You Are Your Best Advocate

[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.com.

From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

In any healthcare situation, it is important to be your own best advocate. No one knows more about your body than you do. Not your partner, not your family, not even your doctor. So when you talk with medical professionals about your health, remember that you have important information they can use. You know about changes in your body and about any problems you are having. You know what your breasts normally look and feel like. Trust your own experience and talk honestly about it with your doctor to make sure you get the care you deserve. Demand more tests when you know something isn’t quite right, understand your disease, be involved in medical care decisions, ask questions and reach out for support. Today’s guest did just that and is here to share the importance that standing up and being heard has played in her breast cancer journey. Mary Ann, welcome to the show!

[00:01:23] Maryann Mitchell Holand: Thanks Adam, it’s nice to be here.

[00:01:26] Adam Walker: Well, I’m, I’m excited to talk to you because we have talked a lot on this show about being your own advocate and I understand that your story’s pretty, pretty unique and compelling in that area. So, so we’re talking about advocating for yourself today and I, and, and I know that you’ve done that from the very beginning. So why don’t you walk us through your diagnosis? What was that experience like for you?

[00:01:48] Maryann Mitchell Holand: Okay, well, I first noticed a lump back in 2010 um, and I just kind of ignored it and then, you know, then I should go get it checked out. So I went in, it was July and my regular doctor was off. Female practice and so I saw one of her colleagues and she was very dismissive and said it was nothing.

She did the mammogram. Nothing showed up. So I said, okay, fine, clear, clean bill of health. And so I did delay and I waited two years because I started to feel tired and I, all I could say was this lump was like the size of a peanut M&M and I just felt like it was getting angry. That where before it was just there and now I’d let me know it was there.

So I just went to go get a second opinion. So I went to NYU um, in New York City and went to Deborah Axelrod and she examined it and she said, Well, I really don’t think it’s anything either. And she goes, But if you want, you can go uh, to my radiologist uh, Barry Bernstein and he can, um, uh, see what he says. So I went to him, he did a ultrasound and he said, I don’t think it’s anything either.

And then the next morning he called me and said, you know what? Something’s bothering me. No hurt, uh, no harm in biopsying the lump. I said, Okay, so he did and uh, had a hematoma and sure enough, it was breast cancer. And then he said, let’s, let’s, let’s do an MRI and he found another spot. And I said, well, what about this other area that was close to my chest bone? And he said, I don’t really think that’s the same thing, but he goes, But you know what so far you’re batting a hundred and I was right. It had spread.

[00:03:13] Adam Walker: Wow. So what was the time from kind of your first inkling that there’s something going on to finding out that you’re, you’ve got a diagnosis? Like what was that timeframe?

[00:03:23] Maryann Mitchell Holand: Pretty quickly. It was within six weeks.

[00:03:26] Adam Walker: Um, okay. Be because you weren’t willing to just wait, wait. Right. Is that right?

[00:03:31] Maryann Mitchell Holand: Yes. And my, my, uh, breast surgeon and she doesn’t like the narrative, she goes, we need to change it. And I said, no, it’s what you said. You told me you didn’t think it was anything either. And I said, but I was determined this time. I knew something was not correct.

[00:03:41] Adam Walker: Mm-hmm

[00:03:42] Maryann Mitchell Holand: And I thought I’m not taking no for an answer. So again.

[00:03:45] Adam Walker: I like that.

[00:03:46] Maryann Mitchell Holand: Yeah.

[00:03:46] Adam Walker: Don’t take no for an answer. So, so then I’m curious, you know, uh, and obviously you’re still in touch with these doctors. I mean, how do you feel towards these doctors that, you know, once you’ve found out that you were right and they were, were not. Like, what, what are your feelings like towards them?

[00:03:59] Maryann Mitchell Holand: Well, the initial doctors back in 2010, I have nothing to do with them because dismissiveness and also they did not um, advocate for me. Um, they, they missed. And I, I think back years ago when my, this had to be like 15 years prior, there was a doctor in Manhattan, Gene Petrick at Sloan Kettering, and I had that lump in the same breast and she took it out and said, you never leave it there.

And unfortunately she got hit by an off duty uh, ambulance and was killed. She was renowned in New York City. She took care of Cuomo, many, many celebrity clients that she had. And I thought if she’d been alive, I never would’ve procrastinated. I would’ve gone right back to her because that rang in my head then, you know, after the fact that I, I shouldn’t have waited two years to get that second opinion.

[00:04:41] Adam Walker: Right.

[00:04:41] Maryann Mitchell Holand: Cause it would’ve been, it would’ve been probably stage zero stage one. Instead it was two B. Because I waited two B.

[00:04:46] Adam Walker: Okay. So, okay. So that, so I just wanna make sure I’ve got the timeline. Right. So then, so when you first had the inkling, you went to the first doctor, and then it was two years and six weeks later that you got. Okay. Okay. Gotcha. All right.

[00:04:57] Maryann Mitchell Holand: Yeah. So it was March of 2012 that I got the diagnosis and my surgery was April 19th.

[00:05:02] Adam Walker: Okay. Got it. All right. So, all right. Yeah. So speaking of the surgery. Like, so you got the diagnosis, walk us through what happened next? What was the treatment like?

[00:05:11] Maryann Mitchell Holand: Um, I was scheduled for a bilateral mastectomy um, and she told me that they would take the sentinel uh, lymph node just to make sure that I hadn’t gone to the lymph nodes.

Um, so, um, I know it didn’t, um, I dunno not to get too much detail, but women like to hear these stories because they don’t, they’re not aware there’s called nipple sparing um, bilateral mastectomy that if. The measurement from the cancer is okay, then you get to keep that instead of having it, you know, just a radical bilateral mastectomy.

So ended up being that I was on the, the plus side of that and um, had the bilateral mastectomy, um, went home the next day. They called me a unicorn because I didn’t take any pain medication. Um, and then I had the reconstruction in July and then I also had to have an oophorectomy because I had uterine fibroid that’s attached to my bladder and so I was a hundred percent estrogen and progesterone positive. So they wanted to get all the hormones outta my body that they possibly could. So that’s why I had to add the other surgeries after that.

[00:06:08] Adam Walker: Okay. So, all right. So you advocated for yourself and, and sort of really aggressively had to advocate yourself in order to get the diagnosis. I’m curious. Did you have to advocate your for yourself along the way during surgery or during treatment? Or were you a little more listened to by that point?

[00:06:27] Maryann Mitchell Holand: Well, ironically, the day of the surgery we had had a discussion it’s called NDA. Um, you know, if you, if you get the, the nipples it’s nipple sparing, NSB, nipple, sparing, um, surgery.

So both a plastic surgeon came in and then after that, the breast surgeon came in and I said, Okay, so we’re taking the nipples off. Right? And I said, What? You told me, you know, nipple sparing, if you did the, the measurement. Like, oh, okay. But if, if I hadn’t spoken up again, this tells you if you’re not paying attention, um, these things happen. And these are renowned surgeons in Manhattan.

[00:07:00] Adam Walker: Wow. I mean, it, it just shows like you really gotta know your details and be on top of those details and like almost just confirming all along the way that what you’re there for is what you’re getting. Right?

[00:07:11] Maryann Mitchell Holand: Absolutely.

[00:07:13] Adam Walker: Okay.

[00:07:13] Maryann Mitchell Holand: So then post-surgery I didn’t, um, since it, there wasn’t any lymph node involvement, I did not have to have chemotherapy. I, I went on Tamoxifen for five years. Um, and then there’s a, a debate now, whether it should be extended to 10 years, but my oncologist who is Ruth Orette, she’s pretty well known to Manhattan, also. She said, you know what? It would probably be more harm than good for you to have chemo.

She said, I don’t think you need it, because you’re right there. You miss being in the lower register, you’re in the, just the bottom rung of the medium oncotype B X results. So I was relieved um, cause I really didn’t wanna have chemo. I’ve known people who have. Um, Robin Roberts is a case in point. She, she went to my, my, um, oncologist and she got that second buried cancer as a result of the chemo.

[00:07:57] Adam Walker: Mm wow. So, okay. So you mentioned not having to have pain meds after one of your, one of your surger,

[00:08:04] Maryann Mitchell Holand: All my surgery.

[00:08:05] Adam Walker: So obviously you’re, you’re a very tough person.

[00:08:08] Maryann Mitchell Holand: Yes.

[00:08:08] Adam Walker: You’re a very strong person. I, I like that. And, and so I recognize that you’re very strong. But we always. We all need support too. So I wonder if you can tell us, what was your support system like through the experience? Who did you rely on the most and what did that mean to you?

[00:08:24] Maryann Mitchell Holand: The most was my son. His name is Sean Moran. He’s a rockstar. He’s a father of three. But he went to me, went with major all my doctor’s appointments. He had his list of list of questions ready. My husband went also. But he’s one of those people, there were some people that don’t handle bad news and health issues and they just kind of go inward. So I was thankful that he was there. He asked all the questions. He was at all the appointments. He was at the surgeries and he was my advocate.

And then later after the fact, he shared that he was going to St. Pat’s every day to uh, 12 o’clock noon mass. Um, and he’s not, you know, really religious. So that said a lot to me that, you know, he was really impacted at that point that he, you know, going to a higher source for help.

[00:09:04] Adam Walker: Yeah, that’s good. Now, and I’m curious, you said he asked a lot of questions. I assume, was he also taking notes? Was he, was he kinda your note taker as well?

[00:09:10] Maryann Mitchell Holand: Oh yeah. He had his notes all written out and, and he’s a very organized person anyway. He’s, I laugh because he’s a Virgo and, and they’re very analytical and organized and you know, everything’s in it’s place.

[00:09:22] Adam Walker: All right.

[00:09:22] Maryann Mitchell Holand: Very, very bright. So I really, I appreciated that. He was my rock and then he also sent out emails to everybody. He had a whole blast going to all the names on the list to like, keep everybody updated. What was going on? What were the diagnosis when the next surgery was? And people who had never met him, they said, Oh my gosh, your son’s incredible. And I said, yeah, I think so. I know.

[00:09:40] Adam Walker: That’s fantastic. I mean, like, and that’s so important to have that, right. I mean, we’ve talked on the show, there’s a couple of themes that come up frequently. One is the need to advocate for yourself is just so important. Because like we said, in the intro, like you’ve said, like, you know, your body so much better than everybody else. The second thing that’s come up many times in this show is making sure when you’re in appointments, you have someone there with you.

[00:10:01] Maryann Mitchell Holand: Yes.

[00:10:01] Adam Walker: That’s taking notes because otherwise it’s just like white noise to the patient. Like it, you just can’t comp you can’t, mentally comprehend it all. It’s just too much. Right. And then I think the third thing that I heard you say just now, that I don’t know that I’ve heard anybody say before but I love, is kinda having someone that’s the point person for your com it’s like, like your own communications person.

[00:10:21] Maryann Mitchell Holand: Yes.

[00:10:21] Adam Walker: To let everybody else know, so they’re not bugging you. Like, can you talk a little more about that? because I, I think that’s kind of brilliant.

[00:10:27] Maryann Mitchell Holand: Yeah, because you don’t have the energy to deal with it all yourself. You’re focused on getting through the surgeries and I know I had three face in me and um, and I know I’m strong. I had two, two C-sections years ago with my, when I had my two children. Um, but I just, I just didn’t wanna be answering all these questions. And some people sometimes they don’t realize it, but they might be answering insensitive questions or just not in a way that you feel comfortable answering. And John’s just a, was a great point person that, um, he responded to anybody’s questions, you know, follow through, follow up.

Um, and that was nice just to have that taken off. And also I felt like I was being cared for in that way. That, that was one less thing that I had to worry about that was taken off my shoulders. And he was in charge of that. I mean.

[00:11:06] Adam Walker: I love that’s so smart. That’s so smart to take that communication need off of your shoulders and handle that on your behalf. That’s just brilliant honestly. So, uh, so Maryann, this has been great. Last question for you. Do you have any advice for our listeners about how to follow their intuition and speak up and why that’s so important..

[00:11:27] Maryann Mitchell Holand: Okay. I just. Um, lesson learned if they listened to this podcast, that I listened to a female GYN who I, you know, felt like, you know, especially because she was female, she would be more in tune and more um, proactive. Especially because this lump, like I said, it was the size of a peanut M&M, you could feel it. And again, she was dismissive and just, you know, kind of like, why couldn’t you wait till next week when your own doctor’s in. And I’m like, wow.

So that’s a lesson learned that just because one doctor is dismissive and something’s there, that shouldn’t be there, get a second opinion, get a third, if you have to, but you know your body and don’t let anybody, you know, and diminish your, your concerns, um, and get the answers. Just keep going till you feel like someone’s really listening to you. Otherwise you wonder, I just wonder how many people were in my shoes, Adam, and didn’t go get a second opinion and waited and then guess what? Too late.

[00:12:24] Adam Walker: Yeah. Yeah, that’s right. That that’s right. If you think something’s wrong, if you have that feeling in your innermost being, um, go get that second opinion, it can’t hurt. It can’t hurt.

[00:12:35] Maryann Mitchell Holand: No. And you know what? We are all gifted with our own gut intuition. If we listen to it, mm-hmm and you can get out of our heads, get outta our, you know, our brains and think, okay, listen to what your body’s telling you.

[00:12:45] Adam Walker: That’s right. Absolutely.

[00:12:46] Maryann Mitchell Holand: Absolutely trust it.

[00:12:48] Adam Walker: Listen to yourself, trust your instincts and, uh, and go get that second opinion if you feel like you need it. Well, Maryann, thank you for sharing your story with us. Thank you for being vulnerable and strong and, uh, and an inspiration. And, uh, we just enjoyed having you on the show today.

[00:13:02] Maryann Mitchell Holand: Well, thank you, Adam. And I appreciate, you know, you’re getting message out to everybody and to women that need to maybe a support system that they don’t have on hand.

[00:13:12] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn more at Amgen.com.

Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.