Show transcript
Dr. Diane Reidy-Lagunes:
Today on the pod, we're continuing the conversation around breast cancer and what you need to know about treatments, including chemotherapy. We've previously talked about breast cancer surgery, radiation, and reconstruction on episode 52. Breast cancer is a disease that is thankfully highly curable yet for some women, recurrence may happen even many years out. Today we will discuss the fear of recurrence and how we deal with that challenge around finishing treatment, including the feeling of, "Now what?" Let's talk about it.
Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcast.
Today we are thrilled to be joined by Dr. Julia Brockway-Marchello, a breast medical oncologist; Jenna Galinsky, a nurse practitioner who collaborates closely and cares for patients with Dr. Brockway; as well as Adriana Olivo, a nurse practitioner who specializes in breast cancer survivorship and improving our patients' quality of lives. They all work in our regional care network where they bring MSK's exceptional care to the local community. Thank you all so much for joining me.
Dr. Julia Brockway-Marchello:
Thank you for having us.
Dr. Diane Reidy-Lagunes:
We often talk on the pod about how you're sort of in this storm and there's so much information coming at you, and obviously you have to put tremendous support and trust in the doc, but you want to be able to ask the appropriate question. So Julia, can you just share your approach on when you're talking to a patient about how you're going to give the therapies and why?
Dr. Julia Brockway-Marchello:
Sure. The first thing I talk about is what is our intent of treatment? I always, always very early on in the conversation, tell the patient, “You're going to be okay. We're going to take care of you.” If this is early-stage disease, I use the word “cure” from the very beginning. I find that often in the conversation, that does set us in a good place of ease and peace, and we know how to move forward in the conversation when we use the word “cure” with early-stage disease.
When we talk about cancer staging, this is what tells us what type of treatment approach to use. We have to always know what the tumor size is. Are there lymph nodes involved? This is what tells us whether or not chemotherapy would be part of the equation.
There are different chemotherapy regimens that we use in breast cancer dependent on stage, but also dependent on, very importantly, patient factors. So what are the patient’s other health conditions, the patient’s age and frailty? Also, it’s knowing that we are balancing out the toxicities of our treatment with our intent to cure. So I tell patients that yes, this is going to be a tough part and there will be good days, there will be bad days, but we will get beyond it and we will get through it.
Dr. Diane Reidy-Lagunes:
Chemotherapy, also known as cytotoxic therapies; and endocrine therapy, also known as anti-estrogen treatments, are cancer treatments that can be used either in tandem or alone. How do you explain the difference to your patients?
Dr. Julia Brockway-Marchello:
That's a great question and a complex one in that we have many different types of breast cancer that we treat. We talk about breast cancer from stage 0, also known as DCIS, to stage 4 breast cancer or metastatic breast cancer. When we talk about the treatments of these types of cancer, we talk about: do we treat for cure in early-stage disease? Or are we treating to control disease, which is how we approach stage 4 breast cancer?
When we talk about which types of treatment to use, it depends on the biology and which type of cancer we're talking about. There are estrogen-driven breast cancers, also known as ER-positive or estrogen receptor-positive breast cancers. There are HER2-positive breast cancers, breast cancers that contain a receptor called HER2, where we can use special targeting agents in combination with chemotherapy to treat these cancers. And then when these receptors are not present on the cancer cells, these are known as triple-negative breast cancers, that do not contain estrogen, progesterone, or HER2 receptors. These cancers are treated with chemotherapy and immunotherapies as well.
When we choose which type of treatment to use, it depends on what type of cancer we're talking about. Estrogen-driven breast cancers are typically treated with anti-estrogen therapies or endocrine therapies and occasionally, with chemotherapies as well, depending on the tumor stage. The type of treatments you use for HER2 cancers and triple-negative cancers are also dependent on the stage of cancer that we are dealing with.
Dr. Diane Reidy-Lagunes:
Triple-negative, meaning that they don't have the estrogen receptor or the HER2 receptor?
Dr. Julia Brockway-Marchello:
Correct. Triple-negative breast cancer means that the cancer cells do not contain estrogen receptors, progesterone receptors, or HER2 receptors. These cancers are more aggressive in their biology, and they're always treated with chemotherapy with a consideration of immunotherapy as well.
Dr. Diane Reidy-Lagunes:
Let's hear from Jana Geyer, who was diagnosed with breast cancer in 2018 when she was just 33. Prior to coming at MSK, Jana had a lump that she was concerned about, but kept being told it was benign when in fact it was malignant. This experience prompted her to start a movement to empower young people about their health. Last year, Jana was diagnosed with recurrence and now has stage 4 metastatic cancer. She shares her approach.
Jana:
I am more proactive about my healthcare. That's just sort of who I am now. Ask your provider all of the questions. There are all these drugs out there. Tell me why this one is the one we’re doing first. Find out what the drugs do, how they prevent the cancer from spreading. What are the side effects? Why take this one and not that one? Why is this one first and this one is second? If this one doesn't work, why? Ask why. You have no control over cancer, but you do have control over knowing the information.
Dr. Diane Reidy-Lagunes:
I think that's so critically important to advocate for oneself.
Dr. Julia Brockway-Marchello:
That’s one of the most critical parts of our conversation too, knowing that patients, as Jana said, are empowered to be informed with what options they may have and how we will get them through the treatment.
Dr. Diane Reidy-Lagunes:
The good news is that you all just keep improving the outcomes with new therapies, but sometimes that means you change the goalposts. A plan is critical, right? When it's 4 to 6 months, you're like, “Okay, let's do this. Let's go.” But sometimes that time changes. So can you explain a little bit about how long our patients may be on these treatments, recognizing, like you said, not all these cancers are the same.
Dr. Julia Brockway-Marchello:
So also dependent on the type of cancer and the stage of cancer, sometimes a decision is made with a multidisciplinary team that the chemotherapy should come before surgery in order to shrink the tumor, in order to allow for a smaller surgery, in order to provide treatment to the whole body systemically in these cancers that are higher risk. In those cases, the treatment upfront can usually be anywhere from 3 months to 5 months of chemotherapy, and then patients go for surgery. Sometimes there's additional therapy that comes after surgery, such as immunotherapies that we use in triple-negative breast cancer or in HER2-positive breast cancer, where we have these patients on one full year of anti-HER2 therapies.
Anti-estrogen therapies on the other hand are usually used after surgery in what's called the adjuvant setting. Anti-estrogen therapies are given for at least 5 years up to 10 years. These are slow growing cancers, and so we do maintain patients on therapies – pills, but therapies nonetheless – for up to 10 years dependent on their risk. So in balancing toxicity and in balancing our goals of treatment – we do know that the longer duration of therapy isn't for everyone – those with high-risk disease do tend to benefit from a longer time of being on these pills.
Dr. Diane Reidy-Lagunes:
Got it. Is there anything that you advise patients to do either pre- or post- these treatments?
Dr. Julia Brockway-Marchello:
One of the fears that patients have when they come in is, “What does this mean in my life? Do I have to stop working? What about my kids? What about my elderly parents that I take care of? What about myself?”
I always try to impress upon patients that our goal is that you're living through this. The expectation is that you're doing all of the things that you need to do in your everyday life, but giving yourself the grace that there may be some days that you're not going to be 100% and those are the days that you'll listen to your body and you'll take that rest and you'll take that break.
I tell patients in preparing for chemotherapy, if you are physically active – if you exercise, excellent – that will help you to get through the day-to-day of the treatment, help with fatigue, especially help with a lot of the side effects of treatment, but not to start a new exercise regimen when you're about to embark on chemotherapy treatment. I do find that that exercise does help immensely, whether it's walking around the block, swimming, biking, running. Just making sure that you're focusing on your overall health, eating well – though not taking on a new diet regimen when you are about to start chemotherapy – but being mindful of the things that you are eating when you're getting your treatment.
This is a time that you have to focus on you, and that's okay. This is the time to take care of yourself. This is the time to call in on the support of those around you, including us, including your care team to help to support you through this treatment.
Dr. Diane Reidy-Lagunes:
For our listeners, we dedicated a whole episode of a podcast to discussing exercise both as a prevention as well as treatment method.
Jenna, in addition to the traditional side effects that we try to manage with supportive medications such as nausea and vomiting, we know that hair loss is a real big concern for our patients. We talked about scalp cooling in prior episodes as well. Any other advice to give on patients when they go through chemotherapy treatments? I think diet and exercise as tolerated are important ones, but anything else you have to share?
Jenna Galinsky:
Giving yourself grace, allowing people the time to rest. There are a couple options in terms of other side effects with regards to neuropathy. There's the option to try cooling similar to scalp cooling. We can do it with the fingers and toes to try to help with neuropathy. We use ice packs during those drugs that cause neuropathy to hopefully delay its onset or prevent its onset. Scalp cooling is always an option for people who would prefer to try to prevent hair loss.
Dr. Diane Reidy-Lagunes:
Great. One of the most important conversations that we need to have and often don't is around sexual health and some of the problems that we may have while on endocrine therapy. We actually have a whole episode, episode 12, dedicated to a woman's guide to sexual health and chemotherapy treatments. For those who may not have access to our sexual health clinic here at MSK, is there anything that you provide to your patients in terms of education to mitigate that risk?
Jenna Galinsky:
Absolutely. There are so many more options now in terms of managing these side effects. There are several options with regards to hot flashes such as acupuncture and supplements that have been helpful. There are plenty of therapies to manage vaginal dryness, which is a common issue for many of our patients. There are drugs now that can help with that, which are safe to use in combination with endocrine therapy, which have been very helpful.
Dr. Diane Reidy-Lagunes:
Speaking of which Julia, as you said, one of the biggest problems of breast cancer is that it can be driven by this estrogen. So the benefit of this endocrine therapy is it can cut that off and stop the cancers from growing. But so many women who are going through menopause use hormone replacement therapies and some sort of estrogen to help with those side effects. Is that a “thou shall never use hormone replacement therapy in patients that have had breast cancer”? Or is the jury still out? What's your take on that?
Dr. Julia Brockway-Marchello:
What we're doing when we're using anti-estrogen medications is blocking the body's estrogen production, whether it be with ovarian suppression blocking the ovaries from making estrogen in premenopausal patients, or by blocking the production of estrogen elsewhere in the body after women have gone through menopause. And that is our goal. We're taking away the estrogen that is made in our body because that is the fuel that leads these cancer cells to grow.
So the thought of using outside hormones and taking those in systemically in the form of hormone replacement therapy in a patient who has a history of estrogen-driven breast cancer is something that we absolutely avoid because it is the antithesis of what we are doing. Systemic estrogen replacement is not recommended in our patients with a history of estrogen-driven breast cancer.
I would also not recommend it in patients who maybe have a strong risk of breast cancer related to their family history, related to genetics. I would not advise using hormone replacement therapy in a patient who does not have a known diagnosis of breast cancer but still may be at higher risk.
That being said, as Jenna mentioned, we do use vaginal estrogen, topical estrogens, that can help immensely with vaginal dryness, which is one of the side effects of the medications that we use, as well as something that many women struggle with as they go into menopause. There is data supporting the use of vaginal estrogen in patients to treat vaginal dryness regardless of their breast cancer history because there is not a significant amount of systemic absorption enough to increase their risk of breast cancer recurrence.
Quality of life is so important to our patients. So while we are using these treatments to reduce the risk of the cancer coming back, we also need to make sure that they're living their lives and they're maintaining their quality of life.
Dr. Diane Reidy-Lagunes:
Okay. Super helpful. Along those lines, because I know you really focus on quality of life, I want to go back to that patient population that are curative intent. We say they can go on for 10 years on anti-estrogen therapy, which can interfere with their quality of life. We just talked about sexual health, the arthritis, the myalgias, so how do you weigh the risks and benefits and the nuances of those quality-of-life measures for some patients that just have a hard time? Because I've heard patients say, “My doctor tells me I have to be on it for this long,” and they're struggling a little bit. Obviously, we are going for the cure, but that quality of life can be an issue for many of our patients. We'd just love to hear how you navigate that conversation.
Dr. Julia Brockway-Marchello:
One thing that I always try to clear the air on is when patients come in on the first visit and they say, “I heard that everyone has a horrible time with this horrible drug that you're about to talk to me about.” So setting the mindset of, “Let's go into this with an open mind.” Every patient is different, and while it is so important to hear about other people's experiences because often there are shared threads of, “Well this happened to me and this happened to me and this is helpful for me,” it may not be helpful for a patient who we are recommending these medications to, if they're going into it thinking, “Everyone has a hard time on this drug. That will be me.” So first I clear the air with that.
Then I remind patients that while we are making this recommendation for cure, to reduce the risk of cancer coming back, we have to provide you with the resources to manage the side effects that you may have. And so while I do have patients taking these medicines who have zero side effects, I also have patients, as you alluded to, who call and say, “I can't do this for 5, 10 years. What can you do to help me?” We can recommend taking anti-inflammatory medications if arthralgias are an issue, but if a patient is taking Motrin around the clock, then we need to make a change. We have 3 aromatase inhibitors that we use in the post-menopausal setting. Premenopausal women have only tamoxifen as an option.
When we talk about these medications, we talk about how we can switch and try one of the other meds that still would provide a benefit in reducing risk of cancer recurrence. Maybe one patient just has a better time with one pill over another. That's one way that we can help to get patients through the drugs, is by switching the medicine.
But if it's coming close to that 5-year point, and if it's been a struggle getting to that 5 years, then maybe this would be the time to make the decision that maybe we don't need to extend it any further because we've already had such a hard time getting here.
In addition to us being medical providers, giving patients the resources to support them through side effects, we also try to work with patients on the mindfulness of, “Why am I taking this? What am I doing this for?” And if at the end of the day a patient says, “The balance of my quality of life and the toxicity of this medicine is not it for me,” then we have to give patients our blessing and say, “Well, we know that if the cancer comes back and you’re not on this medicine, we’ll take it from there.” We’ll figure it out if that time comes and that's okay too.
Dr. Diane Reidy-Lagunes:
I think that's so critically important. Adriana, what you do is really important. I think so many of our patients are sort of terrified when they go from Dr. Brockway or Jenna to you, but then they meet you and they're like, “Where have you been my whole life?”
Can you talk to us about how you manage some of those side effects that patients have when they're on anti-estrogen therapies or any other therapies, and tricks that you may provide for your patients when they're at this point?
Adriana Olivo:
Sure. So like you said, the baton gets passed to me at some point during their trajectory of cancer care. These patients are on medications for years so it's really important, like Dr. Brockway said, to balance the quality of life and the risk of recurrence. We've really come a long way with using medications and supplements to try to help mitigate some of these side effects.
In terms of hot flashes, we talk about non-hormonal medications. There are some supplements we could use, but really we talk about things like acupuncture, avoiding caffeine, avoiding triggers, avoiding spicy foods, perhaps alcohol, dressing in layers. For vaginal dryness, Dr. Brockway already alluded that we do have vaginal estrogens we can use, but there are also some non-hormonal vaginal moisturizers and lubricants that we do a lot of education about.
Dr. Diane Reidy-Lagunes:
I'd like to listen to Rachel. Rachel was diagnosed with breast cancer at the age of 37. She had estrogen-positive and HER2-positive disease. She's been in survivorship for 12 years and talks about the emotional transition out of the treatment to her final treatment, which was this targeted treatment called Herceptin. Let's take a listen.
Rachel:
It was kind of a drag to still have to go to the infusion suite for a year – Herceptin was for a year – but it's also sort of comforting to still be under the care and watchful eyes with those nurses, right? But then one day they send you out the door, and it was terrifying. I was fine. I was okay. But there's something about knowing that you're being watched in that chemo suite and the care that they take. It was really kind of a harsh reality, a little bit scary.
Dr. Diane Reidy-Lagunes:
I have definitely heard this from our patients, that emotional component of the safety net, if you will, of having us all around and then one day, it's gone. Unlike radiation oncology, there's no bell. Like, where's the bell to ring?
Can one of you talk to me about the emotional part of this and how you manage that transition? Adriana, you probably have this more than we do in regard to survivorship. I would love to hear your thoughts.
Adriana Olivo:
I think this is a huge part of survivorship. I don't think that fear of recurrence ever completely goes away. I just try to give a lot of reassurance. We talk about the medications, we talk about other risk-reducing factors such as exercise, diet, maintaining their health overall, making sure that they continue their relationship with their primary care physician, making sure their heart health is in check. We really try to focus on the whole body. We talk about how we want them to not live in fear. I want the patients to live their life, but also be vigilant about possible things that might be red flags.
I always encourage them, “If you're worried, if you're losing sleep about this, please call me because we could talk through it and we could tell you, you know, ‘Try this, try that, or come in, I need to see you.’” That's kind of the whole thing. I don't want patients to feel like they're just lost in space.
Dr. Diane Reidy-Lagunes:
Yeah, and I think we know that these therapies increase curative intent and increase the cure for our patients, but there are potentially some later and long-term side effects of those therapies. How does one monitor those concerns?
Adriana Olivo:
In terms of other side effects, we talk about some of the medications can affect the heart. I recommend making sure that they see a cardiologist or make sure that they're in touch with their primary care to make sure that they are having checks. We also talk about bone density. Aromatase inhibitors can affect the bones, so we make sure that we are ordering bone density exams.
Then just really supportive care for everything else. I think it’s really important that we say, “We got you. You're not abandoned here. We are all working together and we're going to get you through this.”
Dr. Julia Brockway-Marchello:
Hearing this from Adriana is so important, especially from my end, since I'm meeting the patient for the first time. I try in my first visit to tell them this will be the trajectory that we will be taking care of you here in the medical oncology clinic, then after a few years, we will transition and graduate to survivorship care, where the focus is on long-term. Setting that expectation early on, that you don't always need to be followed by the medical oncology team, and that's okay. You will be followed by somebody who has an expertise in the needs of our cancer survivors.
The definition of cancer survivorship begins at the day of diagnosis and continues through the rest of a patient's life. We are always there for them, whether that be within our medical oncology visits, or coming back and forth to chemotherapy, or whether that be with annual survivorship follow-up visits or back out in the community with their primary care doctor. Having a diagnosis of breast cancer is something that you will keep with you for the rest of your life but, as Adriana said, you're living your life through that.
Dr. Diane Reidy-Lagunes:
As we talked about earlier, there's also the fear of recurrence. So although we want and hope and expect that survivorship is just that, there is the concern that it could potentially come back.
Let's hear from Meagan who was diagnosed with breast cancer just a day before her 29th birthday. She went through it all: fertility preservation, chemotherapy, bilateral mastectomy, as well as reconstruction. Meagan's now 32, and she shares what it's like navigating survivorship in the early stages of motherhood.
Meagan:
When we talk about survivorship, I always say that just because you're cancer-free doesn't mean you're free from cancer. It's always lurking in the background. Anything out of the norm that I feel in my body, my brain instantly goes to, “What if this is a recurrence? What if this is something that I really need to pay attention to?” I went back to Dr. Brockway more times than I can probably count at this point saying, "I have a pain in this place." She's been amazing with being able to talk me through things, and if it is actually sounding like it's a potential risk, setting me up with any testing to be able to ease my mind and not allow me to continue to ruminate. That’s been one of the biggest things for me in survivorship, that medical health anxiety. That's really become prominent for me.
Dr. Diane Reidy-Lagunes:
I think she says that so beautifully in that it's a real fear. How do you help patients deal with that fear? The data shows that scans don't even really help. I think, at least in my world (colon cancer), we do a scan every 3 months and then we can breathe a little sigh of relief. I would love to hear how you navigate that.
Dr. Julia Brockway-Marchello:
Absolutely. Anxiety and fear of recurrence is something that is so integral to what the experience is as a cancer patient of any cancer. But in breast cancer in particular, as you mentioned, there is no guideline to perform screening imaging to detect a recurrence in breast cancer. This is one of the toughest conversations that I have with patients with early-stage disease.
What I try to reinforce is that screening is to detect early disease and cure it, but once the cancer is somewhere else in the body, whether it be 1 spot in a bone or 3 spots in the liver, it is stage 4 breast cancer if it is outside of the breast and the lymph nodes, and in that case it is incurable. It is treatable and we can try to control it, and we have patients with stage 4 disease who live for years and years and years on treatment.
But doing scans and scans and scans and exposing our patients, particularly young patients, to radiation associated with these scans, is not going to save a life. That is why it is not recommended, because you are not going to save lives or have a survival benefit to putting patients through routine scans to catch disease early, because at that point it is not early.
I talk to patients about the vigilance of knowing your body, knowing what's normal for you. Everyone's going to have a headache when they have a stressful day. Everyone's going to have a cough that they can't get rid of when they're sick. But it's the things that, you know, “This is a different headache for me. This usually gets better with Tylenol, but this time it's not. This back pain is not like the back pain that I usually have, and that's what I'm going to call my team and let them know.” Then we talk about what kind of a workup to do, and most often this is the normal headache or the normal back pain or the normal cough that won't go away. But in a patient with a history of cancer, it might not be.
So communicate with the team, knowing that it's always okay to call us and let us know how you're feeling. Sometimes these workups are done with their primary care doctors too, which is why, as Adriana said, it's important to maintain a relationship with your team. That's part of our vigilance and our managing anxiety, knowing that we're here to listen, we're here to talk you through what may be going on, and to work it up as needed.
Dr. Diane Reidy-Lagunes:
Yeah, I think that's a really important point to emphasize. I take care of colon cancer. The reason why we do scans cancer is up to 25% of the time, they may have one lesion in the liver or the lung that we can resect for potentially curative intent, but that's different than breast cancer. If it recurs in colon cancer, the overall survival is usually very short. But for many breast cancers, like you said, even though we don't have a way to detect it early for curative intent again, they could still live for many decades depending on the disease. So I think that idea of, “How are we not looking?” is very hard for patients, but you explained it beautifully.
Adriana Olivo:
I get asked that question almost on a daily basis with these patients. “How do you know? How do you know that I don't have a recurrence?” I think it's really important to talk to patients and get the education and information out there so that patients are empowered to ask the questions and to be aware of their body and to take care of themselves.
Dr. Diane Reidy-Lagunes:
Another reason to be an advocate for your own body and know when something's not right. Any final thoughts?
Dr. Julia Brockway-Marchello:
The most important thing that I tell patients, whether they have stage 0 disease or stage 4 disease, is live your life. We are doing this so that you can live your life. Take care of your family, take time for yourself, take the vacation. Everything that we're doing is so that you can live and enjoy life, because that's what it's all for. So through the treatment and beyond, you're here to take care of yourself, to take care of the people who love you, to allow the people who love you to take care of you, and live.
That is what I find to be the most rewarding part of this job, is getting to know the humans who are sitting across from me, such beautiful people, their families, their loved ones. Getting to take care of them throughout this journey, hearing their voices here on this podcast too, it's just a really special, really remarkable job, career, life for me, and I'm so fortunate to do it alongside all of you too.
Adriana Olivo:
Agreed.
Dr. Diane Reidy-Lagunes:
Beautifully said. Having a team like the ones that we're talking to today is so critically important, and that's where the magic is made. I'm so grateful for the three of you for joining us today.
Dr. Julia Brockway-Marchello:
Thank you.
Dr. Diane Reidy-Lagunes:
Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or just send us your questions, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing it on Apple Podcasts or wherever you listen. Any products mentioned on this show are not official endorsements by Memorial Sloan Kettering. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.