[00:00:00] Adam Walker: 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.
Most people diagnosed with breast cancer will never have a breast cancer recurrence. However, everyone who’s had breast cancer is at risk of recurrence. Today’s guest is Nikki Panico, the Executive Director of Susan G. Komen Wisconsin. Nikki is, unfortunately, no stranger to breast cancer. Her mother and aunt both died from the disease 14 years ago, the same year that Nikki was diagnosed for the first time.
Now she’s dealing with a second diagnosis despite undergoing a double mastectomy and five years of hormone treatment and having no evidence of disease for over a decade. Nikki’s here today to share the physical symptom that led her back to her doctor and how she’s feeling amidst the new fight. Nikki, it’s good to see you again.
Welcome to the show.
[00:00:53] Nikki Panico: Hi, Adam. Great to see you, too.
[00:00:56] Adam Walker: Well, it’s been a while, so I’m glad to have you back. It’s always nice to talk to old friends and get updates, even if those updates aren’t what we hoped for. But let’s hear more about your story. So let me just frame this up. We’ve had you on the show before.
I think we talked about your story then, but for our listeners that might not have heard that previous episode, I’d love for you to do a quick recap of your breast cancer story, and then talk to me about your family history and your first diagnosis.
[00:01:26] Nikki Panico: Sure. Well, like you said in your intro, I was diagnosed a little over 14 years ago.
My mom, was, she battled breast cancer and after five years was, I’ll try not to make this too confusing, okay?
[00:01:46] Adam Walker: Sure.
[00:01:47] Nikki Panico: I’ll just say, my mom and her sister, my aunt, my mom and her sister, they died within a month of each other. Both from stage four metastatic breast cancer, and it was devastating. So as my sisters and I were
dealing with the loss of both of them, and then also caring for our grandparents because they lost their only two children to breast cancer within a month of each other.
[00:02:14] Adam Walker: Oh, that’s terrible.
[00:02:15] Nikki Panico: I know. Crazy. It’s just so crazy. I went for my annual mammogram, which I was getting at starting at the age of 35 because of my family history at age 39, the same year that they had passed. I was diagnosed from my annual mammogram. I underwent a full double mastectomy and chemotherapy, and then also hormonal therapy.
So after my diagnosis, I thought to myself, “Oh, I have to get involved. I have to get involved in this cause because it didn’t just take my mom and my aunt, but now it’s coming for me. And what that means is, Oh my gosh, it could come for my nieces.”
[00:02:57] Adam Walker: Yeah.
[00:02:58] Nikki Panico: No, I thought, how do I get involved? And my family, my mom and my sisters and I did the race for the cure in Philadelphia, where we’re all from for five years. And so I knew of Susan G Komen. I ended up moving to Wisconsin after my chemotherapy when I was done treatment. I had done the Susan G Komen three day for the cure where you walked 60 miles in three days. I don’t know what made me sign up for that.
[00:03:26] Adam Walker: Love it.
[00:03:27] Nikki Panico: Maybe that’s where I can help.
[00:03:29] Adam Walker: Yeah.
[00:03:30] Nikki Panico: And now here I am. 14 years later and I’ve been with the organization as first as a volunteer and now as an employee for over a decade because I so believe in Susan G Komen’s work.
[00:03:44] Adam Walker: Yeah.
[00:03:45] Nikki Panico: And what they do.
[00:03:46] Adam Walker: Love that. I love that. And so, you’re deeply involved. You’re, 14 years later and like I mentioned in the intro, you’ve been diagnosed with breast cancer again. How did you know something was going on?
[00:03:58] Nikki Panico: Yeah, that’s a really good great question. The last time I was on your show we talked about survivorship and how to you stay healthy and exercise and eat, right? So I was following my own advice and last summer I joined a 14 week Triathlon training program to do a triathlon.
And coincidentally, this triathlon training program was only women and women cancer survivors, a lot of breast cancer survivors, but, it didn’t stop there. There was numerous different types of cancer. So here I am riding a bike for the first time since I’ve been like 10 and swimming for the first time. Since probably before 10 because I don’t know when I got in the pool.
[00:04:51] Nikki Panico: But what started to happen was where your sports bra right under your breast, where there’s the thick band to a sports bra is when I started to see a rash and it was right on my mastectomy scar, and I really didn’t think anything of it because I thought, I’m sweating.
I’m working out more than I ever have in my entire life because I’ve never played a sport, I’ve never been in any competitive event ever. So I figured, “Oh, my body doesn’t know what to do. I’ve never worked out so much and I’m sweating.”
And so I thought it was that kind of rash just from friction and sweat. And then as the weeks went on, this rash didn’t clear up. So I just called my, physician general practitioner and sai”d, Oh, I’m getting this yucky rash. And it’s not clearing up.” So they ordered me a cream and I thought, “Oh, it’ll clear up.”
And as the more of the weeks went on, there would be some discharge, like, not to be gross because this grosses me out. But if you have a scab and you pulled the scab and like what it would look like and oozing, disgusting.
But that’s what I would see. And then I blamed it on “Well, I’ve never swam in a lake before. So this is because I’m allergic to the lake.” I had all these things in my mind and then the pain, and, there’s just something in the back of my head that just thought, “Oh, I don’t think this is normal.”
I did the triathlon and, I said, I need, “I think I need to show my doctor.” And I really thought it was an infection maybe of the scar from my mastectomy.
So this is how it presented itself after the triathlon, I went to see actually my plastic surgeon who, followed me after my mastectomy. As I say, it was right on the scar line because I thought it was, again, infected scar tissue.
[00:07:00] Adam Walker: Sure.
[00:07:01] Nikki Panico: And she looked at it and she, and it was funny because when I stopped working out, it really started to clear up.
[00:07:07] Adam Walker: Okay. Okay.
[00:07:08] Nikki Panico: And I was like, Oh, maybe it’s, nothing to worry about. It really was. I was exercising too hard in my body did not like that. I’m coming up with a lot of excuses. Anyway, she removed it because she thought, “really, let’s just remove it so it doesn’t bother you in the future.” So it wasn’t like it was a biopsy. It was just, an inpatient. It was just right in the physician’s office.
She cut it out and said, “Oh, the lab just to make sure it’s nothing? And she said, Oh yeah, we sent it to Dermatology and they just look at it.” Well, a week later is when the call came that, this is breast cancer.
[00:07:50] Adam Walker: Wow. And this is so important for us to talk about because it didn’t present you know, like, we always imagine is going to present like a lump or whatever else, right?
But it didn’t present like that. It presented in a different way because there’s other sort of physical signs. And what are the signs, in your mind for women to look out for that might be other than a lump?
[00:08:12] Nikki Panico: That’s a really great question, Adam. And I’m uber aware of these physical signs, and I love to tell women and men because men can find breast cancer to on themselves or significant others.
But as I mentioned, my aunt had passed from breast cancer. We’d be sitting around Sunday dinner and she’d talk about her inverted nipple, like her nipple going in the inside of her body and we’d all say, I don’t know what that is, see your doctor. And she’s “Oh, it’s just menopause.” No, none of us know this table of women that were eating dinner that is a physical sign of breast cancer.
So we know of lump, a hard knot, but swelling, warmth, redness, and darkening of the breast. That’s a physical sign, a change in the size or shape. Note, you do have two different size breasts.
But this is if you notice something new and different. So we always say, no, you’re normal. Look in the mirror when you’re washing yourself and you’re putting lotion. No, you’re normal. So if there’s a change, you recognize it. So dimpling or puckering of the skin, like if you see people and they smile, they have a dimple on their cheek. You could get a dimple on your breast. Itchy, scaly, kind of like mine. There was a sore, there was a rash. It was scaly, as I said, like with my aunt. The pulling of your nipple or other parts of the breast nipple discharge or, again, this was under my breast, so it was discharging, and new pain.
And we’re talking if these don’t go away and these persist more than say two weeks, that’s when you want to, really some medical attention.
[00:10:04] Adam Walker: Yeah. And let’s talk about that, right? So I think some women might be nervous, or I should say people, cause it’s not just women that get breast cancer.
Some people might be to call their doctor. What if it’s nothing or whatever else? Can you talk about why it’s important to call your doctor and what might be stopping someone from calling their doctor about this?
[00:10:21] Nikki Panico: And, I was right there because I didn’t call my doctor after two weeks.
It was more like six weeks because, my own example is, I thought, “Oh, I’m doing something new with my body. So my body just doesn’t know how to react to me actually exercising consistently. We’re going, into open water to swim.” Well, what if I’m wrong and I don’t want to waste anyone’s time and I have deductibles.
I don’t want to pay for an out of pocket expense to my deductible if I don’t need to. So those are some of the things that at least were swimming in my head about why I shouldn’t see medical attention. But this really kept persisting and I knew in my gut that this wasn’t right. So I say to women out there, really trust your gut because if something doesn’t feel right or seem right, it probably isn’t.
[00:11:26] Adam Walker: Yeah, that’s right. And that’s so important. We’ve heard that so many times on the show; know your body, know your normal.
And if you feel something’s off, you can trust that feeling to know yourself, to go and seek from your medical provider. So in that conversation, you mentioned fear.
Obviously there’s always a fear of recurrence. I know scan anxiety is really a fear; you had gone quite a long time after your initial diagnosis. Did that sort of scan anxiety, that fear of recurrence, did that go down for you over time?
[00:11:58] Nikki Panico: For me and everybody is really different, but for me, Oh, early on, if you felt a pain, a headache, anything you thought immediately, “Oh my gosh, it’s come back. Oh my gosh. it, it metastasizes spread to my brain.” I have a migraine over time, truly for me, I can speak for me, those triggers weren’t as frequent, especially, when you get to the 10 year mark, you’re just like, okay, I don’t need to worry.
[00:12:31] Adam Walker: Yeah. It’s old hat. It’s old hat at that point.
[00:12:34] Nikki Panico: I’m, and certainly after a double mastectomy, you really don’t think of reoccurrence. And I have so many people, especially my sisters were like, we don’t understand if you had a double mastectomy. How did it return? Well, again, important information that there is removing your breast is not like removing an organ.
It’s okay, we got your liver, right?
[00:12:59] Adam Walker: Yeah, that’s right.
[00:13:00] Nikki Panico: We got the kidney. We got it because it isn’t defined like that, like an organ. And there’s breast tissue under your arm, up by your clavicle, underneath your breast.
Yeah, there’s a lot of breast tissue and there’s not 100 percent guarantee.
[00:13:20] Adam Walker: That’s right. And I think that’s an important delineation to like the way you just said it is, it’s probably the clearest way I’ve heard it said, right? It’s not like taking out an organ and you got the whole thing, that’s just not, it’s not that simple. It’s not that straightforward, right?
[00:13:34] Nikki Panico: No. And I don’t want to scare- I don’t want to scare women who have had a double mastectomy. I really don’t want to place it’s fear because the statistics are extremely low of a reoccurrence around your breast.
[00:13:51] Adam Walker: Yeah. But it’s still good to be aware.
[00:13:53] Nikki Panico: It is. Absolutely. I want women to know that it is a possibility, right? And more than anything, the takeaway is to know you’re normal even after a double mastectomy. And when you notice something different; and not just around your breast, but in other parts of your body, where the breast cancer may in fact, spread. So I know there’s, I know many women might think, like we said earlier, “Oh, I don’t want to go back to the doctor. I don’t want to waste anyone’s time. It’s probably nothing. It’s probably a false alarm.” No, it’s okay. It’s okay to get it checked out. I promise you, your doctor would rather you get it checked out and know, Oh, all clear. No, it’s just your nerves. Actually your nerves grow back. They regenerate. Years, later, you could feel a stinging pain in your breast or under your arm. And it could be nerves regenerating. But wouldn’t you rather know that’s the case? Versus a reoccurrence. So that’s –
[00:15:00] Adam Walker: Yeah, that’s right. Better to get it checked out. That’s for sure. So bring us up to today.
I mentioned, we peripherally mentioned that you had a recurrence. So tell us about that. How are you doing with that? Bring us up to date.
[00:15:14] Nikki Panico: Okay, well, I’ve certainly had lots of tests after the reoccurrence just to really determine, well, how, advanced is this?
And is there more than one tumor? So they determined actually in December that I needed a whole nother mastectomy on my left side.
So it was, yeah, a second mastectomy, so to speak, because they saw a lot of things that were suspicious and rather than biopsying all these areas around the outside of the actual cup of the breast, there wasn’t anything there because it wasn’t breast tissue, but all around the surrounding area, they just decided to take all of the tissue around the chest wall, and under the arm and under the breast and just scraped it all out. So I had some recovery there. I did have radiation that when I was first diagnosed, I had IV chemo, but no radiation. And so it was a really good thing. Actually, you can’t radiate the same spot twice. So since I didn’t have radiation the first time I had radiation, I feel so hopeful.
I have an excellent team here in Milwaukee, Wisconsin, as of right now, I just started, I think six weeks ago, it’s been an oral immunotherapy, sometimes called an oral chemotherapy that I take and I’ll be on for quite some time, probably like two years. And I also take, we know, and people who are avid
listeners probably have learned there’s different types of breast cancer, the most common being fed by estrogen and that’s the kind I had. That’s the kind I have now. And so I had a full hysterectomy so that my ovaries are not creating any estrogen. And then I take another drug, which I’ll take for the rest of my life that suppresses, the making of any other estrogen that your body normally needs. So belly fat and the liver automatically, they make estrogen, even if your ovaries aren’t working, there’s other parts of your body. And this pill that I take stops any production.
[00:17:45] Adam Walker: Okay. Okay. That’s really interesting. I don’t know that I realized that was even possible. That’s amazing.
So talk about, you’re in a second round, right? Of cancer fight. How are you? How are you feeling with that? How are you coping with that?
[00:18:00] Nikki Panico: No, I think I really think like anyone diagnosed with a cancer with breast cancer, it is a roller coaster of emotion. Boy, I never in a million years thought I’d hear it for a second time.
So it was quite heartbreaking. I have one son. He was three years old when I was first diagnosed. now at 17, it brought, just so many a whole different way of sharing the experiences of the diagnosis of treatment with a much older child. But I have to say, maybe because I’m so close to this organization that has done so much for women, for families around this diagnosis, I feel so hopeful about my future because I see what we’ve been able to do in advocacy, in research, in patient care. So I really thought I was passionate before working with this organization and raising funds and advocating. I didn’t even think I could be renewed anymore, but, I have been, and it has strengthened my resolve to not give up in finding the cures, in making sure everyone has access to the care and the treatments.
Because I have to say in my own experience, I was denied a certain radiation from insurance that I had to fight and the oral drug that I needed to take was also denied and I had to fight for that. We shouldn’t have those struggles.
[00:19:44] Adam Walker: That’s right. That’s right. We shouldn’t.
I love that you’re fighting. I love that you’re renewed. Your passion for fighting this disease, it’s inspiring, it’s always, Nikki, it’s always great to talk to you. I just, I really appreciate you being here to share your story. Do you have any final thoughts you’d like to share with the audience?
[00:20:03] Nikki Panico: Adam, what I’d love to leave your listeners with, again, trust your gut, be your own advocate. Also, I know health insurance is financially taxing, but know there are resources available to help you get screened. There’s tools available to help you estimate your risk of breast cancer, and Susan G Komen is an excellent resource for all of those things.
[00:20:33] Adam Walker: That’s right. That’s why we do this. That’s why we do this. Well, Nikki, thank you for sharing an update to your story, for sharing the new part of your story. Thank you for your renewed commitment to this cause and, just for being here today.
[00:20:49] Nikki Panico: Thanks Adam. Thank you so much. Thanks for your support and your love.
I really appreciate you and all you do to share your listeners, all everything about this disease.
[00:21:01] Adam Walker: Glad to be here. Glad to be here.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.