Breast Cancer Treatment: 3 Questions Patients Are Afraid to Ask
Aimee (00:00)
Breast cancer treatment can feel like a marathon that you didn’t exactly sign up to run. And just when you think you’re finished with treatment, someone says, okay, now you’re going to take pills for another five years.
Amy (00:13)
So today, we’re talking about three very common questions that Aimee and I hear from our breast cancer patients all the time. And we’re going to talk about some things that patients want to know about but don’t always feel so comfortable asking about, menopause and sex.
Aimee (00:36)
Welcome back to Voices in Oncology from STO. I’m Aimee Faiso, an oncology pharmacist, and I’m joined with my co-host and oncology nurse navigator, Amy DePue. Hi, Amy.
Amy (00:36)
Hey, Amy.
Aimee (00:36)
October is Breast Cancer Awareness Month, so Amy and I thought this would be a great time to talk about some of the questions we hear regularly from women going through breast cancer treatment.
Amy and I have both worked with breast cancer patients for many years, and we’ve learned that a lot of times, questions patients have aren’t necessarily about their treatment directly or the latest clinical trial.
Amy (01:11)
There are many, many potential questions, but we thought we would tackle three of the biggest. So why does breast cancer treatment take so long? I hear it all the time.
Aimee (01:23)
I do too. And it’s such a good question because when someone is first diagnosed, they may hear, okay, we have to do surgery. And a lot of times patients think, okay, great, I’ll have surgery and then be done. But then there’s radiation. And then some women hear that know they have to have weeks or months of chemotherapy. And then some have to get targeted therapy with that. And then there’s endocrine therapy, which can be for years. And then they’re thinking, wait, weren’t we supposed to be finished after surgery?
Amy (01:57)
Right. Breast cancer treatment is not a quick process because different treatments are doing different jobs. Surgery is often used to remove the cancer and radiation is used to reduce the risk of cancer recurrence. Chemotherapy may be recommended for some patients to reduce the risk of cancer coming back elsewhere in the body, and along the way, there will be slight detours depending on how the patient’s responding to one of the treatment modalities. And sometimes we will say to a patient that they can view this as a bump in the road, one of my favorite sayings, bump in the road. But the reality is to do the job and do the job well takes time. And then we have treatments that continue after those initial treatments because we know that breast cancer can come back even after the original tumor has been removed. It’s all about risk reduction in early stage breast cancer. So let’s talk specifically about estrogen receptor positive breast cancer. Why do some women have to take endocrine for five years and many for even longer?
Aimee (03:09)
Estrogen receptor or ER-positive breast cancers use estrogen as a growth signal. And so our endocrine therapies are specifically to block that estrogen from binding and stimulating the cancer cells to grow, or it may actually lower estrogen levels in the first place, so it’s just not available in order to bind and therefore stimulate those cancer cells.
And unlike chemotherapy, which is given as a defined number of cycles, endocrine therapy is given intentionally for years. For many patients, endocrine therapy is given for at least five years, but as you’ve mentioned, some patients actually receive extended treatment, and that can be up to 10 years. This can be depending on the patient and their risk of the cancer returning. Research does show that longer courses do a better job at reducing the risk of recurrence in select patients.
Amy (04:09)
So it is important, it’s very important to explain that we’re not giving this medication because we think the cancer is still there.
Aimee (04:18)
Exactly. That’s a really important distinction because our goal of endocrine therapy after surgery is to reduce the cancer from coming back. So the surgery removed all the cancer that can be seen, but endocrine therapy is really to make sure that those cells aren’t growing and pop up later in the future.
Amy (04:38)
And where does chemotherapy fit into all of this? Do all women with ER-positive breast cancer need chemotherapy before they start endocrine therapy?
Aimee (04:47)
No, not all women do. So this will vary a lot depending on your cancer itself. And you know, ER-positive breast cancer is quite broad and so treatment really depends on multiple factors. So it can be the tumor size, if the cancer has gone into a lymph node, how aggressive that tumor is, if there’s other receptors that are positive, like HER2, for example.
Depending on those specific factors, that’s when your doctor will talk to patients about whether surgery is a benefit or not. But if it is ER-positive, then endocrine therapy is indicated and it is a really important treatment with breast cancer, even if chemotherapy is not indicated.
Amy (05:36)
And so really a big part of this whole equation is that women two women could have essentially the same breast cancer, same size, same ER-positive receptor setting, and they’ll have very different treatment plans.
Aimee (05:55)
Yes, right. There’s no one size fits all for breast cancer patients.
Amy (06:00)
So, what about HER2 positive breast cancer? Patients are sometimes asked, why am I getting HER2 targeted therapy for a whole year?
Aimee (06:09)
Yes. And for patients who are being treated for their HER2 positive breast cancer, one year of this targeted therapy is the standard of practice. And that’s really based on findings from clinical trials, where some of the trials that were done at three months or six months, they found benefit, but it’s that’s not completely conclusive. And so 12 months actually has been found to be the most beneficial.
You know, they’ve actually done studies looking at twenty-four months and they’d found that patients did not gain much benefit from doing it longer than that. So because of these studies, the standard has become twelve months.
Amy (06:50)
And I think it’s really fortunate that those women who have to have an anti-HER2 positive therapy don’t have to have it and have major side effects.
Aimee (07:00)
Why do breast cancer patients get menopausal symptoms?
Amy (07:09)
So this is one of those situations that comes up and a lot of patients will say, “I didn’t have these kinds of symptoms before I started breast cancer treatment.” Or “I’m already postmenopausal. Why am I now having hot flashes again?” Or for some younger women, they will say, “I feel like I’m ancient. My knees hurt. Everything hurts.” And the reality is there are several reasons for this.
And one of them we touched on just a little bit earlier, and that was the role that estrogen plays in breast cancer and other functions. So the bottom line is chemotherapy affects ovaries and can cause, we hope, temporary menopausal symptoms, but sometimes women do slide into a postmenopausal state. And I just I like to tell people that sometimes this is like thinking about a leaf on a tree that is young and vibrant and has all the nutrients it needs, the sunshine and the rain and all of those things. And then eventually towards the end of its cycle, it dries up and blows away. And that’s what estrogen does for us. So when we don’t have readily access estrogen, then we will get some of those types of symptoms.
Aimee (08:39)
So can you talk more specifically why in our ER-positive breast cancer patients that the symptoms that they have sound like menopause?
Amy (08:49)
Yes, I can tell you. Most patients need to understand that we don’t just carry estrogen around in our ovaries. So you can have ovaries that aren’t producing much estrogen, but there are so many other ways that estrogen is stored in the body. Subcutaneous fat is one of them. And that’s one reason why as women age and they start gaining weight and they are skin starts getting dry, it’s because the body’s trying to hang on to as much estrogen as it can. The thing about estrogen and breast cancer is that if you have an ER-positive breast cancer, we want to do away with as much as we can so that it does not have the ability to feed another breast cancer. So estrogen is going to affect all the tissues throughout the body. So when that treatment starts lowering all those levels, patients are just going to start feeling some of those menopausal symptoms like the hot flashes. If they were having pretty regular menstrual cycles, those cycles are going to change and sometimes they don’t come back. So you might look at early menopause. The big one that I hear from women of all age groups is vaginal dryness and how it feels like sandpaper and how do I stop that and what the world’s going on with that. Another big one is pain and discomfort during sex.
That’s all, all of that is related. And along the same lines, it’s a decrease in libido. So it may be that symptoms are so uncomfortable that sex is taboo. No more. Can’t even think about doing it. It affects sleep. We know that. We know less estrogen is one of those things that causes people to wake up in the middle of the night and not be able to go back to sleep, or it just completely changes their sleep cycles altogether.
Mood changes. That’s huge. It’s kind of hard to discern between I’m tired of this, I don’t want to do this anymore, breast cancer sucks, versus really having difficulty with being able to move through a crisis or move through a bad day or whatever it is. But a lot of that is also related to estrogen.
And then there’s the genital changes, you know, lots of more frequent UTIs. Some women will have copious amounts of vaginal discharge and some women won’t have any at all. And that goes back to that sandpapery feeling. And the whole bottom line is this changes from women all over, woman to woman. It’s all different for every single body.
Aimee (11:31)
Yeah, there’s so much variability. Just like people who are going through natural menopause, there’s a lot of variability. So I think it’s important just to emphasize that women who have ER-positive breast cancers, we are purposefully trying to reduce estrogen to as undetectable levels in their bodies so that we are not stimulating any other cancers that may be lurking about. But that is what is causing those side effects.
Amy (11:58)
Yes, it is. And unfortunately, the body’s not going to distinguish between the estrogen signaling and us wanting to block the cancer from growing. So what about the women who haven’t gone through menopause? And now they’re having difficulties regulating their cycles, or like I said earlier, maybe some of them just stop having their cycles. Mm-hmm. What’s up with that?
Aimee (12:25)
Yeah, that’s a good question because we know that our treatments can affect actually menstrual cycles. And for some women, they may stop completely. Now, some it may be permanent, but not all. So some can actually resume their cycles after stopping treatment. So with chemotherapy, it can depend on the actual chemotherapy medication. Some are more likely to cause this than others.
But a lot of women while they’re on chemotherapy do find a change in their cycles. And some women do have a stop of menstrual cycles. But some do recover. Now, for women who are being treated and their age is close to menopause, they are the ones who are more likely to not regain psychovarian function after chemotherapy has been stopped. We don’t really know who is going to regain function after chemotherapy and who isn’t, but it is something that has to be talked to the patient so that she’s aware that, you know, that is possible.
But sometimes we intentionally suppress ovarian function with medications, because for some women, for their medications to be more effective, they need to be postmenopausal. But if they get these medications to intentionally suppress their ovaries, I mean this is reversible. If they’ve completed their endocrine treatment, then their ovaries can return function again. So the drugs don’t cause a permanent change.
Amy (13:50)
Well, and the other there is always the other option for some women to have an oophorectomy or have those ovaries surgically removed. But again, that speaks to us not knowing how each individual is going to respond. So that’s kind of a drastic step for some to even think about.
Aimee (14:14)
Yeah, so right, our goal is to h make sure women have as little estrogen as possible, but how we meet that goal is going to be a patient by patient decision. So some women aren’t going to feel comfortable with having their ovaries removed, but some women that may be their choice.
Amy (14:31)
And I think it’s it it is really important for patients to hear all of this because we do treat an a lot of people who are in their early, middle and late thirties and even younger. And so when we say, Well, yes, these are symptoms that are similar to to menopausal symptoms, it’s just a whole new way of thinking.
Aimee (14:54)
And I think it’s important to bring up too that for women who are younger and we are making them postmenopausal, we are doing it much faster than what would happen naturally. So that can exaggerate these symptoms. Yeah.
Amy (15:08)
It sure can.
Aimee (15:11)
So Amy, a question for you is if women are having these symptoms and it bothers them, what should they do?
Amy (15:16)
The most important thing is tell your treatment team, tell your navigator, tell your APP, tell your pharmacist. It’s really important for those patients to understand that they it’s part of treatment, but they don’t have to put up with some of these really heinous side effects of what we’re trying to do to reduce the ER surplus there. The same thing is true about each person being different. So we may have to try a few things before we finally get things right for that one particular person. But again, the big important part here is don’t suffer. Tell us early on. Tell us often if you have to. And just don’t suffer. We’re not about suffering. We don’t like to have people suffer.
Aimee (16:02)
Yeah, exactly. And the other thing that I want to emphasize is that women shouldn’t just stop their endocrine therapy because they’re having these side effects. This is where it’s so important to just tell us what’s happening so we might be able to help you manage your symptoms or you can make changes to your treatment so that you actually feel better. And I just want to recommend it to be very cautious about starting herbal supplements.
There’s a lot of things that will say that they are there to help reduce menopausal symptoms, but sometimes these supplements actually are more harmful than helpful. And so, it’s really important that you talk to the healthcare team to make sure that it’s safe to start these supplements.
Amy (16:47)
I agree 100%.
Aimee (16:49)
Okay, Amy, this brings us to our third question. And this is the one that patients really don’t feel comfortable asking. And it’s related right to breast cancer and sexual health. So, a common question that we get is, can I have sex while I’m being treated for my breast cancer?
Amy (17:10)
And the answer is yes. Of course you can. Will you feel like it? Maybe not. If it’s something that is really important to that relationship, you better believe we will find a way. But we have to take into account what kind of treatment you’re having. What is the safety level? How do you really feel about this? How does your partner really feel about this? It’s going to be another one of those factors that is variable from patient to patient. There is nothing written in stone or otherwise that says you can’t have sex just because you’ve got breast cancer.
Aimee (17:53)
I really think patients just need permission to ask that question.
Amy (17:57)
It’s something that I tend to encourage with my patients. And sometimes I get that blank look like they’re going to not going ask me anyway, but at least the door has been opened. I’m open to talking about it. I’m open to answering your questions, but we can move on. And that did happen. I have a patient’s significant other who was upstairs with the patient getting chemotherapy and I get a page to come talk to him and I did. He took me out in the hallway and wanted to know because we had already talked about precautions and safety and those things. His question was about was about oral sex. Part of me thought maybe he was just asking to get my response, my face responding to this, but it was really important to them. That was a very big piece of them. And it was me opening the door and he felt comfortable and she knew that he was asking. It’s a quality of life issue. It’s not a topic that we can ignore. So, it’s very important and we just need to kind of belly up to the bar and talk about it.
Aimee (19:06)
We absolutely have to be open to talk about it more specifically. How can treatments affect sexuality?
Amy (19:13)
Many, many, many ways. First, there’s physical, you know, it’s the patient who has had surgery, even a lumpectomy, which can sometimes leave some unappealing effects. Of course, the mastectomy is a whole new ball game because that is a very emotional and very difficult thing for patients themselves to accept. But then when you’re talking about the partner, that’s a whole new layer of things. Not only just the aesthetics piece of it, but for women who have had surgery and lumpectomy and it’s around the nipple complex, it’s going to be an altered sensation. It’s going to be numbness and, for some it’s just going to not feel like it used to. Something else you have to get used to.
Chemotherapy, all of those side effects, especially fatigue and nausea and changing the sleep pattern and all of those things. Hair loss is a big one. It affects the body image and again can affect quality of life. It’s the endocrine therapy that you and I’ve been talking about. It’s affecting all the again, all the physical parts to that. But it also will decrease libido. And it’s just really hard for people to say, it’s not you, it’s me. And it’s not that I don’t love you. I just don’t want you right this minute.
And that’s hard. That’s a difficult conversation to have for people amongst themselves, not just with their healthcare team, but between the two of them. I think a lot of times for women, it is that piece of them that they’re afraid they’re not going to get back. And I think for a lot of us that’s an automatic push things away. Let’s just go ahead and face it. He’s not ever going to want me, she’s never going to want me, whatever it is. That’s our response.
Again, estrogen has that ability to make you not think that you’re an attractive person. I mean, we get to that point. All of us get to that point. And so that is definitely going to affect intimacy in a relationship.
Aimee (21:25)
Yeah, so it’s really complicated. And there’s just so many factors, right? It’s not just that it’s I don’t feel like having sex physically. It’s all the other things that are along with the treatment. I’m tired. I’m really worried about the way my body looks. Sex is now uncomfortable. I’m having side effects like hot flashes. Or, you know, I’m afraid that my partner might not find me attractive. Or I haven’t thought about sex in six months because this treatment is really taking over my life. So I have a feeling that a lot of women are kind of feel that way.
Now, you had mentioned earlier vaginal dryness, and that is a common side effect of our treatments. So, can you talk more about that side effect?
Amy (22:16)
Absolutely. And again, this is one of those things that people, patients need to speak up and speak up early because this is something that happens pretty early once they’re starting to get into their treatment. The estrogen levels themselves are lower. So that means that all of those tissues are going to be thinning out and they’re going to be drying out and they’re going to be kind of friable. So, that’s what causes the pain. There are a lot of options that our patients have. And they’re not these are not options that are difficult or embarrassing. It’s just being a little proactive about how to fix the situation. It’s not, I will say it is not as easy as just adding some kind of KY jelly. That is absolutely not going to help as much.
This is one of those things that if the patient is comfortable enough asking early on, then then that solution can get on board sooner and we’re not looking up in six months and saying, “I just I’m never going to have sex again.” “I’m never going to be able to.. my husband’s going to leave me.” “My wife’s going to leave me.” And we can take care of it sooner.
Aimee (23:36)
I know that patients are really embarrassed to bring up this topic with their healthcare team.
Amy (23:43)
And many of are, but if you’re comfortable about talking about other things, you’ve already gotten into this whole situation of coming in for a doctor’s visit and you’re mostly nude when everybody’s prodding and poking and all those things. So, the inhibition has to be lessened a little bit. But if you’re you know, if the patient is comfortable talking about all those other things… constipation. Is there any other topic but constipation that people just absolutely say other than sex that people are like, I can’t even talk about that. That’s too personal. It may be, but it’s a function and a quality of life, and we’re the ones to help. So, if you could talk about that, we can talk about sex and some of the things that are prohibiting good relationships.
Aimee (24:35)
So, a lot of patients will probably notice that, okay, my cancer team hasn’t asked me about sex, so I’m guessing that this is something I shouldn’t bring up.
Amy (24:45)
Bring it up. Talk about it. And if they haven’t come to you and said anything about it, the ball’s in your court. The patient needs to bring it up. And for those providers and clinicians who are a little bit iffy about talking about it, talk about it. Not getting anything done if we don’t talk.
So the American Cancer Society, which actually backs all this up, says specifically, healthcare professionals don’t always ask about sexual problems, so patients may need to start the conversation themselves. You can say, “I’ve noticed some changes in my sexual health since starting treatment. Can we talk about that?” And the answer is always yes. Or they’ll say, “Sex has become really uncomfortable. Is there anything we can do?” Or even “I don’t really have a sex drive anymore. Is that normal?” And they’re all good questions.
And they all deserve an answer.
Aimee (25:46)
And what about the partner? I have a feeling that a lot of partners just aren’t even sure what to do, what not to do, and they may be afraid to talk about it, too.
Amy (25:55)
Well, and that fear is also pretty readily available too, right? You’ve already had one of the biggest scares of your whole life. And even now you’re getting back things are getting kind of back to normal or you want to keep them normal. Partners are just afraid of hurting their loved one, who would be the patient, especially after surgery.
Aimee (26:15)
So, communication is such the key, right? Communicating with your healthcare team, communicating with your partner, that’s going to be so important, so that you can learn the new you and get back hopefully to a new normal.
Amy (26:29)
Yes. So here we are. We’ve answered three questions. Let’s do a quick lightning round. If you could give women with breast cancer three things to remember from this conversation, what would they be?
Aimee (26:44)
Okay, so first is a long treatment plan doesn’t necessarily mean something is wrong, right? We have different treatments, they have different purposes, and they all play a different role, but the goal is to keep that cancer from coming back, and that can mean long treatment plans are needed to do that.
Secondly, menopausal symptoms are real side effects from breast cancer treatments, but you don’t have to suffer silently. So, tell your healthcare team that it’s bothering you and keep that communication open.
And then thirdly, sexual health is health. If cancer treatment is affecting your sex life, intimacy, body image, relationship, tell someone.
Amy (27:33)
And I’m going to add one more to that. Don’t be embarrassed. Don’t ever feel like there is a question that we haven’t heard or that we don’t want to hear. We want to hear this. So don’t ever be embarrassed about what your question would be.
Aimee (27:50)
That is such a good point.
Amy (27:52)
One of the things we hope patients take away from this conversation is that breast cancer treatment doesn’t just affect the cancer. It can affect your hormones, your relationships, your body image, your sexuality, and just about every other part of your life.
Aimee (28:09)
And that’s why it’s so important to talk to your healthcare team about the things that are bothering you, even if these things feel awkward or just uncomfortable to bring up. And during Breast Cancer Awareness Month, we want to remind everyone that awareness isn’t just about being diagnosed with breast cancer. It’s about helping people understand what comes with the diagnosis, making sure that patients have the information and support that they need throughout this long entire treatment journey.
Amy and I, thank you for joining us for another episode of Voices in Oncology from STO. So, I’m Aimee.
Amy (28:47)
And I’m Amy.
Aimee (28:48)
This has been STO’s Voices in Oncology. To listen to other topics on oncology, visit our website, STO-online.org. And until next time, keep listening, keep learning, and most importantly, keep remembering that the patient’s voice matters.
Disclaimer
Voices in Oncology is produced by the Society for Translational Oncology, STO, for educational and informational purposes only. Content does not constitute medical advice and should not be used as a substitute for professional clinical judgment. The views and opinions expressed by guests are their own and do not reflect the official position of STO. Mention of any product, service, organization, or therapy does not constitute an STO endorsement.
Clinicians should exercise independent judgment in applying any information discussed to patient care.