Hello, and thank you for joining this “CURE Connections®” program titled “The Psychosocial Impact of Ovarian Cancer.” There are many important aspects of cancer care, and one very important factor is ensuring mental and emotional well-being. Today, we will discuss the various stages of a patient’s journey with ovarian cancer and provide insight on what steps might be taken to improve their care.

Hi, I’m Dr. Shubham Pant, an oncologist at The University of Texas MD Anderson Cancer Cancer in Houston, Texas. With me today is Doña Harman, as well as her physician, Dr. Ramez Eskander, who is an assistant clinical professor of gynecological oncology at the University of California San Diego Health Moores Cancer Center. Lastly, I’d like to welcome Dr. Jeremy Hirst, an associate director of patient and family support services at the University of California San Diego Moores Cancer Center. Thank you so much for joining us. Let’s begin.

Doña, I’m going to start with you. You were diagnosed with ovarian cancer approximately about three years back. Walk us through your diagnosis. How was it diagnosed, and what were the next steps that you took after the diagnosis?

 The summer before I was diagnosed, I started noticing swelling in my abdomen and some irregularity. I remember being in the ocean with my granddaughter and she was kicking her legs, and I was having this sense that I don’t want her to kick me here, and that was unusual. I’m pretty athletic. So I went to the doctor and got an exam and she said, I think you’re fine. Maybe you could lose a little weight, maybe exercise some more and drink more water. And then I remembered that my dad died of cancer. And before he died, he said to me to watch for cancer in my 50s.

What age was he when he was diagnosed with cancer?

 He was in his 60s, but he had been going to a doctor for a number of years and told them to watch for cancer. There’s cancer everywhere in my family. And they didn’t diagnose it until it was everywhere. And so he passed in his late 60s. But I heard his voice all those years later. I thought, “Oh, I’m in my late 50s. I’d better go back to that doctor.” So I went back, and she was on it. She just said, let’s get an ultrasound, and it was diagnosed pretty quickly after that.

So that’s good. You advocated for your own care. You went back; you were proactive. And your dad’s voice, that helped you and guided you through that. That’s just amazing.

 An ultrasound, and then followed by an MRI [magnetic resonance imaging].

And they said this is cancer. And then what was your reaction to discovering you had cancer? Did everything freeze and stop? What was your reaction to getting this diagnosis?

 It’s a fog. It was three years ago, so I think in some ways the body makes things a little unclear. I can’t remember exactly how I felt. Certainly it was a bummer, but I had so much support around me. There were all kinds of little things that came together, one of which was that my daughter’s dearest friend was in her fellowship, her final year as a gynecologic oncologist. And when she found out I had cancer, she called my daughter and she said, “I have the perfect doctor for you.”

And that’s the one hopefully sitting right next to you.

 Well, it’s this doctor right here, yes. She said he’s an excellent surgeon and your personalities will mesh. And that was so important, because you’re traveling a long road with somebody, and you need to have that trust to put your head down, do the work, be a good patient, show up, and just work through it day by day. That was a huge difference. I was really fortunate to find Dr. Eskander.

Your friends and family really helped you find the right direction. Do you remember, did you start googling it the first day trying to figure out where things are? You googled Dr. Eskander, saw his good-looking photograph, and said, “This guy looks like somebody who could take me through my diagnosis.” Did you already research him before you went and saw him, or did you just go by people telling you that this would be a good doctor to go to?

 I really trusted her. I’ve known her since she was 3 years old, and there’s a special thing about Dr. Teresa Codini Longoria. So I felt really good. It’s a very confusing world. You need surgery yesterday, so you don’t have a lot of time to research. And I had seen another doctor and their approach was, I remember being told in the waiting room that this was going to be a cakewalk. She said to me, “If I was a dentist, this would be like filling a cavity. If I was a pilot, this would be like flying a commuter flight.” And I just remember that didn’t resonate with me.

And did you have any previous knowledge of ovarian cancer? I know you had cancer in the family, but did you have previous knowledge of ovarian cancer? Did a friend or somebody have it? Did you have any understanding of what this was and what the journey would be?

A distant friend I knew had had it, but I really had no experience with it. It was quite the shock. I didn’t see it coming.

Dr. Eskander, tell me, when patients show up the first time, how do you reassure them that it’s going to be fine? Or is this more serious? I’m sure you see patients in different stages. Some could be surgical candidates; some are not surgical candidates. What is your reaction? What kind of steps do you take when you see a patient for the first time?

 I think, just like my conversation with Doña when I saw her in the office with her family, the priority in the initial visits is to make sure you’re listening to the patient’s concerns and questions but also giving them a foundation and an understanding of the plan and the steps moving ahead. It’s a long process, and there are pieces of information that we gather along the way that are independent from what the initial presentation may be or what the initial scans may show. So I emphasize in the beginning that this is the information we have. There’s some more information gathering that we need to do. Regardless of what we find, we’re going to synthesize a plan that’s going to be appropriate for your care. And many times, it is obviously an overwhelming conversation. There are a lot of questions, so I encourage families and patients to reach out and ask me any questions they have in the first weeks, as well as throughout the entire process, but certainly as they’re digesting this information and learning more about their diagnosis.

Dr. Hirst, what is your thought about patients who are first diagnosed with cancer and what are the reactions you see in your practice?

 It’s often a reaction of extreme stress. People describe it as if they’ve been hit by a truck all of a sudden. Those folks are swimming in the ocean like Doña was, totally fine, and then all of a sudden start feeling something wrong and get this life-altering diagnosis. People react in a variety of ways, but frequently, it’s initially with terror and a desperate search for some answers and trying to get control back. That idea of losing control is quite common. “Oh my gosh, everything was laid out in order in my life. I was a grandma, I was working, I was whatever.” Then all of a sudden we got this cancer diagnosis that really shakes everything up.

I think, as Dr. Eskander says, the doctor’s office is the first place where they’re able to get some control back. And hearing that information, even though there are still some unknowns, allows us to say, “OK, now there’s a road map,” and starts letting some of that terror go and feeling like, “OK, now we’ve got some steps to take moving forward.” That’s a very typical way. Other people are very practical. “OK, I wasn’t an expert on cancer, but over the past 24 hours, I’ve read everything there is to know about it, and I know what we’re going to do,” in a calm and collected manner. For others, it’s like a feeling of denial, “No, this can’t be happening to me. I’m going to put off getting care. I’m going to put off treatment.”

Reacting to a Diagnosis of Ovarian Cancer

Let’s say a patient comes to you. What kind of techniques can they use, or medication? What kind of techniques can they use in a psychological aspect to try to deal with this diagnosis? Are there any tips you can give to some of the patients who are going through it?

 Often what seems to help the most is to look back in someone’s life and see at other times in their lives when they’ve faced challenges, what has helped them through those challenges? It’s hard to all of a sudden develop a new coping strategy in the midst of a crisis. For some people, if they’ve had a medication practice, make sure they stick with that. If they’ve had an exercise routine that is stress relieving, stick with that. Reaching out to friends and family is often a universal way of getting support. Faith is another frequent method for folks who have had a real spiritual or faith-based life; not giving that up right now is a good idea. And then certainly seeking out professional help for a lot of folks is helpful, whether it’s with a psychologist, a psychiatrist, social workers, peer-like support groups or more professional support groups. There are a variety of things.

That’s very important. If you need help, ask for help. I think that’s the important point. I know it’s been about three years, but do you remember anything in regard to emotions or what you were thinking about, what was going through your head when you were just diagnosed? Was it exactly as Dr. Hirst said, gut-wrenching? Were you like, “Whoa, my life is stopping. I need to find somebody to treat this?” What kind of emotions went through your mind at that time?

 I honestly don’t remember the emotion. I know that it was terror, though — I’m sure it was &mdash; and just trying to find some control in a situation where I didn’t feel control. For me that was found in researching it. I did go on the internet to very reputable sites. I went to 

, ASCO [American Society of Clinical Oncology], ESMO [European Society for Medical Oncology], 

®, where they have actual physicians talking about it and talking about the research. And one of the things that helped me navigate the journey was to realize that there are a lot of new therapies coming up for ovarian cancer. Having ovarian cancer today is much different from having it, say, 10 years ago. That brought me solace, but I’m sure I drove Dr. Eskander crazy because I was just asking, what about this and what about that?

Dr. Eskander, is that how you remember it?

 Actually, it’s exactly as I remember it.

But I think you’re right, there are a lot of emotions and everything you go through. And you’re right, Dr. Hirst. As you said, there is some denial that would be in all of us looking at it, saying my life was really going well, was perfect, and then suddenly I have to readjust my life to deal with this. But I think, Doña, what you did was close to perfect. You researched it a little, you took good advice, you found a doctor whom you were confident with, and you followed the path. That was amazing. But tell me this. Doña, I’ll start with you. Are there a couple of pieces of information that you could relay to somebody who’s just dealing with ovarian cancer? Let’s say somebody has just had a diagnosis of ovarian cancer — it’s all new to them. What kind of advice would you give them?

 Well, I think just what you said, find a doctor whom you know you can go on this journey with, that you can trust. And Dr. Eskander — I don’t know if you still do this &mdash; gave me a number where I could text him. And he said, “I do this for all my patients. You’re not special, this is what I do.” I just felt I had a connection, a lifeline, and that I knew we we’re in this together. He’s invested in me, and I’m invested in him. I would encourage patients that it’s everything: finding a good doctor at the very beginning and then doing the work. That’s showing up, getting your scans, doing the chemotherapy, following all the scientific work that’s been laid out before you began this journey. That would be No. 1. And No. 2 is, I would try to worry a little less. I don’t talk about it, but I know nights seemed to be the hardest time for me. I remember the tool I used, because I don’t really meditate, was coming up with the “I am safe tonight. Tonight, nothing is going to happen to me. I can go to sleep, just rest, don’t worry about tomorrow.”

That’s amazing, Doña. Dr. Eskander, what information would you relay to a newly diagnosed ovarian cancer patient?

 I echo a lot of the things Doña just mentioned. I think communication is critical. Patients are coming into this with a new diagnosis, as Dr. Hirst just said. They’re fearful, apprehensive about what may come, and worried, especially in the context of an ovarian cancer diagnosis. But communicate, find the physician whom you feel like you can truly reach out to, where the dialogue is an open dialogue and who spends the time that’s needed to talk to you and your family throughout this process, and have some degree of faith that this process is going to move forward. There will be steps along the road. We may run into some bumps in the road, but we’ll get beyond them. I echo what she just stated as well. I had another patient who taught me a phrase, “Don’t borrow trouble.” And I learned it and use it a lot because I think it’s really meaningful in this disease. We treat ovarian cancer. We don’t know what’s going to come. We don’t know what’s going to come in a month, in a day, in a week. Where we are right now is where we want to be. This is where our focus is, and we’ll exert our energy at this stage. Then we’ll revisit this as we progress along the course of your therapy.

That’s a really good one. I’ll remember that too. Dr. Hirst, what advice would you give somebody who’s newly diagnosed with cancer?

 I think reaching out to those around you is important. Certainly finding a physician whom you have a good connection with is important. And worry is normal, but it can get in the way if you’re worrying all the time. I think that technique of, “OK, right now I’m OK, right now I’m safe,” is appropriate. Have time to worry, and then set it aside so you can move on with the other things you need to do. Getting sleep and whatnot is important. But for a lot of folks, not keeping it a secret is helpful.

Practical Advice Following an Ovarian Cancer Diagnosis

Dr. Eskander, we talked about this a little before. Doña said she had a family history of cancer. Her dad had cancer. In women with ovarian cancer, is it common to have a family history? What kind of mutations do you see? What should they be aware of?

 This is really an important topic and very timely. We’ve learned a lot about this over the last 5 to 10 years, a lot more than we had known previously. And the reality is there’s a proportion of ovarian cancer patients who do have a genetic predisposition to developing the disease. And we’re learning more and more about what these alterations are that may predispose patients to having ovarian cancer, or fallopian cancer or primary peritoneal cancer — all of them as onw family.

Based on the information we have now, we think as many as 15% to 20% of patients who have a high-grade serous ovarian cancer can harbor a genetic alteration that predisposes them to developing these cancers. And most commonly it’s the BRCA1 and BRCA2 mutations. There are other mutations that are involved in this family of genes that are necessary for DNA repair, and we’re identifying additional ones like RAD51C that also increase the risk of ovarian cancer or breast cancer. I think with time, we’re going to continue to add to this list. We have 15% to 20% right now where you have a genetic inherited predisposition, and that’s independent from the risk that may arise in alterations that we don’t know about yet. But that may add to that percentage in the future. So it’s not a meaningless number or a small percentage by any means. It’s a true number of patients who have these alterations, and this has a very important impact on diagnosis, treatment in family and education, etc.

When patients see you with ovarian cancer for the first time, do you test everybody? Let’s say Doña had a family history. I think her father had esophagus cancer. We were talking about this before. But let’s say people come and say, “Hey, I have zero family history of cancer.” Do you screen everybody, or do you screen specifically patients like Doña who come and give you a family history of cancer?

 We’ve gone away from using the family history as a guide to testing, and that’s based on literature and data that we’ve learned over the past several years. We test all epithelial ovarian cancer patients. Really all ovarian cancer patients now are recommended to undergo genetic testing. And in addition to that, if the resources are available, genetic counseling to better understand it. Admittedly, physicians aren’t very good at harvesting and acquiring a good comprehensive family history, because it’s very time intensive. There may be things that we think don’t exist that truly exist. And there are data that suggest that up to half, 50%, of the women who have a BRCA alteration in cancer may have no family history that they’re aware of before they were diagnosed with their cancer and identified to have a BRCA mutation. For those reasons, we really encourage and counsel — and it’s common practice now &mdash; to test all our ovarian cancer patients for an underlying genetic predisposition.

Dr. Eskander, which one is more common, BRCA1 or BRCA2?

 BRCA1 mutations are more common than BRCA2 mutations.

So you test them all, and let’s say somebody has a mutation, do you normally refer them to genetic counseling so that they can talk to a specialist for that? Do you offer them that yourself?

 I will talk to the patient, and — if they have family members present with them during the visit &mdash; talk to them about the results, explain what the results mean. But I do always refer to genetic counselors. We’re fortunate enough to have a very good genetic counseling program. And the reason is that to invest the time that the patient and the family deserve to truly understand the implications of these genetic alterations requires, I’d say, at least an hour, an hour and 15 minutes. Really sit down with additional family members, talk about and answer the questions they may have &mdash; that the patient may not have but their sister, or their brother, or their child who accompanies them to the visit may have &mdash; is really important. And having a good genetic counselor who’s able to sit down and review the implications is a great resource.

What reactions do you normally see of some of the family members who go, “I don’t want to know about it.” Tell me about the range that you see.

 It’s a mixed bag. It’s always hard. Sometimes patients actually carry a lot of guilt when they realize that they’re a BRCA mutation carrier because they feel as if they are putting their children at risk or they didn’t know what the impact may be on their siblings. And I try to reassure them and say, no, what you’ve done is essentially maybe given your child an opportunity to be saved by never being diagnosed with a cancer and having a risk-reducing intervention.

 But the reaction is varied. Some patients have not very much of a reaction and say, “OK, we’ll deal with it” and “I’ll have to speak to the genetic counselor.” Some carry a lot of guilt. Others honestly don’t really even understand what any of this means, and it takes a lot of time for them to truly process it and understand what genetics are and what does this mean to have an inherited alteration, and to connect the dots to how that might affect their family members, their children. It’s hard to predict, but it’s a variable reaction.

So much information. Dr. Hirst, what do you think about that about that reaction of saying, “I’m fine right now, and I may be carrying this gene,” both from the patient side and from the family member side?

 I think that has changed a lot recently, especially with more commercially available direct-to-consumer testing. People are getting more familiar with what some of that means, but patients have a really wide range of backgrounds of understanding what genetics are and what do these tests eventually mean. But it can be huge. Whether it’s a younger woman whose mom is there and feels like, oh my gosh, did I give this to my daughter who’s now ill? Is that patient feeling that I’ve put my children at greater risk? There’s a lot of reassurance that we can’t control our genes, and we now have information that can help us hopefully take steps to mitigate whatever risk we now know we have.

I think that’s very important, because it’s really important for patients to understand that it’s not their fault, frankly. It’s just that you inherited these genes, and now you have the information that you can act on. I think just like maybe with Doña, her dad somehow had this thought process saying, “Hey, remember, if you are in your 50s and everything, if you don’t feel well, go to a physician.” I think that worked out in your well-being.

Ovarian Cancer: Genetic Testing and Familial Risk

Can you share a little of your experience, Doña, with this familial risk and genetic testing?

 I am a BRCA1 carrier. And I didn’t have a sense of guilt. I felt like a light bulb went on, because as I look back in my father’s family, there was cancer everywhere. For me, I really saw it as, “Oh, OK, now the family needs to know, because there’s something we can do.” There are maybe genetic components to lots of cancers. We just happen to know about this one. And there are therapies that can be targeted toward it, so I felt fortunate in that way. But I did want to bring up one thing. You were talking about the hereditary test that people take. It’s interesting, I did one of those, and I tested negative for the BRCA1 in that test, but I’m not negative.

 It’s superimportant and very practical nowadays because these direct-to-consumer tests are available. But what people don’t realize is that they may test for one specific mutation.

 You got it, the most common mutations in these cohorts of patients and not test for others. So you may be negative for that, but that doesn’t mean there’s no alternate mutation that exists. I’ve had patients walk in and say, “No, no, I know I’m not BRCA mutated. Look, I did this commercial test, and it says I’m not.” And then you have to go through the process of explaining why that’s not a definitive test and what else we need to consider.

Right, Dr. Eskander. That’s a very important point. Can you expand on that a little? Maybe can you expand a little on the BRCA1 gene? It’s a long gene. There are different mutations that can happen. Some are variants of unknown significance. Not every BRCA, BRCA1 mutation is pathogenic.

Can you expand on that a little, so people watching this can understand?

 Sure, certainly. As you mentioned, a gene is a large piece of information, and abnormalities and mutations can occur in several places in a gene. It may not impact the function of the gene with a specific mutation or alteration. When you do genetic testing, they test the gene to look for mutations, and if it’s a reputable company, they’re testing the gene and essentially looking in the areas where they see most frequent aberrations or alterations covering a large portion, if not the entirety, of the gene depending on where it’s being done.

Variants of undetermined significance, or VUSs are not reflective of a pathogenic alteration. And it’s also really important because I’ve had patients come in and say, “I was told to have an operation to get a double mastectomy or to get my ovaries removed.” But there’s no pathogenic alteration in the BRCA. It’s a variant of undetermined significance, meaning we don’t have enough information to guide intervention based on that. In the future we may, but right now we wouldn’t. When you do have genetic testing, this is where either the physician, if they’re doing it on their own, has to be invested in explaining the results and really going over things. Or you have to have a good genetic counselor who partners with you who can do that. Because what you don’t want is a patient who has information that they can’t interpret, that they don’t know how to interpret, or unfortunately they get misinformation somewhere else.

Right. And these are very complicated things. The way I sometimes explain it is, there’s a bus and there’s a driver on the bus and there are passengers. Some of the BRCA could be passengers, but they’re not driving the bus. They’re not driving the cancer, and you may end up taking out the passenger, but the bus is still driving along. And that’s very important for patients to know. Tell me a little, Dr. Eskander, if you are BRCA

 or BRCA2-positive, is your prognosis different from somebody who is BRCA1- or BRCA2-negative? Does it affect their survival, and is it a more aggressive cancer or a less aggressive cancer? Do people tend to live longer or shorter?

 What we know is that patients who are BRCA mutation carriers are more sensitive to platinum agents in general. And the backbone of therapy for ovarian cancer historically was a combination of platinum and paclitaxel. And we also saw that patients who had BRCA mutations, yes, could have a longer disease response and remission.

Most recently, and probably some of the most exciting data that we’ve seen in gynecologic oncology as far back as I can remember, are the data looking at frontline PARP inhibitor therapy in BRCA-mutated patients. That was presented almost a year ago today at ESMO [European Society for Medical Oncology] and then subsequently led to regulatory approval. But the reason it was so exciting is we were able to show that in patients who had a BRCA mutation who was diagnosed and completed initial therapy and then got put on a PARP inhibitor, over 60% of those patients did not have a disease recurrence three years out from their diagnosis, which is a very dramatic improvement over what we see in historical baseline controls and in the control arm of that clinical trial.

We know that BRCA-mutation status is important for the patient and their family. We know now that it’s important and really relevant with treatment, prognosis, and counseling. Because the conversation I have with a BRCA-mutation patient can be very different from one I have with a non-BRCA-mutation carrier based on these data looking at these new drugs and the efficacy of these drugs in this patient population.

The Impact of Genetics on Outlook in Ovarian Cancer

Doña, tell us a little about your treatment journey if you don’t mind sharing that. What kind of treatments did you go through? After you met Dr. Eskander, what were the next steps for your treatment?

 After my debulking surgery, I was told I had no evidence of disease. So it was optimal, and I began chemotherapy with Taxol and carboplatin. And I also went on a clinical trial with a PARP inhibitor that Dr. Eskander felt was a really good match for me, and I did dose-dense therapy. I was scheduled to do 18 chemotherapy treatments — infusions &mdash; and I was able to complete 17 of them.

That’s OK. I think that’s a lot. Dr. Eskander, tell us a little about therapy for ovarian cancer. What are the treatment steps that you take from the beginning for staging the cancer, and then what are the treatment options available for patients out there?

 The first fork in the road is really whether or not you’re able to proceed with primary surgery or if you need to start with what we call neoadjuvant chemotherapy, and that depends on many factors. It depends on how physically fit a patient is, whether they have medical conditions that would preclude a big operation. And that’s predominantly based on clinical exam and imaging. If you feel like you can successfully remove all the tumor, which is the goal of a primary surgery, to remove all the visible disease, then you can proceed with a primary operation again in the context of a medically fit patient.

If, for whatever reason, the disease is unresectable — if there’s widely metastatic disease in the lung or if there are multiple lesions in the liver &mdash; then for those patients, you would get a biopsy to confirm their disease and also help you figure out the germline and somatic BRCA status now, which is still relevant. And then you would offer them primary neoadjuvant chemotherapy, and that could be done on a clinical trial if one is available at the institution where the patient is being treated or with, again, standard carboplatin-paclitaxel. And some people incorporate a drug called bevacizumab or Avastin in that setting. And if you operate first, then once surgery is done you talk about treatment. Again, those treatment options are clinical trial or carboplatin-paclitaxel with or without bevacizumab therapy, and then also the PARP inhibitor option for appropriate patients who have a BRCA1 or BRCA2 alteration.

So it’s tailored toward every patient with what you do. There could be different options. There could be some targeted therapies like you’re talking about. There could be chemotherapy to get them through their surgery with a combination of the above. Dr. Hirst, for patients going through chemotherapy, what kind of emotional and psychological changes do they go through, and how can patients deal with that?

 What we find is for a lot of patients there’s still the fear and the worry leading up to meeting with their physician. Getting a plan, things start to calm down, and then there’s again another peak of anxiety before you have surgery, before you start chemotherapy. Then once things start to happen, for many folks there’s a sense of, OK, now we’re on the road, now we’re doing something about it. The cancer was still growing or still attacking me, but now we’re doing something about it, and often a sense of relief can come.

For folks who have a lot of side effects to chemotherapy or have a more complicated post-operative course, physical symptoms can crop up. And when we’re not feeling well physically, that tends to also impact our emotional strength and our emotional tolerance. We find that treating those — whether it’s nausea, pain, constipation, the basics &mdash; if we can keep our physical self feeling well, we have a little more strength emotionally to deal with the ups and downs that we’re facing.

Doña, can you share with us some ups and downs that you faced? How did you deal with them while you were undergoing chemotherapy or therapy in general?

 Well, one of the things I did, I wanted to maintain as much as I could a sense of normalcy. And part of that was, I was told I would be able to keep my hair. And so I did a cold-cap treatment.

 I was, but it was nice. For me, my hair is part of my identity, and I really respect women in whatever journey they decide to go on, but for me it was really nice to go out on a Friday night. My husband I always go to the movies on the weekend, and to just feel like myself, I could kind of put cancer in a box. That was a nice thing: to find out that you don’t have to lose your hair. I probably lost about 20%. That’s what my hairdresser said. So that was a perk.

But a challenge was probably some complications that I had. I had two intestinal obstructions due to scar tissue that required hospital and surgery during the time I was having chemotherapy. And that resulted in dose delays. Also because of the toxicity, I had dose reductions, and so those weighed on me because I felt that if we’re going to do this, let’s do it — just give me the stuff, and let’s really go to battle. That weighed on me because I worried that my body wasn’t fighting hard enough, and they were having to treat me more and more carefully.

That’s fairly common. When we test these drugs, they’re just tested in a small number of patients, and then we give them to hundreds and thousands of patients. And there has to be truly per-patient dose adjustment and that’s where expertise of people like Dr. Eskander, who can see what you can tolerate and dial the chemotherapy with your body’s reaction, comes in.

Undergoing Treatment for Ovarian Cancer

Do you see any movie on Fridays, or do you wait for specific movies, any movie?

 We are just movie fans. The only movies we don’t see are violent movies, both my husband and me, so we’re on the same page. But we love documentaries.

 I like adventure films a little more than he does, and comedies. We just have always done this, since we started dating, we’ve been married for 36 years.

 I wish I had saved those old ticket stubs. Tom would do that when we were dating. I have a jar.

To try to keep normalcy, Dr. Hirst, what do you think about that? Do you think that’s a good thing, to try to keep as normal of a life as possible?

 Yes. I think for a lot of folks it feels like so much has been taken away, whether or not you have to stop work, or you can’t pick up the kids from school for a little bit, or you’re unable to do your usual household tasks. It feels like a lot of losses, so where you can, maintaining normalcy helps and maintains a sense of strength and generativity through all this.

Doña, what about nutrition and everything, did you change the way you eat, your patterns? Did you just keep a healthy diet, so you can go through the chemotherapy trying to keep a calorie count up and keep your nutrition up?

 I did not experience nausea to any degree. I never threw up throughout treatment. They have a lot of things they can give you now to navigate that. But I did battle constipation. That was probably my demon, and as a result I didn’t want to eat anything because I thought anything going in is not coming out. Food was just not attractive to me, so I had worked on trying to just keep my nutrition up during it, which I made up for after chemotherapy. I made a list of all the things I was going to eat.

Did you eat them when you went through the list?

That’s all right. That’s perfect. Dr. Eskander, how do you talk to patients about their quality of life while going through chemotherapy, how to maintain their quality of life? What are some of your thoughts on that?

 It’s a very important aspect of care. It’s daunting enough to go through surgery and then chemotherapy. But if patients begin to run into a lot of chemotherapy-related adverse events that they weren’t expecting or weren’t educated about, they can develop fear, some apprehension. They worry about the effect it has on the cancer and cancer growth and not being able to tolerate the therapy. So I think a really important part of it is to educate, to inform them, and to help manage symptoms. And, again, this is a multidisciplinary process, and it speaks to the importance of having a great team around you, having good nutritionists and dietitians, having infusion center nurses who can call you and say, “Hey, Doña is not doing so well with her infusion. She looks dehydrated. She’s telling us she has a lot of nausea.” Because many times in our office, visits some of those things are lost in translation.

It’s like a trailer. It’s not like a whole movie, right?

 Correct, it’s a trailer. Or the patient doesn’t feel compelled to share it with you because they’re worried if they share it with you, it may affect their treatment.

 It’s a multifaceted approach, but controlling symptoms to preserve quality of life and making sure that patients can continue therapy without significant side effects is really important. The cold cap is something that some patients elect to use, and it’s an example of a way to make them feel that they’re not going to lose their hair with therapy and give them a little bit more power. And as Jeremy mentioned earlier, there is that feeling of control over some things when you feel as if you have no control over many things at that point in time.

Dr. Hirst, a couple of things. For patients who are going through this, what would you recommend for them, just in general. Are there ideas with your practice that you would recommend for them while they’re getting chemotherapy, to maintain their quality of life?

 Yes. I think as Dr. Eskander says that some folks do worry that if they share some of their issues, it will delay therapy or it will mean the doses aren’t as strong as they would otherwise be, and so maybe they don’t want to share that. But knowing that, well, we actually have things that can treat constipation really well or can treat nausea really well. And if we treat the physical symptoms and the emotional symptoms, you’re better able to tolerate the chemotherapy, or the surgery, or whatever the treatment may be. So trying to be as open and honest and getting help from your entire care team is important.

So open dialogue and honest dialogue with their care team is exceedingly important in getting through the therapy.

Adjusting to Life During Treatment of Ovarian Cancer

Let me go on to a different aspect. Dr. Eskander, I’m going to talk to you about it. With Doña, we talked before and she’s doing wonderful. She’s out of her diagnosis. She’s doing great. But some patients have recurrent disease. That means the disease does come back. What are the unique challenges in the diagnosis and treatment of recurrent disease? That means disease that comes back for patients with ovarian cancer.

 It’s tough. It’s tough for many reasons, because patients now have access to go read what recurrent ovarian cancer means, and they read about it on the Internet. And many times, what they read is that once it comes back, you can’t get it to go away permanently again. It is a difficult conversation for some patients. Again, I think the key and the priority has to be education, and creating a realistic set of expectations for the patient, and having open communication.

When patients are diagnosed with recurrent ovarian cancer, I like to tell them, “Listen, this is another starting point for us. This doesn’t mean that we don’t have options. It doesn’t mean that there isn’t anything that we can do to help put you back into remission and manage this disease.” We’re going to start with the information that we have, and thankfully, as Doña alluded to earlier, we are in a time where the amount of information that we have at our fingertips, the opportunities we have for treatment for molecular profiling of tumors, and the understanding of what targets may exist, is well beyond what existed five, seven years ago. There are a myriad of opportunities that are available for us to treat patients and offer them therapeutic interventions that will hopefully put their cancer back into remission. Again, I like to tell them we’ll take it one step at a time. This is recurrence No. 1.

 Let’s deal with this recurrence. Let’s see where this path takes us, and then we will decide what we need to do next if anything. But the hope is to get the patient back into remission and hopefully a durable and long remission at that.

Normally, I tell my patients that we’ll cross the bridge when we come to it. Right now, we are here, and then for the next step we will do that. But normally is it chemotherapy or targeted therapy? Is it lifelong, or do you give it for some time and then stop? I know every patient is different, but what are the general outlines of therapy?

 In general, with recurrent disease, there are again a few opportunities. No. 1 is — and I bring this up because I’m a big advocate of understanding the ways we can treat our patients better &mdash; if there is a clinical trial that a patient may be eligible for and is interested in, that’s an opportunity. In terms of current standards of care, it’s combination-based platinum chemotherapy for a platinum-sensitive recurrence. That decision is made by determining how long the cancer stayed away after completion of frontline chemotherapy. If they have a platinum-sensitive recurrence, it’s a platinum-based combination regimen. Again, you can use Avastin, or bevacizumab, in conjunction with that and as a maintenance.

More recently, with our understanding of the BRCA implications in all patients, there’s an opportunity in platinum-sensitive patients to go on PARP inhibitor maintenance therapy. And that maintenance is essentially duration of disease remission, response, or unacceptable toxicity. If the patient has a really, really amazing response, and they’re on it for a long period of time, we potentially may visit a conversation about what to do at that point. But we do have maintenance therapy options that didn’t exist previously for these patients. The platinum-resistant patient population is a different conversation altogether, but again it highlights the importance of tailoring the treatment to where a patient is in their disease.

The right patients. When patients hear about this, let’s say the second time around, what are their reactions? Is it similar to the first time around? Is it different, now that they’ve been through once and they understand what they’re going through, if they have to get chemotherapy again? What kind of reactions do you see with patients?

 It’s common for them to be discouraged for the reasons that we just talked about. But I try to reassure them and say again that we have effective options for treatment. And they are familiar with chemotherapy, they’re familiar with infusions and infusion visits and symptom management. That familiarity makes it, to a certain degree, easier on them. But it can still be difficult to navigate the disease-recurrence setting and help them cope with knowing that it’s back and talking about management going forward.

Reacting to a Diagnosis of Recurrent Ovarian Cancer

Dr. Hirst, Dr. Eskander is obviously a very accomplished physician. He really talks to his patients, communicates with them. But what would you talk about regarding general health care out there? In a way, what could physicians do better in dealing with patients with recurrent disease? What could we be doing to help patients navigate this all over again?

I think a place to start is even before recurrence. I think for a lot of patients with any type of cancer, and with ovarian cancer, the idea that this might come back is there. Clearly there are some folks who are able to say, “OK, if it comes back, we’ll deal with it.” But for a lot of patients, there’s this tickle in their brain, and for a significant percentage we start to see sort of a hyperalert state of any type of physical symptom. “Oh, I have a twinge,” or, “Oh, I feel a little off today,” or, “Oh, is that feeling I have normal?” They can drive themselves crazy with anxiety that they’re feeling of, “Oh, is this meaning it’s recurred?”

Starting there, how do you manage the new experience you had that your body is all done with cancer? How do you not let worry about recurrence totally overtake your life? And then if recurrence does occur, patients may think, “Oh, gosh, did I not take the chemotherapy as strong as I should have? Did that delay make this happen?” Try to get away from beating oneself up or thinking they did something wrong and that’s why it’s back. In a sense, instead of thinking, “Oh, this is just what my disease is doing, and I’ve got my team here and we’re going to meet it head on and look at where we are today,” think, “OK, this is the genetics, this is the disease, and these are some treatment options.” Again, support the patient so they feel well enough to get those therapies.

Tell me, I would say there are different nuances and psychological care about having had cancer before, and now you’re in remission, versus living with cancer. And if it recurred, then you are undergoing treatments and everything. Can you discuss the differences in those two aspects? In remission, now it’s a chronic thing that we’re dealing with. You’re seeing the oncologist a lot more; just a lot more visits and everything, being monitored for toxicities a lot more. What can you say, as far as the difference between those two things?

Right, it can be exhausting. And I think it can take over one’s life if you let it. Well, yes, the cancer is always there, but is there a way to put it aside? I really like the sense of, I put it in a box for right now. Or I see patients use that technique frequently. OK, I go to infusion, I go see the doctor, I’m dealing with cancer, but right now I have my grandkids, or I have my kids, or I’m going to do my hobby. I’m going to try to put the cancer aside, try to dose up on my antiemetic or whatever it may be, so I can enjoy this moment without constant reminder of the cancer. That is important, because it is a marathon.

Right, you’re exactly right. And one of the other things is health care resources obviously. Physicians are seeing more and more patients. One is talking about treatment therapy, but one is addressing the psychological aspect of things, and that can be another discussion. Just as Dr. Eskander was saying, for genetic discussions, everything can be an hour, hour and a half. So what do you think medical professionals, as a profession, can do better with patients in addressing these very important issues? Should mental health folks like you be incorporated in the discussion as part of the care team? What are your thoughts on that?

I may be biased with it. At our center we are very lucky in that we have a very robust psychiatric and psychological service component, and we have phenomenal social workers on all our teams. And it’s a really robust emotional support network that some patients need but others don’t. We do find that general counseling and talking about distress of disease is very therapeutic for a lot of patients. Certainly, in your community, finding a mental health professional with expertise in cancer is important. We don’t want to find someone who doesn’t have any experience, who thinks all people with cancer are going to die, or who will approach it not in the right way.

Right, right. Or just blow it off or whatever. But someone with experience who knows some of the ups and downs and how to deal with the uncertainty is important. Just being able to talk about it and share that is important. There are more specific therapies: cognitive behavioral therapy, meeting center therapy, dignity therapy. More very specific psychotherapies for patients with serious illness have been developed, and finding practitioners to build in those would also be very helpful for those patients who need it.

Cognitive therapies. Can you expand a little on that? What kind of cognitive therapies? How do you do that?

The basic behavior of cognitive behavioral therapy is that our thoughts and our behaviors are tightly wound. If we can change one, we can start changing the others. Identifying some of our negative thoughts, recognizing them as such, and then countering them with more positive actions, more framing — that’s the basic explanation of cognitive behavioral therapy. And it’s been applied to all things from general anxiety disorders to general mood disorders, and in the cancer world it can be very helpful in terms of recalibrating our thoughts around disease and our bodies.

Dr. Eskander, do you think there should be coordination between patients, oncologists, and mental health professionals, just like Dr. Hirst? I know in your center it’s there, but do you think it should grow? Should we have more of these resources available to our patients?

 Undoubtedly. Just as you said, we’re fortunate enough to be able to work together and to have the resources available to us in our cancer center. I think it’s a tremendous resource for many of our patients because the reality is you can’t, no provider can, do it alone. They can claim that they are, but I don’t think they’re doing the service that the patient deserves necessarily alone. If you’re able to collaborate and develop these programmatic initiatives to really provide all the resources, including the mental health and supportive care, it’s really invaluable for the patients throughout the process.

Doña, what do you think about that? By kind of incorporating these into care of patients?

 I think it’s a great idea. You’re treating the mind and the bodies together.

Recurrent Disease: Learning to Live With Cancer

Dr. Eskander, there’s been a new approach, almost a revolution, in ovarian cancer but they use a maintenance therapy. You talked about that in the previous segment where patients have gone to chemotherapy and they can be put on something called maintenance therapy. So tell us a little more about that.

 It’s certainly an important aspect of treatment now. It’s emerged in the last couple of years with approval of these PARP inhibitors. There are 3 FDA-approved PARP inhibitors — rucaparib, olaparib, and niraparib &mdash; for use in this setting. I anticipate in the future we may see more approvals. But basically, historically patients with recurrent ovarian cancer, whether it was platinum sensitive or not, would get chemotherapy, and then when they completed traditionally 6 cycles of chemotherapy, they would stop treatment and then initiate surveillance.

 The duration of time in which the cancer has gone away from completion of prior platinum therapy.

 If they completed their prior platinum therapy and at least 6 months elapsed between completion and recurrence, that’s defined as platinum-sensitive disease recurrence. If a patient progresses on their prior platinum therapy or recurs in less than 6 months, that’s a platinum-resistant or refractory patient population. In patients who have platinum-sensitive disease recurrence, the historical paradigm was to finish your chemotherapy and then do surveillance with clinical exams in CA125 [cancer antigen 125] and some people order imaging.

Now clinical trials have shown very reproducible efficacy using these PARP inhibitors as a maintenance treatment. What we mean by that is essentially when you’re done with your chemotherapy, at that point in time you don’t stop all treatment but you transition to this PARP inhibitor, like rucaparib or olaparib or niraparib. You initiate that maintenance, and you stay on that PARP inhibitor as a maintenance treatment as long as you’re responding and you don’t have toxicity that would mandate that you come off treatment.

That really was driven by several large clinical trials that showed in patients who got the placebo as a maintenance, the duration and time in which that cancer stayed away was approximately 5 months before it recurred versus in the patient population that got placed on the PARP inhibitor. This is dependent a little on whether you had a 

 mutation in the tumor, inherited or not, but that was essentially 3-fold better. You’re talking about 15-, 20-month progression-free survival improvements.

Let me break it down a little. There may be some repetition here, so I’m sorry for that. But let’s say you have 

2-negative disease. When would you use maintenance therapy in that setting?

 Right now you can’t use a PARP inhibitor as maintenance in the frontline if you’re not 

2 mutated. But you can if you have a platinum-sensitive recurrence. The maintenance therapy in the platinum-sensitive recurrent setting is irrespective of 

Let’s say you had cancer, you had it resected, chemotherapy then resected or chemotherapy after that, and then it came back and you have platinum-sensitive disease. That is more than 6 months of being disease-free after the end of platinum therapy. Correct?

Then technically they can get one of the maintenance therapies with 1 of the PARP inhibitors.

Tell me about BRCA1 and BRCA2, the ones who have BRCA1 and BRCA2 mutations, just like Doña here.

 They would fall into the same basket, but the difference is that when I talk to a patient like Doña who has a BRCA mutation, the magnitude of benefit, based on the data that we have, appears to be a little more pronounced. But I want to highlight something, and this is the really important aspect, that when we look at these patients who are platinum-sensitive recurrent patients who are not BRCA1 or BRCA

 mutation carriers, there’s a whole family of genes independent of the BRCA genes that are involved in DNA repair that may have an alteration called homologous recombination deficiency, and that also may predict a robust response to these PARP inhibitors.

And aside from that, there may be other genes that we don’t know yet that may suggest response to therapy. Because there are patients, whom we would call biomarker negative, who still have a really robust and durable response to these maintenance PARP inhibitors. It’s a really exciting option to offer patients when historically we didn’t have anything in this setting. And more important, we know based on these studies that if we don’t offer a maintenance treatment that the average interval of time in which the disease stays away is about five months.

That’s great. Dr. Hirst, if he can delay the next recurrence, what is the impact on mental health of patients — psychological health &mdash; if you can delay the recurrence coming back, delay the addition of chemotherapy again?

I think certainly hearing that we now have these options can provide some sort of relief. Sometimes relief, sometimes control. Now we’re done with this intensive process of going into the infusion center and getting these chemotherapies. Now that we’ve got this maintenance therapy that’s going to keep fighting, we can provide a sense of control and relief.

The time period leading up to the next check-in with your physician or the next blood test or the next imaging study, for a lot of folks it is a time of increasing stress and worry. You can’t sleep for several days after you have the test and you’re waiting for the results. Then you get hopefully good results and you have this period of relaxation where you can say, “OK, things are OK again right now,” and then it builds up again. There’s this undulating experience of stress that we now have with this sort of maintenance idea.

Doña, do you go through the same process? It’s called scan anxiety. Tell us a little about your experience as to what you go through.

 I get tested periodically for my CA125. And while I’m waiting for that result, yes, there’s anxiety because my life could change. It’s dependent on a number. And they’re always really good to get it to me as soon as they can, so it’s been good so far.

Dr. Eskander, let’s say the CA125 has gone up or a scan shows recurrent disease. What is your conversation with the patients?

 It’s a conversation that is essentially really tailored around their particular circumstance, based on all the things that we’ve discussed. How long have they been off chemotherapy, what is the elevation in their CA125? If they haven’t had imaging, is now the right time to do an imaging study to evaluate what their clinical exam is? Because all these things are going to inform what our options are for subsequent steps of treatment.

And one of the things that I think is also important to emphasize is, with adoption of maintenance therapy, by pushing that interval of time in which the cancer stays away before it recurs, that also gives our patients additional options down the line. Instead of having a disease that’s recurred in five months that’s platinum resistant potentially and less likely to respond to re-exposure to platinum, or where that patient may not be eligible for a platinum-sensitive clinical trial, by going on a maintenance therapy you can push out that disease-free interval. They’re now beyond that six months again. It gives you more therapeutic options and really puts you in a spot where options are key, because that’s what we want to do. As you mentioned earlier, it’s our dream to either cure patients or turn ovarian cancer into a chronic condition. If we’re able to do that successfully, then we’ve accomplished a lot.

Ovarian Cancer: What is the Benefit of Maintenance Therapy?

Tell me a little about the maintenance therapy versus just taking a clean break. First, before this, just tell me a little about the side effects of these PARP inhibitors, because I’m guessing they have their own side effects.

 They do. With PARP inhibitors as a class, I like to compartmentalize side effects so I can remember them well. But essentially fatigue is a big one. But I like to reassure my patients that although it’s almost universal, we will get you through it. And the reality is, if you look at all the clinical trials that were done, less than about 10% of patients need to come off therapy altogether because of side effects. The vast majority can be managed with effective counseling, education, symptom management, and medications if needed.

The other one is GI [gastrointestinal adverse] effects: nausea, abdominal pain, constipation, diarrhea—it can run the gamut. And hematologic abnormalities: anemia; thrombocytopenia for some PARP inhibitors; lymphopenia for some PARP inhibitors. We want to assess all those parameters.

There are some very rare side effects that sometimes come across that patients may read about like myelodysplastic syndrome, AML [acute myeloid leukemia], or pneumonitis. They’re very, very rare—less than about 1% or 2% of patients&mdash;but certainly important to bring up. So education and discussion are important. Even though I talk to all my patients about it, some patients may elect not to do the maintenance therapy. But again, it’s about counseling, education, and making sure they understand what the benefits are of this approach.

I think when they don’t want the maintenance therapies, it’s just that they want to take a break. Like just take some time off. I know you’re a good doctor, but they do not see you all the time; take a little bit of a break. Is that what the common discussion is?

 Absolutely. Most commonly patients will say, “I just want time to not do anything. I know these are oral medications and that I won’t have to come to the infusion center, but I don’t want to have to think about the tablets, I don’t want to think about lab work, I don’t want to worry about coming in to visit you,” usually. But in all honesty, it’s a minority of patients.

Jeremy, how do you deal with the psychological aspects of continuing something chronic? Sometimes with IV [intravenous], patients come in every three weeks, two weeks, get the IV, and go. Then you’re right: they can put in a box. But you’re taking a pill every day, right? So it’s harder to put that in a box.

It is a constant reminder that there’s this thing that could potentially come back and get you. Again, I think focusing on how this is a tool we have to help maintain control of it is refreshing versus just being done with chemotherapy and waiting and feeling more helpless about it. They think, “Oh, I’ve got this pill.” It has this efficacy that can do something. As long as it’s not killing me, and it’s not causing all these side effects that are not intolerable, it can be good. But I’d be interested, Doña, in hearing what your experience has been.

 I was kind of caught in no man’s land, because I had finished my therapy and the SOLO-1 results came out for indicating maintenance in the front line for BRCA patients, but we had to discuss whether I would go on it or not go on it. My first reaction was, I want that pill, because I don’t want this to come back.

 And that was a long discussion. Ultimately we decided to not take the pill. So I’m not on anything right now. But that was a tough decision.

I think that’s where discussing with your physician and your care team is very, very important, so you can understand the risk versus the benefit versus what you can do. So I think you did exactly the right thing, you reached out to your physician. You’re a well-informed patient, you reached out to your physician, talked to them about risk benefits up and down, and then made the decision together.

 I think just an important point is that on the clinical trial that Doña was on, there was a maintenance arm to that trial that was either placebo or drug. It made the picture a little clearer. It was a unique situation, not necessarily someone who had no treatment at all but had completed their therapy.

Yes. That’s why I think every patient is different. Every patient doesn’t read the book. That’s what medicine is in unique situations.

When to Consider Maintenance Therapy for Ovarian Cancer

Doña, when you were diagnosed, I know you got a lot of help with your diagnosis, people said a lot of helpful things, your support group was great. Did you face any stigma when you were diagnosed with it? Anything that was not really helpful but that people talked to you about?

 I heard a lot about integrative medicine. I’m not sure of the total definition, but in terms of diet and what you should and shouldn’t eat. And to me, for me personally, that was like crazy land. You know, the mushrooms or the this or the that. Then I thought, “I can’t handle all that.” So I chose to focus on the science and stuff that had gone through rigorous training or rigorous examination by scientists.

I put that aside. But I think with people trying to help, sometimes you’re just sensitive. For me, I was much more private about what was going on with me. I just wanted to put my head down, get through the treatments. As I said, I like keeping my hair. I really didn’t want to have my cancer seen first and then me seen second. And so what that did is it really, really delineated people whom I felt close to. I drew them closer and maybe put up more barriers to other people just for preservation, because it made me feel comfortable.

I don’t think I hurt a lot. One comment I remember somebody said, we went out to dinner with someone I didn’t know well, and when we were leaving, she said to me, “You look really good right now.”

 And that’s what I said, “Right now?”

I don’t know if that was a compliment or…

 And she said, “Well, we hope you always look that good.” And so I remember thinking, “No, I’m not going to see her so much anymore.”

And you can make your choices. Dr. Hirst, what do you think as far as patients getting diagnosed with cancer? What is helpful, unhelpful? There are a lot of opinions coming in from everywhere. What do you tell the patients about what you can do? I think Doña did really good things. She pulled the people who were close to her closer. Maybe she decided to share what she wanted to share with selective sharing. But what do you see with patients and how can they deal with that?

For some folks who have more external evidence of disease or have chosen to be more open about it, people can all of a sudden start changing how they react to you. I hear a lot of people saying, “People say really weird things to me. They’re always coming up with advice that I wasn’t asking for or looking at me cross-eyed if I am eating too much sugar. ‘Don’t you know that’s feeding the cancer?’ ” Or whatever it may be, which can be very negative. People can try to treat you more delicately or exclude you from things because they think, oh, you won’t be able to handle it. Trying to decide where, as a patient, you feel more comfortable and getting those people around you to support you is important.

And being your own advocate. “Oh, this is how I’m actually doing. You don’t need to treat me as if I’m a fragile ceramic doll.” Or maybe today I am feeling like fragile doll and I need a break, or whatever. But being more outspoken and being one’s own advocate is important.

Doña, so how was it with you? Did somebody say, “Oh, we’ll do the dishes for you every day.”

Or you’re like “Hey, I’ve got cancer. I can’t do the dishes.”

Sorry, can’t do the dishes and all the chores and everything. How is it in your household? Tell us a little about that.

 I had so much support and love around me. My family, I was fortunate, lived close by. And my mom pitched in. I didn’t have to worry about the house. My daughter organized the meal train for me, so throughout chemotherapy there was food coming into the house. Even though if I wasn’t eating it, the household was taken care of.

Was she asking for stuff she liked or you liked?

 I felt a lot of love and support around me such that even now, I’m recognizing all the kindnesses that were given to me.

Dr. Eskander, what about you? When the patients come to you, do you talk to them about this, about the emotional, psychological support that they would need? Family, friends—how did they deal with it?

 I think it’s important to have support. It’s very difficult to go through this process alone. I think that’s part of our responsibility: to make sure patients don’t do that, so we can use the resources we have if they are alone. Family is priceless and friends are priceless, and now they can support a patient and give them the resources to help get them through the process. Patients will frequently ask, “Is it OK for my family member to come in the room? Is it OK for them to be on the phone?” I say, “Absolutely.” I love when the family is involved, because then I know that there are resources available to the patient. Of course, sometimes it doesn’t work that way, and families can complicate the picture. But for the most part, having family or a support system in place is really beneficial.

I do agree there’s a lot of information out there. A lot of is not necessarily accurate information. Sometimes patients come in overwhelmed: “Can I eat this? Can I not eat that? If I drink this, is it going to make my cancer come back? I spent all this money on this particular supplement.” And it’s hard to know how to truly reassure those patients and at the same time tell them that we don’t really have much data at all about any of these things.

But it can be very stressful. We’re in an era where information is everywhere, but really being able to distill the accurate information is difficult for all of us. I try to help them navigate that as best I can, but obviously even my understanding about some of these supplements is very limited.

Yes, I hear a new one every day. “This is from Bhutan, this came from the Amazon, jungle fruit.” That’s strange, but one of the things patients sometimes don’t recognize is that supplements while you’re undergoing therapy can actually cause some harm, because they can interact with some of the medicine. Can you tell us a little more about that?

 Oh, it’s absolutely true, and it can be overwhelming because they can be on five or six, seven different things, and I don’t know what the interaction was, what they’re taking with the drugs that we’re giving. Many of the oral agents that we give, including PARP inhibitors, can have interactions based on metabolism. I try to have them bring it into the office if they can, so I can learn a little about what the implications may be. I use our pharmacists, who are very useful, and say, “Can you please review some of these supplements to make sure that there are no interactions?” If I don’t think there are good data, I encourage them to try to avoid the supplements while they’re on treatment if they’re willing to do so, until we get them through therapy, and then we can revisit.

Compartmentalizing Stigma and Support in Ovarian Cancer

Obviously out here in your institution, you have people like you, Dr. Eskander, who can help patients along in their journey. But the majority of the oncology practice is not done in academic centers. It’s done in more community settings. But the resources may not be that robust. What do patients do in that setting?

It can be challenging. I think for oncologists to know and for patients to know that symptoms of anxiety, depression, insomnia, symptoms of PTSD [post-traumatic stress disorder], or even full criteria for PTSD are unfortunately somewhat common among patients with ovarian cancer and gynecologic cancers in general. So asking and screening questions are important to pick up on the patients who may need a little extra help. And if they find a patient for whom they say, “Oh, this person may have an anxiety disorder or depressive illness or PTSD,” to then really look around in the community and see whom they could start grooming referrals to so someone could get more experience for this patient population is important.

And certainly there are online resources as well. I think some folks have done a good job of trying to connect with a patient group online to get some support there and to hear maybe who has had success with them and where it hasn’t been so great. But that can be dangerous too because online groups can go quite negative, or there can be one person who overtakes the information.

But I think communicating with your oncologist about what’s really going on, having faith that if you do express some symptoms of anxiety or depression, that’s not going to mean you’re not going to get more therapy. It just means that maybe there are additional things we can do to help support your through it is important.

As oncologists in the community, you were talking about a simple screening. What is that? What simple questions can they ask their patients to try to figure out if they need more help?

Well, I think simply taking the time to sit down and ask, “How are you doing?” can allow the space for discussion; not immediately saying, “You’re looking good,” and moving on to the testing but really sitting and being like, “How are you? How has this been for you?” Normalizing reactions can be very helpful. Even before giving the patient the reflex, to say, “Oh, I’m fine,” mention that a lot of the folks I see struggle with x, y, and z.

One thing I often will teach learners at our institution is that sleep is a safe symptom to ask about. It’s normal for people to not sleep well, right? And that is a way in. So ask, “How have you been sleeping? Are you finding it sort of hard to turn off your busy mind at night?” And once you get someone agreeing that, “Yes, sometimes my worries are hard to shut down,” you can ask, “Huh, how about during the day? How is anxiety during the day?” Or mood-wise, “Are you finding it harder to maintain interest in the things that you used to really enjoy? Even if you can’t necessarily be out there doing all these things, do you still have interest or really not anymore?” Start off something with easy like sleep and then move toward things that might be harder for patients to admit to that they’re still having trouble with.

Then reassure them that it’s not going to change one’s relationship. Even if a patient admits that “Sometimes I am so stressed that I wish I could just fall asleep and not wake up again,” but that doesn’t necessarily mean like, “Oh my God, you’re suicidal and we’ll need to hospitalize you.” It just means, “Oh my gosh, you might be very overwhelmed, and this is hard.” Normalizing some of these reactions can be very helpful for oncologists.

Amazing. Tell me a little about how, with some patients, you’re talking and it’s good, but quite a few oncology patients also do require an antidepressant. Some antianxiety medicine just to tide them over a little. What are the data on that, how many patients acquire that, and what does help them in a way during their course?

Well, what we find is that, first, just talking about some of these experiences can itself be very therapeutic, and often pharmacology isn’t needed. When someone is having trouble sleeping, treating their sleep first often helps other things get better. So start with the easier symptoms to treat. And then if there are symptoms of anxiety or depression, thinking about antidepressants needs to be very careful. Because a lot of the antidepressants do have a lot of drug-drug interactions. So working with our pharmacists, working with our oncologists, and making sure adding an antidepressant isn’t going to derail their other therapies is critical.

Using pharmacotherapy is a common tool. Luckily antidepressants are generally very well tolerated. Starting low and titrating to a therapeutic dose in effect is often safe and easy to do. They do have side effects that we need to watch out for, including some things that may be more serious for our patients going through chemotherapies, especially with thrombocytopenia, impact on platelet function for the SSRIs [selective serotonin reuptake inhibitors]. There are things we need to worry about; it’s not a complete contraindication. And they can, if someone is feeling better, be better able to maintain and work with the disease-directed therapy.

Thank you. Doña, tell me this, how did you address your own emotional health and mental health while you were undergoing therapy, and even now?

 I like to hear my body, and my philosophy is, like with supplements, not to take anything I don’t really know what it’s doing, because I did think it could interact with the chemotherapy. I haven’t had to use pain medications or other medicines because I like to check in. It might be a little more painful sometimes, but I’m trying to just go through experiences and let them work and process them.

I’ve been really fortunate in my journey for cancer. I know that if it came right back, I think that would have been a whole different journey for me. So I feel I’ve been able to navigate it so far. I don’t know. In the future it may change, and I’m glad I have options. But how I handle it, the further out I get the more I’m just thinking that I’ve had that and now I don’t have it.

The Psychosocial Impact of Ovarian Cancer | Cure Connnections