(gentle music) - [John] Elaine and I had 45 years together.

They were wonderful.

And it hasn't been the same without her.

(somber music) - [Guilianna] Most of us will be faced, unfortunately, with a cancer diagnosis in our lifetime.

The last statistics we saw was one in three men and one in three women will be diagnosed with cancer.

- When you hear those words, you have cancer, your life spins out of control.

This is life altering, and it remains life altering for the rest of your life.

- [John] It's tough when you're losing someone, and there's nothing you can do.

(somber music) - [Announcer] Major funding for this program was provided by... - [Narrator] Amplity is a global resource for scientific stakeholder engagement and is built upon our belief in the power of face-to-face interaction, nurturing trust with physicians, patients, and payers.

Learn more at amplity.com.

- [Announcer] Additional support provided by the following.

(bright music) - When I was 12, my mother's best friend was diagnosed with metastatic breast cancer, what I would call neglected breast cancer.

And so she took me on her journey with her, and she said, "I want you to see my incision.

"I want you to see the symptoms that I'm having.

"I want you to see what chemotherapy is doing, "what radiation is doing, "because, after all, you're going to be a nurse."

And she taught me, she said, "You need to be optimistic for as long as it's realistic.

"You need to have a good medical team taking care of you."

I talked to her on the phone that afternoon, and she said, "I'm so thankful you've been my borrowed daughter."

She didn't have any children.

"And not my daughter by blood, 'cause I wouldn't wanna think "I had passed breast cancer onto you."

I already had it and didn't know it yet.

I was 38 when I was diagnosed with breast cancer the first time.

When I did get diagnosed I immediately thought about her and all of the words of wisdom that she had taught me.

- When my mom, after she had gotten breast cancer and things started to really shift for her, that was when she decided to take on a role in a more breast cancer oriented focus.

(bright music) - Very shortly after my first mastectomy, just three weeks postop, a physician called me at home and said, "My secretary has just been diagnosed."

I said, "Oh my heavens."

And he said, "I know you're recovering, "but would you just spend five minutes "talking to her on the phone?"

And I said, "Of course."

So he gave me her home number and I called her, and she and I talked for two hours.

And I felt great.

I felt wonderful.

I felt pain free for two hours, because I was helping somebody.

And I said to my husband, "I know what I need to do.

"This is what I need to do.

"I need to be back one-on-one with patients, "because that's where my love is.

"That's where my soul is.

"And it needs to be in the breast cancer arena."

- It was probably the first time I really remember seeing my mom being happy, and I remember her smile.

Her shift happened with her career where everything became breast-cancer oriented, and she just took off.

(bright music) - Two years later, at the age of 40, I was diagnosed again in my other breast.

I had a second mastectomy.

I worried about what would this do to my self image?

How would I see myself with one breast or breastless?

Cancer puts you in a land of uncertainty.

So whatever I can do to maintain control, like keep going to work, take care of my family, I thought this, I really gotta get my arms around this and focus so that I can make this a bump in the road, not a derailment, not a dead end.

- And after that, she was doing volunteering after she recovered enough to be part of the breast cancer deal.

And she was volunteering there because she could tell a newly diagnosed person what it was like when she found out that she had breast cancer.

And there's nothing like having somebody who's gone through that to let you know what it's like.

- When you are facing with those difficult conversations you need an advocate.

You have your family that has some sort of information.

You have doctors giving you different information, but you really need an advocate to help you put everything into context and translate it into how it best fits you and your life and your need.

(gentle music) - The importance of nurse navigators actually really can't be overstated.

We see this all the time with patients.

- This individual is the patient advocate.

She should be at the center of that multidisciplinary team.

She's the communicator on behalf of the team members.

- Somebody who helps them teach how to be a shared decision maker in their plan of care.

Someone to go to, one point of contact, to really support them when they have questions or concerns regarding their treatment.

- [Lillie] When the patient has a question, no matter what it may be, that navigator's the person to call, and she's gonna have the answers.

- That's where navigators are critical, because they do understand these problems, women in that category, people in that category have.

It's very important that people understand what treatment they're being given, what action the treatment might have, and then they become better patients.

(bright intense music) - Lillie saw a need to further develop the professional practice of oncology navigation, and envisioned the Academy of Oncology Nurse and Patient Navigator Association.

- So again, it was, I see a need, I don't see anybody doing anything about it.

I'm not going to wait.

I'm going to create this.

- [Danelle] It began with less than a hundred navigators, and today is over 9,000 navigators.

- [Lillie] And more adding on all the time as more people learn about this.

It's the only professional organization for oncology nurse navigators.

- Those members are touching patient lives.

So the ability to get training, education, become a certified oncology nurse navigator or patient navigator is driving the quality care and outcomes for patients across this country.

(somber music) - [Terry] When faced with a cancer diagnosis you have a lot of choices.

You have choices about where you're getting treated.

You have choices about getting a second opinion.

You have choices about which doctors you choose to take care of you during that period of time.

- [Guilianna] Work Stride was developed at Hopkins initially to serve its population of about 60,000 employees.

Both Lillie Shockney and Terry Langbaum were the co-creators.

- What inspired our Managing Cancer Work program was the fact that Lillie and I, in working in the cancer center for all these years, were kind of a magnet to employees who were diagnosed.

- Lillie's very open about her interactions with cancer, her personal journey, and being in the environment of Hopkins she would get tapped with a lot of questions from employees, because cancer doesn't just affect one part of a person's life.

It affects their entire life, their ability to work, their ability to care for their families.

Through those conversations Lillie really became an advocate to her peers.

- It's very common to see women come in that are not aware of the resources.

It always surprises me, when I guess it shouldn't at this point.

It tells me, though, that there has not been someone reaching out as a patient advocate for that patient and their family.

- [Guilianna] They didn't know how to talk to their bosses.

They didn't know that they could continue to work.

Again, they thought it was the end.

- And when we heard people struggling with these issues we looked at each other and we thought, you know, there's a better way to do this.

We can develop a program that will answer these kinds of questions for other employers so that their employees will be able to find the same comfort in getting immediate answers to these extremely important questions.

We wanna make sure that the employees are as informed as possible so that they make really good choices.

We also want them to use their employee benefits to the maximum when they're faced with a difficult situation like this.

- As they built the program up, it had very positive outcomes at Hopkins.

Word started getting out, and other local employers wanted to also know how they could have such a program in their organization to benefit their employee population.

And that's how Work Stride grew as a pilot outside of Hopkins.

That's where Lillie has made the biggest impact.

She wants to make sure that's available and accessible to as many people as possible.

(bright music) - The time that I enjoy the most during my day is when I can sit down and work on projects that are innovative, that are going to improve patient care.

I always tell people, "I don't think out of the box, "I think out of the bra when it comes to breast cancer," and there isn't anything that I won't take on.

If I think that it's going to improve patient care and be better patient-centered care, then I'm gonna give it a crack.

I'm not gonna wait for somebody else to try to figure it out or figure that it's not that important.

- I've never really met anybody like Lillie before, both in terms of what she does, what she feels, and what she's capable of, but also what she thinks is not just possible but what's needed, what we have to actually do.

So what Lillie will do is she will go talk to patients, talk to doctors, and anywhere along the way where she realizes there's a need here, there's something missing that would be helpful.

She'll find it, she'll create it, or she'll find the the people who could create it, and she will convince them, I'm not sure exactly how she does that, but she will convince them through whatever means necessary to create that thing.

And any day, when anybody needs anything, if Lillie's awake, she's working on it.

(gentle music) - She's always been strong.

I wish I do more to help her.

- What about people who are towards the end of their life?

What about them?

And the reason we ask that question is because a lot of them would say, "Well what about us?

"What's there for us?

"There's nothing there for us."

And then Lillie realized, okay, here's another gap.

There are patients who need something, and there's nothing for them.

She worked with some organizations to create the idea of Metastatic Breast Cancer Support, and what that turned into was the Metastatic Breast Cancer Retreats.

And that's the place where they take an entire weekend and they talk about their hopes and their fears for the rest of their life.

- Each institution in planning a retreat has the opportunity to receive a program planning guide that I've written.

It's 164 pages, soup to nuts, how to do one of these events.

'Cause I thought the first thing we need to make sure of is that people aren't trying to reinvent the wheel.

That takes a lot of energy and a lot of time and a lot of money.

So it's a matter of read this and assign this task to an individual that you think will do this very well, so that you begin forming your retreat staff team.

The patients who come need to network with other patients, but they also need a good facilitator in helping them to communicate with one another as strangers and then turn them into almost an alumni when they leave on that third day.

We also need to have them learn new information.

It could be clinical trials that they're not familiar with.

Even standard of care in some cases is not taking place everywhere across the country.

So they'll learn about standard of care.

They'll share with the medical oncologist who attends during part of this retreat in educating patients about what is available and where, et cetera, and may go home finding out that they need to touch base, perhaps, and get a second opinion with a medical oncologist locally so that they can get on the right track for their treatment.

I'm Lillie Shockney.

I'm the Director of the Breast Center at Johns Hopkins.

I also am the Director for the Cancer Survivorship programs also at Hopkins for all types of individuals, no matter what type of cancer that they have.

I'm a 26-year breast cancer survivor.

I always say to myself there but the grace of God go I, because I'm very, very aware that I could be sitting where you're sitting, certainly.

- To die over a period of years is really, really difficult.

And what we wanna do is help these patients live during that period of time, not feel like they're dying.

- What do you think?

Hope?

What are you hoping for?

Tell me what your life goals were before you found out you had metastatic disease.

I want to see if they're achievable, based on the length of time that they are in your future, but also can we fulfill those goals, those hopes in an alternative way?

- However I die, if I'm blessed to see it coming that I'll just know in my heart that the life that I've lived has represented something that's gonna carry, that they are lessons that I'll carry to the people that I love.

And even people I don't know.

- I used to say I wanted a cure.

Of course, I want a cure for all of us.

When we turn off a switch and it doesn't exist, and we can tell our daughters and our... - [Lillie] It's okay.

- And our granddaughters that there was a disease called cancer.

But if it doesn't happen in my lifetime, I still hope for it.

I have a confident expectation it's going to happen.

But for me, just life, abundant life to the full.

- From my experience, the retreat was a real plus.

It gave us time to look at things from a different perspective.

It gave us time to meet with other people that were going through the same steps in their life.

Everybody deals with situations differently, and being able to come together with others that are going through the same thing is very helpful.

Probably one of the biggest pluses to the retreat is there's no doctors, there's no nurses, there's no hospital.

Finally...

Finally somebody's cared about your feelings, your spouse's feelings, trying to help you deal with the mental load that you're under.

- Oh, we love you so much.

I may be the only hope that they can find.

I will give them some of my hope so that they can get through this.

And it's there to be shared.

- Thanks.

- You're welcome.

- And I think that was the hardest thing to see this, to see the fear in their eyes.

But I think the hopeful thing is I knew, from attending these retreats and hearing the impact, that they were gonna walk out with less fear by the end of that weekend.

And I knew that they were gonna walk out with their head held high, and that they were gonna walk out with hope.

A hope that they didn't have maybe on the first day.

- These patients are gonna walk out of here changed, for the better.

Changed in having more knowledge.

Changed in having people that they can trust, and knowing that they're not alone.

- I think that's where Lillie's true passion shines and why she wants to help people through the hardest times.

And she really does it with all of the strength and might, because she truly cares.

- One of her greatest gifts is that she sees so far beyond what's so immediate, in everything she does, she not only looks for the greater good, but she looks beyond.

How can this grow?

How can this be shared with other people?

How can this knowledge be passed?

How can these women be served?

She has given her life, her passion, to making our lives better.

And this retreat was one of her best achievements, as far as I'm concerned.

And I think that she knew when she developed it that it would need to be written in a way that others could simply understand the components, understand the purpose of these retreats, and be able to replicate them.

And she has done that in everything that she does in her life.

But I think this one in particular has been one of her absolute best.

- There are 39,000 plus women that will die this calendar year of Stage IV.

Every one of them deserves the right to attend one of these retreats.

I know you will carry this retreat and the couple's retreat on as part of my legacy.

And I will continue to push for these to happen everywhere so that everyone, every woman does have that opportunity to come and have what we know will be a good experience.

So, I love you, thank you.

(somber music) - You say Lillie in this environment, you don't need to hear Lillie Shockney.

You just need to hear Lillie.

Everybody knows Lillie.

(bright music) - I'm so encouraged and hopeful in this next generation.

If I was able to talk to them, I would just say, look at what Lillie's done at Johns Hopkins, look what she's done for patients, for cancer patients at end of life.

Really study and see the impact, and I think if we could connect them with the work that Lillie's done, and they could see that and they could see the impact there'd be no question, they would wanna join, they would wanna continue on that legacy.

- I just really wanna thank you all so much for sharing and being so open with me, and this really means so much every year to be here.

So thank you all.

- [Douglas] Make a change.

Make the kinda change that she's made.

If we could have more of Lillies around the world it's gonna be a better place.

- She has dedicated her life to not only caring for others, but thinking creatively and innovatively about how she cares for others.

And I think she's inspired so many of us to pick up the pace and run along beside her, as she tries to do this.

And it's just been such an incredible relationship for me.

- I wish we could replicate her somehow so that every physician in the country had an outreach, at least, to a Lillie, to somebody who's built their life around service, advocacy, education, knowledge, and longevity.

To build trust with a patient, the patient needs to know they can call you at any time.

Maybe three years hence that they say, "Listen, I'm having another problem.

"What do you suggest?"

And it's a relationship.

- That's something that Lillie does all the time.

We've seen it.

And by now I mean, we sent her an email, "Hey, there's a patient in need."

The next day I get an email from the patient saying, "Lillie called me last night "13 minutes after she got that email."

So when we see what Lillie does, what we try to do is find out what are all of the programs, what are all the projects, what are all the things that she does that help patients?

And we try to take those and grow those and replicate those across the country so that we can take the special work that she does and try to replicate that as far and as often as we can.

[Douglas] We can't let, and we won't let, all the work that she's done sort of dissipate.

It's almost like a snowball.

And it started off with her.

We have to get it, we have to make this bigger.

(bright music) (gentle music) - We need her work historically recorded.

We need it to become part of the healthcare education Doctors, nurses, pharmacists receive.

It's a critical part of our treatment.

- If I can go any day and make a difference in just one person's life the way Lillie did for those patients, that's a good day.

- I feel like being in her presence is life changing.

If you listen and watch carefully, don't just listen to what she's telling you.

Do what she does.

- She's dealt with many challenges in her life, both personally, professionally, and she's always persevered.

She doesn't take no for an answer and she manages to always get what she wants, even if she has to go do it herself.

- They are unlikely to find anybody who will give the hours that she has given because she loves the help that she gives.

- To share with everybody is no problem, 'cause I know what she's doin'.

I know how much she enjoys doin' it, and it's her biggest goal in life is to help whoever she can.

And it's a good feeling for me to know that I'm married to her, a person that's that's done this much for so many people.

- I don't wanna see what I've started stop.

(somber music) It can't until we have cancer in the medical book with polio, cured disease.

We can't.

(gentle music) - [Announcer] Major funding for this program was provided by... - [Narrator] Amplity is a global resource for scientific stakeholder engagement and is built upon our belief in the power of face-to-face interaction, nurturing trust with physicians, patients, and payers.

Learn more at amplity.com.

- [Announcer] Additional support provided by the following.

(somber music)