Cancer Answers: Sexuality and Cancer, April 27, 2008

Dr. Sharon Bober and Ellen Matloff, Sexuality and
Cancer April 27, 2008Welcome to Yale Cancer Center Answers with Drs. Ed Chu and
Ken Miller.  I am Bruce Barber.  Dr. Chu is Deputy
Director and Chief of Medical Oncology at Yale Cancer Center, and
Dr. Miller is a Medical Oncologist specializing in pain and
palliative care, and he also serves as the Director of the
Connecticut Challenge Survivorship Clinic.  If you would like
to join the discussion, you can contact the doctors directly at canceranswers@yale.edu or
1-888-234-4YCC.  This evening, Dr. Miller welcomes Dr. Sharon
Bober and Ellen Matloff.  Dr. Bober is the Director of the
Sexual Health Program at Dana-Farber Cancer Institute through their
Lance Armstrong Foundation Adult Survivorship Clinic, and Ellen
Matloff is the Director of Cancer Genetic Counseling at Yale Cancer
Center.Miller
 Sharon and Ellen, thank you so much for joining us.Bober/Matloff Thank you.Miller
 Sexuality is a very large topic.  As you know, a lot of
physicians and practitioners are not comfortable talking about
it.  Let's start by talking about that.  Why are people
uncomfortable, and what do you suggest for us as clinicians, and
patients, to help us become more comfortable?Bober
 First of all, a lot of the time we do not have a lot of practice
in talking with our patients about this. As clinicians, most of us
do not get a lot of training in how to speak with patients about
sexuality.  It is a bit of a sensitive topic and for fear of
either embarrassing the patient, or out of fear of not knowing how
to talk about it ourselves, we often shy away from the topic rather
than bring it up.Miller
 Asked a different way, from your experience, how often is it on
people's minds when being treated for cancer?Bober
 Sexuality is one of the big issues that come up for many
patients.  It is often one of the issues that people are not
prepared for, and it is a major part of quality of life for most of
us.  I would say it is on people's minds quite a bit.Matloff
 If I can jump in here Ken, I will tell you that as a genetic
counselor, I had no idea that this was a big issue for our patients
who test positive for mutations or learn that they are high risk
for cancer. Many of them are already cancer survivors and have had
prophylactic surgery of either their ovaries and/or their breasts.
Who would think that the biggest problem after all of this is
sexuality?  Certainly, we did not anticipate this, but we have
a discussion group for women who carry BRCA1 and 2 mutations. Part
of the discussion group is online, and people E-mail unanimously,
and share the intimate problems that they are experiencing. Much to
our surprise, what came up as the number one issue was sexuality,
and that is how we realized, "Wow!  We are really missing the
boat here, and not only are we missing it, but it is not being
addressed by any of their clinicians." That is how we realized we
needed to address this.3:04into mp3 file 
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 After or during treatment for cancer, who do people talk to, or do
they just not talk about it at all?Bober
 That really depends on how connected people are to other
patients.  There are certainly peer support groups.  This
does come up, as Ellen mentioned, when there are opportunities,
whether it is on a LISTSERV or in a support group, certainly for
breast cancer patients. This comes up a lot when you talk with
people who do these kinds of groups, but for folks who do not have
a community or a support group where the topic comes up, I think it
is often very isolating, especially when clinicians are not
bringing up the topic and patients feel that there is something
terribly wrong with them and do not know that other people have the
same problem. It in itself is a big issue just being isolated.Matloff
 One thing that we found is that people are so relieved to learn
that they are not the only people having this problem. Let's face
it, you go to your oncologist and you speak about everything, your
hot flashes, lymphedema, all of these problems, and sexuality is
not usually on the checklist.  A lot of people do not even
realize that the problems they are having could be related to their
treatment or their surgery and they feel, as Dr. Bober said, very
isolated.Bober
 I think people also do not realize that many of the problems are
treatable.  If folks are dealing with something that seems
uncomfortable, painful or embarrassing and assume that they are the
only one dealing with it, there is also a big misperception about
what is treatable and what is manageable. If you feel like there is
nothing you can do about it, then that's all the more reason why
folks might be reluctant to even bring it up.Miller
 In a minute I want to talk about some of the special issues for
men and some of the special issues for women, but let's cover a
couple definitions that may be very basic, but I think we should
put them out there.  How do you define libido? What is the
difference between intimacy and sex?  What are your
thoughts?Bober
 Certainly sexuality covers a very broad range.  Sex is not
just about an active penetration or about physical giving or
getting pleasure.  Sexuality really refers to how we are in
the world in our bodies, how we experience ourselves as being able
to be sensual, as being able to have physical intimacy that again
may or may not involve sex in the traditional sense.  I think
it is also a matter of saying that physical intimacy and sexuality
are a part of the human experience throughout our lifespan. It is a
part of who we are when we are born until we die. Sexuality and
sensuality are a part of the human experience in a very broad
sense.Miller
 Your point is very well taken that it is a very broad experience
in terms of the fact6:19into mp3 file 
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 that being intimate does not necessarily mean being physical in a
specific kind of way. I have heard in your talks that a lot of it
is communication.Bober
 Certainly, a huge part of sex is about communication.  Often
sex therapists will say that the largest sex organ in our bodies is
our brain, and that is not by accident that they would say that. So
much of how we feel about ourselves, our bodies and our partners,
really has to do with what we think, our perceptions, and again,
the point around communication is that most of us are not
comfortable talking about sex under the best of
circumstances.  Often we shy away from direct communication,
frank conversation about sex, probably because of our culture, how
we are socialized, what we learn from our parents and our
communities, and that is the case before we get a cancer
diagnosis.  It is all the more difficult to broach this topic
when we might feel ashamed or embarrassed after cancer
treatment.Miller
 Ellen, if people are facing those issues, communication issues,
what is your experience, after someone is diagnosed with cancer,
what happens with some of those issues?Matloff
 It is interesting, and for people in a partnership, the main goal
is to survive this cancer. That becomes the goal and everything
else is lost.  How is your quality of life after this cancer,
what is your body image like, and how is your sexuality?  We
are so glad that the person survives, that some of these other
things fall to the wayside. Now that we are better at treating
cancer, there is room to explore these other issues. Thinking
particularly about women who are faced with a preventative or a
prophylactic surgery, one woman comes to mind. She is in her
mid-40s, absolutely gorgeous, very attractive, newly divorced, out
on the dating scene, and her biggest concern about having a
prophylactic oophorectomy was that somehow she would not be a
sexual being anymore.  She was not interested in having
children, but she said, "I just picture myself like a dried up
raisin."  That was her expression, and she was very sad about
losing her sexuality. Body image and self-perception as part of
sexuality is such an important topic and we cannot just say to
patients, "Listen, you have got to do this because it reduces your
cancer risk, the rest you will get through."  We need to talk
through all of the issues so that we do not leave these patients
alive, but with no support for quality of life.Miller
 Since we are talking about women, what are some of the changes in
body image that women talk to you about?Bober
 As Ellen said, when you look at surgery as a major treatment for
disease, whether it is preventive or whether it is after someone is
diagnosed, we are looking at loss of ovarian functioning, loss of
body parts, sensation, such as when you have a mastectomy, and that
has a very direct and significant impact.  I think that
for9:36into mp3 file 
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 women in general, one of the common issues has to do with
menopausal symptoms.  There are a variety of menopausal
symptoms, particularly dealing with sexuality. You are looking at
vaginal dryness and vaginal atrophy that happens when you have an
abrupt loss of estrogen.  Many women are not prepared for the
dramatic change.  This is different than a natural menopause
where it is slow and happens over time so your body has a chance to
adjust.  Lots of women in natural menopause still complain of
very real issues, but there is much more drama when it is surgical
or chemotherapy induced, again same abrupt loss of estrogen. Women
who are dealing with pelvic surgery or any kind of pelvic radiation
also suffer severe sexual dysfunction over time, partly from
vaginal atrophy; tissue that one was elastic now is hard, fibrotic
as we call it.  There may also be vaginal narrowing. 
These are functional issues that can be treated but are very
painful, are disruptive to sex lives, and quite honestly when women
have pain during intercourse or their bodies have changed, they are
not comfortable, it is not surprising then that there is also a
lack of desire.  Sometimes, there is lack of desire because of
lack of estrogen, and there is partly a hormonal drive to that, but
partly when you do not feel comfortable in your body when you have
gone through abrupt surgery and hormonal chemotherapy intervention,
you are also not feeling like yourself, and the issues of desire
and low libido get tied in with all of that as well.Matloff
 Sharon, I have got a question for you. Listening to you speak, if
I were facing a prophylactic surgery, or even a surgery for cancer,
vaginal atrophy, vaginal dryness, is there a way to get to the
other side for most women?Bober
 It is a great question.  I am glad you asked it.  The
answer is yes, emphatically yes.  Many of these issues are
absolutely treatable.  Vaginal dryness is easily treatable
with a variety of options from over-the-counter lubricants to
bio-adhesive gels, vaginal moisturizer and non-hormonal treatments
that are very effective.  Lots of women do not know about
them, but they work.  There are also a number of treatments
for other issues.  If you are dealing with pelvic radiation
there are a variety of treatments from pelvic PT, physical therapy,
to a variety of other options that are functional and easy to use,
but women need to learn about them.  There needs to be some
coaching and some education.Miller
 I am going to ask you the same question about a man who has
prostate surgery and has erectile dysfunction, what can we do for
him?Bober
 Unfortunately for many men who are dealing with prostate cancer,
erectile dysfunction is a huge part of the picture and does not get
talked about or addressed.  What happens now, in the world of
Viagra and Cialis, is that men will try a little blue pill, it does
not work, and then they feel that they failed treatment. 
Unfortunately, what we know is that most erectile dysfunction after
prostate cancer has to do with nerve damage.  We also know
that radiation therapy is12:47into mp3 file 
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 damaging to the nerves for men in terms of erectile dysfunction,
and this is best dealt with using other options besides
Viagra.  There are options such as using medication, which can
be injected, and a variety of other devices men can use such as a
vacuum pump, which is easy to use.  They are not painful and
they work, but men do not know about them and unless they have had
a conversation, typically with a urologist who can give them some
coaching, this is not something that comes up.Miller
 It is wonderful talking about it on this show, and in a small way
starts to promote some openness among clinicians who treat people
with cancer.  We would like to remind you to e-mail your
questions to us at canceranswers@yale.edu.  We are going to
take a short break for a medical minute. Please stay tuned to learn
about sexual health with Dr. Sharon Bober and Ellen Matloff.Miller
 Welcome back to Yale Cancer Center Answers.  This is Dr. Ken
Miller, and I am here with Dr. Sharon Bober who is Director of the
Sexual Health Program at the Dana-Farber Cancer institute, and
Ellen Matloff, who is Co-Director of the Cancer Genetic Counseling
Center at the Yale Cancer Center.  We left the discussion
talking about rehabilitation, about how people get back to normal
functioning.  I wanted to ask, when someone has gone through a
major surgery or through cancer therapy, is there a period of
grieving?Bober
 I think there absolutely is.  It is critical to be able to
acknowledge that there is loss.  People's bodies are not the
same.  People's lives are not the same.  This is
certainly a different chapter, a new chapter, and I think it is
critical to be able to acknowledge that loss and give people space
to own that grief and then to be able to ultimately accept that
within this new chapter. There is still plenty of room to
rediscover pleasure, to rediscover sexual functioning.Matloff
 People go through a lot of changes in their sexuality, after a
pregnancy a lot of15:48into mp3 file 
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 women say that their body does not look the same, it does not feel
the same.  A lot of men have changes in erectile functioning
as they age, and so, this is just another change in the pathway of
life, when people have a prophylactic surgery, surgery or treatment
for cancer. Our bodies do change, and we need to adjust to those
changes over time.Miller
 We had an e-mail from Marsha who leaves in Longmeadow, MA. She
said, "I have had a mastectomy and I feel different about my body.
I have no libido."  If Marsha were sitting here now, what kind
of advice would you give?Bober
 Unfortunately, this is a common problem.  Lots of women deal
with it as well as men.  Libido is complicated because there
are a whole lot of ingredients that go into that recipe. 
Libido is influenced by everything from our energy level, to the
medications we take. It is mainly influenced by how we feel, what
we think and what is in our minds as well as our bodies.  I
would say to Marsha, as I would with anyone who is talking about
libido, that I want to learn more about what it is that she is
missing, the sense of loss again, what it is that she used to have,
what things used to be like, and what she is hoping for.  That
would be a real starting point.  I would also start the
conversation with Marsha about pleasure.  So much of the work
that we do in cancer and sexuality rehabilitation has to do with
shifting our focus from sex, maybe in the old sense or in the
traditional sense, to regaining a sense of pleasure in our
bodies.  Trying to figure out what is pleasurable, using
perhaps a set of simple exercises to rediscover pleasure,
sensuality, thinking about massage, thinking about touch, thinking
about therapeutic touch as a way to start re-igniting a sense of
pleasure and a sense of desire.  There are a number of ways to
reinvigorate our senses that might also include exercise or stress
management; those would be some of the starting points.Matloff
 I would add to that one thing that has surprised me when you have
discussions with people about libido. Sometimes the answer about
why they are not feeling sexual has nothing to do with them. I had
a patient who said to me that she feels like her husband now views
her as a cancer patient and that he was so loving and wonderful
during her treatment, but now that she has had a mastectomy with
reconstruction, he is almost afraid to touch her. It is a real
sexual turnoff to her to feel like a cancer patient in the middle
of this.  We talked about lingerie and different ways she can
broach this subject. I would also like to speak about some of our
patients who are gay that are often left out of the picture. They
have similar problems of, how do you talk to someone who still has
breasts about the fact that you do not, and how do you bring these
issues up?  Often times, libido is driven by the fact that you
do not think your partner is interested in you anymore or that your
partner is afraid of your body or just does not know what to
do.  This goes back to communication.19:03into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Apr-27-08.mp3Bober
 Back to communication, and sort of a similar anecdote, this might
be the case whether it is a male and a female partner or two female
partners with breast cancer.  We often hear the story that
partners, as you said Ellen, do not want to touch a spouse or
partner because they are afraid of hurting them.  What happens
is that this partner is not touching her for fear of hurting her,
and the woman then feels, of course, they are not touching me
because they are not interested.  They are not touching me
because they cannot stand my body or they do not want to look at
me, and nobody talks about it because each partner is in a sense
trying to protect the other. But what happens is there is a lot of
silence there, and there is not an opportunity to even straighten
out what the miscommunication is about.  Even just being able
to figure out how to talk about it can open the door to a whole lot
of conversation, which might end up igniting a very positive
interaction.  Suddenly somebody is willing to try and willing
to experiment and touch each other, and people then find themselves
feeling somewhat more aroused.Miller
 If you had a couple in the room that you were counseling now, and
they were facing that very issue, how would you get that
conversation going?Bober
 Certainly it is important to know a little bit about the history
of the couple, as with any of us individually. We find out what
they are comfortable with, what they were used to doing beforehand,
their history and what really affects who they are currently. It is
important for any of us who do this work to be sensitive to
someone's history and values. These are all things that need to
come into the room and into the conversation in order to get
started. It is also important to be able to ask a couple what it is
they are hoping for.  To be able to speak with each partner to
identify where they would like to go, where they are hoping to get
to, and then start again, not with a focus on sex ironically, but
starting with a focus on pleasure. Perhaps we would start with a
simple set of exercises in terms of rediscovering what is
pleasurable, how each partner can give and receive and start
slowly.Miller
 I have heard you use the term desire diary.  What is that all
about?Bober
 A desire diary is a wonderful technique that we use and it has to
do with cognition, another word for how we think about things. A
desire diary is a way to tie people back into their thoughts, into
their awareness of being in a world in a sexual way that they might
not typically be aware of.  For example, if you walk around
saying, "I do not have any libido or desire. I just do not feel
much anymore," you kind of have a sense of yourself as being
deadened. And a desire diary, as we know in general when we ask
people to do journaling, for example therapeutic writing after an
illness, it is a really wonderful technique to help people connect
to themselves.  Sometimes, when we start to write about our
experience, keep notes about our experience, we become aware of
thoughts or feelings that we are not typically aware of, and this
also extends to sensuality.  If22:11into mp3 file 
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 someone starts to keep a diary, and literally you can use a piece
of paper, it does not have to be anything fancy, but they can just
make notes to themselves about something that they see, smell or
hear, anything that might touch one of their senses and strikes
them as being interesting, sexy or sensual. They write it down and
try to become aware as they go through their day.  It is
really interesting what people might find at the end of the day, "I
had not realized it, but I did notice I was in the park and I saw
someone walk by and she looked kind of cute, or he looked kind of
nice", and it does not mean you act on it.  It does not mean
that you are doing anything that is outside of the context of a
partnership or monogamy, but it just gives you a chance to become
aware of yourself in the world in a way that you have not really
connected to in a while.Matloff
 When we think of sexuality, often times we think of sex between
two partners.  I had a patient who was having a prophylactic
bilateral mastectomy with reconstruction, and she said to me, "I do
not know what to do because I have a young daughter, and we have an
open door policy in my house.  She sees me and talks to me
when I am in the shower and she sees me naked, I do not know after
this surgery how to suddenly shift gears so that she cannot see me
anymore."  And my answer was, "Oh well!  She should see
you after the surgery."  And she said, "What are you talking
about?  I do not want her to see that I have had my breasts
removed and reconstructed, I cannot believe you would suggest
that."  And I said, "Certainly with a fresh incision and with
drains you are going to want some privacy, but when that
reconstruction is complete you need to go back to the routine, the
way it was, introduce her to your body so that she can see mommy is
okay, and that this is part of sexuality and part of body image,
let us face it.  That daughter is at a 50% risk of carrying
that mutation, and if she knows that when she was 6 years old her
mom had a surgery and she looked so bad that she could never see
her naked again, that is scarier than anything else she could
imagine.  Sexuality has not only to do with your partner, but
with how you feel about yourself, how you feel about your naked
body in front of family members.  It really encompasses a
great deal of issues.Miller
 As you know my wife is a cancer survivor, and I think about the
survivorship journey and a lot of what we give to our children is
role modeling of how we deal with these very difficult
situations.Matloff
 That is right.  It really is a gift to be a strong role
model.Bober
 Sometimes when we try something that we are not totally sure that
we are comfortable with, we give ourselves permission to try and
then we see that it is not that bad; in itself, it is a therapeutic
intervention.  For example, Ellen, when you gave that woman
permission to take her shirt off in front of her daughter, the
first time she might see that her daughter walks right past and
does not even notice, or notices for a minute and keeps
going.  The mom herself, then, has an25:15 into mp3 file 
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 experience of realizing, "Oh my goodness!  This is not as bad
as I thought."  And that in itself is a therapeutic
intervention.Matloff
 I learned this lesson in a very interesting way because some of
our patients have a type of colon cancer that causes so many polyps
to form in their colon that they have to have their colon removed.
These families and these children having testing at age 5, find out
that they are somebody going to have to have their colon remove
prophylactically, and they are going to have to have a permanent
ostomy bag or colostomy, and I think, my gosh, how horrible. But
then I watched the video tape of some young children talking about
this, and I was shocked when one of the children said, "Yes, when I
get to be 15 years old, I am going to have a bag like mommy," and
they really did not think it was a big ideal.  The reason
children think it is a big deal is because we make it a big deal,
and if that is how life is in their family, then that is how life
is. Mommy is fine and she functions and deals with this issue, and
they will deal with it too.Miller
 I want to take a minute and talk about men. We've talked a lot
about breast cancer, but what have you observed in terms of men
after major cancer surgery of any kind in terms of returning to
feeling happy, healthy sexually and intimate?Bober
 You know, I think that men have many of the same issues as female
cancer survivors who are facing issues around libido and
fatigue.  Men, certainly after cancer like prostate cancer,
are dealing with very significant high rates of erectile
dysfunction. This is also the case with, for example, men dealing
with bone marrow transplant; anything that stops testosterone
production, similar to women with estrogen production who are
dealing with many of the same issues. It is interesting because the
breast cancer movement has been phenomenal in terms of advocacy and
has raised a lot of issues, including some issues around sexual
health for women, which for men have not gotten the same
attention.  I would say that to some degree men have not
gotten as much attention around this issue, certainly issues such
as testosterone replacement is something that is a very real option
for a lot of men; not so much after prostate cancer which is a bit
more controversial, but certainly bone marrow transplant survivors
find that they get enormous benefit from testosterone replacement.
It is available and needs to be talked about so they know that it
is an option.Matloff
 It seems like when we are talking about male sexuality we really
put a huge amount of pressure and importance on erections.  We
are having a very honest conversation here, if erections are no
longer possible for a man, is his sex life gone?Bober
 That is a great question.  Absolutely not, you do not need to
have an erection in order to have sex; that is the first thing.
This is not just about pleasure and sensuality, but in terms of
penetration, you do not need to have a full erection in28:29 into mp3 file 
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 order to have penetrative sex.  This is also the case for men
who are dealing with other kinds of libido issues.  There is
enormous variety in terms of sexuality.  So, I appreciate you
saying that because certainly erectile dysfunction, although it is
often a number one issue, it is not the reason why you can or
cannot have sex.Miller
 This has been an incredible conversation and leaves me and, I
think, a lot of people out there, with a sense of positivity. 
You can talk about it and you can get help.Bober
 There are a number of really terrific books out there.  There
is a wonderful book called Sexuality and Fertility after
Cancer, written by Dr. Leslie Schover who is a national expert
on this topic.  Also the American Cancer Society and the NCI
has information on their website about sexuality written for
patients.Miller
 Sharon and Ellen, I want to thank you so much for being with us
tonight.Bober/Matloff  It is a pleasure, thank you very much.Miller
 Until next week, this is Dr. Ken Miller from the Yale Cancer
Center wishing you a safe and healthy week.If you have questions, comments, or would like to subscribe
to our podcast, go to yalecancercenter.org where you will also find
transcripts of past broadcasts in written form.  Next week, we
will examine the latest treatment options for patients with liver
cancer.