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Sex, Side Effects and Breast Cancer

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Published on January 14, 2020

Key Takeaways

  • There are two classes of aromatase inhibitors, if one has bad side effects, ask your doctor about trying the other.
  • Vaginal estrogen is safe to use for vaginal dryness.
  • Doctors are the expert in the disease, but we are experts on living with the disease.
  • Sexual desire is multifactorial for women, so it’s harder for women than just taking a pill.
  • Exercise is helpful for side effects of aromatase inhibitors.

Breast cancer treatments can affect your sex life. Patient Power’s Andrea Hutton and Dr. Kelly Shanahan discuss how aromatase inhibitors, by blocking estrogen, can cause menopausal symptoms and sexual side effects. Dr. Kelly Shanahan, a former gynecologist living with metastatic breast cancer, explains how treatments like aromatase inhibitors can impact sexual health, and options for side effect management to help women find relief safely. Watch as Dr. Shanahan shares strategies to help women suffering from things like vaginal dryness or discomfort.   

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Transcript | Sex, Side Effects and Breast Cancer

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrea Hutton:

Hello.  I'm Andrea Hutton with Patient Power, and I'm here at the largest breast cancer symposium in the world in San Antonio.  And today I'm talking with Dr. Kelly Shanahan, former gynecologist and present metastatic breast cancer patient.  And who better to talk to about the side effects of aromatase inhibitors, particularly sex and other issues, than a former gynecologist.  

Dr. Shanahan:

Right, and a metastatic breast cancer patient who experiences these side effects, but my 25 years of practicing as a gynecologist gives me insight in some of the things that we can do to help women who are suffering the sexual side effects of these drugs that are keeping us from being not the dead yet.  And even for early stage patients who are on them to prevent a recurrence or a metastatic occurrence of their cancer who are on these dugs now for up to 10 years, it's a big deal. 

Andrea Hutton:

Let's talk about what aromatase inhibitors are.  

Dr. Shanahan:

Right. 

Andrea Hutton:

What are they called?  Why would I be on that?  How would I even know? 

Dr. Shanahan:

So aromatase is an enzyme that converts estrogen testosterone to estrogen in fat cells.  So these are hormone blockers, estrogen blockers.  And unfortunately they do a really great job of blocking estrogen, and estrogen is what not only keeps our bones strong, it actually helps our hearts, but it helps keep our vaginas moist.  And I do hope one particular advocate friend of mine watches this, because those are her two least favorite words in the whole world. 

So when we are on these medications we experience menopausal symptoms, so young women like you who are put on these medications well before they would otherwise go through menopause experience menopausal symptoms at young ages.  And for old people like me who may already be experiencing menopausal symptoms, they just make it so much worse. 

But we're not without hope.  There are things that can be done, because they haven't come out with the perfect drug yet.  The perfect drug would treat our cancer and would be good to our bones and would be good to our heart and would be good to our vaginas as well.  But we don't have that perfect drug yet, although maybe there's some things in development that we won't have to have this conversation again in a few years.  But we do now. 

So one of the things that's really interesting, and as a gynecologist who has been doing this for a long time, I've often seen people with breast cancer and they would come to me with these symptoms, and I'd say, yeah, man, you've had breast cancer.  I can't put you on estrogen that goes throughout your whole body, systemic estrogen, like hormone replacement pills, but maybe I can give you vaginal estrogen.  There's not a lot of data, and especially when I started doing this 20 years ago, you know me, I've always been a little bit of a rebel. 

So even 20 years ago I would say to my breast cancer patients, maybe I can give you a little bit of vaginal estrogen.  I can't tell you it's 100 percent safe.  And what I used to do is I would check their estrogen levels to see if they went up on therapy.  Now we have more data and more information, and even the American College of Obstetricians and Gynecologists and ASCO, the American Society of Clinical Oncologists, have come up with guidelines, published guidelines for cancer patients saying that vaginal estrogen is probably safe and that it can be used in low doses to help with the symptoms of vaginal dryness that can make intercourse really difficult. 

But it's so much more than intercourse.  Because everything is kind of close around there, so low estrogen levels also can lead to thinning of the tissues not only in our vaginas but also in our urinary tract and increase the risk of urinary tract infections.  So a little dab of vaginal estrogen goes a long way to helping us be able to have an intimate sexual life as well as maybe lower our risk of getting bladder infections. 

Andrea Hutton:

So is this something that I need to talk to my gynecologist about?  I mean, as a breast cancer patient who might have been on those drugs, would my oncologist tell me about this?  How would I even know? 

Dr. Shanahan:

Well, you would hope that your oncologist would be able to have this conversation with you, but surveys have been done showing that most oncologists do not address this, especially—probably especially community oncologists.  And not to disparage the guys, but it seems like male oncologists are much less comfortable talking about sexual side effects and what to do about them with their patients than maybe younger female oncologists. 

I recently did a panel with an amazing young woman oncologist who is very open with her patients and talks to them about this and uses words like vagina and sex.  But my personal experience, having started both my early stage breast cancer diagnosis and initially with my metastatic diagnosis, seeing male oncologists, they never asked me about these side effects.  They never proposed a solution. 

So some of us will be lucky enough to have oncologists that will address this, and others will have oncologists where you mention the word vagina, dry and sex in the same sentence they're going to give you the deer in the headlights look, and then your gynecologist can be a good resource.  Again, younger gynecologists who have trained after these guidelines came out a couple years ago are going to be more apt to go, oh, yeah, I can give you some vaginal estrogen, as opposed to maybe if your gynecologist is older you as the patient may have to be powered to bring this up and say, hey, I heard, I read that it's okay for me as a breast cancer patient to use a little bit of vaginal estrogen. 

So again we have to often be the advocates for ourselves.  You know, I always say that our doctors are the experts in the disease, but we are the experts in living with the disease. 

Andrea Hutton:

So if I'm not comfortable or my doctor is not comfortable with vaginal estrogen, do I have any other choices?  What else can I do?  Is there oil, what kind of moisturizer? 

Dr. Shanahan:

There are moisturizers.  And the thing too, just like we need to moisturize our face, especially as we get older, you got to kind of do that every day, you can tell some of us do and some of us don't, we also need to moisturize our vulvar and vaginal tissues.  So a really good idea is to every day use a vaginal moisturizer, and there are products available on the market for vulvar—and vulva is the outside part, the lips, and the vagina is the inside part—to use moisturizers on these areas. 

Even something, if you really want to go totally natural, olive oil or coconut oil, depends on whether you want to smell like a pizza or smell like the beach, can also be very effective moisturizers.  

Lubricants are and what you use when you have sex, and you want to use not a water‑based lubricant like the big famous one, K‑Y.  K‑Y actually is terrible as a lubricant.  You want to use a different one.  My personal favorite, I love this one and I would tell my patients when I was still practicing to you use this one, because I love the name, it's called Astroglide.  And I don't know about you, you're a little bit younger than me, but that always gives me the image of the Jetsons having sex. 

And it's a not a water‑based lubricant, so it lasts a little bit longer.  It's slipperier, it feels more natural, and that can be used with intercourse.  Because even if you're using vaginal estrogen, which will thicken and beef up the tissues and help provide some additional natural lubrication, if you've been on an aromatase inhibitor for a long time or you're an older woman who is already in menopause and adds on the aromatase inhibitors, it's not enough. And you're going to need to use the vaginal lubricant during intercourse no matter how excited your partner is making you. 

And talking about excited that brings up the whole idea of libido and interest in sex, because the medications, the cancer itself, the changes in our body image due to the disease, disfiguring surgeries, I know I gained a huge amount of weight and still have it on the aromatase inhibitors, which doesn't exactly make me want to get naked with somebody.  So that's a completely different issue.  There are medications now available to increase female sexual desire.  They were just starting to come out and were FDA-approved about the time I stopped practicing, so I'm not completely familiar with them. 

Andrea Hutton:

Something to talk to our doctors about. 

Dr. Shanahan:

Something to talk to our doctors about, but also the data that I have read about them unlike, meh, meh, we're way more complex than men.  Men have sildenafil (Viagra).  It increases blood flow to the penis, and that's all they need.  They need more blood flow. 

For us, sexual desire is so multifactorial.  It's did my husband take out the trash?  Or are the kids behaving?  Is my cancer under control?  How does my hair look today?  So many other things.  We're way more complex.  So treating decreased libido is much or complicated.  Actually, our biggest sex organ is the one between our ears.  It's our brain, and that's a lot harder to just give a pill or take this medicine to fix that. 

Andrea Hutton:

Yeah, particularly with a cancer diagnosis and all the treatment, as you said, not just the side effects but also all of the psychological things that go into it and the physical changes, communication with your partner, with your doctors, all these things can help. 

So what are the other side effects of aromatase inhibitors that are not sexual that also are so difficult for women that they don't want to stay on the drug.  

Dr. Shanahan:

Right.  So I think the biggest one is probably the joint pain and stiffness, the arthritis type symptoms.  And I was an early‑stage breast cancer patient and diagnoses.  I had very aggressive surgical treatment.  I had a bilateral mastectomy.  I had one lymph node out of 21 that was positive.  I had chemotherapy, and then I was placed on an aromatase inhibitor, and I developed bad arthritis symptoms in my hands that made it difficult for me to perform surgery.  And I thought, I've had a bilateral mastectomy.  I've had chemo.  I'm early stage.  I'm fine, and I did not complete the five years of therapy, and I stopped taking the medication. 

Now, one of the things that can happen is if aromatase inhibitor A causes bad symptoms, aromatase inhibitor B may not.  There's two big classes of aromatase inhibitors.  Two of them are what are called nonsteroidal aromatase inhibitors.  And one of them is like a steroid, a steroidal aromatase inhibitor.  So if you're having a lot of arthritis type symptoms on a nonsteroidal aromatase inhibitor you may not have that on the steroidal aromatase inhibitor.  So don't be like me.  Actually talk to your doctor and maybe try a different one.  

The other thing is movement. Movement really helps.  So I find now that I'm metastatic and I would never in a million years stop taking my aromatase inhibitor because of the side effects, also because I'm not practicing medicine and doing surgery any more, but I find that the more active I am, the more I move, the less my joints ache.  And if I'm engrossed in a good novel or I was watching a three‑hour movie that's getting Oscar buzz and you're sitting there for over three hours, when I get up I'm much, much stiffer.  First thing in the morning, I'm walking like a 102-year-old.  But as the day goes on and I move and I exercise, if I exercise on a regular basis, the joint symptoms are much, much less.  

There's no data on this but some people say that taking things like glucosamine chondroitin or turmeric can help.  Again, there's absolutely no data on that, but it's probably not going to hurt you.  And if you think it helps, yoga, exercising in water, leaving living in a cold climate in the winter and going someplace warmer can certainly help.  I know that my symptoms are much worse in the winter—I live at Lake Tahoe—than they are in the summer when the weather is nicer. 

Andrea Hutton:

So all of these things, the sexual side effects the arthritic side effects, all these things, if I talk to my doctor about it they might have some solutions. 

Dr. Shanahan:

They might have some solutions.  But the thing is if your doctor doesn't have solutions they should at least be able to point you in the direction of someone who may have solutions.  So again, for the  sexual side effects, I don't think there's anything wrong with your oncologist going, that is not my area of expertise.  I would like you to go see your gynecologist.  

Andrea Hutton:

But it starts with me telling them I'm having side effects…

Dr. Shanahan:

Yes. 

Andrea Hutton:

…that are making me uncomfortable and I'm considering stopping the medication because of them. 

Dr. Shanahan:

Right.  

Andrea Hutton:

I think unfortunately a lot of women, they don't know that there might be something they can do. 

Dr. Shanahan:

Right.  They feel that—number one, often we put our doctors up on a pedestal that we doctors do not deserve to be on.  We are human beings, and we put our pants on one leg at a time too.  But I think we're afraid to talk to our doctors.  We're afraid to be seen as the complaining patient.  It's not explaining when you're telling your treating physician about the side effects.  It's reporting.  I am reporting these side effects to you.  I want to be a partner in my care so we need to have a conversation, a communication.

And that's something really important for us patients, to tell our doctors what we're doing because a lot of patients are using alternative and complementary therapies.  They're using marijuana, CBD, and some of these things can interact with some of the drugs that we're on, so I think it's important that we are honest with our doctors, that our doctors give us the information that they have, and if they don't know it's totally okay to say, I don't know, maybe this person can help you.  Or maybe an integrative program, maybe acupuncture may help with some of these side effects you're experiencing. 

It doesn't—I don't think it diminishes us as physicians to say I don't know.  I think it actually shows that—you know, I always admire my doctors who go, I don't know, let me look that up.  Or I'll get back to you.  Or I don't know, let's go see this other person.  But I think we as patients need to know that it's not a—it's not unidirectional, that things aren't just coming from the doctor down to us but we also provide information to the doctor. 

But often our doctors don't know about certain side effects.  It's not so much with aromatase inhibitors but there are some drugs that the side effect may not show up until a patient has been on a drug for a few years.  It may not have been shown in the clinical trials.  But as patients start reporting that, then our doctors can learn about it and we can improve the care that we're getting. 

Andrea Hutton:

I like that whole idea that I'm reporting my side effects…

Dr. Shanahan:

Yes, you're reporting them.  

Andrea Hutton:

…not complaining. 

Dr. Shanahan:

Yes.  And unfortunately when we abbreviate it's, patient C/O, complains of, and that's something that's sort of ingrained in us in medical school, and I'm really hoping that maybe that can be changed with this new generation of doctors instead of, you know, patient C/O, it's like just patient reports.  It's just like telling our doctors that we're feeling good, we need to tell them when we're not feeling good.  

Andrea Hutton:

I think that's especially hard for women.  They want to please their doctors.  And they want to—people just want to be the perfect patient, and that's a lot of pressure, and it turns out it's actually hurting you by doing that. 

Dr. Shanahan:

Yes.  And the perfect patient is the patient who works with the doctor and who reports the good and the bad, the good, the bad and the ugly to take off on the movie.  

Andrea Hutton:

Well, Kelly, thank you so much for being here. 

Dr. Shanahan:

You're welcome, Andrea.  Thank you for the opportunity. 

Andrea Hutton:

Absolutely.  And thank you for bringing knowledge and hope to our community. 

Dr. Shanahan:

Thank you. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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