Advocating for Yourself

I tried to find my voice in this. I've tried to be my own advocate. I think that's very important that you just don't take their—the health practitioner's, word for everything. You just have to listen and weigh and figure out what it is because you do have rights. You have patient rights. So, you have to wrestle those rights back to you, to your side. So, that you feel good about yourself, and that's what I wanted. I wanted to be able to feel that I was doing the best for [NAME]. It was all about taking care of [NAME]. I wasn't going to leave it to anyone else.

As a patient, you have to learn to speak up. Don't take the first answer you get. Do more research on your part as a patient. Just because we had only one plastic surgeon here in town, don't just stick with him because he's local. Do more research. Do something else because this is your body. This is not his body. If you're not happy, go to another doctor. Go to four doctors. Go to five doctors until you feel like this doctor is the one that's going to want to help you.

So, I made the doctor's appointment. I went. And so, my doctor was more concerned with my high blood pressure [LAUGHS], which is what she had been treating me for consistently. And at the end of the exam, I said, "Um, do you do, um, physicals?" That's how I put it because I associated physicals with where, you know, it would be a whole-body check. So, I didn't specifically say, "Oh, can you check my breasts?" I didn't say that explicitly. So, she didn't know how much it was kind of bothering me. So she, but she did tell me, she's like, "Well, you know, I didn't allot enough time, so let me call and make another appointment, and we'll do it then." So, I did that and I had a later appointment, and my kids were in after school, and father's at work, and it was just my routine. That was my routine - picking them up and doing all that. And I was waiting in her office for almost an hour. And I'm like, I have to leave now because you know, the school was going to call me and say, listen, no one came to pick up the kids. And I had to make a decision and I left. But a week later, I explained to her why I left and everything. I told her, "Listen, I left, but this thing under my arm is really bothering me, and I need you to take a look at it."

You called on the phone?

Yes. And so she didn't have any openings, like, in the near future, enough for me. So, she referred me to one of her co-workers, and so I made the appointment with that physician. And I went in there, and the, it's, when you think about it afterwards and you can remember the expression on some people's faces, it's like, okay. They, you know, for me, this is the first time but for them, they've seen this kind of play out in many different ways for many different people. So, he immediately said, "Alright. Let's just do the mammogram."

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So, just was weird that I'm too patient. That's what I fight with myself over that I'm too accommodating. I'm too considerate of other circumstances. And I found every reason why, "Mm-hmm. Alright. I could just wait. I could just wait." I don't know that it would have made a difference, honestly. I don't know that. But it's something that I thought about early on.

Because it delayed your diagnosis by a couple of weeks?

Yeah, yeah. Even up to the first primary appointment.

Right.

I think, "Wow." I could have, this is months that have gone by at this point. It's months. It was January to July.

It's very important that you know how to advocate for yourself. Take it step by step. It's cliché, but it's still true that you have to be your best advocate, or you find someone who you trust to be your advocate. There's no dumb questions. There's no stupid questions. If you don't feel comfortable with somebody, and you're getting that sense that this isn't a good fit, your insurance company has a network. If you don't want to look it up online, you call the customer service, the member services, and you find somebody else. It's good to document; this is what I went through, this is what I need, this is what I'm feeling, and be able to say your story in a way that people can hear you. If that makes sense.

So, March of 2018, I went in for a well woman exam. And there was nothing that brought up any red flags or anything. Everything seemed normal and OK. I was given a breast exam, a physical breast exam. But she, the physician, didn't feel anything.  So then less than five months after that, I felt a lump on my own.

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So, I went to [LOCATION], which is where I was going to the doctor at the time. And they did a biopsy. But the doctor assured me that I was young, and it was probably a fibroid or fibro-, I forgot what they’re, fibroadenoma. And   he was actually trying to tell me that I should probably just wait 6 to 12 months and come back and see if it had grown or anything.   And my partner said absolutely not.   She had lost her mom to cancer. And she said just, you know, it's better to just check anyways. They were saying I was too young to get cancer.   So anyways, I had that cancer biopsy right away. So, then they found out it was cancerous. And   shortly after that, they, they did the MRI, and then they discovered that there was more than one spot in that same breast.   There were two other spots. And they weren't going to biopsy them to find out if it was the same cancer, which I thought, I mean, I don't know anything about cancer. I didn't at the time. But I was very trusting of the doctors. So, I thought it was different, but I wanted to trust them and   just go with what they said. So, the oncologist in [LOCATION] had already decided what they were going to treat me with, not even knowing the full extent to   my situation. And that was very alarming to my partner. And she said we should get a second opinion. So, we decided to go to [LOCATION]. Which at the time, it was very scary because all I knew was that I had an aggressive cancer.

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So, they actually were opposite on everything in [LOCATION]. They said, you need to be biopsied. Everything needs to be biopsied, down to your lymph nodes. So, they went in and surgically removed   I think three or four lymph nodes right away.   And there was a micro bit of a cancer in one of the lymph nodes. And they then discovered that that cancer that they found in the lymph node was a separate cancer from the one that they found in [LOCATION]. So, at that point, I was told that it was odd that I had cancer because I was so young, that it was probably not cancer. And I was also told that it was very odd that it would be two cancers, which it was.

 It was 7 and 1/2 months and I didn't make the appointment and oncology called me and was like, “You need to make an appointment.” Or they sent me an email or something. “You need to make an appointment. It's time for your follow-up. It's time for your follow-up.” And they were bugging me. And   when I called to make the appointment, I, all of a sudden, it just dawned on me. I was like, “Well, well I'm not really happy with the, my oncologist. Can I make an appointment with somebody else?” And she went, “Sure. If there’s a, I mean, if there's a breast specialist available, let me look.” Click, click, click, click. “Oh yeah, sure. So and so--how's that?” It was just, it was very--I was really super worried about it like I'd have to like break up or something. But all I had to do was schedule with somebody else. And it was an internal, like, duh. Duh, I have agency. Duh.

For one, I never wanted to be babied. I didn't like it that they were coddling me like I couldn't handle my own stuff, to my—my own business. I had to go in for a chemo meeting and I got scolded at the chemo meeting. "Where's your support person?" And I said, "my support person is my husband and he's working. And I'm a big enough girl I can handle this". And you know what, I didn't need to—even need to be there. Maybe they—that's their way. But they gave you a three-ring binder and were explaining the different things of chemo, and then you were supposed to watch the video, and you can't have sex, and if you do, protect yourself, blah blah. And it's all good information, but if you're going to give it to me in a three-ring binder, I can easily read it. I need to get back to work. You wasted a whole day when I can just read it. Just hand me the information. Don't treat me like a two-year-old. And I, but I felt very coddled. And maybe some people need that. But I didn't need that at that time because again, I'm thinking, I got to take off for this, I gotta do this, I gotta do this. I was, cancer was not going to be front line and center in my life. I'm sorry. I'm going to live. And my life is, and I got scolded again when we were talking about my work. "Oh no, you're not going to work that much," and I got ticked off, and I said, "Oh, yes I am. Just watch. You don't control me. I control myself." And I told her, too, I said, "I will, you're in charge of the treatment and I'm in charge of me. So you don't tell me how it's going to go." I mean, that's just wrong.

Or even the options that are presented for surgeries, of people even assuming that, you know--like, for example, I actually came up with an option that was not presented to me for breast surgery, the plastic surgery side of things because there are two breast surgeons, one was oncology, one was a plastic surgeon. So, I had a partial mastectomy. Basically, I lost about a third of the tissue. So things are going to be uneven. And I was presented with the option of, well, you can, like do nothing, of course, and leave things as is. You could have reconstructive surgery, basically like add to the breast that was having the tumor removed. You know, like. And, anyway, there are a few different versions of these things. And I was like, “well, why couldn't we just take away tissue from my right breast to even things out?” And that's where it's always a very personal decision. And I really appreciated that the surgeon was like you know, “whatever you decide is going to be the right choice.” And that felt like a really amazing answer to hear. But, yeah, he was kind of like, “yeah, we can try this.” And of course, there were some risks about that. That's where I've also have pressed for some solutions that are not necessarily the ones that are given to people always at risk of like losing sensitivity or things like that. But, I mean, that's the option that I went with. And it was not an option that was initially presented to me.

I feel that it's important as young women, screen ourselves. If something's not usual, push your doctor. You, you have to be your own advocate, and that's extremely important as well.

Yeah. I mean, this, did, did you run into a situation where you had to be an advocate in your, in your medical journey?

You know, I always pushed for additional, so for instance, you know, I went in. And what it was, I requested in [LOCATION]. I had imaging done. And then I said, “You know what, let's follow up with more imaging in [LOCATION].”  And then I also, when I just had my last mammogram and it came back unusual, they wanted to wait to do a follow-up MRI. And I said, “No, I can't wait. You know, I'm not going to wait three months or four months. Let's do it now, because you don't know if it's something.” I wanted to take care of it. I’m not, I don't want to sit around and wait. So, I pushed for it.  And it turned out that it was, you know, it was thankfully, it was nothing. But again, so I did push for it. But being knowledgeable and knowing what cancer you have and doing your own research. Then when you're talking to the doctors, you know what to expect. So, talking to a lot of my doctors, they're like, “You know a lot about this.” Yeah, absolutely. This is my body, and this is my journey. And I don't want somebody to be dictating what I'm supposed to do and me have no idea what I'm going through.   So, I've always been kind of my own advocate for it of just having the knowledge so that way I can make the best decisions that I'm comfortable with.

For instance, when I talk to other people at the meetings and I hear what they're saying and what they're asking their providers, that help me to know what to ask my provider. And that's helped me, as well. Because even though my provider is excellent, I have to kinda advocate for myself. And I said, don't you think it's time for me to have this test or that test, or don't you think we need to try this or that? And that has helped me. Because he wasn’t, you now, for instance, my PET scans. That's why I started having them more regularly. And that's when they started seeing the progression. And so, I'm on top of that because [organization] has helped me to advocate for myself when I go to the doctor and be more aggressive in being a part of my   care.   and so, I am forever indebted to organizations like [organization].

You got to keep asking questions. And don't, doctors are wonderful. But they're trained to tell you this, this, this, and this. Ask questions. Write it down. And take somebody with you because you're all stirred up. And you're going to forget, or you misunderstood. You misunderstood. I know I have because I've had my daughter or [NAME]. I've had my daughter or somebody with me. And they said, “No. This isn't how it went. It was like this.” And then you have to stop and think a little bit because you're scared when you go in there by doctors.

I took this course called Project Lead, where I spent a week out in San Diego with the National Breast Cancer Coalition. And it was an amazing time. You know, I'm not even a closet, you know, research, I love that. I just love that part of research and learning. And I was still in the throes of, you know, my lupus and, you know, getting the surgery for my thyroid. And so, I'm out there, and I'm with women that have, you know, survived all these years, and so, I mean, you know that organization. It's really like the SWAT team in terms of the cancer community. And you're there with incredible researchers, doctors, and every day is a new panel, and all of this. And the advocacy at the highest level and these amazing women that you meet that are really ferocious fighters. And are living with metastatic breast cancer.

And I actually had a friend—I mean, lots of really great friends—but one friend in particular who was like, “are you bringing an advocate with you?” And I was like, “What?” It didn't even occur to me. And just to even have people in my life just say, “hey, this might be a helpful thing.” So, I started bringing friends with me to my appointments. I thought that was a great suggestion, because it is true. And some doctors will actually outright tell you, “You're not going to remember everything that we tell you, especially if you are going through something that's traumatic or jarring.” And so, bring support.