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002. The Secrets to Strong Self-Advocacy

Updated: Jun 22, 2021

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


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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?

Tammey Grable-Woodford pondering a question

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?


Tammey Grable-Woodford at expansion appointment for breast reconstruction

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