"Get your mammogram!"

Alecia Jones, BSN, RN, OCN, is a nurse navigator, a relatively new role within cancer diagnostic and treatment facilities. As a nurse navigator, Alecia is a guide and advocate for women through their cancer journeys. She schedules appointments, coordinates with specialists, and answers questions and concerns along the way. As a liaison between the patient and the cancer treatment team of doctors, surgeons, and oncologists, she (and other nurse navigators) keeps the process on track as well as assuring that women and their families understand choices, implications, and needs along the way. 

Dr. Barb: Today’s guest is a colleague at Holland Hospital’s High Risk Breast Clinic, where I spend some of my clinical time seeing patients as well. Alecia Jones is a Nurse Navigator. She works with women from a diagnosis of breast cancer, through treatment, and beyond that. She’s their advocate. She makes sure they understand what decisions need to be made and what resources are available along the way. Alecia, welcome! Thanks for joining me!

Alecia: Thank you, I’m happy to be here.

Dr. Barb: I know that you strongly encourage women to be screened regularly for breast cancer, so let’s talk about just the basic recommendations around breast cancer screening and also what you’ve observed in women.

Alecia: I think the one thing to remember is how often breast cancer strikes. It’s one in eight women are affected by breast cancer in their lifetime. We have a very simple tool to screen for breast cancer, and all women starting at the age of 40, and yearly after that, should get mammograms. Some women will call me and say, “Well, I’m 70. Do I still need a mammogram?” The recommendation is as long as you have ten years’ life expectancy in you, you should still be getting mammograms. It’s very very important, and the earlier we catch a breast cancer, the more curable it is. It’s just very important.

Dr. Barb: Just to chime in on that, I recently saw a patient who was 85, and my role in this is somewhat peripheral, but I was talking with her about the importance of genetic testing. She has daughters and granddaughters. So even though her age of diagnosis at 85, that outcome wasn’t necessarily going to impact her and her treatment plan, the impact was for what it meant for her children and grandchildren. And in her case, it was a second diagnosis of breast cancer. But to your point, had she stopped screening and wouldn’t have known that, we wouldn’t have identified that added risk that, again, might put other family members at risk.

Alecia: Yes! Exactly. Yup, absolutely.

Dr. Barb: Oftentimes in these discussions, we have a recurring theme of self care. I see mammograms, screening mammograms as one aspect of self care. Could you speak into that? Would you agree with that? How do you talk to women about that?

Alecia: Absolutely [laughs]. I think as women—and this is a little bit of stereotyping, but how does it become a stereotype, right? [laughs] It’s pretty true—we take so much time taking care of everybody else—our children, our parents, our spouses or partners, the dog [laughs], everybody and everything—the house, the laundry, the dishes, the groceries, and we absolutely need to practice more self care, and that does absolutely include taking a half an hour once a year to get a mammogram. It’s not hard to do, some women say that they are uncomfortable, but you know, we’ve endured much worse [laughs]. So, it absolutely is an important part of self care. Absolutely.

Dr. Barb: As you mentioned, the statistics suggest that one in eight women will receive a diagnosis of breast cancer through their lifetime. For those women who get that diagnosis, give us an idea of what that woman can expect as she navigates through that news and beyond.

Alecia: Of course, with the initial diagnosis, there’s a lot of anxiety and fear. That’s kind of where I try and step in, right after that diagnosis is given to reassure them that yes, there’s going to be some treatment that needs to be done, but they are going to be okay and they are going to get through it.

All breast cancers are different, so oftentimes women will say, “Well my neighbor had this treatment. Why don’t I have that treatment?” Well, every breast cancer is a little different, so what your neighbor or your relative or your best friend had isn’t necessarily what you’re going to have. Most breast cancer will involve some type of surgery, plus or minus radiation treatments to the breast or the chest, maybe (again plus or minus) chemotherapy, and then possibly some hormonal therapy or endocrine therapy. But it does look different for everybody, and even the order in which those treatments occur can be different from person to person.

That’s where I come in, just to make sure things are moving along the way they need to be moving along, and appointments are happening when they need to happen; things are getting taken care of.

Dr. Barb: So are you interacting with some of the providers on behalf of the patient at times to help understand so you can be that voice with healthy advice?

Alecia: Yes. Absolutely. For most women the first specialist they meet is the surgeon. I will almost always attend that initial meeting with the surgeon and the patient and family members or friends whoever they bring with them to that appointment. That way I know everything the surgeon has told them, because they’re hearing maybe 30 percent of the conversation. So later when they call with questions I can say, “Well, the surgeon said this or that.”

Then I have contacts on a regular basis with the radiation and medical oncology groups, and I meet every other week with the nurses over at the chemotherapy office to discuss patients to make sure everybody’s on the same page and treatments going well. So lots of team communication. That’s really nice.

Dr. Barb: Typically, how long do you continue to have involvement for that woman? Is there any typical scenario?

Alecia: Yeah, typically most of my involvement is up front, through surgery. Once they complete treatment, again, depending on what that looks like, whether it includes chemotherapy and radiation or just radiation. Then kind of towards the end of treatment I start to back off a little bit. I’m always available. You know, when they come back for future mammograms, there’s always a little anxiety, and sometimes I’ll get a call saying “Hey, I’m coming in tomorrow for my mammogram. Can you call me as soon as the results are available.” So I continue to have interaction with the women, but kind of officially, I bow out once their treatment is completed.

Dr. Barb: When you’re talking with women and maybe somebody from their family or another support person, how do you advise they navigate this emotionally? Do you have any insights to helping women understand in moving through this that has been successful? Even for those of us who have maybe tried to be the friend or support of someone we know is going through it. Is there any advice you could give to best be that support person as well?

Alecia: Absolutely. I think as the patient, women, again as I mentioned, are so used to taking care of everybody else, but it’s very hard for us to let others care of us. It’s okay to let people help you provide some meals, help you with your laundry, things like that. Women just think, “No, I’m fine. I’m fine. I’m fine.” It’s okay to let people in and to let them help you. On the other hand, sometimes you have a lot of people coming forward, and it can get pretty overwhelming. That’s often where I’ll pull in the partner to say, “Okay, you’re kind of the gatekeeper here.” Lots of people will call and text and stop over to offer their love and support, and all of that’s wonderful. Sometimes it’s a bit overwhelming and so I rely on that other family member to kind of say, “You know what? So-and-so is resting right now and isn’t really up for visitors.” And it’s okay to send people away.

One thing I hear a lot from women about friends and family once they are diagnosed with something like this is oftentimes the people who are closest to them tend to back away, and they are not there. There are others that may be normally just on the periphery of your life, and when they hear about this they step up and they’re the ones that really help. I don’t know if it’s just that we struggle just kind of facing our own mortality and we’re fearful for our friend or our family member. We don’t know what to say. That’s hard for women. They say, “Yeah, my best friend of mine, I thought she’d be there to help me, but she’s just kind of disappeared.” And that happens a lot.  

I think what you can do, I had one woman say, “People often say to me, ‘let me know if there’s something I can do.’” And she said, “What would be better is, ‘hey, I’m going to come over and I’m going to do this for you.” “I’m going to come and do your laundry for you this weekend,” or “I’m going to come and rake your leaves tonight.” Be very specific about what you are going to help with rather than leaving it open ended, because oftentimes the patient isn’t going to call you and say, “Hey, you know what would help?” Just being there—laughing, have a movie night, you know watch something funny. Go out for coffee. Give lots of hugs [laughs]. It’s just important to be there.

Dr. Barb: Yeah, that is an interesting phenomena of interaction. And I think it does speak into, as you mentioned, some of our own self fears of not knowing quite how to be that friend at that time.

Alecia: Absolutely! Yeah, it’s scary when someone close to us is struggling and going through a difficult time.

Dr. Barb: On the other hand, the statistics around breast cancer survival right now are quite amazing. Do you have any statistics that you can share, with the likelihood of women surviving their breast cancer diagnoses?

Alecia: Absolutely. And then again, that speaks to the importance of “Get your mammogram!” because if a breast cancer is caught early at stage zero or stage one, it’s 100 to 98 percent curable. Even at stage two, which oftentimes has spread to the lymph nodes, we still have better than 85 percent chance of cure, and that’s with lymph node involvement. So if caught early, it’s very very curable. We know a lot about breast cancer and how it behaves and how to treat it, but it needs to be caught early. I’ve seen women whose cancers were caught much too late, and those aren’t curable situations. Getting your yearly mammograms can prevent that.

Dr. Barb: Often by the time we can feel it, it’s large enough that it isn’t necessarily an early diagnosis. Is that correct?

Alecia: That is very correct. Again, just stressing the importance of mammograms. Yup. And just a general breast awareness that used to be the monthly regular self-breast exams was really encouraged. And now it’s more of just a general awareness, so if you notice any changes, to report those to your providers.

Dr. Barb: Is part of your role also doing a support group?

Alecia: Yes. We have a support group called the Bosom Buddies [laughs], aptly named [laughs]. A wonderful group of women. I facilitate myself, and then also a social worker here at Holland Hospital. She helps out with facilitating the group. Women find it very very helpful. And I find that most women tend to become more involved in the support group once treatment is all done and life has kind of settled down a little bit. All the family and friends who have come to help you kind of go back to their corners and back to their lives, and now they are left—“Okay, now what’s my normal? How do I live my life now moving forward after this diagnosis and treatment?” That’s when I really I start to see women come to the support group. We cry a little bit, but we laugh a lot. It’s just a really fun group.

Dr. Barb: Do you have a sense that many of your breast cancer survivors choose to meet as a group like that, or would you say that’s a pretty small fraction who find the benefit of continuing with a support group?

Alecia: Surprisingly enough, it is a small fraction of women, and I’m not sure why. I don’t know if it’s just life is busy, or if you’re just so happy to be done with treatment, and you’re trying to get back to life as you knew it. You don’t want to be reminded of the diagnosis and difficulties that you went through. I think there’s a huge benefit, though, in that community in sharing and realizing that you’re not alone. There can be ongoing things that you deal with post-treatment, and to know that there are other women dealing with some of the same issues I think is incredibly helpful.

Dr. Barb: Yeah, I think that’s important, too. We do have some evidence to say that there are some lifestyle things that might help to reduce the chance of recurrence. Can you incorporate that into that support group, or is that part of your role in helping women understand moving forward maybe some decisions they might make could influence future outcomes?

Alecia: Absolutely! To speak specifically to the support group, we have dietitians come in and talk about nutrition. We’ve had personal trainers come and present, talking about exercise. We’ve had massage therapists come and talk about the importance of again, self care and massage and things like that.

There’s lots of research out there that shows reaching and maintaining and having a healthy weight, a healthy diet, regular exercise, all significantly reduce your risk of recurrence and reduce your risk of a new breast cancer from forming. Those things are very very important. Also for women who have lymph nodes removed from under their arm as part of their surgery, they can be at risk for something called lymphedema—some swelling and fluid accumulation in that arm—that your risk of lymphedema is significantly decreased if you are at a healthy weight. So, those are all very important.

Dr. Barb: Do you have any recent particularly interesting occurrences that you could share with the listeners that have stood out to you? Are you willing to share something?

Alecia: Yeah, one thing that I’ve continued to think about this person. She came in for a screening mammogram—and she has come yearly for her mammograms—and she had some abnormal findings in both breasts actually, and was called to come back for some additional imaging. And she didn’t want to come. I called her and talked with further, explaining the findings on the mammogram. She has a very strong family history with maternal aunts, mother, maternal grandmother—all with breast cancer. And I cannot get her to come back for that additional imaging.

I keep thinking about this person because I don’t understand that, and I think there’s just that fear of what if. But by not coming for your mammogram, I mean this isn’t going to go away. At some point, if it is—it may be nothing—but if it is a breast cancer, right now it’s something very early and very curable. If she waits, it may not be that situation, and I get frustrated with that because I don’t know what to say to her to try and get her in here to get the imaging she needs.

Dr. Barb: Exactly. And it’s interesting that she chose to do a screening mammogram knowing that this was a test to look for that possibility, yet not the willingness to do the next step. Boy, that’s...

Alecia: Yes! Yes. And I just wish I had the words to say. I don’t know.

Dr. Barb: And obviously with privacy, you can’t inform another loved one or sister or a husband or someone else to come on your side and help her out as well. So,

Alecia: I did call her physician and say, “Here’s the situation. You know, maybe you can talk with her.” So we’ll try from a different angle, but it is all about self care. If you feel a lump, ignoring it isn’t going to make it go away. Talk to your provider, your health care provider, and get in for a mammogram or whatever we need to do to make sure it’s not something. Oftentimes it’s nothing. It’s important to take care of ourselves.

Dr. Barb: Obviously, a big part of what you do is providing emotional support to others. So how do you nurture yourself? I like to conclude with people willing to share where do you find richness now and how do you restore energy so you can continue doing the important work that you do?

Alecia: That is wonderful question! [laughs] For the most part, I’m pretty good at taking care of myself in that way, but there are times where I find that my tank is pretty empty. Again, as the breast nurse navigator I’m caring for women all day long, every day. And then, of course, you go home, and you’re a mom and you’re a spouse and you’re a sister and a daughter and everything else. So it can be draining.

I find that time with my friends and family and laughter really re-energize me. Just this past weekend—my mom lives in Saginaw—and I went to my mom’s, and my sister came, and actually surprised my mom. We had a pajama day. All day Saturday we stayed in our pajamas and we watched movies, we looked at photo albums of trips that we had taken to Cancun together, and we laughed. That was just the best! It’s important for us. I just needed that. I needed some time to do nothing. [laughs]

Dr. Barb: I’m really thankful to hear that you are doing self care because I recognize the importance of the work you do in our community, and I really hope that you have some longevity in what you are providing for our patients. I hope you can find that right balance. It sounds like a fabulous weekend! So hopefully others will be inspired into doing something for themselves because again, time slips by and our good intentions don’t—we don’t follow through with acting on them so this will be a shout out to women. We’re coming up to holidays and a busy time of year and we lose ourselves.

Well thank you so much Alecia for sharing the important work you do. I’m grateful that women can access someone like you as a nurse navigator and I hope other women in other communities have similar services.  

Alecia: Thank you. One thing I want to say is how honored I am to be able to be a part of these women’s—and men’s (not many men, mostly women)—to be a part of their lives, and to be able to be let in kind of that inner circle during some of the most difficult times they experience in their lives. I am everyday thankful and feel very honored. I truly feel that way.  

Dr. Barb: Yeah, it is a bit of a sacred journey in a way, isn’t it?

Alecia: Yes, and I get to walk along.

Dr. Barb: Well, thanks again, Alecia.

Alecia: Thank you! Thank you very much.