Hi my name is Carrie Thompson and I'm a lymphoma physician at Mayo Clinic in
Rochester. I want to talk about what survivorship care is for our patients
with lymphoma. When we treat patients with chemotherapy for their lymphoma,
it's a tough time when going through that treatment. There's oftentimes a
series of chemotherapy cycles, oftentimes it's a total of six, and it's a time that
can be tough in terms of side effects as well as anxiety regarding the diagnosis
and such. But, the things that are comforting during that time are the care
team — the team of nurses both in the clinic and the chemotherapy unit, the
physicians, the nurse practitioners, the physician's assistants, and generally
patients get into a routine where they know what to expect each time. What can
be surprising is how challenging it can be when the treatment is done. Generally
it's a time of celebration because that tough time is is behind you, but
there can be a fair amount of uncertainty of what happens next. That
comfortable routine of going in every three weeks, having the labs, a visit, the
chemotherapy, has ended and what's next? That's where a survivorship visit can be
very helpful to ease that transition as well as coordinate care between the
lymphoma specialist and primary care providers. What we've done at Mayo in
Rochester is set up a visit generally to coincide with that re-staging PET scan at
the end of treatment. So, generally patients will have the PET scan and
laboratory studies in the morning, meet with their physician, and then afterwards
meet with one of our advanced practice providers to discuss how things have
gone over the last six cycles of treatment,
what unmet needs there may be, and discuss plans for the future, including:
Symptoms to watch for, who to call and when, what the follow-up visits will be
like, including: What scans may be done or may not be done,
laboratory studies, how frequently those studies will be performed, as well as
when to followup with the primary care provider. In addition we survey patients
with a questionnaire to understand how has the treatment affected people both
from a physical standpoint – we know chemotherapy and sometimes radiation or
stem-cell transplant can certainly be very challenging and and people can
become fairly weak afterwards so can we help with that – as well as from the
psychological standpoint. Of course having a diagnosis of cancer can be very
challenging both for the patient and their family. And then the social aspect,
both from a job standpoint and financial standpoint, there may be issues that that
we can help with. Sometimes in the busyness of chemotherapy and going
through that routine, those issues get pushed to the side so this is a nice
chance to stop and reflect on how else cancer has affected somebody and what we
can do about it. In that appointment we create what's called a survivorship care
plan. This is a brief document, but it's a very important document, which gives the
summary of what the patient has had – what's the actual diagnosis ,what was the
stage of disease, and then spells out the actual treatment that that individual
has received including the names of the medications, the chemotherapy drugs,
radiation if that was part of the treatment including the dose, and if they
had a transplant. What that can be really helpful for is care down the road. We
know not everybody stays in one location, life happens, people move, insurance
insurance changes, physicians change over time, but that one document somebody can
take with them – we always provide a copy at that appointment both to the patient
and the primary care provider– so there's always a record of that cancer treatment.
In addition we have written out what to watch for and who to call as well as
potential short side effects of treatment, such as
chemotherapy induced neuropathy and long-term effects that may occur years
down the road that are important to watch for, such as side effects of the
chemotherapy or radiation to the heart for example, where we may recommend
additional cardiac testing starting 10 years after treatment. It's hard to keep
track of all of that if it's not written down. We know that the relationship
between patients and physicians is really important and that's true here
with the lymphoma specialists but also with primary care providers and that's
part of this visit where we really try to coordinate the care and provide a
link between us and the physicians who may be here in Rochester or there may be
may be states away. So that document can really provide that coordination of care
In addition, patients have a lot of questions, this is a time of uncertainty
besides, 'okay what's next, when will my next visit be, what should I look be
looking for?' But there's also questions about well what can I do now to reduce
my risk of this lymphoma ever coming back? Or, how can I stay healthy now that
I've gotten through this? Or, how can I get back to health now that I've been
through all this treatment and I've become fairly weak? And so a lot of what
we do is education regarding what is the latest science that we know about a diet
that is most healthy after lymphoma treatment and exercise. We have a lot of
data that physical activity is so important to recovery after lymphoma and
may actually reduce the risk of lymphoma coming back. And so we have resources
that we can help connect patients with, both here at Mayo with our cardio
oncology rehab program, as well as in patients local communities such as the
YMCA LIVESTRONG program. So much of what we do during that visit is education
with written materials, in-person discussion, and we also have a video that
we share with every patient at that survivorship visit. We think the visit
is very valuable, but we didn't want to trust our instincts so we did a study to
determine if that indeed was the case. We asked to see if the visit affected
people's overall anxiety levels because of course when we're talking about
potential effects, both short-term and long-term, of chemotherapy and other
related cancer treatment, we worry that we may be increasing patients anxiety. We
asked about quality of life, and we also asked about educational needs. Were
their needs met, or were there still unanswered questions at the end of
treatment. What we found was that quality of life and anxiety were not different
between the two groups, and other studies of survivorship visits or survivorship
care plans have shown similar results. What we did find was that those who
attended the survivorship visit did have improvements in their educational needs
being met so there were less questions about follow-up care and long and short
term side effects of treatment. That indicates better quality of care, which
we're really proud of. Now, our job is to make sure that all of our patients
who are treated with curative intent for lymphoma at Mayo are making their way to
a survivorship visit at the end of their treatment.
you