make it to the starting gate, and so he had asked for divorce. I had told him, I think I have cancer, this is why, I'm pretty concerned, I'm making an appointment. And two weeks before that appointment, he asked for a divorce and we separated.


He didn't show up to the mammogram appointment and we'd been together for my gosh, 20 years. And he did not make it to the mammogram, somebody in the office called him out on it. And so he did make it to the ultrasound appointment. And as I was wiping that cold ultrasound jelly off of my breast with that warm towel, he looks down at me and says, “You have to take me back.”


I said, “No.”


Because frankly, and I told him this, I didn't have, I didn't have the strength to do this for both of us, meaning I already knew. The second I heard that I had cancer and a lot of it I knew, I knew I had work to do. I knew I had research to do. I had healing to do. I had surgeries coming up. I had things that I couldn't even at that point in time fathom, that I would have to figure out.


Can I work through this? Am I going to be able to keep my job? Am I going to have to change jobs? Am I going to have the energy like…? I had no idea, and yet at the same time, what I did know is that it was going to take all of my focus on survival. And that was the second time in that week, I advocated for me, for putting me as a priority… for putting me first.


Does your new primary care doctor have experience with breast cancer patients?


The third instance that stands out, was in 2017. So, I was diagnosed in February of 2015. 2017 things are starting to feel like they're getting back to a little normal. I had had, my gosh, I had my mastectomies and March of ‘15. I had my expanders placed in June of ‘15. I had the… oh, exchange surgery where they took the expanders out and put the implants in, the first one in September of 2015, April of 2016 we actually did a revision because there were complications with the first implants, and then September of 2016 I had nipple reconstruction done, and so 2017 I'm thinking, I'm just getting back to some routine. Right? And so I go in for just your average everyday vanilla annual exam, and if that was the whole intent.


When meeting this new provider for the first time, and actually meeting any provider, I always kept with me and I still do keep on my phone diagrams of what reconstruction looks like. And that's one of the first questions I ask providers when I'm working with them. Have you ever worked with someone who's had breast cancer? Have you ever worked with someone who's had bilateral mastectomies? Have you ever worked with someone who has had reconstruction? Do you know what my type of reconstruction looks like under the skin? May I show you an image of what that looks like so you know what to expect? Can we have this conversation?


And I do that with every provider, massage therapists, chiropractors. It doesn't matter. Anyone new to me, I will do that. And I may do it more than once.


So… had that conversation and said to her, there's no point in doing a breast exam. I don't have breasts. I do, but I don't have breast tissue. And explained, here are the surgeries, here's the history, and at that point in time, in 2017 I was still under the muscle with my implants, and so I had a silicone implant underneath my pec muscle between the pec muscle and the inframammary fold. I had a piece of cadaver tissue that was, that was kind of at the bottom, holding everything up. I had had fat transfers. Two of them actually. I'd had my nipples reconstructed so I had more cadaver tissue and scarring. I had, I mean, all kinds of things going on. Right?


And it's not a breast, so it's not going to palpate like a breast. It's not going to feel like… it's not that tissue. It is not the same tissue.


So… I tried to decline the. Breast exam, but she talked to me into it. She's the provider. I said, okay. So she tells me she feels some lumps. I'm not surprised I have so much scar tissue in there.


Holy moly.


I'm not surprised she feels lumps, but this concerns her a lot. So she wants to send me off to radiology. Radiology wants to do a mammogram. Plastic surgeon said no more mammograms, not with my under the muscle implants and as tight as everything is, my body, no, that's not what we do.

No more mammograms.


Radiologist… have the conversation with him. Have you ever worked with anybody who's had breast cancer? Who has had the bilateral mastectomies? Who has had reconstruction? Can I show you what this looks like? We have a debate about whether or not I should have a mammogram. He says, okay, we won't do a mammogram, we'll do a 3D mammogram.


That's still a mammogram. (laughing)


Finally… I MyChart, my plastic surgeon. Because I'm not being heard. I'm advocating, but I'm not being heard. And my plastic surgeon sends me in my chart back. And yes, I know, we like to pretend in this day and age with the electronic medical records, everything talks, It doesn't… (laughing) It's just doesn't. So… screenshot her reply, upload that as an image to the MyChart to my primary care provider and to the radiologist. And they finally acquiesce, and we do an ultrasound.

In the ultrasound, they see some voids, they see some areas that are a concern. Again, I have had fat transfers, cadaver tissue, scar tissue. But what I unfortunately allowed to happen this time is I let the PTSD and the anxiety start to get the best of me, and so I started to get spun up and stressed out and just freaking out that now, oh my gosh, it's back. I'm having a recurrence. And then I talk myself off the ledge.


I didn't have lumps the first time around. So I took a pause. I’m like, wait a minute. So, send everything off to my plastic surgeon because this is what she looks at. She's a specialist. She specializes in reconstruction. She has seen many ultrasounds, many, many images of reconstructed breasts.


And she says to me, “Look, I wouldn't worry about it. If you're that worried, we can do a biopsy, but please come here to have the biopsy done. Because what they're seeing is only five millimeters from the implant, and we want to make sure that we don't damage the implant. If we do a biopsy.”


So I think back on that one a lot, especially now, because that is when I really, I found my voice in the beginning and I advocated for myself and I did so with my gynecological appointment, and I did so with my ex-husband. And yet at the same time, it is so easy to kind of get, I don't know, I don't want to say sucked in, but the trauma, the PTSD, the stress around the, just the word cancer, right? That fear of recurrence, that is kind of always there, because they may tell you that you are, you know, you're NEAD. You have no evidence of active disease. They may say that they got it all, but the reality is, you still in your mind, are living with this thought that at any moment it's going to happen again.

Where you're just running along living life and all of a sudden you have this huge disruption. So after that, I got much better about advocating. After the stress of having to debate with doctors about mammograms versus ultrasounds and what they thought they saw versus what it was and the whole bit, I got better.


I got better at being an advocate, taking notes and listening to my instincts and saying, no.

So I just had, unfortunately, another terrible experience with primary care, and I'm going to tell ya, I think part of it is provider bias. They hear that you've had breast cancer, and that's just…


I have a girlfriend, she's a survivor, she is one of breasties, and we joke all the time that, you know you're going to go the dentist they are gonna be like… welp… you’ve got a cavity and that must be a cancer cavity, because everything defaults to being caused by cancer… once you've had it…

At least that's, you know, it's sort of like, if you're a hammer, everything looks like a nail. And so providers hear that and I, and it spooks them a little bit.


So again, and with this provider, I was more adamant about, no. So, when she wanted to do breast exam, absolutely not. No. Because I have specialists that I see if I have any concerns there.

So, let's talk about how you can set yourself up to be a good provider of communication with your medical providers and how you can set yourself up to be a really great advocate. And I've got 10 tips for you here.


1. You are the resident expert with your body:

  • One. And this is possibly the most important, and I've said it a few times already, but recognize that it's your body, right? You truly are the resident expert with your body. You know. You have way more information. So… honor that you are an important part of your healthcare team. You are not along for the ride. You are an active participant. And if your providers aren't honoring that, then you might need to elevate to another advocate or patient advocate or frankly find a different provider, because you are a part of that team.

2. Acknowledging and navigating provider bias:

  • Two. Overcome provider bias. Now there is provider bias. Like I said, you know, I've dealt with this a few times, because they see cancer and that's like… where they go. That's just all they can think of. And, you know, I’ll overshare. I've had a backache for a few months, and it hasn't gone away. All right, so anyone who's listening, who has ever had breast cancer knows that bone cancer is one of the metastasis that is scary. Any metastasis is scary, and it's also common. So, the fact that I've had a backache for a couple of months and it hasn't gone away, it's not resolved. It's gotten a little bit better with chiropractic. Seems like a good idea to check that out. Talking with primary care, they want to refer me to an oncologist. My oncologist is going to say, “Well, have you had any diagnostics done? Have you talked with a primary care provider?” And so there's that bias that happens there. But I also want to say that bias represents in other ways, and I want to read this because I do want to get it right. So if, if you're watching on YouTube, yes, I still have notes. I'm still new at this and I, I'm a still, I'm still nervous. We're just going to say that. But this is really important, and it is from Tené Lewis, an associate professor of epidemiology at Emory University Rollins School of Public Health in Atlanta. And what Tené said, is that if you are African American or Latino, and you present to the emergency room with a broken leg or a kidney stone for example, you're less likely to be given analgesics at the recommended level. And it doesn't matter what part of the country you're in. It doesn't matter what type of place you present to. They've seen fairly consistent, that this is an issue and that there are similar racial differences around cardiac care and even some studies showing delays in kidney transplant rates and so on. And so I'm not saying that providers are bad people, so please don't hear that. And if you are a provider, oh my gosh, I mean, I'm in love with all of my providers who saved my life. I mean, really, truly. What I am saying is that bias exists in all humans. And so it's really important. And so if you are someone who feels like you're encountering any type of bias, it's really important that you advocate for yourself or find folks to advocate with and for you. And/Or for you.


3. Research your providers:

  • Three. Research your providers and get a second opinion. Oh my gosh. Thank you, Google. So… I already talked about, um, how I did have multiple opinions on my procedures. It was really important to me that I have multiple opinions and that I find the personalities that are in harmony with me.

You know when you step onto that cancer train, it is, it's a bullet train and it is just going at a hundred miles an hour. And so it's, it is really important that you do get those second opinions and that you do your research and make sure that folks are happy. With my general surgeon, it was great. That was an easy one and he was absolutely amazing. I was able to get a referral. Or, um, one of the plastic surgery consults, which that's always the best. When somebody says, you know, “Hey, my provider was great.” My integrative oncology team was a referral. Right? And it's sort of like this secret, not so secret club. Once you're diagnosed, you find that there are so many other people who have had this experience and the survivors, they, they want to see you survive and win. You know, it just breathes belief into all of us when we see others overcome.


4. Researching your diagnosis

  • Four. Understand your diagnosis. Look, I've been told by providers that I don't need to Google anything. I don't need to read inserts. I don't need to know what the side effects are… I don't…. And to me that just seems irresponsible. To me, for me, it seems irresponsible. And I get that this is a heavy load. Oh, do I get it. Right? And there's a lot of scary stuff and you can sort of whip yourself into a frenzy, I guess, or into depression or fall down a spiral or down a rabbit hole, or all of a sudden you only see the negative things, but at the same time, it is so important to research and understand your diagnosis. Until I was diagnosed with breast cancer, I didn't know that, that there were multiple types of breast cancer. I didn't know. There was no reason for me to know. I'd never researched it. Nobody in my family had had it, and you know, so I didn't know. Once I was diagnosed, I lived for those pathology reports. Data. Things I could research so that I knew how I could do my part, not only as my advocate, but as an important part of the team, of that medical team, that was treating me. The other thing is I was standing in the midst of all of these specialists. So here you have all of these specialists all focused and with a solid understanding in their area of expertise. And you're sort of the, you know, the center of that wheel. So you have all of this information coming at you and all of it applies to you, and you're trying to piece it all together. And that took a lot of research. I was just trying to keep up, but also trying to make sure that I understood enough to ask the right questions. That I could have good conversations with my providers and leave with a solid understanding and a sense of calm. To the best of my ability.

5. Always take notes

  • Five. Notes. Always take notes. Even if later you're not quite sure what the heck you wrote down. Always take notes or have someone take notes for you. Or hit record on a recorder, or on your phone, use voice memo, whatever it is, because you have so much information coming at you so fast from so many different people and so many different options. And especially those first couple of weeks, you know, my initial notebook was this tiny, tiny little thing like, I dunno, it was probably quarter size of a 8.5x11 sheet of paper and scribbling in that thing constantly. My binder now, I literally take a three-ring binder with me to my doctor appointments again, because the EMR systems don't all talk to each other. And so to me, I've got, you know, an oncologist on one system, a plastic surgeon on another system. My general surgeon was on yet another system, and then primary care has been on different, it's just been, it's been crazy, right?

6. Get copies of everything - absolutely everything:

  • Six. So make sure that as number six, you get copies. Of all of your pathology reports, all of your imaging reports, all of your really, your summaries, anything that is potentially useful. So… just this last month I ended up scanning information from an appointment I had in 93 that has to do with an autoimmune thing that I've got, as well as the last ultrasound that I had on my abdomen and the notes from my last surgery, which was just April of 2019 for reconstruction, where I had to have another revision. And the last notes from my oncologist where he was like, “yep, you’re NEAD. Go see other people for other things.” And so that information, being able to have that and provide that to providers will help them do a better job, but it also will help you do a better job with your part of being part of your medical team.

7. Use a medical journal

  • Seven use a medical journal. So I didn't do this initially. Kind of wish I had. And there are some great journals out there now. Um, you know, it's one of those things that you don't know what you don't know until you find out you don't know it. And so with that, find those journals. You can track your meds, you can track your pain, you can track your, your appointments, your doctor info... It is your, if you're doing your own glucose monitoring or your blood pressure, whatever it is. It makes it so nice to sit down with a provider and be able to say, here's the history, here's the data. Right? Instead of trying to remember it. I'm one of those because I went to an integrative clinic. I take a lot of supplements, and for the longest time, the, they weren't even in the EMRs, right? Like nobody had heard of indole-3-carbinol. So they just look at me like I lost my mind. It's in there now, but I used to carry in my three-ring binder, a sheet of what it is that I'm taking and how often I'm taking and how much of it I'm taking because it was something that was outside the norm for those providers.

8. Create an appointment action plan:

  • Um, Ooh, eight. Create an action plan for your appointment. And this is so important. If you have questions, here's the thing, you get to the, you get to the doctor's office and you've got stress, you've got anxiety, you've got chaos. All of that is happening. And you may, in your mind, have things that you want to talk about, but you don't remember, because of everything else going on. So have a plan. Sit down and think about, you know, what are my goals for this appointment? What symptoms do I want to discuss? What concerns do I want to have addressed? What questions do I want answered? Bring your journal with your notes, and make sure that you do research on things you want to discuss. So there are so many questions I had along the way. You know, I think back to probably making the decision about having a bilateral or unilateral mastectomy. And in the world of breast cancer, there's all kinds of opinions on this. So, and again, depending on the type of cancer you have, that will probably make it vary a little bit. So with lobular, lobular tends to be bilateral, tends to not show up on mammogram, doesn't even always show up on an MRI. So, I knew because I had done my research, I was able to have that conversation with my general surgeon. Now, my gynecologist was encouraging me to just do the one side because that's the side that we knew had cancer, we didn't know if there was cancer in the other breast and it looked healthy. For me, I didn't want to take that risk, especially after I understood that my type of cancer tends to be bilateral. It tends to be slow growing. That it could be another seven years and then I could have another tumor that would pop up. Me doing my own research allowed me to have a conversation with my general surgeon that helped me make the decision that was best for me. When I asked him if he had seen that in his practice and he said yes multiple times, he had seen lobular present in the quote-unquote, healthy breast. And that is a frustration for patients to get, because now you have to advocate with your insurance companies, right? You're like, no, I want an MRI because it doesn't always show up on ultrasound and it's a pain to get them to approve it. So, do your research. Definitely.

9. You can say no

  • Nine. Understand your rights. So I mentioned earlier, you can say no. You can say no to the scale. You can say no to blood pressure. You can ask them to retake your blood pressure. I… at the terrible primary care appointment here locally that I told you I had. They actually bruised my arm. And they used, basically they used a cuff – an automate cuff that was too small for me, bruised my arm, and the blood pressure that they were going to chart was so high that I looked at the MA and I said, “Do I look like I'm having a cardiac incident?” She said, “No.”, and I said, “Well, then why would you chart that BP?” And I asked for a manual. Here's the thing. You can also decline it. You're in charge. Your providers are there to support you and to create health and help you along your healing journey. Right? But you can still say no to these things that if it's just you don't want to deal with it today, say no, you can do that. So not, you know, and maybe right. Maybe not always the best thing to do if you've got other issues going on and there's a reason for it, but a lot of times, right. It's like that's just part of the process. You show up, they weight you, whatever. Okay. You can say no. One of the things I love about plastic surgeon, right? She never weighed me.

10. Escalate as necessary

  • And number 10 is escalate as necessary. This is also huge. Sometimes you have to get clinic management involved. Sometimes you have to get med directors involved. Sometimes you have to get patient advocates involved. All of this is true. Sometimes you've just got to do that and it's okay. What's not okay, is you not getting the treatment that you should have that you need and that you, and the quality of care that you deserve. And so, it is just paramount. And if going through all of that, you still don't have a resolution that feels right to you. You can always file a grievance with your insurance company. Now, hopefully it never gets to that. Right. Uh, I have only had that happen once. So hopefully, hopefully all of this helps you be a better communicator and helps for better success in the overall experience as you go. Go along your way to healing.


You have more control than you might know

Cancer is exhausting. It's exhausting. And I mean, I know this personally and deeply and that… that exhaustion can carry with you for a long time. And when you feel like you don't have any control, you feel like you're just sort of, you know, floating down a chaotic river without any, any way to navigate yourself. And it doesn't. Feel good, it creates more stress.


And I always joke. Like, one of the first things they say to you when you're diagnosed is you've got to get your stress under control. And at the same time telling, you know, in my case, you gotta get your stress under control.. you'll be lucky if you have five years. (laughing)


So if you have to kind of find those pockets of being able to, to have some control and understanding, and slow the boat down a little bit and, and not feel like you're just getting tossed around in the current.


And you have every right to be an active participant in your health care. Every right to be an active participant in your health care. Your opinion, your experience, your knowledge of your body - all of that is paramount when it comes to your healing.


So those are my, my 10 tips. My personal anecdotes as to kinda how I came up with that, and what I have found in my personal life. I'm curious to know if you've had a similar experience and also what your tips are for advocating.


If you have tips for helping folks navigate these waters, would love to hear it. So if you're watching on YouTube, drop a note below, or if you're on the blog or Facebook, wherever you're at, I would love to hear your thoughts.


And don't forget to subscribe either to the podcast or to the YouTube channel or both. And I'm excited, next week, Griff and I, we're going to be talking about stress management and. We're going to be talking about that both from the patient side and the caregivers side. And really that's an episode you're not going to want to miss because we're going to cover proactive solutions and talk about how you get through that together as a team, which is huge.


So thank you again for listening. And as I especially polish myself and this process. I appreciate you so much. Be sure to subscribe, check us out on YouTube. Oh, and leave us an honest review - would very much appreciate that. Let us know how we're doing.


All right. Thank you so much. Until next time, stay focused and keep building your killer life.

Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.  

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