Cancer survivorship and its shadow, with Dr Mercedes Castiel

[00:00:02] Every cancer patient, at the end of their course of chemotherapy, gets to ring a bell. The bell is good news. It signifies that you made it to the end of the treatment, which is a feat in itself. But what happens after the bell? You know, you ring that bell and wow, everyone is happy and you are happy. You've just finished a very traumatic time in your life.

[00:00:30] But what happens next is everything comes flooding in and you don't have that support. This is Overlooked and I'm Golda Arthur. What happens after you ring that bell is a transition from patient to survivor. And the challenges of cancer survivorship are not something we're talking about nearly enough. What is most overlooked in survivorship is that the resources to support survivors are not where they need to be.

[00:00:58] Throughout my eight months of treatment for stage three high-grade serous carcinoma, I pondered a lot about what quality of life meant for me. To me, survivorship is knowing how quickly my life can change, but choosing to plan a future anyway. Here's the thing. Right now there are many positive developments in cancer treatments with new innovations in the pipeline. Survival rates are climbing over time, too.

[00:01:27] But there's a shadow here. Survivorship comes with its own weight. One that doesn't get nearly the support or attention that it deserves. There is the financial burden, sexual health difficulties, anxiety over the next scan. Somehow, survivors are always looking over their shoulder. And caregivers, too, who cope with even less support. It's September, the month we get to talk about ovarian and gynecological cancers.

[00:01:57] My mom was diagnosed with this disease, and this is the origin story of Overlooked in the first place. September is the month I always turn back to this show's original question. What does it actually mean to live with cancer and beyond it? This episode is a little different than what we usually do on this show.

[00:02:20] This is a recording of a live event, a conversation I had this past spring at the Canadian Conference on Ovarian Cancer Research, hosted by Ovarian Cancer Canada and taking place at the University of British Columbia under the auspices of the Gynecologic Cancer Initiative. By the way, these guys are doing amazing, world-class work in women's health. At this conference, I sat down with Dr. Mercedes Castiel and with a live audience.

[00:02:49] Dr. Castiel is a gynecologist and the founder of an organization called Cancer Care Concierge. It really is a multidisciplinary team that needs to take care of a patient. What we talked about was cancer survivorship. What happens after you ring that bell? Now, now you just feel finally you can sit down and then a lot of that grief and loss that was kind of pent up inside.

[00:03:16] Now it surfaces and people will say to me, I didn't even cry like this when I was diagnosed. During the taping, I gave the live audience a few prompts to sit with as they listened. And you can hear the response to those prompts at the end of this episode from folks who were in that live audience. You too can use these prompts to tell me your story. If you're a survivor, a caregiver, a patient, or if you love someone who is, check the episode show notes for more details on how to do that.

[00:03:46] My conversation with Dr. Mercedes Castiel is coming up in just a minute. Before we head into this episode, I wanted to tell you about a podcast I think you'll appreciate. It's called the Cancer Caregiver Podcast. If you've ever been in the role of supporting a loved one through cancer or know someone who is, you know how overwhelming it can feel. Charlotte Bayala, the host, has been there herself.

[00:04:11] And she shares not only her story, but practical science-backed tools that actually fit into the middle of a busy caregiving day. It's compassionate, real, and genuinely helpful. You can find it on any podcast app. Just search for the Cancer Caregiver Podcast. And now, back to Overlooked and my conversation with Dr. Mercedes Castiel. Hello, Dr. Castiel. Hello. Hi, everybody. I'm thrilled to be here.

[00:04:41] This lady is an incredibly fascinating person. I'm so pleased to talk to you. We had so much. We've only, I think this is the first time we met in person. But in our conversations, I'm already like, wait, I want to ask about that. I want to ask about that. So you are the founder and CEO of Cancer Care Concierge, which provides comprehensive support to patients through the physical, emotional, and logistical challenges of cancer. And we're going to talk about those challenges.

[00:05:08] And you spent most of your career at Memorial Sloan Kettering Cancer Center in New York, during which time you built one of the earliest women's cancer survivorship programs in the country. Dr. Castiel, welcome to Overlooked. Thank you. Thank you. It's a pleasure to be here. So let's start by defining terms. Okay, we're throwing these words around quality of life, survivorship.

[00:05:32] So I'd love to hear how you define these things from your point of view through your experience and your perspective. Well, that's a great question. And survivorship is actually a very personal definition. It's what you want. It's the quality of life you want. And it also depends on, it depends on your age, your relationship status, your work, anything that changes or can impact your life.

[00:06:00] So to me, first, and most of us in survivorship don't see it as what happens after cancer treatment. Survivorship begins on the day of diagnosis. Because you need to anticipate with the better treatments and longer survival after a cancer treatment now, we need to anticipate what the needs of our patients are going to be.

[00:06:24] And if you wait until after the treatment is done, you may miss opportunities to maximize that quality of life and the patient's hopes and dreams for their future. So survivorship starting on the day of diagnosis really depends on the patient. So let's say it's an 18 year old who has Hodgkin's lymphoma and is going to be menopausal because of her treatment.

[00:06:50] What are the survivorship issues that we need to deal with with her as opposed to a 70 year old that has Hodgkin's lymphoma or a breast cancer and needs survivorship help, if you will. So the 18 year old may be thinking, you know, I want to go out on dates. I'm going to be menopausal. Is sex going to hurt? They may not be thinking of that at that moment, but we need to anticipate that those are issues that may surface later.

[00:07:16] So survivorship to me really is dictated, if you will, or informed by my conversations with my patients. They need to tell me what this cancer diagnosis, the cancer treatment, the side effects of treatment, how it is going to impact their life and how I can help maximize or minimize the side effects and maximize their health and their quality of life. So it's not really it's not a set definition.

[00:07:43] And so this is a moment actually where I'll give you a prompt to think about and you can think about this and send a voice memo in if you want to. What does survivorship mean to you? What does quality of life mean to you? And define that as clearly and as specifically as you can, because presumably it's helpful when you're able to say to your physician, this is how I interpret this. And this is what's important in my in my daily living.

[00:08:13] Yeah. You know, cancer is is a big word and it and it really hits you like a ton of bricks, I'm sure. And I can't say personally, but I've had family members and and it's it really changes your outlook on life. It changes how you see your future, how you see your family, what your work situation is. How am I going to handle everything? There are a lot of emotions. There's the physical side effects.

[00:08:42] There is the emotional and financial toxicity that really is another part that gets overlooked a lot. And and the financial toxicity is real. People go bankrupt, at least in the U.S., because they have to pay all these exorbitant bills. And and we underestimate. I mean, there are people who say I will not take the treatment because I can't afford it. Financial toxicity is big and we need to address that early on.

[00:09:10] And there's the surgeon, there's the medical oncologist, the radiation oncologist. There should be a social worker. To handle the the financial toxicity, you get these bills and you have no idea what they're saying. And it's like it should not be so overwhelming, at least in certain sections of your treatment. And that's one of them. And the psychologists should be involved.

[00:09:33] The oncologist can't deal with everything, but there are people that as part of the team should be able to really take care of the patient as a whole and not individual with the individual parts to make that whole. Yeah. And so that really points to the fact that your whole life is affected by cancer. Absolutely. And within a 10 mile radius of you. Are there any caregivers in the room today? Hi, I see you guys. I see you guys as a as a caregiver.

[00:10:02] And that's another area that we don't talk about caregivers at all in general. We don't talk about that. And that gets overlooked. It is. Absolutely. You know, as a parent, let's say it. I mean, you may have one child that's sick, but you have other kids. Maybe you have a partner. Maybe you have a job. You may have aging parents. You may be the sandwich generation. So you're trying to take care of both. And it gets very, very complicated. Yeah.

[00:10:30] And you may have to keep a job. And, you know, how many times are you going to say somebody has a doctor's appointment, you know, and I have to go or there's an emergency. You're in the middle of your work day and you have to leave. So caregivers, it is a big, big strain.

[00:10:46] And actually, one of the reasons I started this is I was finding I mean, I started it because over my whole career and as I'm sure in any profession, you end up getting curbside consults. Right. Somebody calls you and says, my cousin's uncle's dog walkers, sister's friend has this. Can you help?

[00:11:09] And, you know, and I would obviously get them into the right person quickly, you know, make all the phone calls I needed or maybe to me if that was the case. And so, you know, and I realized that not everyone has that. So that was one of the reasons that cancer care concierge really started. I realized that my my mother, my brother, who both had leukemias, they had me and I would advocate.

[00:11:38] I would be on the phone calling my colleagues and it was easy because they knew me and I could just say, hey, I need to get this done. I remember with my mom, we live in the suburbs, but she was being treated where I was at Sloan Kettering. And periodically she needed lab work done. I would draw the blood in the morning, put it on ice and take it to the lab. I didn't have to drag her to the hospital just to find out whether she needed a transfusion. If she did, we'd bring her in.

[00:12:06] But, you know, what if I couldn't do that? If I weren't who I am and a doctor with the connections, et cetera. I mean, the lab had to allow me to do that. Right. Because you're like, you know, chain of custody, if you will. You know, whose blood are you really bringing? So and I was raising six kids at the same time. So and my husband is a surgeon. So how do you navigate all that when you don't have those connections?

[00:12:34] And so that was part of the reason. And then the other part is that I would see caregivers come and they would be jotting down notes. You know, now you can probably record and but they would jot down notes. How do you spell that? And what does that mean again?

[00:12:51] And the caregiver has that responsibility to, you know, document everything and take care of the person, the loved one and drive them and give up, take time off work as well, which is not easy. And so doing this, I become the family member in the room that happens to be a doctor.

[00:13:14] And the true family member, if you will, can just focus on handholding or or, you know, paying for the parking or bringing the car around, you know, and not having to worry about documenting things accurately, learning the new vocabulary, which they do learn, obviously. And then what I do is I also I join those appointments. So I recap the notes in layman's terms. But caregivers are really the unsung heroes.

[00:13:43] And and they also need some help in other ways, because they can't really say, I'm so worried about you, you know, and I what if I lose you? That's not what you really want to be saying to somebody who who is ill. And so you need you need an outlet, too. And so as much support as caregivers can give. I know there are groups that, you know, therapy groups and you can get individual counseling.

[00:14:13] But we really underestimate how much of a toll it takes. Yeah. Going from the individual and kind of the family level to something. I'm going to I'm going to pull us back a little bit here. And I want to read this and make sure I get this this right. I saw some data recently that just really had me pause for a second. OK, the American Cancer Society has a report called Cancer Statistics. And in 2026, they found that the five year I'm going to say this slowly.

[00:14:42] OK, the five year survival rate for all cancers combined reached 70 percent for people diagnosed in the U.S. between 2015 and 2021. I know there's a lot of numbers there. OK, 70 percent survival rate. In the broadest terms, cancer survival is increasing. I know we're talking about ovarian cancer today, but in the broadest terms, cancer survival is increasing. Hooray. Yeah. Hooray.

[00:15:12] Now what? Well, that's right. Yes. Yeah. And that's amazing, right? Treatments are evolving so rapidly. Every week there's something else that's approved and found to be effective for X number of cancers. Part of that is because rather than treating the organ itself, there are tumor markers that are inherent in the tumor, not that you're necessarily born with, that are being targeted.

[00:15:36] So the same drug can target that marker in different organs, for example, and, you know, without getting too scientific. So it is amazing that survivorship is or survival is is increasing at a fairly rapid rate. That makes it even more important to address it because if you think about it, patients are going to live longer as cancer survivors than as cancer patients.

[00:16:01] And so what happens after you finish your chemo, you finish your radiation, you finish your surgery, you're in, maybe you're taking extra adjuvant therapy, you know, an immunotherapy or tamoxifen, whatever it is. But the apron strings to your oncology team might have been cut a little bit, not gone. But now you're not seeing them every two weeks for lab tests or every three months for scans. You're seeing them every six months, let's say, or every year.

[00:16:31] What happens in that window? Now you just feel finally you can sit down. And then a lot of that grief, grief and loss that was kind of pent up inside, now it surfaces. And people will say to me, I didn't even cry like this when I was diagnosed. And it's because you're in the fight or flight. So finally you get home and you have PTSD. Right. And it is it is a PTSD.

[00:17:00] And so we forget that, you know, you ring that bell and you're wow, everyone is happy and you are happy. You've just finished a very traumatic time in your life. But what happens next is everything comes flooding in and and you don't have that. You don't necessarily have that support of having your doctor tell you you're doing great every two weeks or three months or whatever. You're seeing them during the treatment period. You know, the labs look great.

[00:17:27] And then obviously there is the worry in the back of your mind. I'm not seeing my doctor for three months. Like what if something is lurking and I don't know it? And then I have a headache. It's a brain tumor. My big toe hurts. It never hurt before when I stubbed it. Not to this degree. It must have gone to my toe. So it's one of the most significant periods in a patient's life. And that comes after treatment. Right.

[00:17:53] And so this is I'm going to use what Dr. Castile said just now and turn it into another prompt for you guys. I'm going to ask you a very personal question. All of you. How many of you can relate to this idea of feeling a sense of grief in this period? Can I see a show of hands? Yeah. Yeah. Yeah.

[00:18:15] And that grief is, as you say, mixed in with anxiety and mixed in with a sense of loss and not just anxiety, full on fear. Right. Because at three in the morning, all you have is Google. All day, every day. Yeah. You carry it around with you like a coat you don't really want to wear. I can certainly say that I'm probably experiencing it right now.

[00:18:41] But so I want to use this as a prompt for you to like think about a moment where you understood that it was grief. And this is the contradictory. This is this is the tension here. Right. Hooray. You have lived past the moment of diagnosis. You have lived past the treatment. You've made it through all of that tough chemo stuff. And here you are. And you're not celebrating or you are kind of celebrating.

[00:19:09] But actually, there's this underbelly of something, something there, something concrete that's pulling you down a little bit. So if you feel like using that as a prompt, it's going to get emotional. But that's what we do on Overlooked anyway. So I would use that as a prompt. And I think I'm really glad you brought this stuff up because I don't think we talk about this either. So I want to talk about the survivorship program that you started at MSK.

[00:19:38] Tell me a little bit about how that was set up, what it did, how it was run, that kind of thing. All right. So it was kind of my mistake. I started at Sloan Kettering four years out of residency. And it was I was doing OB, general gynecology. I was on call every other night, every third night. I had four kids in five years, less than five years. My husband was a junior attending as well.

[00:20:04] And I was like, we couldn't even afford to pay people enough to take care of everybody. And and then I was offered this position. At Sloan Kettering, which is, of course, a great place. But I had to give up OB, which is why I wanted to go into into GYN in the first place. And no more major surgery, which I never loved surgery. Sorry, Lisa. I loved OB. And but it was touted as wouldn't it be great?

[00:20:34] You have young a young family and it's four days a week, no nights, no weekends. You know, I'm not sure it would have been kosher to say that to a woman now. But but it was so and it was Sloan Kettering. So it's not a bad thing. So I started and my first patient happened to be on tamoxifen. Now, as a generalist and only a few years out of residency, you know, OK, 10 minutes. OK. Most of what I did was OB.

[00:21:04] And I remember my first patient. I think it took me two hours to see her because I was so anxious. Oh, my God, she's on tamoxifen. And and then I asked her a very simple question as a gynecologist. Are you sexually active? And she started crying and she said, you know, I tried to bring it up. And they said, look, I saved you from your cancer. What else do you want? And it hit me. Wow.

[00:21:30] You know, this was just I don't care that you've had breast cancer or ovarian or whatever. You're still a woman and I'm treating you as a woman first. And I want to know if you're sexually active. And she looked at me like I had two heads. And so I remember going home and saying to my husband, I'm doing life after cancer. I didn't even call it survivorship. I should have thought of the word, but I was doing life after cancer.

[00:21:54] And my then boss retired about eight months later. And the chief made me head of general gynecology. I was like 34. And I was like, I should have been daunted. But it was like, OK, why not? How are you? And and then I started. And it's funny because I asked him, can I do a CME course? And I had it. I had the whole program listed, et cetera. And what's CME?

[00:22:24] Oh, continuing medical education. And he said, sure. And the real reason I did it is because I needed all the experts to come and teach me because I didn't know all of this stuff. So I had people for genetics and breast and and ovarian cancer and, you know, everyone that could teach me. And then we actually ran the course for seven, eight years, which was really great. But I also said, if we're going to do this, I want to create a team.

[00:22:53] And I brought on somebody like I was doing all of it. I was doing sexuality after cancer. There wasn't much to do, but I was doing the best I could. There weren't a lot of options like there are now. Now, menopause. So I brought somebody on who did a fellowship in genetics and would see a lot of the high risk patients because they carry gene mutations. If I had a patient that I identified with a gene mutation, I kept them. We all did everything. But I wanted everyone to have their academic niche as well. So I brought that person on.

[00:23:22] I brought somebody on to do sexuality after cancer, along with a licensed sex therapist so that it could be the mind and body. I did the menopause and premenopause and fertility preservation. So these were our niches. I brought somebody that happened to be interested in colposcopy, the abnormal pap smear. So it, you know, and presumably cervical cancer if it got to that point in the diagnosis. And it was a really, really great team.

[00:23:51] And that's how it started. Well, that's fascinating. And I love that it's like a 360 degree way of looking at it, which is what we are. It really is. It's being the quarterback. Thank you to Dr. Mercedes Castiel for that conversation. Now listen to the responses to those prompts. Three women who sent in voice memos to Overlooked on what quality of life and cancer survivorship means to them.

[00:24:18] Here's Jackie Chermanuk, Jenny Graham and Leslie Fletcher. To me, survivorship is knowing how quickly my life can change, but choosing to plan a future anyway. It's scary to make plans or dream of something months or years from now. Yet I have the courage to plan for a life I don't want to lose. To me, survivorship means another chance to live with intention. Seeing every day as an opportunity to work on my quality of life,

[00:24:47] where I am learning how to live in the moment and be present in the moment. What is most overlooked in survivorship is that the resources to support survivors are not where they need to be. Navigating this particular time in a cancer journey is left up to the person to get through on their own. Getting to survivorship looks different for everyone, yet what is common is that cancer is never far from our thoughts. These are traumatic experiences.

[00:25:15] Ones that can push people through to a better place, to a new version of self, if you know where to find resources, are able to access the resources, and if you are able to do the work. For me and probably many others, these challenges impact the meaning of survivorship and how we define quality of life. What does quality of life mean to me?

[00:25:39] Throughout my eight months of treatment for stage 3 high-grade serous carcinoma, I pondered a lot about what quality of life meant for me. Despite the sorrows of cancer, I had experiences of love and care from unexpected places. Connections like connections with old friends, heartfelt conversations with women who understand what it is like to have ovarian cancer,

[00:26:08] and random, poignant sharing with strangers. Quality of life for me now is stepping into life as fully as possible. I am currently NED and feeling well. That means trying new activities, perhaps traveling to places near and far, without hesitation anymore.

[00:26:33] Sitting with people I know and don't know to share stories, being open to learning from each other. There is still so much to learn. Call Day of Life for me is also honoring my feelings and expressing them through my art and my writing. All feelings matter. It means showing my love and appreciation to others as much as I possibly can.

[00:26:59] And it also means reveling, if possible, each day in the awe-inspiring beauty of nature that I'm lucky to say surrounds me. I am fortunate indeed to have these experiences. Cancer is a curious gift. Overlooked is here for information and empowerment, but not medical advice. Every person's body is unique.

[00:27:28] So if you have questions, it is best to speak to your doctor or healthcare provider. We're building a community around women's health so that no one is overlooked. If you'd like to be part of it, hit the follow button on this podcast, wherever you're listening to this. Or you can show us some love by writing us a review and sharing this episode with someone. Overlooked is written and created by me, Golda Arthur. Jessica Martinez-Dios is the show's producer.

[00:27:57] You can stay up to date with the show by signing up for the newsletter and following us on Instagram and LinkedIn. We read every review and email. So write to us, hello at overlookedpod.com. Thanks for listening.