Sexuality and Breast Cancer | Johns Hopkins Breast Center

(gentle inspirational music)>>Hi, thank you for joining us today. I’m, Elissa Bantug. I’m the Director of
Breast Cancer Survivorship at Johns Hopkins. Today we’re joined by Don Dizon; he’s an oncologist
specializing in women’s cancer at Lifespan Cancer Institute. He’s the Director of Medical Oncology at Rhode Island Hospital, he’s an interest in survivorship with a specific interest in sexual health. Dr. Dizon, thank you for joining us.>>Thank you very much for having me.>>Today we’re going to talk a little bit about sexuality and intimacy
during and after cancer. So to start, can you tell me a little bit about some of the issues
cancer patients face during treatment, after treatment, regarding sexual function?>>Right, what’s so
interesting about the field of sexual health is that
so many of the issues in this arena seem to have started before that cancer diagnosis but when women are diagnosed
with breast cancer, it’s the furthest thing from their mind and they just don’t want to talk about it. The immediacy of the diagnosis, the fear that they might
actually die of this cancer and really needing to
understand the next steps, take first and foremost parts of it so even as we talk about medical therapy after the diagnosis has been established and we talk about the side
effects of treatments, medical oncologists still don’t really bring up the sexual health side of facts because it’s so private and personal and we don’t want to assume things. As a result, we don’t have a great sense of what the sexual health concerns are from the point of diagnosis. What I can tell you is
that from talking to women either during treatment or
immediately following treatment or even a year out after treatment, the major issue they can’t come in with is a lack of desire, just that sense that they really are just not interested in anything sexual. When you dig deeper, it
doesn’t seem like this has ever been a primary issue; it’s more of a secondary problem either because strained relations with their partner about how to move on, changes in their body image by the mere fact they had surgery, by the loss of hair from chemotherapy and then accelerated menopausal symptoms for women who were still menstruating at the time of diagnosis. These are big traumas to their body and they’re still trying to adjust to it but as a result, any
attempt at penetration can be very difficult. Even wearing anything that rubs up against their vagina and pelvic organs can cause chafing, it
can be very uncomfortable and I always explain to women, you know, if something is uncomfortable, or let’s go to the extreme, very painful, you won’t want to do that again. So that’s why the desire issue becomes so important to them but tracing it backwards
is really important. So when women are getting treated, it’s all wrapped up in
menopausal types of symptoms. The vaginal dryness can really predict who’s gonna have trouble doing
any kind of sexual activity and I’m also seeing a
lot of lack of orgasm in this population which I
find incredibly fascinating because when I see women
who are treated for, say a pelvic cancer or
even a rectal cancer, orgasm tends to be intact.>>Interesting. So a couple of things that come to mind when you bring that up;
you mention low libido. If you see a patient that
presents with low libido it sounds like it’s a combination of medical and psychosocial
for a lot of these patients. How do you treat that?>>Well, low libido is very complicated because it’s exactly that; it’s the epitome of the mind
and body working together to either suppress desire
or in very rare cases, just complete dissociate the libido from the experience of
sexuality and intimacy. The approach is very complicated. My style is to try to identify an issue that can be actually treated, so if it is menopausal symptoms, we can approach that and we can give them vaginal moisturizers, we can
talk about vaginal estrogen, we can talk about certain solutions and the important of
lubrication and lubricants during any kind of intercourse. If it’s body image issues, you know, there’s really great data
now that psychological counseling to approach
the mind’s interpretation of how she’s viewing her
body can be very powerful. Group therapy can be a very
powerful maneuver as well and then when it comes down to it, if it’s intimacy is the
reason why desire is lacking, then I do try very hard to meet with both the partner as well as the patient and try to get them on the same page in three arenas in sexual health, sort of ask each of them
to, not in front of me but maybe in a private conversation because it’s a very difficult one, what do you need right now? What do you want right now? And where do you wish you were right now?>>Elissa: Tough questions.>>Very tough and very private questions but we don’t have a road
map of how to navigate sexual health after cancer and certainly it’s not a road map we as oncologists were ever trained to
navigate patients through and quite frankly, I have a
very open ended conversation with patients so I’m prepared to hear just about anything
they want to talk about. I can’t say the same
thing for my colleagues and that’s okay ’cause
we all approach this with our own schema.>>Elissa: Sure.>>And I can’t tell my colleagues to adopt an open schema if they’re just not willing to do that.>>You bring up a lot of good points. Your colleagues and sort
of how do you broach that question if a patient
is really suffering. Do you recommend that she
talk to her medical providers? Or how do you go about that?>>You know what I’ve
found most interesting about that is as long
as the resource is there my colleagues are okay in bringing it up. What I think is the most
interesting thing about this is when patients have
brought up the issue, historically it’s been a oh,
let’s just see where things go and then move back on to cancer. (laughs) move back on to treatment and let’s just redirect the conversation to ground that I think is important. She may not or he may not but I do think this is an important area, so then they go to their nurse and their infusion
nurse or their navigator and those are the ones who are really the front lines of this but there have been two experiences, well actually three
experiences that I’ve had bringing a sexual health
program into a cancer center and one was in breast,
one was in women’s cancers and then one was with
partnering with folks at the MGH to bring a
sexual health service line to bone marrow transplant survivors and what was interesting
about all three experiences, once my colleagues knew
the resource existed, they were the ones to say oh, you know, by the way, you were
treated with radiation, are you having any problems? And they would say yes, I have the perfect person for you to see. That seems to be the key. My concern is, we both
know, community settings may not have this resource. It’s not that common at
all to see an oncologist adopt this as an area of interest, let alone start a program. But more and more, I
think there are people within the community who are willing to have these conversations
with these patients, it’s just a matter of identifying them.>>Sure. I want to circle back for a second. You mentioned a few minutes
ago about vaginal dryness, so let’s talk a little bit about that. What do you recommend for a patient that’s really suffering? You mentioned discomfort,
vaginal discomfort, what would you tell a patient that’s had some of those issues?>>Vaginal dryness is
actually a very common issue for all patients who are
treated with cancer actually but it is a major problem after
treatment for breast cancer particularly because of
the therapies we prescribe. I try to take vaginal dryness
and what’s now known as genito urinary symptoms
of menopause, or GSM, out of the picture of sexual health and make it really a general health issue. And in that regard, my aim is not to divorce it completely from sexual health but to make it something that women feel is part of their daily regimen, just to maintain skin health
or healthy hair or you know, a healthy vagina needs to be
looked at in that viewpoint. A couple of things are important, so vaginal moisturizers are very important and oftentimes when oncologists say you should use a vaginal moisturizer, they don’t actually tell
them much more than that so how do I use it, how frequent? So I’m pretty specific. You use it at night ’cause
it tends to leak out if you try to walk around with it and use it four to five times a week and even one hour before intercourse. There are various preparations,
we go through that and then most importantly,
I make sure they understand it’s not a lubricant so
moisturizer, vaginal health; lubricant, sex play. Lubricant you should use when you’re gonna do an activity in the bedroom; moisturizers really are
about healthy behaviors, promoting a healthy
vagina and pelvic organs. The second part can be a
little bit more tricky. I tend to use this part
of the conversation after someone has tried
vaginal moisturizers and maybe hasn’t responded too much. But I do talk about vaginal
estrogen preparations which are very different from taking estrogen by mouth, for example. Multiple groups including now the American Society of Clinical Oncology and the American College of
Obstetrics and Gynecology, they’ve looked at the
data and have concluded you can safely use a vaginal estrogen even if your breast cancer
was hormone receptor positive because the doses, especially today, are so low that the effect is local and very low, low risk
of systemic absorption and there’s been no data
to show that influences recurrence or survival after breast cancer but the impact can be big. Having said that, I have patients who really really don’t want to do a hormonal preparation. For those folks, it’s not my job to say you should do this. If they say I’m not
comfortable, we let it go. If they say, I’d use it if
the other thing didn’t work, then that’s how we do it, and if they say this is so bothersome to
me, can we start here? I’m perfectly comfortable doing that.>>You mention patients struggling with the ability to have an orgasm. You talk a little bit
about why that may occur and are there tips that you give a patient who may be really struggling, who may not have had issues in the past but now find themselves
really struggling with that?>>Yeah, that’s a very difficult
issue to try to address. What I’ve found is once
treatment has ended, there’s such pressure that either a woman will place on herself, quite frankly, or she’s perceiving this
pressure from her partner to be normal again and so this quest of not new normal but the old normal is really where a lot of this
seems to be grounded from, so it is not uncommon for me to meet women who say I used to be
able to achieve an orgasm when someone just walked in the room or the wind was a certain way and it was that easy for me but now, 45 minutes later and I’m
chafing and it’s still not. So the first thing I
tell them is like well, if you’re doing it to
the point of chafing, you should probably stop. It’s sort of, give your body time to heal and you should attempt
it only when you feel like you want to. Your body will read you and
that’s a really important thing, to follow the cues of your
own body is important. It’s not to say that this
is all in someone’s mind but it is a mind body connection
when it comes to orgasm and what is more common
than even when someone is able to orgasm is that the intensity isn’t as high as it once was
before or it does take longer. I try to put a positive, a
more positive light on that, it’s like instead of
things you’re now missing, think of what cancer didn’t take from you and if you’re starting with this baseline, give it some time and
things can come back. Part of this is also we now have described this new term
from Jennifer Gostin, most of this work of
breast specific sensuality and it turns out there’s a loss of that. 10 to 20% of women,
even after a lumpectomy, will lose breast specific sensuality. Most patients, that was a
huge erogenous zone for them and they haven’t been able to find another part of their body
that will make up for that loss and part of it is because
no one’s asked them to try. Like you know, you could
explore this and see if something’s happened to
other parts of your body. You might have heightened
sensitivity elsewhere that can also help you re-establish orgasm but tincture of time,
there is no magic pill that’s gonna help that.>>You mentioned exploration,
do you ever recommend to patients that they experiment with relationship aids
or other types of devices that may help with the ability to achieve an orgasm naturally?>>Well, you know what I’ve found is, and this is something that I’m actually aiming to study more formally because there’s a lot of
literature about intimacy exercises and how that can help couples reconnect after medical illness. So I’d like to start
focusing at that point on when I talk about sexual
health with survivors, I use a picture of an on and
off switch to illustrate men. (both laugh)>>Elissa: Sure!>>Because you know, if men are excited and erect then they’re ready. Women don’t operate like that, women are more of a computer board with all the wiring and all the switches and you know, now introduce cancer to that and the switchboard’s not working but the man’s on and off switch is fine. There’s a disconnect and
that’s a very difficult territory to either have
a conversation about, let alone try to work through, so there’s this thing
called sensate focusing that I like to provide to patients and it’s all about play and I like to use that word specifically
when I talk about it because both male or female partner, male or female patient with breast cancer, can walk away with the
same answer from me. Work on play, and it’s really sort of to de-stress that intimacy and intercourse are the same thing, ’cause it’s not, especially not for women, so sensate focusing is just a structured exercise of touch that requires one to read the other person’s body and how they’re accepting sensations and it holds off intercourse
until the very end and what I’ve seen in
the best-case scenario is a re-establishment of intimacy with the side effect that
intercourse is again pleasurable. But it’s that really, just
re-establishing intimacy so that both folks are on the same page about what that means to them. It’s probably some of
the best help I can give.>>Sounds like a really good way to get reconnected or to connect.>>Don: Absolutely, absolutely.>>For patients who are
interested in learning more about that, is that
a term you can Google or are there resources online available?>>There are absolutely
resources online about it. There’s not a lot of
data on sensate focusing in women and men treated for cancer. It’s ripe for research that
I’m hoping to get started but yeah, it’s very much available online.>>Good to know. Would you have a sense of how prevalent sexual dysfunction is after breast cancer? Is there good data out there?>>You know there is good data
but it’s not consistent data. The reason’s very basic: it depends on how you ask the question.>>Elissa: Okay. (laughs)>>So depending on how
you ask that question, 50 to 100% of patients.>>Elissa: Wow, that’s a big span.>>It’s a huge span but so… what’s more interesting that I’ve found is that even if the issue exists, not everybody feels it
needs to be treated. So there are folks in sexual health who may not come from
an oncology background but really invested time
and effort and energy into helping women and
men treated for cancer lead better sexual lives. They might come into
this arena with a feeling that everyone should see a
sexual health specialist, everyone deserves a sex life. What I’ve learned is the only person who can tell me if they
want a better sex life or a sex life at all, is the person who’s gone through that experience and it is not uncommon for patients not to show up after
they’ve been referred to me, it’s not uncommon at all. And I think it just
reflects that 50 to 100% is that it is a huge spread, but where they rank their sexual life in the important issues that we all face after a cancer diagnosis
is I think what’s gonna determine whether they seek help for it.>>Elissa: Interesting.>>Yeah.>>And it doesn’t sound
like it’s a one time thing, that it may be something that a patient struggles with in the continuum.>>Yes, yes, absolutely. So there are folks who just
come in for that one visit and feel the education has been so helpful that they walk away with
a better understanding of what’s happening to their bodies. I think that’s nice. They may not want to come and see me again but in practice, I oftentimes will say why don’t we touch bases
in another four weeks, six weeks, eight weeks, twelve. And what’s even as common is I refer on. I refer to sex therapy,
I refer to pelvic rehab, so it does take a village even in this one little area of survivorship to get people to the help they require.>>I think you bring up a
good point about pelvic rehab. Can you talk a little
bit about what that is?>>Absolutely, so pelvic rehabilitation takes what I do to a much greater level. Pelvic rehabilitation is done by physical therapists who
are specially trained in looking at the pelvic musculature and seeing if there are areas
of heightened sensitivity or pain triggers and what they do is a specialized massage
into the pelvic musculature. They can provide bio feedback exercises and the whole goal is to
help relax the musculature that tends to be spasmodic or contracted as some of these causes.>>So it sounds like someone would need to be really specialized; this wouldn’t be the type of physical
therapist you’d go to for let’s say an orthopedic
issue, is that right?>>That’s correct and
this is very different from say, lymphoedema specialists. I try to go with someone who
actually has that experience; not only in pelvic rehab
but pelvic rehabilitation for patients treated for cancer.>>Good point, good point.>>Yeah.>>For a patient who… I’ve had patients come to me and say it’s my partner who’s really struggling. Do you work with both the
patient and the partner? What advice do you give
to partners who are sort of saying, I want my wife back, I want my partner back and she’s crying, and she’s not into this?>>You know what’s so
interesting about that, when I first started this
field I was all about just treating… ’cause I started this
field as a women’s cancers sexual health specialist, so when I opened my first program, I was specifically only going
to see, only seeing women. I was not interested in
seeing their partners. That is probably a mistake because the sexual life of a person is in a large part determined by what that relationship looks like. So it is not uncommon at
all for women to come in and say either you need
to help me have sex because I don’t want
my husband to leave me or if we don’t have sex every Tuesday he’s gonna know something’s wrong. And so there’s all these issues and the other really important thing that I try to impart to my colleagues as to why you have to do this in the context of cancer
is because I’m not a feminist in that room, so I don’t tell, it’s not my job to tell women do not have painful intercourse. Do not let yourself be in a situation where you’re being forced
to have intercourse. Although I believe those things greatly, but this is a trauma that
a couple has experienced and they’re both trying
to make it through intact, so I don’t judge a woman who says I have to have this sex because
he’ll leave me otherwise. That’s a real phenomenon of worry and pain and she’s sacrificing her own comfort for the sanctity of her relationship. My goal is to make it less of a sacrifice and less of a job and get
it to what it was before, which was fun and playful. To do that I have to
incorporate the spouse and it’s easier for a spouse to understand what’s happening if
they know it’s grounded in something real. So so much of this might be perceived as I don’t understand why you can’t. Why can’t you relax, why does it hurt, can’t you just relax? And I’m the one to tell the partner no, she can’t tell her vagina to relax, it’s gonna do what it wants
to do but it can relax. So I’m the one to say I don’t want you to have intercourse
for the next six weeks. Instead, I want you to play, or I want you to do this
exercise on sensate focusing and I use a term that’s
very medical sounding so that he’ll buy into it, you know? But so often it’s the
partner that gets more out of the education than the patient because the patient knows something’s off, she just can’t explain it. The partner is just confused about it. What I found was even worse, saying it doesn’t matter if
it’s a same sex couple or heterosexual couple; the
misunderstanding exists.>>Interesting.>>Yeah, it’s been very eye opening.>>I get a lot of questions from patients about what is normal in terms
of regards to how many times a week we should be having sex or how many times per month, and how do you answer that question?>>So I answer that question
with some great work my friend Barbara Anderson
did in Ohio State. So she developed this concept of a schema and the schema is how you
view your own sexuality and it’s through the prism
of how you were raised and how your parents
had their own sex life, it’s your church, it’s your community, and it’s your past experiences. And all these congregate together and tell you, this is my schema and this is what’s normal for me. So the nice thing about that
is there is no one normal.>>Elissa: It’s not
about checking the box.>>It’s really not
>>for the Tuesday.>>About checking the box, you know, you’re gonna have two folks or a couple, they might be very
comfortable having intercourse eight times a week, they have that schema, it’s very open and expressive. You have another couple who,
lights out, fully clothed once a month and they
were happy with that. You know what? And both of them are okay. I think that the hardest
situation for me to come in, not hardest but most
awkward situation is when someone comes to see me
because they’ve been told that their sex life isn’t normal. That you know, you should
be having intercourse. I know you guys like
to play but you should be having intercourse
and the fact you can’t have intercourse is a problem. And it’s a lot of just, you know what, it’s okay, you can own that
’cause it’s not a problem. It’s your schema and it’s all right, as long as you’re happy
and he’s not asking for more than you’re willing
to do, you kids are okay.>>I like that, it’s a
great way to look at it.>>Yeah, and I think it’s a nice way even to explain it to our colleagues who maybe don’t want to talk about this, ’cause they often find
that if I talk about it I’m gonna have to delve into it, I’m gonna have to get to, you know, well, how often is it happening
and what makes it better, what makes it worse?>>Very medicalized.>>Very medicalized and they’re
just not ready to do it. I’m like, you know what? That’s your schema and
your schema is not only influenced by all these other things, it’s influenced by the fact
that you are a clinician providing cancer care
and that’s all right, this is not in your thing, but I’m sure there was a time
when you couldn’t imagine talking to someone about
their bowel movements. And how much watery stool
are you having in a day? That’s a very private thing
to talk about someone. But we do it because we know
our drugs cause diarrhea. Well you know what? Your drugs are causing sexual dysfunction. You ask that one
question, you refer it on, you say you know what, I’m not the person you can talk about this to
but we’ll find you someone.>>And what’s that question? Is it how’s your sex life
or how do you phrase it?>>Well, how I phrase it, okay so what’s interesting in my clinic, ’cause I also see patients with cancer, I actually don’t do the deep
dive into their sexual lives. When I see them for a chemo visit or even a check up to see
if they’re still doing well, so I do it in the sort
of the plicit model, there’s permission, get
limited information, provide specific suggestions and then a referral on to intensive therapy. I ask for their permission and the way I generally phrase it is depending on the scenario, you know, some of my patients who
take this medication find it very difficult
to have intercourse. I’m wondering if that’s something
that’s happening for you. Or you can ask just simply, you know, I make it a practice to ask everyone one question about their sex life. How’s it going?>>And when is the right
time to ask that question?>>That’s the big question, isn’t it? So what I’m trying to… My sense is that you wanna open the door to the discussion as early as possible, even if they’re not ready to because as long as patients
know the door is open, they’ll walk through
it when they’re ready. So in an ideal world it would
be one of the first things you ask a patient when you meet them. You know, you’re doing a gyne history, so how many kids do you have, did she have any miscarriages, is your partner, do you have
sex with men, women or both? How long have you been married? Are you married to a man or a woman? Da da dah, you know. Not that you need to know,
but if it ever comes up and something’s going on in your sex life, I want you to know I’m open
to discussing it with you. And they’ll either walk through the door or they’re gonna remember you said it.>>Elissa: Planting the
seed, it sounds like.>>Planting the seed
in the very beginning, as early as possible,
as early as comfortable, it may not be during the
time when you’re giving the first diagnosis or you’re talking about the first chemotherapy or talking about a clinical
trial but soon after. It’s just something that
should be mentioned.>>Those are great, great tips.>>Thanks.>>How do you approach patients with metastatic breast cancer? Do you treat them any differently?>>You know what’s so interesting
about that question is, at one of my former places of employment, ’cause I’ve had several, one of my colleagues came up to me and asked me that exact question. Sort of, I have a woman,
she has breast cancer, it’s gone to her liver but
she really wants to be able to have comfortable sex again. Who should I send her to? And I’m like well, I do run
the sexual health clinic here. He was like, oh I thought you only treated women who were cured. Yeah, so there is this perception, and it’s one that I actually
wrote a column about for ASCO Connection that
women with metastatic disease should be not only grateful to be alive, that should be the only
thing they care about, and more often than not
and it’s kind of sad to me, women refer themselves to my
clinic after their brain mets, or after they’ve been
diagnosed with liver mets and they do it outside
of their oncology visits and I don’t know of it’s
because they’re almost too afraid of what the answer will be if they ask for the consult, like oh you shouldn’t worry about that or they’re just maybe in a way embarrassed that they even want this, when there are so many more
important things to do. So yes, I do see those patients and it comes into really
incredible sort of scenarios. One is the more common which is I might have metastatic disease but I won’t let my sexual
life be another thing I give up so help me work on this, and I meet with the both of
them, her and her partner, to see how we can get on
the same page about this and how we can move forward on that. But the other one is a little bit harder and it’s one that I’ve actually employed help with psychotherapists about and it’s the situation where a patient has metastatic disease and
maybe at one point got very sick and was hospitalized maybe for a long time and came out and re-established a normal baseline or new normal baseline, but the husband or the
partner just remembers that sickness and there’s a switch where the partner no longer sees a spouse or romantic person, he sees a patient and he’s adopting the role of caregiver. That’s harder to deal with. I’ve tried to do sensate
focusing in that scenario but I’ve also referred
to couples’ counseling. I think it’s incredibly
important to work through that because a woman who’s living
with metastatic disease might have her times when
she feels like a patient but she’s gonna have a lot
of times when she feels like a person and when
she feels like a person she wants to be treated like that person. But on the other end of that is the person who supports her, who sees both and may not be able to make
such an easy adjustment.>>For patients that want to learn more, are there resources online,
are there credible websites, where can we send
patients that really want to sort of dive more into this?>>Well yeah, there are more and more there are some folks who
are declaring themselves interested in learning about this, which I think is fantastic. Online right now, Leslie Schover,
she’s been at MD Anderson, has created a wonderful
comprehensive web-based program called Will2Love, and it’s partnered with the American Cancer Society to evaluate this toolkit in real time for patients and they can actually
enroll on a clinical trial to evaluate will2love
through the ACS website and I think it gives you
access to information and we can learn how useful it is through your experience with
will2love so that’s one. Living Beyond Breast Cancer,
Young Survivor Coalition, both have great resources
on sexual health. And there are two societies
that I think will be well served form the
clinician’s perspective: the Sexual Medicine
Society of North America and the International
Society for the Study of Women’s Sexual
Health, ISSWSH and SMSNA, they have members all across the U.S and accessing one of those
members would be great for anyone whose staff want to get more education about this. I developed and helped run something we’re calling the Oncology Sexual Health First Responders Course as part of the National Consortium of Breast Centers, meeting in Vegas each year and it’s really it’s just that, it’s a crash course on theory and approach and treatments and it happens over the
course of a half day and I think that’s a nice
way to just get a flavor of what we do in real time.>>Wonderful, really great suggestions. Dr, Dizon, thank you so much for all of this great information.>>Well, you know, it’s
always wonderful to see you. (laughs)>>Thank you for joining us, as well. (gentle inspirational music)

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