Planning a Metastatic Breast Cancer Retreat | Johns Hopkins Kimmel Cancer Center

Planning a Metastatic Breast Cancer Retreat | Johns Hopkins Kimmel Cancer Center

(gentle piano music)>>There are 39,000 women
who die every year of metastatic breast cancer. Less than 100 have the
opportunity to come to a metastatic breast cancer patient retreat. Every single women, however,
deserves the opportunity to attend one of these
three-day, two-night events to help prepare them for
what’s going to lie ahead. I am 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
with the grace of God, go I.” Because I’m very, very aware
that I could be sitting where you’re sitting. Certainly.>>It’s extremely important
for other facilities to engage the family and engage the
caregiver at the end of life for patients. And it happens very seldom.>>She’s always been strong. I
wish I knew more to help her.>>The primary goal of the
retreat is to prepare the patient and their loved one for what lies ahead which includes, end of life. Often times, what is going to lie ahead in planning end of life is
not discussed by their medical oncologist. There isn’t a good comfort
zone for that doctor to engage in what really
is a serious conversation that that patient deserves
to hear and participate in.>>Many of these patients
suffer terribly, spiritually and emotionally at the end of
life. And, it is extremely difficult for the physicians
to engage because they’re moving so fast. And Lillie fills that gap.>>The ideal time for an
oncologist or oncology nurse or nurse advocator, to refer
a patient for one of these metastatic retreats is when
the patient has gone through several lines of therapy and these treatments have not worked.>>There’s so much more to
treating these patients than just the chemotherapy and
the radiation therapy.>>And maybe we’re just, since
we’ve been on this journey, together for it’s gonna
be 10 years, you look at things differently. And I
remember when we sat in your seats. Just hungry for information.>>The value is tremendous
from an educational perspective and tremendous from a
research perspective. These retreats offer us a
huge amount of material from a research perspective from
which to develop our palliative care programs, our hospice
programs, our nurse navigator programs. Tremendously,
tremendously valuable to us.>>The primary goal of the
Metastatic Breast Cancer Retreats is not just preparing them for
end of life, it’s also seeing what their relationships look like. How can we help them communicate
better with their family and also with the oncology
team taking care of them? Are they in pain that
is going unaddressed? Have they ever heard of palliative care? Do they have, maybe,
misgivings about hospice? And when that’s supposed
to happen and why? By engaging patients in hospice sooner, rather than maintaining them
on new, more toxic drugs, they live longer and with
better quality of life. That should be our goal.>>What we’ve seen at these
retreats with patients coming in a lot of them haven’t even heard of the term “palliative care.” So they don’t necessarily know what it is, know when to ask for it.>>I didn’t call in palliative
care because I didn’t know what it was. It was
ordered, suggested to me.>>Tyler: If they learn about
palliative care and getting palliative care involved
early, I think that they can enjoy a much better life
for a longer period of time.>>I am always worried for
patients about pain and suffering, and that’s why I like to talk about palliative care. I think it’s so important in that it should be part of your care now. It shouldn’t be this, in the
nth hour kind of a thing. It’s not intended for that. But it has developed a
misconception, unfortunately.>>Lillie structured it in a
way that a healthcare system does not need to reinvent the wheel. The entire product is there.
There is guided instructions. It’s evidence based. It’s data driven.>>The lessons that are taught
at this retreat from other patients, other caregivers,
and the professionals that are at the retreat, are invaluable. I think they will provide
patients with a lot of knowledge.>>To have empathy for one
another, to feel very comfortable in a safe environment to ask
questions that most women are afraid to even ask their
caregiver, their physician, It’s an opportunity to learn
how to have a voice if you want to have a voice. But it also to the depths
of: how to have a good death. And, why not talk about that? And where better, than
to be with your peers and have that opportunity?>>These patients feel
very isolated and alone. It is a very unique situation
to have a life without a future.>>Elaine had been diagnosed
again with metastatic cancer it was in her lungs and in her spine. We attended the Metastatic
Breast Cancer Couples Retreat about three and a half years ago.>>Once the patients understand
that their cancer isn’t curable, they go through a
myriad of emotions that they really find it difficult to express. Many times because they’re
being brave for their family. And sometimes because
they can’t find the words.>>I would recommend anybody
that is going through this to get help from someone. To go to a retreat. To find
somebody to help them guide through. Because it’s so confusing.>>A retreat like this allows them to see that they’re not alone and allows them to find a voice
and express what’s going on because they’re actually
being asked what’s going on.>>Finally somebody’s
cared about your feelings, your spouse’s feelings. Trying to help you deal
with the mental load that you’re under.>>To die over a period of years
is really, really difficult. And what we want to 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 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 there 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 you turn off a switch
and it doesn’t exist and we can tell our daughters and our… 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 gonna happen. But, for me, just like,
abundant life to the full.>>I just don’t want my
daughter to grow without me. I don’t want her to have a wedding where she doesn’t have her mom.>>Another issue, particularly
for those who have children, is: I won’t be here to raise my children. I won’t be here to
instill my values in them in letting them know how much I love them. In having the joy of walking
down the aisle and me witnessing that. So, a solution, though not
identically the same, but has worked, I find, very well. Is providing those patients
a wide selection of cards to select for their
children for the milestones those kids are gonna reach in
the future after she’s gone. What do you want to tell
your child on that day? And, we might just say,
“oh I’m so happy for you, today you’re getting married.” Where as she’s writing down:
“This is what I hope for you in your marriage. This is
the kind of person I hope you selected for yourself. And
here’s some marital advice.” So, they might be doing a
better job then those of us among the living are.>>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. I find it ideal to have
two nurse navigators there. At our particular retreats. I also have a lead breast
cancer survivor volunteer who’s worked with me for a very long time in a volunteer role. She herself also being a
breast cancer survivor. We always have a medical
oncologist come in for an hour to an hour and
half on Saturday evening to address questions
that patients may have. A yoga instructor who
is certified in yoga, including oncology yoga. Reiki and massage therapists who are certified in oncology therapy. We also find quite valuable to have there. And it just isn’t for the
patient, we also want the individual that’s accompanied
them to also have these same experiences. A cancer center or breast
center can set up a very similar program first by connecting up with me and I can email them
how to go about getting the Program Planning Guide.>>The healthcare industry
needs to step up and take responsibility and recognize
if they really want to treat the patient and improve the quality of the individual’s life, it can’t just be a medical
doctor appointment. It can’t just be a CT. It can’t be a blood test. Hospital administrators need
to recognize that there’s an even greater need to
integrate these types of retreats into their healthcare systems.>>Lillie: For more information
about these retreats, please email me, Lillie
Shockney, at [email protected] (gentle piano music)


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