How A Breast Care Navigator Guides the Way for Overwhelmed Patients

Join us for an inspiring and eye-opening episode of Everything Cancer, where we sit down with Lisa Spencer, a certified breast care navigator with over 40 years of oncology experience. Lisa opens up about her vital role in guiding breast cancer patients from diagnosis through treatment, offering compassionate, hands-on support every step of the way. Whether you or a loved one are navigating a breast cancer diagnosis, or simply want to hear from someone who has dedicated their life to helping others, this episode is a must-listen. Lisa shares invaluable advice on self-advocacy, avoiding rash decisions, and accessing trusted resources. Plus, hear how her own experience as a lymphoma survivor shapes her work and empowers others to live fully through their cancer journey. Don’t miss this powerful conversation!

Transcript

Everything Cancer (01:05)
Hello everybody and welcome to the Everything Cancer podcast. We're really glad to have you here. We have a very interesting guest with us here today, Lisa Spencer, and she is a breast care navigator. And Lisa, if I didn't quite say that right, you can explain what your job title is. She is an amazing individual who has devoted her career to helping people through a very

really tough time in their lives when they think there may be something wrong and then they find out that there is something going on. And she really holds their hand through the entire process and guides them through that in a literal and figurative way and gives people a lot of reassurance. And I can't wait for Lisa to talk us through this process. Lisa, welcome.

Lisa Spencer (01:56)
thank you so much for having me, Jill. It's exciting to do this podcast. And I'm just always happy to tell people what I do and why I do

Everything Cancer (01:59)
You

Well, I think for a lot of people, it's a very scary prospect to think about this. And then they often wonder, how am I going to get through it if I ever do have to face that? And I think maybe hearing from you will help ease some of that. And also, if they do find out that they have something going on, hopefully they'll seek out a center that has a breast navigator available after hearing this podcast.

Lisa Spencer (02:39)
it'd be terrific. I'm hoping lots of centers these days have breast navigators because it's just somebody who can be by your side throughout the whole journey through breast cancer. It's a great role.

Everything Cancer (02:55)
Right. I'm glad you think so. I'm glad. So why do you think it is a great role?

Lisa Spencer (03:02)
Well, gosh, here at Penn State House St. Joe's, I have the opportunity to sit with the radiologist, sometimes the surgeon, and be with the patient really from the moment that they get diagnosed, from the moment they hear the doctor say, unfortunately, what we found was breast cancer.

So I'm not the person who picks up the pieces. No, I'm the person that helps the patient put all the pieces together to make sure they always get appropriate care, that they know exactly what's going on. I educate patients. I make appointments for patients. I tell patients I'm your go -to girl.

And in a way, it's kind of like a concierge service for women diagnosed with breast cancer.

Everything Cancer (04:10)
That's a really great way to explain it, but you also have an incredible amount of knowledge.

Lisa Spencer (04:18)
Well, I've been in oncology since 1983. I started out as a radiation therapist. I am not a nurse. But through my entire career, I was a radiation oncologist. I was an administrator over two cancer centers in Illinois. When I moved here

Pennsylvania, I decided to get back to patient care. And because I had started patient navigation in Illinois when I got here, my prospective boss said to me, what do you really want to do? And I said, I would love to start a patient navigation program here at St. Joe's. At the time,

They didn't have anything. And I found that the Midwest was a little further along with the navigation process. So I've seen a lot over the 40 plus years. I'm sure just as you have though, I'm older than you. So I'm sure. So things have changed and so much for the better for our patients. It's great.

Everything Cancer (05:30)
Not that much.

Well, they're very fortunate to have you and you obviously do have a lot of knowledge, my gosh, and a lot of background to bring to them. So what do you consider, Lisa, imperative for someone who is newly diagnosed to do besides make sure that they're with a breast care navigator?

Lisa Spencer (05:52)
So.

Right. You know, I tell everybody a lot of what not to do to start because everybody kind of jumps to, gosh, you know, I talked to this person and that person, they did this and I went on that, this website and that website. So in the beginning, I'm talking a lot to folks about don't make rash decisions.

I have everybody think about the whole process as like a puzzle. And when you're missing puzzle pieces, you don't get the whole picture. So I'm advising women to make sure that they get all of the information before they make such big, big decisions with their life and their body. then...

I am definitely pro self advocate. know, lots of people tend to do whatever the doctor tells me to do. But I just from the very beginning, I talked to all of my patients and they asked them at tell them ask questions, ask if there's any alternatives,

you know, should I get a second opinion, all those kind of things. I have all sorts of educational materials to help patients with all of the hard, hard decisions. So I do a little bit of telling them what not to do and then what to do.

Everything Cancer (07:58)
I think the what not to do is oftentimes just as important as the what to do.

Lisa Spencer (08:03)
Right, right, I think so too.

Everything Cancer (08:05)
So what are some tools that you think patients can have with them or use to kind of keep track of things or keep things straight for them as they're working with you?

Lisa Spencer (08:18)
That's hard. Here we have a binder, calendars. There's all sorts of tools online, but I always tell my patients, stick to the websites and things that I suggest because there's a lot of garbage out on.

the internet so they need to be careful. I know people are going to go and you know check with Dr. Google and see what Dr. Google has to say but I have definitely certain websites and materials that I prefer they use because I tell them I have revert reviewed the content I know

it's up to date and it's accurate all that kind of stuff so I you know there's lots of tools to use you just have to use them print them you

Everything Cancer (09:26)
I think a binder is one of the most important things for you to keep track of everything and have a place to put everything so that you can stay organized because this is an overwhelming process as it is. I mean, and so if you just, at least you can put everything because you're handed so much stuff too. So if you have a place to put, excuse me, put everything, that makes it so much easier.

Lisa Spencer (09:34)
Right.

But it is.

Right. Right.

Absolutely.

Everything Cancer (09:53)
So what are some of your favorite sites? What do you feel are sites that are really helpful to patients?

Lisa Spencer (10:00)
I like breastcancer .org. They have websites all breast cancer. It has many good features. You can look up pretty much anything. It's always updated. The American Cancer Society, cancer .org is a favorite. They have a detailed guide

going over breast cancer with section after section of really great information. In fact, I always print for my newly diagnosed patients before they get surgery. The American Cancer Society has a great section on exercises after breast surgery that has pictures

You know, some of my elderly patients, you know, if you demonstrate it, might remember, but it has really good pictures of how to do some of the, you know, exercises. So I kind of do a lot of picking and choosing between those two websites.

Everything Cancer (11:13)
How important are those exercises to do after surgery?

Lisa Spencer (11:17)
gosh, they're so important. We review why it's good to exercise with moderation. You want to stretch and make sure that your shoulder doesn't get frozen to help reduce inflammation and lymphedema. There's

Gosh, so many benefits and people these days are really starting to understand that more and more. We also have a medical gym that's affiliated with us and more and more I'm getting more patients that are interested. Once they're cleared from surgery to do a little bit of exercise even through treatment.

especially through treatment, and they just feel so much better trying to stay active. So staying active is just so important. We know the benefits of all of that these days. Of course, I'm not an exercise physiologist, but I know a good one.

Everything Cancer (12:31)
Well, it is so important. I it's so important for mind and body and maintaining your health. And as you said, it really does make a difference in terms of decreasing, hopefully, the severity of lymphedema that may occur and so on. There's just a frozen shoulder and maintaining the strength of the muscles and so on. There's just so many benefits.

Lisa Spencer (12:50)
Right.

Right.

Everything Cancer (12:55)
What are some Lisa, what are some of the frequent questions and concerns that patients often that you you find come up over and over again with your with your patients?

Lisa Spencer (13:06)
Gosh for sure everybody right off the bat wants to know will I lose my breast? Will I need chemotherapy? Has the cancer spread? Well, will I lose my hair? How sick will I get? You know as soon as somebody gets the diagnosis

And you know, my mind as well as their mind will jump right to some of the bad things you've heard about when it comes to breast cancer. So I try and alleviate some of those fears right from the beginning. You know, most patients realize that we may not know right away if they're going to need chemo, you know, and but I do talk about it because

You know, if somebody's thinking about it, they have to acknowledge it. So even on day one, we talk about potential, the types of surgery, the types of treatment, how they might feel, that kind of thing. I try not to let them jump too far ahead, but those are the things that inevitably everybody asks. What stage am

Everything Cancer (14:34)
Right, so that's a real art to answer their questions and be honest. And because I think trying to sugarcoat things isn't necessarily the right answer, as you know, but let them wrap their head around things, but also not.

Lisa Spencer (14:41)
Mm -hmm.

Okay.

Everything Cancer (14:55)
not overwhelm people at the same time. Yeah. So that if they, know, as they move forward and it is one step at a time, it is one day at a time as you're alluding to. So I think that way as they take that one step at a time, hopefully because you've kind of painted the picture of, okay, if we do get there, this is what may happen. At least they have their head somewhat wrapped around it. Right.

Lisa Spencer (14:57)
Right, right.

Exactly.

Everything Cancer (15:25)
So when, let's say when the answer is a mastectomy or the answer is a year of chemotherapy, how do you talk someone through that?

Hahaha!

Lisa Spencer (15:39)
With a lot of care You know, it's a start with mastectomy I mean It's it's life altering. It's life -changing whether somebody is married or with a partner or or not it It's body image its self -esteem

We talk a lot about reconstruction, things that they can do. We talk a lot about prosthetics. I'm a certified mastectomy fitter as well. And so I'm able to show women what a prosthetic looks like, how it fits into a mastectomy bra.

I have samples and pictures of plastic surgery. I implant it so people can touch it and feel it, know what it's gonna look like, that kind of thing. So it's a tough conversation. A lot of women don't necessarily wanna have

Everything Cancer (16:55)
Mm -hmm.

Lisa Spencer (17:03)
partners around during the conversation though I encourage it because I kind of feel like the more open everybody is with all of this information the better it is understood and chemo I don't pull any punches I tell women they say maybe I won't lose my hair and I'll say no you will likely lose your hair

and your eyebrows and your eyelashes and any other hair on your body, but it grows back. And so we talk about wigs and scarves and the timing of hair growing back, that kind of thing. So I have very long conversations with most everybody. And it's good. It's good.

Everything Cancer (17:57)
It is good. mean, you have the ability to spend time with them that they may not have with their oncologists, which is really wonderful. I functioned as a navigator and I found that that was really special time. It's a very overwhelming time for patients, but when you can really have that one -on -one time and go through things with them and explain things.

Lisa Spencer (18:05)
Right.

Everything Cancer (18:27)
even though it is life altering and it is overwhelming, the fact that they have you and that you can really take that time to guide them through what the steps are and what may happen makes a big difference. holding, you're truly navigating them through it, holding a light up.

Lisa Spencer (18:44)
Yep, absolutely. you know, I do really almost the exact same thing with men. I have some, you know, not many, but some male patients and they often feel neglected in the whole breast cancer realm. And we are lucky enough here in Redding, Berks County is the county we're located.

We have a organization, nonprofit that's solely breast cancer. It's called BCSS Breast Cancer Support Services. And they have opened up to men and family. They give every woman a bag when they're diagnosed with breast cancer.

and they've just come out now with individual bags for men that include books and resources for men. you know, it's a very valuable partnership and I try to make men feel as comfortable in the breast cancer realm as women. So that's important to me too.

Everything Cancer (20:08)
I'm glad and I think that's something a lot of us don't think about, but it's a very real fact that men do experience breast cancer.

Lisa Spencer (20:14)
It is, it is. I have a husband and wife breast cancer survivor team and they've been very good about talking to me about what she may have gotten and he didn't get or vice versa. So I've used their experience to work with.

other folks and make sure that that men and husbands of survivors are getting what they need to. It's important.

Everything Cancer (20:53)
That's really important that you have actively listened to them to advocate for your other patients and make sure your other patients are getting what they need. That's pretty impressive.

Lisa Spencer (21:05)
I think listening is probably 50 % of my job. Half talking, educating, the other half listening. So it's an important component of being a navigator, for

Everything Cancer (21:18)
It is. It is to really hear what not only what the questions are, but what the unspoken questions are. And actively listening, mindfully listening to the questions for so many different reasons.

Lisa Spencer (21:27)
Mm -hmm. Yes.

Everything Cancer (21:36)
to discern where the real anxieties are and how you can really help people through that. And I don't want to leave radiation out of the equation either. That that's another conversation and of itself as well. And obviously you can guide someone really well through that with your with your experience. So

Lisa Spencer (21:41)
for sure.

Yeah, I wouldn't let you forget about it.

Everything Cancer (22:02)
It's really wonderfully. what you're able to do in terms of of leading someone through an overwhelming time of their life and their their partner as well. That's very reassuring.

Lisa Spencer (22:13)
Right, yeah.

Thank you. I have such a varied background that it kind of pairs well with all that I need to talk about, need to say. A lot of people say to me, but you're not a nurse. I'm like, well, nope, I'm not.

But I am a clinical person. I'm considered a clinical patient navigator. It's just that my background is in radiation therapy. But then I let them know I have 40 years of oncology. I'm a certified breast care navigator. I'm also a certified oncology navigator.

as well as my certifications in radiation therapy. So I tell them I have a really, really broad background, but I have focused on breast cancer for the past now 13 years. So then they kind of realize that, okay, if she doesn't know the answer, she'll get me to the right person that knows the answer. So, and I let them know that right away.

I'm not going to be your nurse. There's lots of nurses here that are wonderful. I'm going to be your navigator.

Everything Cancer (23:41)
have every comp.

I have every confidence you will get them to the right person and the right answer. Lisa, I have no doubt that I love your top, by the way. And for the people listening, I'm going to describe it. It has butterflies and pink hearts and pink ribbons on it. White butterflies, pink hearts, pink ribbons with a black background. It's reassuring. I love it. It lends hope, which I love it.

Lisa Spencer (23:53)
I tried. I tried.

and

Thank you. Thank you. It is an end as a part of the volunteer work I do for breast cancer support services that organization. We do I'm wearing this specifically for a very specific reason today. Tonight is rehearsal. We have a fashion show every year.

that showcases breast cancer survivors, men and women. It's a fundraiser, but it's also, we always build education into it. And tonight is the rehearsal. So I wanted to wear, I have to, I wear scrubs to work and I didn't want to have to change after work. So I thought, I'm going to wear something very uplifting. Everybody likes

Everything Cancer (25:01)
Hahaha

Lisa Spencer (25:08)
my butterfly and breast cancer ribbon top. that's, yes. Yeah. And here at St. Joe's, we have certain colors that we have to wear. And because my background is radiology based, 12 years ago, I was told that I had to wear the colors of radiology.

Everything Cancer (25:14)
It is uplifting. You, you met your goal.

Lisa Spencer (25:35)
nurses wear Navy so I can't wear Navy. So they allow me to wear the radiology scrub colors are black. So they allow me to wear black slacks and any type of black and pink top that I would like. I have shop NeuroNephier. I probably have every black and pink breast cancer top there is out there. yeah.

Everything Cancer (26:02)
I love it. I'll have to see your collection one of these days. What is really imperative in your experience and in your reading for somebody that is undergoing treatment and is a survivor to do to take care of themselves?

Lisa Spencer (26:05)
my goodness, okay.

Mmm, yes, lots and lots and lots. gosh, you know, I tell everybody try and eat healthy, but try and eat. You know, some folks just don't feel like eating a whole lot during chemo. Drink, drink, drink, drink, drink. Try to live your life. Try and do the things you love to do.

If you can, try and be with your children and grandchildren or your pets or your partners or walk in nature and take photographs. Just try and live your life. This is part, I say, this is part of your life. It's not an easy path, but I'll walk you down the path. I'll walk with you or behind you or in front of you, whatever you need.

I like for folks to, you know, I tell people, try not to cancel vacations. If you can do the things you love to do, we can always work around that. So I guess my best advice is eat well, drink well, drink a lot, live your life as you'd like to live it. And exercise, yes, yeah. Yeah, sleep is good.

Everything Cancer (27:45)
and exercise as we were talking about and good sleep.

That's like, and I think people often forget about that component, how important that is, because that's when your body and your mind really heal is while you're sleeping. And that's so for both. It's so important. Your mind has a chance to like really work through things and you just, and you're, feel refreshed. It does do a lot of processing of things while you're sleeping. But I love that live your life.

Lisa Spencer (28:00)
Absolutely. Yes.

Yes.

True, yep. I've had my own challenges with sleep. I have to wear a CPAP these days and I've had patients that have had sleep issues and through this whole journey they found out also that they have sleep apnea. So, you know, I'll talk to them about my experiences and how much better I feel.

all those kind of things because that's you know on top of a cancer diagnosis treatment is just like another thing you have to deal with but it happens more often than you think. Yeah, surprising.

Everything Cancer (28:57)
I bet it does. I'm glad it's being discovered more than it used to be because it does make a big difference for all of us to get a better sleep and to have better oxygenation when you're sleeping. It enriches your heart muscle, which is really imperative for all of our health and so many other better oxygenation for your brain, for your body while you're sleeping. So there's a lot of value to that. Absolutely.

Lisa Spencer (29:04)
Right. Right.

It's

Right. Right.

Everything Cancer (29:25)
And I love how you say live your life and that this is part of your life. I think that probably helps people maybe while they're thinking about it, accept things a little bit more and kind of digest it a little better and put some bitterness behind them and move forward.

Lisa Spencer (29:43)
Love you.

And people always ask me, are you a breast cancer survivor? Because what I do, and I let them know, no, I am not a breast cancer survivor, but I am a lymphoma survivor. And so our journeys are gonna be different, but I can relate to dealing with life altering.

diagnoses and treatment challenges and all the things that go with being a survivor. I think sharing that with many of my patients, not all, makes them feel very comfortable with me knowing

though was different path, I've kind of been on the same journey. So... No! Yeah. Yeah.

Everything Cancer (30:52)
Lymphoma is nothing to sneeze at, that's for sure. And that's a tough treatment. mean, any of them are. And thank you for sharing that.

Lisa Spencer (31:02)
Well, you know, I'm very open about what I've been through and it really does. I think that's part of why I wanted to go into navigation. I felt that with my varied degrees and certifications, because I also have a master's in education and I tailored it to adult education knowing that I'd be one day, I was hoping to teach.

at a college level, which I did, but I actually find it more useful in my patient education, knowing how to talk to people and how adults learn and that kind of thing. So I just feel that when you put all the pieces together of Lisa Spencer, she's...

She's got a lot of what you need to be a navigator. yeah, it's always a journey, such as life.

Everything Cancer (32:16)
I think all the pieces of Lisa Spencer come together to make a pretty fantastic package to be honest Lisa. I didn't know all of this about you. Your patients are very fortunate to have someone like you. Wow, you're welcome. You're obviously really engaged and devoted to what you do.

Lisa Spencer (32:30)
thank you.

I tell people I have finally found my dream job and I hope to do this until I retire and hopefully a little bit beyond in a part -time fashion and to me it's the best job ever. So you know I do it out of love.

Everything Cancer (33:09)
Wow, you can't really top that. That is a hard thing to top. That really is. So what message would you like to share with people before we close?

Lisa Spencer (33:24)
gosh. Ask questions. Look for the navigator. Our whole goal is to help out patients. Your facility may not have a navigator. It might be a case manager. It might be a special nurse. It might be the social worker.

Navigators come with different titles in different ways, though many facilities do have navigators. I think that asking credentialing of, know, is there anybody out there that's a credentialed navigator? I think that's fair.

fair game for patients to ask. I think that everybody just needs to learn from their journey, know that it's part of their life and that you just need to, that sounds harsh. One just needs to live their life and integrate what's going on now.

part of your life and be an advocate. You know, you're your own best advocate. Yep.

Everything Cancer (34:55)
Mm

You are your own best advocate. What are some ways you think patients

It's hard to be your own advocate though. You're overwhelmed and it's an intimidating experience to walk into an oncologist's office, into the radiation suite, into the chemotherapy. mean, after a while you feel like the infusion staff and the radiation treatment staff are your family, but when you initially walk in there, it's a very intimidating experience.

Lisa Spencer (35:11)
Yes.

It is.

Everything Cancer (35:35)
And it is, and I feel from the support groups I facilitate that walking into the oncologist's office is always intimidating. So what are some tools that patients can use to advocate for themselves? Because that is important.

Lisa Spencer (35:46)
Mm -hmm.

Absolutely. When I'm meeting with patients for the first time on the day of their diagnosis, I always tell them, write down your questions. Write any question as fair game. Write it down because when you get into that oncologist's or surgeon's office, you're not going to remember them. But if it concerns you now,

It's gonna concern you then so just keep a running list. No question is dumb You know everybody says I don't want to sound dumb, you know But if you've never experienced cancer or experienced cancer with a loved one or whatever These questions are are huge and you you just have to ask them

Being your own advocate is trying to get all of the right answers, whether it's writing your questions down, calling your navigator, talking to whomever you can, calling the 1 -800 number for the American Cancer Society. So you just have to ask questions. Get the whole picture and...

and look for that navigator who will help and guide you through the process.

Everything Cancer (37:22)
Yes, so that 1 -800 number for the American Cancer Society is actually an amazing resource because you will talk with someone who will explain to you your diagnosis and explain to you

Lisa Spencer (37:32)
Yes, it sure is. Let me

Right.

Everything Cancer (37:43)
what your path forward in a very, I mean, it's one telephone conversation, but they will explain to you what your path forward may look like and give you other resources. And then, that, I'm amazed at what that one phone call can do through the American Cancer Society. Plus the amount of information on there about anything to do with chemotherapy, radiation therapy, eating well, sleeping well.

Lisa Spencer (37:49)
Great.

Right?

Mm -hmm.

Everything Cancer (38:13)
taking care of yourself, advocating for yourself, sexual health issues, fertility preservation, it's all there. So it's a really good resource to keep in your pocket and pull out. But writing down those questions, I agree with you, Lisa, is probably the most important thing you can do. I also remember to leave space after the question so you can write the answer.

Lisa Spencer (38:23)
Right. Right.

Everything Cancer (38:43)
When you hear it and write that question down and you think of it. So keep that journal with you that you write those questions in. That's really important.

Lisa Spencer (38:48)
Right. Right.

It really is. I give patients a notebook, a journal of sorts, just to keep their running list of questions and answers. And I always, if you can get somebody to come with you for your appointments, I say try to because it's good to have a second set of ears listening, just because everything is so overwhelming. It kind

The doctor starts talking and then shooom, it's like everything goes over your head. that you don't understand it or anything like that. It's just anxiety, it's overwhelming, it's so much information. It's good to have somebody there if you can. And for people that don't have somebody, I'll often sit in and take notes for patients if I can.

Everything Cancer (39:50)
my gosh.

Lisa Spencer (39:51)
Yeah, if I can. I just recently had the loveliest 90 year old lady who was so concerned she didn't want her son to come with because he had heart trouble. And she didn't want any of this to upset him. So I sat and took notes for her and she was so grateful and

Smart lady, she used to be an elementary school teacher, very with it, but a lot of the things that I wrote down she didn't even remember us talking about. So it's good. Ask your navigator to sit with you if you don't have anybody. If she or he can't do it, they can get somebody to do it. It's always a good thing.

Everything Cancer (40:44)
You've beat me to the punch. That second set of ears is really helpful. your time here has been amazing. Thank you. I'm so thankful we met.

Lisa Spencer (40:56)
same here, same here.

Everything Cancer (40:58)
So, and I really appreciate you being here with us today on the Everything Cancer podcast. And I look forward to having you back sometime.

Lisa Spencer (41:06)
Okay, very good. You take care and thanks again for having me.

Everything Cancer (41:08)
You too.

Absolutely. I bet everybody that's listened to this has fallen in love with you.