Life After Cancer

Dr. Tara Sanft, Life After Cancer
October 31, 2010Welcome to Yale Cancer Center Answers with Dr. Francine Foss
and Dr. Lynn Wilson.  I am Bruce Barber.  Dr. Foss is a
Professor of Medical Oncology and Dermatology specializing in the
treatment of lymphomas.  Dr. Wilson is a Professor of
Therapeutic Radiology and an expert in the use of radiation to
treat lung cancers and cutaneous lymphomas.  If you would like
to join the conversation, you can contact the doctors
directly.  The address is canceranswers@yale.edu and
the phone number is 1888-234-4YCC.  This evening Francine and
Lynn are pleased to welcome Dr. Tara Sanft.  Dr. Sanft is an
Assistant Professor of Medicine and Medical Oncology and Medical
Director of Adult Survivorship for the Connecticut Challenge
Survivorship Clinic at Yale Cancer Center.  Here is Francine
Foss.Foss
Let us start by having you tell us a little about what you do in
your role in the Survivorship Clinic?Sanft
 I act as Medical Director of the Survivorship Clinic, which is
working in collaboration with multiple different care providers
including a social worker, registered dietician, physical
therapist, and advanced practice nurse to give multidisciplinary
care to cancer survivors.Wilson
Tell us a little bit more about what survivorship is and are there
specific phases of cancer survivorship, short term, two years, five
years, give us some details about that.Sanft
 There are multiple ways that you can approach cancer
survivorship.  You can look at it as having no disease after
the completion of treatment, or you can look at cancer survivorship
as the process of living with, through, and beyond cancer.  In
1985, a physician named Fitzhugh Mullan published an article in the
New England Journal of Medicine titled The Seasons of
Survival.  In that article he broke down survivorship
into three distinct phases including acute, extended, and
permanent.  I can give you a little bit more detail about each
of those.  The acute phase of survivorship really begins at
diagnosis when the patient is told that they have cancer.  At
that point, they are fighting for survival, as he puts it, and
undergoing treatment and tests and often times the patient is in an
area that is very scary for them, and family members and caregivers
can be overlooked in this phase of survivorship.  Extended
survivorship is really after that initial treatment is completed
and the patient goes through a transition period into
surveillance.  This can be characterized by some feelings of
uncertainty and being unsure where to go from in terms of the
medical treatment after treatment is completed; what next step
should be taken.  At the Yale Survivorship Clinic, we focus on
giving patients care and guidance in the extended survivorship
phase.  Permanent survivorship is characterized years after
diagnosis when the risk of recurrence tends to be much lower and
patients can go on and live indefinitely having a history of
cancer.Wilson
Is there ever a point during the surveillance or extended phase
where obviously someone is alive and surviving, where you feel like
it is not necessary to follow someone any longer? Do you think it
is important to have some relationship in a follow-up program with
each patient for their entire life?3:47 into mp3 file 
http://yalecancercenter.org/podcast/oct3110-cancer-answers-sanft.mp3 Sanft
 I think it is important for patients to have coordinated care for
the remainder of their life in some aspect of oncology and primary
medical care and I think it is critical to have a multidisciplinary
approach.  At our Survivorship Clinic, we follow patients over
the period of several months including right after they finish
their initial therapy and then two, two-month visits in
follow-up.  We do not assume long term care of patients so we
help them with their extended survivorship phase, but we put them
back into the community for their permanent survivor care.Foss
Can you tell us a little bit about the Survivorship Clinic at Yale?
You mentioned that patients start coming there when they finish
their treatment, but who do they see and what is the process for
the patient?Sanft
 What our goal is, is to provide guidance for patients to take the
next steps in helping them live a healthy lifestyle in order to
maximize their quality of life and to maximize their
longevity.  We see patients with all different diagnoses who
have completed their initial therapy.  Patients that come to
visit us do not necessarily have to have completed their treatment,
even at Yale, so we are open to everyone in the community.Foss
This Survivorship Clinic at Yale, I understand, was the first one
in Connecticut. Has this concept of survivorship caught on
throughout the country?Sanft
 Absolutely, if you look back over time the word survivor only
started to become assimilated with cancer care in the 1980s when
the National Coalition for Cancer Survivorship got together and
started to raise awareness, and then throughout several decades
with the help of people like the Connecticut Challenge and the
Lance Armstrong Foundation, the awareness increased to now where we
have many dedicated clinics throughout the nation.  The Yale
Survivorship Clinic is just one of those, but there is a network
throughout the United States.  The field is still small enough
that we all feel it is very important to collaborate and here at
Yale where are working on multiple areas of collaboration.Wilson
What are some of the components to excellent survivorship care?
This is the two part question, so after discussing that, can you
let us know what a typical visit is like for a patient after they
walk in the door?Sanft
 I characterize the components to good survivorship care with four
words, and I can expound on each of these, but to me, good
survivorship care includes surveillance, prevention, intervention,
and coordination.  Surveillance focuses on monitoring for
recurrence or development of a new cancer.  There are specific
surveillance guidelines depending on what the diagnosis has been
and it is important that not only the oncologist, but the primary
care physician, is aware what those surveillance recommendations
are.  Prevention encompasses all cancer related side effects
as well as the comorbidities that having a diagnosis of cancer puts
you at risk for, such as hypertension, hyperlipidemia, obesity, and
metabolic syndrome, and cancer survivors are often times at
increased risk for developing some of these longstanding serious
comorbidities.  Intervention describes the7:46 into mp3 file 
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treatment and symptom management that the patients will come up
with sometimes years after diagnosis and it is important to be
aware of these things and then act appropriately to maximize their
quality of life. Perhaps one of the most important components of
survivorship care is coordination, again, many patients are living
beyond their cancer diagnosis for years and sometimes decades, and
they will be seeing multiple providers and in survivorship care, it
is really important to delineate all involved with the care of the
patient and who is responsible for which aspects of that care.Wilson
Take us through a typical visit.Sanft
 At the Survivorship Clinic at Yale, we see patients once weekly in
a half-day session and when the patient comes through they will see
four different providers, they will see a social worker, a
registered dietician, a physical therapist, and either myself or an
advanced practitioner.  With each of these consultations, the
patient will receive individualized counseling regarding their
diet, their exercise, again focusing someone on the coordination of
their follow-up medical care, and then they also get a chance to
talk about the nonmedical and nonphysical aspects of how the cancer
diagnosis has impacted their life.  They also may be referred
to other types of clinics as needed, such as genetic
counseling.  We also have a sexuality, intimacy, and menopause
clinic at Yale.  We also have a Complementary Medicine Clinic
at Yale and so there are multiple different avenues that patients
could be plugged into, and different services that they could be
referred to.  After that initial visit, we will follow-up with
patients two months later to see how they are doing, make
adjustments to their individualized care plan and then another two
months after that we will make a final visit, and at that point we
usually see some behavior changes and very positive effects that
the clinic has had on patients.  If they need to be seen again
down the road, we do not turn anyone away.Foss
Do you include family members in these visits? Do family members
generally come and is there counseling available for them as
well?Sanft
 There is, but the majority of patients that we have seen
historically come through by themselves, but when they do bring
significant others we incorporate them into the visits, and
actually the definition of a cancer survivor includes family
members and caregivers and anyone who is impacted by that diagnosis
of cancer and so it is important to keep the supportive people in
mind when you are offering these types of services.Wilson
Your background is in oncology and palliative care, tell us a bit
about how palliative care integrates into survivorship.Sanft
 Like survivorship, palliative care should be introduced upon
diagnosis, so I believe that the concept of survivorship care
should be introduced early and I also believe that palliative care
should be introduced early, and what I mean by that is all patients
should have the chance to have aggressive symptom management. 
They should all have the chance to be offered spiritual
support,11:19 into mp3 file 
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counseling, and financial services, and so at Yale I feel like the
philosophy is to take care of the whole patient, that includes a
palliative care, it includes survivorship care, and it really means
multidisciplinary care that begins at diagnosis and continues
throughout the remainder of the patient's life, regardless of
whether they go into a permanent survivorship phase, or into end of
life issues and hospice care.Foss
Tara, can you tell us what kind of cancers they are seeing in the
survivorship clinic?Sanft
 To be honest we have seen all different tumor types and patients
with multiple different diagnoses and looking through the history,
it seems that we have seen at least one of everything, and so
patients should feel reassured that we are happy to see anyone with
any particular diagnosis.  The most common patient that comes
to our clinic tends to be the breast cancer survivors, but we have
also seen multiple patients with a history of lung cancer,
lymphomas, and stem cell transplant patient recipients, so we have
run the gamut in terms of the types of patients we have seen.Foss
Do you include children as well in your clinic?Sanft
 Survivors of childhood cancer are often referred to our HEROS
Clinic, which is also offered at Smilow Cancer Hospital and that is
a program that is offered through the Childrens Hospital as well
and the Medical Director of that is Dr. Nina Kadan-Lottick.Foss
Can you tell us a little bit about the interaction as you move
forward with patients? You are starting with a patient who comes in
probably with lots of issues, as you move forward do the issues
change?Sanft
 Absolutely, there are lots of different ways to look at issues or
side effects.  Right after treatment, almost all patients
experience some degree of fatigue, and I think that it is very
important to be mindful of that.  They may also be dealing
with hair loss, physical limitations such as maybe a decreased
range of motion in their shoulders, especially in women who have
had an axillary lymph node dissection after breast cancer
surgery.  Patients may require intensive rehabilitative
services, for instance, patients with sarcoma who have undergone
limb-sparing surgery may have some physical limitations after their
diagnosis and also many patients report a reduced capacity for
exercise, and a decreased tolerance to complete a work day and
those are often times symptoms and issues that come up right after
initial treatment is completed.  In the long term phase of
care, other issues that come up include chronic numbness, pain, or
swelling that can be associated with either surgery, radiation, or
chemotherapy.  Other issues that are important to pay
attention to that often surface years after therapy are those
revolving around reproductive health and infertility.Wilson
We are going to take a short break for a medical minute. 
Please stay tuned to learn more information about survivorship with
Dr. Tara Sanft.15:13 into mp3 file 
http://yalecancercenter.org/podcast/oct3110-cancer-answers-sanft.mp3 Wilson
Welcome back to Yale Cancer Center Answers.  This is Dr. Lynn
Wilson and I am joined by my co-host Dr. Francine Foss.
 Today, we are joined by Dr. Tara Sanft and we are discussing
survivorship.  Dr. Sanft, can you talk to us a little bit
about some of the nonphysical effects of a cancer diagnosis and how
that is addressed both in the short term and the long term?Sanft
 The nonphysical effects include issues with uncertainty or the
inability to determine the meaning of the illness.  Patients
can have a lot of issues regarding 'why me' or 'did I do something
to cause this', or going forward 'how can I prevent my cancer from
coming back'.  At the survivorship clinic, we address these
issues and try to use the best evidence that we have to instill
healthy life style behaviors in patients in order to maximize their
longevity and decrease the risk that they may have a
recurrence.  Other issues in the short term that can spill
over into the long term include feelings of anxiety, depression,
and distress.  At Yale, we have a multidisciplinary approach
and there are multiple people who specialize in these sort of
psycho-oncology outcome measures and we are looking at integrating
interventions and screening tools throughout the cancer continuum
including survivorship to address some of these distress levels or
signs of depression and maximize our intervention to help these
patients move forward.Wilson
It sounds like what happens in the Survivorship Clinic is that
there is really a vast array of things that can be provided for a
patient.  Tell us how a patient can get to the Survivorship
Clinic, how can they find out about it, how can they get an
appointment, do they need their doctor to refer them or can they
call themselves?Sanft
 I am glad that you brought that up.  There are multiple ways
that a patient can find us.  First of all, they can call us at
the clinic.  This number is (203)785-CARE, or numerically, it
is (203)785-2273.  Any patient can call us and they will talk
to our clinic coordinator and we can determine when the best time
is to see that patient.  Alternatively, we also get multiple
referrals from oncologists, not only that, but other critical
members of the care team including physical therapists and
social19:13 into mp3 file 
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workers, and we have even had women that work at the check-out desk
at Smilow Cancer Hospital help refer a patient to our clinic, so
there is no one way that a patient can find us, there are multiple
ways.  You can find us on the Web at yalecancercenter.org or
a patient can Google us at Yale Survivorship Clinic.Foss
Tara, when you see a patient, do you interact with their treating
physician, say with their referring oncologist? And what is the
relationship that develops between the referring physician and the
Survivorship Clinic staff?Sanft
 We make every effort to coordinate care and that includes very
detailed communication with the primary oncologist and other
identified members so if the patient tells us that they will see a
surgeon, a radiation oncologist, a primary care physician, or a
cardiologist going forward, what we do at the Survivorship Clinic
is make a detailed plan regarding not only lifestyle interventions,
but medical follow-up and then we communicate this plan to the
providers that the patient specifies.Foss
Can you tell us a little bit about some of the things that you have
learned?  You have been working in survivorship now for a
number of years, what are some of the things that you have learned
about patients and what patients gain from their experience with
cancer?Sanft
 I feel that cancer patients teach us a lot on multiple different
levels and in the realm of survivorship, something I have learned
recently is how patients can take a diagnosis that can otherwise be
very devastating, and turn it into something life changing and very
positive, and I can share a story about that with you.  Jeff
Keith was diagnosed at age 12 with an osteogenic sarcoma, or cancer
involving the bone, and this required removal of his right leg,
including the knee and below.  He continued from age 12
forward playing sports and doing multiple things in high school and
through college.  After college Jeff Keith became the first
amputee to run across the United States.  He raised 1 million
dollars and donated that money to the American Cancer
Society.  Jeff Keith went on to found the Connecticut
Challenge bike ride and has been the founder and very big supporter
of the Survivorship Clinic at Yale.  I think that examples
like this really are inspiring and show us how a cancer diagnosis
can shape a patient's life.  Not every cancer survivor has
major life altering changes that happen, but I think this shows us
how a cancer diagnosis in one patient affects countless people
going forward.Foss
Do you feel that most patients develop a closer relationship with
their family members after going through a cancer experience?Sanft
 I do, from my personal experience seeing patients who have had a
diagnosis of cancer, I think it bring things to the forefront and
helps put into perspective what is important to that patient,
whether it be their family members, their significant others, their
friends, maybe decreasing stress in their life, changing their job,
these are all different things that patients have reported back to
us coming through the Survivorship Clinic.23:02 into mp3 file 
http://yalecancercenter.org/podcast/oct3110-cancer-answers-sanft.mp3Foss
Another question I had is in reference to a number of patients that
I have treated within lymphoma, and we have people coming
frequently for chemotherapy week after week after week, and then
when they are all finished and they are cured, they do not come in
to see us anymore, they come every three months or so and a number
of patients have expressed feelings of loss for the caregivers, the
nurses, and the staff that they were used to seeing all the
time.  I wonder if you have seen that as well and how you deal
with that?Sanft
 Yes, I have seen that and it has also been described in
literature, and one article was looking at focus groups of this
exact same scenario and the patients reported feeling like a
warrior without a war, and so what the Survivorship Clinic at Yale
helps to do is to transition those patients who have gone from very
intense, sometimes very rewarding medical management and have built
very deep relationships with their nurses and ancillary staff and
their oncologists, and we help them transition from that intense
monitoring to the longer term follow-up and I think the
Survivorship Clinic at Yale really helps answer some of those unmet
needs in that period of time.Wilson
Here at Yale, we have a great variety of cutting edge clinical
trials and research that patients can participate in and be a part
of, typically at first diagnosis, what sort of opportunities are
there for the survivor to participate in research, are there any
opportunities?Sanft
 Yale actually has a longstanding history of conducting research
focusing on survivorship and we have had a number of groundbreaking
trials that have investigated specifically exercise and lifestyle
interventions in the survivorship population, and looking at
outcomes such as obesity, different levels that may be associated
with tumor markers, and other things such as body composition and
bone health.  Currently, we have several studies going on in
different populations looking at exercise as an intervention and
its effect on things such as joint pain and women with aromatase
inhibitor induced arthralgias, which is a very common side effect
in this population, and also the effects of exercising women with a
history of ovarian cancer.  This tends to be a population that
has had high risk for problems with weight and obesity and we also
have studies going on looking at cardiovascular fitness and bone
health in the breast cancer survivorship population as well.Foss
Can you tell us a little bit about how cancer survivorship has
changed over the last five years? I remember going to American
Society of Clinical Oncology meetings year after year and it seems
like it has only been recently that we have even talked about
survivorship and things have really changed. Such as at the last
meeting I went to last year, I think it must have been about 20% to
25% of the meeting was devoted to the issue of survivorship.Sanft
 Last year they had an entire track that was devoted to
survivorship and I believe that was probably the first of its
kind.  Again, I think that survivorship really started to get
some attention as far back as the 1980s, but if you look in the
literature the topic has exploded in the past five years, and
again, this has been with the support of people like Jeff Keith who
started the Connecticut Challenge and of course Lance Armstrong who
started LIVESTRONG or the Lance Armstrong26:58 into mp3 file 
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Foundation.  They have really helped lay the groundwork to
start things like survivorship clinics and survivorship programs,
and also there has been an enhancement in terms of the education of
providers like us.  In the future, I think what should happen
is survivorship should be introduced as an integral part of cancer
care so that every cancer patient has exposure to survivorship care
and I believe in order to make this happen, we have to think big in
terms of all different types of services offered to cancer
survivors and focus also on educating physicians in terms of giving
that specialized care and making things like fellowship programs
including these sorts of tracks at meetings such as ASCO and
really enhancing community awareness and training within the
medical field.Foss
At this point, is cancer survivorship a specialty within
oncology?Sanft
 It is becoming a specialty within oncology, but it is not its own
dedicated training track as of yet.  There is definitely room
for that and I think that in the next five years we may see that be
a part of our medical training.Wilson
You had mentioned how a patient or a physician can get in touch
with the Survivorship Clinic.  Where is the clinic? Is it in
Smilow? What sort of proximity is it to the clinicians taking care
of patients in their therapeutic phase?Sanft
 It is right in the same area that patients receive their
treatments so we are located on the fourth floor of Smilow Cancer
Hospital.  We meet once a week, right now on Wednesday
afternoons, and any patient can find us by coming up there or
giving us a call, again at (203) 785-2273.  We feel it is
important to be a part of the Cancer Hospital so that patients are
able to see us and aspire to come to our clinic when they are
finished with their treatment.Wilson
What do you think are some of the important things that a cancer
survivor should know, or be thinking about?Sanft
 In my opinion, I think that for cancer survivors the most
important thing that they should know is who is involved in their
care. And while this may seem like an obvious aspect of what a
patient might know, there has actually been some literature that
shows patients are often unsure about who is responsible for
monitoring them going forward and so I think it is our job as
providers to help patients know who is responsible. With such a
mobile society, and patients living decades after diagnosis, the
chances are that they will move around and possibly have multiple
different providers, and I think it is really important for them to
keep track of what is recommended in terms of surveillance and
follow-up care and who is going to be providing that care for
them.Foss
 Tara, if there is a patient listening out there who had a cancer
diagnosis say many years ago, 5, 10 or 15 years ago, would that
patient still be eligible to come to the Survivorship Clinic?30:30 into mp3 file 
http://yalecancercenter.org/podcast/oct3110-cancer-answers-sanft.mp3Sanft
 Absolutely, actually a couple of weeks ago we saw a patient who
had had a diagnosis of testicular cancer 38 years prior, and he had
just now heard about us and he came to our clinic and found it very
beneficial.Wilson
Is the clinic always available, you mentioned you have a meeting on
Wednesday, but can patients come in on any day, how does the
schedule work?Sanft
 We would love to be available to patients all day every day, but
as it stands right now we meet once weekly and we will work with
the patient to help them find a time that is best for them to come
and visit us, but we have a half-day session weekly and we would
hope to expand that and we are talking about that in the
future.Foss
Are there any programs that are planned at this point to educate
the physicians in Connecticut about the survivorship program, and I
think that includes not only the medical oncologist, but all the
community physicians out there as well that are seeing these cancer
survivors in their practices?Sanft
 Once yearly we at Yale support a Survivorship Summit that provides
education to all different types of providers and we have a
different focus every year, so last year we focused on sexuality
but other topics that we might cover include nutrition and
psychosocial support, and this is a conference that is meant to
enhance the education of all different types of providers. 
There are other programs like this offered throughout the state and
I think it is important that healthcare providers take the time to
learn about these issues because there are some very specific
things that we need to know going forward and taking care of this
population.Wilson
Does your group get into the community, or are there survivorship
programs around the United States that do that sort of thing?Sanft
 There are programs like this out there for survivors, and
interestingly, there are often open invitations for survivors to
attend these types of conferences and they will be sitting in the
breakout sessions and participating in small groups, and so beyond
attendance at some of these professional research or educational
programs that are offered, there are multiple support groups and
intervention specific for survivors that are offered throughout the
state and then of course throughout the nation as well.Foss
It sounds like most of your patients have a positive experience and
actually benefit significantly from coming to the clinic.Sanft
 Absolutely, I firmly believe that and I believe that we have
something to offer everyone at Yale and I believe that the
Survivorship Clinic is a very valuable experience that all patients
should partake in.33:39 into mp3 file 
http://yalecancercenter.org/podcast/oct3110-cancer-answers-sanft.mp3Dr. Tara Sanft is an Assistant Professor of Medicine in
Medical Oncology and Medical Director of Adult Survivorship for the
Connecticut Challenge Survivorship Clinic at Yale Cancer
Center.  If you have questions for the doctors or would like
to share your comments, visit yalecancecenter.org or you can also
subscribe to our pod cast and find written transcripts of past
programs.  I am Bruce Barber and you are listening to the WNPR
Health Forum on the Connecticut Public Broadcasting
Network.