What Is Cancer Survivorship?

Jamie DePolo: Hello. As always, thanks for listening. Our guest today is Evelyn Robles-Rodriguez, an oncology advanced practice nurse at the MD Anderson Cancer Center at Cooper in Camden, New Jersey, where she serves as director of Outreach, Prevention, and Survivorship.

She joins us today to talk about survivorship including why the term can be controversial as well as offering some tips on how you can get the best survivorship care for your unique situation. Evelyn, welcome to the podcast.

Evelyn Robles-Rodriguez: Thank you so much for having me, Jamie. It’s really a pleasure to be here. 

Jamie DePolo: Great. So, I want to start by asking you to define survivorship. Because I know the National Coalition for Cancer Survivorship says survivorship starts the second someone is diagnosed with cancer and then continues throughout the rest of their life. But a lot of people, I think, they think survivorship starts when they’re done with their main treatments. So, how do you talk about it with the people that you serve?

Evelyn Robles-Rodriguez: Yeah. I think that’s a great question, because most patients are thinking about survivorship in what we call the living beyond cancer or the permanent stage of survivorship, which is when they’ve completed their treatment, they’re in that long-term phase and they’re basically just kind of watching and waiting and ensuring that there’s no new cancer come back. But there are two other stages to survivorship. You have your acute stage, or you’re living with cancer, which is that first diagnosis when you’re getting your treatments. When you’re really working hard on getting rid of or controlling your cancer. 

And then you have that extended stage, which is that middle stage, when you’re living through cancer, and that’s just when you finish all of your active treatment and you are really at the highest risk of recurrence. So, usually in those first two stages you’re getting closer follow-up with your physicians and that medical team. You don’t consider yourself, sometimes, a survivor because you’re waiting for that final phase when you’re in that long-term care and you’re kind of, like, less watchful, less really being careful for that cancer to come back. So, I think that’s where people get bogged down that they don’t realize there are three stages to survivorship

Jamie DePolo: Okay, thank you. Now, I do want to get the controversial bit out of the way right now at the beginning. So, in our community a lot of people consider the word survivorship, survivor, insensitive, upsetting, because people diagnosed with metastatic breast cancer are going to be in treatment for the rest of their lives. So, I’m wondering how we can unpack that. We use the term at Breastcancer.org, because that’s what all the big cancer organizations use when they’re talking about it and we want to be consistent. But we also want to make sure that everybody, regardless of the cancer stage that they’ve been diagnosed with, get those benefits from planning for late and long-term side effects. So, that’s a long question, I realize, but you know how do you talk about that? I’ve got to believe you’ve come across some people who maybe were a little bit offended by that term. 

Evelyn Robles-Rodriguez: Definitely, we have some patients who hate that term. We have some patients who really hate thinking about the ribbons and being constantly accosted by the ribbons. When we think about, for example, our metastatic breast cancer survivors, they are survivors. They’re just unfortunately stuck usually in that acute stage when they’re living with their cancer and they’re going through chronic treatment. So, they may not see themselves as survivors, because they haven’t gone through that phase where they’re just monitoring and not getting treatment. But they are they are survivors. 

I really think that we need to just call our survivors what they want to be called. If you want to be called a warrior, then it’s okay, you’re a warrior. If you want to be called a survivor, it’s okay to be called a survivor. If you want to be called a thriver, that’s okay as well. We really just need to meet our patients where they want to be met. And if having one of those names after themselves makes them feel better, makes them feel that it really resembles more how they feel, then that’s what we need to call them. 

Jamie DePolo: That makes sense. I think of it, too, as ringing the bell when someone’s done with chemo. Because a lot of people like that and a lot of people don’t like that. So, it’s just whatever the person prefers, I’m fine with it. 

Evelyn Robles-Rodriguez: Absolutely. And I think you’re right. I think that, that ringing the bell is such a difficult thing for our metastatic breast cancer patients to see. Because they don’t get to ring that bell. And they’re seeing people going through that joyous celebration and they never get to be a part of that.

Jamie DePolo: Yeah. Yeah. Okay. Now to me, it seems like the biggest part of survivorship is the survivorship care plan. That seems like the centerpiece. So, could you explain to us what those plans are and how they’re created?

Evelyn Robles-Rodriguez: So, the care plans are really an awesome thing for our survivors to have. It’s basically two parts. The first part is a synopsis of your cancer and its treatment. So, you’re going to get information, as an example, of who your care team members were, what type of cancer you had. What stage? When was it diagnosed? You know, what were some of the markers for that cancer? Was it ER/PR-positive? HER2/neu-negative? When did you get your surgery and what type of surgery did you have? What kind of reconstruction, if any? What type of chemo did you get? And when and for how long? And also, if you got radiation or other types of therapy, hormonal therapy, if you got other targeted therapy. All that is that first part of the plan, what we call the looking-back part of the plan. 

Then you have the second part of the plan, which is the looking-forward. And in the looking-forward we’re looking at, okay, based on all of the treatments that you had what are now some of the late effects of treatment you may be dealing with? What are the long-term effects of treatment that you may be dealing with? So, what can you expect? And then, also, what we want to do to keep you healthy. So, what are the screening and prevention things you should be doing? What are the things you should be doing in terms of follow-up care? How often should you be seeing your team? How often should you be seeing your primary care providers? And who is in charge of what aspects of the care? 

So, we want our patients to realize that if you have a cold, you shouldn’t be going to your oncology team. You should be going to your primary care team. But if you have something related to your cancer or concerning your cancer, then that should be your oncology team. So, that plan is really an amazing synopsis of what we want to do to keep you safe, so that everyone is on the same page. And if you have to change providers, if you have to go to an emergency room that’s not where you got your cancer care, you will have a copy of that plan that you can share with those new providers, that you can take with you so that everyone knows, again, what happened to you and what will you want to see continue happen to you, how we want to continue to care for you.

Jamie DePolo: Okay, thank you. Now, I know in theory everyone is supposed to get a written plan, but I’ve also seen research showing that perhaps that isn’t happening. There are some folks that don’t get a written plan. So, if somebody hasn’t, what should they do? 

Evelyn Robles-Rodriguez: So, if you have not gotten a care plan, and I will tell you that not all centers provide them. They’re very tedious, they’re time-consuming and they also should be given to the patient in a visit where you’re reviewing it with them. So, if you have not gotten a plan, one, I would talk to your oncology team and say, “Hey, I have not gotten a survivorship care plan. I would really like one. Can someone put one together for me?”

There are other resources, however, where you can actually go in and put your information about your treatment and your cancer, and it will formulate a plan for you. 

One of the more popular ones is at oncolink.org. You can go right in, you enter your cancer information, and bam you get a plan. Now, the thing about that is you need to know your information. You need to know the names of the chemotherapies you received. You need to know information about your surgery, about your radiation. If you have that information, you can go in and get your own plan if your center does not provide it. But really, the best way to get your plan is to speak with your oncology team.

Jamie DePolo: Okay. That was actually going to be my next question. Because I know some organizations, like the National Cancer Institute, I believe American Cancer Society, they have these downloadable PDFs where, as you said, you can enter in that information. But if you don’t have it all then it becomes a little bit tricky, because, you know it’s not complete and you may not be getting the best recommendations.

Evelyn Robles-Rodriguez: Yeah, definitely. You’re not going to know about the late and long-term side effects of treatments unless you have that information that tells exactly, okay, based on this chemotherapy that you had, these are the side effects that you can expect in the late or long-term effects. So, that part is definitely really important in order for you to get an accurate and really comprehensive care plan. 

Jamie DePolo: Okay. So, even if somebody printed out, say, a template, if they were unsure, perhaps, the best thing to do is still schedule an appointment with the oncology care team and actually go through it and fill it out together. 

Evelyn Robles-Rodriguez: Absolutely. And then keep in mind also that a lot of centers now have your electronic medical records, where you are sometimes able to go in and get more information about your treatment and your care. So, sometimes through the electronic medical record you can request information about the treatments that you had as well.

Jamie DePolo: Oh, that’s a great point. I didn’t even think about that. So, if somebody didn’t know they could potentially look it up that way. 

Evelyn Robles-Rodriguez: Yes, absolutely.

Jamie DePolo: Okay. Okay, great. Now, I know you talked about late and long-term side effects that people may have. So, to start with, could you explain the difference? What do we mean by late side effects and what do we mean by long-term side effects?

Evelyn Robles-Rodriguez: Yeah, that’s another great question. And so, when you think about the long-term effects, those are the ones that begin while you’re getting your treatment, and then they can continue for months or years after your treatment has ended. Whereas your late-term effects, those are the ones that could begin months or years after the treatment has ended. And then they can be subtle, they can be very severe, they can be life-threatening. And sometimes the impact of these late effects can be depending on your age and your developmental stage when you were diagnosed and when you were treated. But that’s the big difference between those two. 

Jamie DePolo: Okay. And to sort of help folks out, could you perhaps talk about some of the most common late and long-term side effects somebody who’s been treated for breast cancer might have? I realize it’s not going to apply to everybody, but you know, say, the top three in each type.

Evelyn Robles-Rodriguez: Okay, sure. So, when you think about the long-term effects, the ones that started during your treatment. Very common ones. You can have sexual concerns where you can have issues with vaginal dryness and painful sex, because of the vaginal dryness, and that can last for a long time sometimes or can improve after the treatment has ended. You can have issues with fatigue that can last a long time. Insomnia that some of our patients deal with for years and years and years after their therapy has ended. Anxiety and depression that can come with the treatment and could stay for a long time as well. 

Those vasomotor symptoms that you deal with when you get thrown into that sudden menopause. So the hot flashes, the mood changes, that can come with the treatment. Infertility, you know, that can last sometimes a lifetime for some of these patients and begin during treatment. So, those are the very common ones that you can be dealing with and the other big one is pain. You know, some people have pain related to their surgery or to their treatment or sometimes to the radiation, but more common with surgery, that can last for ages during and after your treatment.

Jamie DePolo: Okay. And then what about late side effects? I think sometimes people, maybe they don’t think about those right away and then if something shows up maybe a year later, they’re like, “Oh, is that related to my treatment or is this something new? Right, is that a new disease?”

Evelyn Robles-Rodriguez: Yeah, absolutely. And for the late effects they can, again, be very severe or very mild, but it could be something like cardiac effects. So, your heart being affected years later because of the treatment that you received. As an example, if you received radiation to the left side of your chest or you received something like Herceptin, you know, that can have some consequences down the line.

You can also have bone loss. Some of the treatments that we’re giving our patients, such as your aromatase inhibitors, can lead to bone loss and osteoporosis. So, the longer we sometimes have these treatments, the more effect on the bones that you can see. And then the ones that people really worry about are some of the secondary cancers that you can develop because of the therapies that you received. 

Jamie DePolo: Okay, thank you. Now, I want to talk about screening, because that’s a big part of the survivorship care plan. So, I know some of the screenings are going to depend on the specific treatments a person received, but from your viewpoint are there some screening tests that everybody who has been treated for breast cancer should consider having in the years after treatment is completed?

Evelyn Robles-Rodriguez: Yeah, definitely. When I have a cancer survivor in front of me, my big focus is on wellness and staying healthy. So, what do I want them to do? The mammogram, as we know, of course if they still have breasts, their yearly mammogram should definitely be done. And then based on whether there is breast density, you know, you may be doing an ultrasound or an MRI along with the mammogram. Then you have the other cancers that are preventable that you want to make sure you’re screening for. So, are they getting their pap smears, if it’s a female? Are you getting your pap smears and your pelvic exams routinely as recommended? 

If you’re a male breast cancer survivor, are you getting your prostate cancer screening? Because sometimes they can go along. For both men and women, are you getting your colonoscopies and some form of colorectal cancer screening? As we know, colorectal cancer is a preventable cancer. Just the same as the cervical cancer that doing a pap smear can prevent cervical cancer, doing a colonoscopy can prevent colon cancer. So, those are two very important tests that I am always harping on my patients that they need to get. Then you want to look for bone health. So are there DEXA scans? We like to get them every two years on our survivors, because we know that our treatments can affect them whether we threw someone into early menopause, or whether they are taking medications like the aromatase inhibitors that are affecting their bones. So, we want those DEXA scans done. 

And along with that, vitamin D levels. So, we check vitamin D levels on a yearly basis for two reasons. One, because it can have impact on the bone. You need the vitamin D to draw the calcium into the bones. But also because there’s been some studies suggesting that maybe low vitamin D levels can increase risk of recurrence. So, we check vitamin D levels yearly also. If you received therapies that could affect your cholesterol, then we’re also making sure that they’re getting cholesterols, cholesterol testing. They’re basically total cholesterol looking at triglycerides, which can be affected by the treatment, and making sure that, that also looks good. Then we want to make sure that you are getting your vaccinations the way you should be getting. 

We do definitely recommend for our patients to get the COVID vaccinations as per age. We want them to get their flu shots. We want them to get, as they get older, their shingles and their pneumonia shots. Is that getting done? Great.

And then we also focus on wellness. Because when you think about our breast cancer survivors, we know that obesity is something that can increase the risk of recurrence. So, we focus also on saying, “Are you exercising? Are you staying mobile? Are you being healthy?” Not only is that good for your heart, but also good for your breast cancer risk, for your colon cancer risk, and it’s good for overall feeling well, right? And eating healthy. Are you eating a healthy diet? 

If someone had some sort of treatment that can cause effects on the heart, such as Herceptin, that person may be getting echocardiograms or MUGA scans to check on the heart for at least two years after that therapy is completed.

And finally, we want you to continue checkup with your primary care providers. So, we’re recommending to our patients to continue care with their primary care team, with their gynecology team, and any other provider that’s been a part of their healthcare journey before their cancer or may have become a part after their cancer treatment. 

Jamie DePolo: Okay, thank you. I have a question specifically about men who have been diagnosed with breast cancer. Is a mammogram or some type of screening like that recommended for men? And also about the DEXA scan for bone density. Like, say, a man was treated with either tamoxifen or an aromatase inhibitor, would he then be recommended to get DEXA scans?

Evelyn Robles-Rodriguez: Definitely, the DEXA scans for men as well. And we kind of tend to forget about them, but we do know that males can also suffer, based on some of the treatments we’ve given them, from bone loss. So, for those men who are of a certain age, usually over the age of 50 at least, we may be getting DEXA scans. And then mammogram if there is enough breast tissue in the male, we can also be getting yearly mammograms on them as well. 

Jamie DePolo: Okay. Okay, thank you. Now, we’ve talked about a whole lot of information. And I’m thinking that as somebody has completed cancer treatment, I mean, that’s a big ordeal in itself, and now there’s this whole thing to look forward to. And from talking to some people, I think they kind of minimize the survivorship care plan or thinking about survivorship because they just want everything to be done. Like, “I finished my cancer treatment. I don’t want to think about cancer anymore.” And this whole survivorship care plan and thinking about survivorship, it’s kind of a constant reminder, so I understand that. 

So, I have two questions. If somebody’s care facility, where they got their treatment if they don’t have a survivorship clinic, I know a lot of places do now, but some don’t. So, if their place where they got care doesn’t have it, how do they go about getting help? And what can people do, like, if you had to give people, say, three to five tips to make sure they were living their healthiest life after cancer treatment, what would those be? 

Evelyn Robles-Rodriguez: Those are great questions. So, in terms of survivorship clinic, I, again, recommend you speaking to your oncology team and saying, “Hey, you may not have a survivorship clinic, but do you know of someone that does?” So, I run our survivorship program in our institute and I get, sometimes, patients from other hospital systems who do not have a survivorship program. And a lot of the times the institutes themselves refer them to us. So, ask around, look at the National Coalition for Cancer Survivorship, talk to Breastcancer.org. Because a lot of people in those major sites will be able to guide you and help you find a survivorship clinic near you. 

And you know a question is, does it have to be breast cancer specific? I think it’s better if they are specific, because the more specialized you are, the more you know what to look out for. Because we’re not just looking for cancer recurrence. You know, we’re working at evaluating all of the things that brought you to your cancer. As an example, one of the things that I do a lot with my patients is, have you had genetic testing? Is your genetic testing up to date? So, some clinics may not know to do that. That there are new genetic testing available for patients, or there may be new drugs that come out. And the reason why I think survivorship care is so important, continuing to see someone in a specialized survivorship clinic, is because there may be new treatments out that maybe they’re recommending, now years out, that you didn’t know about. 

New research is constantly being developed and if you’re not going to a site who is really keeping themselves up to date with those new treatments or those new recommendations, it could be a recommendation for a screening that’s now out, you may be losing out. So, absolutely, you know those survivorship programs, when they’re long-term survivorship programs you’re only coming once a year. 

Jamie DePolo: Okay.

Evelyn Robles-Rodriguez: So, I do encourage our survivors to find a good program near them, to attend it because it could really give you information that could be life-saving that could be leading you to a healthier, longer life. 

Jamie DePolo: Okay, great. Thank you. And then, now, what about the tips? Like, if somebody, you know if you’re talking to a cancer survivor and somebody says, “Okay, like what are the top three to five things I should do for my long-term health and wellness now that I’ve completed treatment?” What would you recommend? 

Evelyn Robles-Rodriguez: So, my recommendations are living healthy. And not only living healthy physically, but living healthy mentally. So, what I always try to discuss with our cancer survivors are, are you exercising? If you are not exercising, what can you do to start? And what can you do that you will enjoy? Because we know with exercise if you’re doing something and you don’t like it it’s not going to stick, right?

Jamie DePolo: Right.

Evelyn Robles-Rodriguez: So, do you like dancing? Then consider dancing. Do you like just taking a walk? Take a walk with your pet. But becoming as active as possible, I think, is number one, because you want to maintain a healthy weight.

Secondly, diet. So, we want you to eat a plant-based diet. Does that mean you can’t eat meat? No, absolutely not. Everything in moderation is okay to do. So, eating as healthy as possible, focusing on your fruits and your vegetables and your healthy greens is really important. Again, not just for bodily for you to feel well, but also for you to maintain a healthy weight.

We want you to maintain a smoke-free lifestyle. We know that cigarettes impact your life and curtail your life, so staying smoke-free is a great way to lead a longer, healthier life. 

And then alcohol. So, a lot of my patients are asking me, “But Evelyn can’t I have a drink of wine?” Absolutely. We want you to drink wine and enjoy wine or whatever cocktail you enjoy, but not every day, you know. So not every day. So, I really recommend not even a drink a day. There are some studies that have suggested that in cancer survivors even one drink a day can possibly increase your risk of recurrence. So, if you want to enjoy a couple of drinks a week, there’s nothing wrong with that, but try not to do that on a daily basis, I think, is a good piece of advice.

And then thinking about other simple things like staying healthy in the sun. That when you think about skin cancers, one of the most common cancers that can occur, when you’re out in the sun use SPF 30 or more. Try not to be out there for long periods of time. Use protective clothing. Don’t use sun beds or suntan beds. They’re not good for you, they increase your risk of cancer. 

And then finally, Jamie, I think really important for people to take care of their mental health. That you need to find ways to decompress, to destress, and take care of your brain or how you feel. Because that’s just as important as your physical well-being. I always tell my patients and my family members that, you know, we try to think about mental health as this horrible thing that should be avoided, that should be stigmatized. And it’s just like hypertension, it’s just like diabetes. If you have high blood pressure, you need to take your medication. If you have depression that’s impacting you, impacting those around you, you need to take your medication for your depression or your anxiety. Just as important as taking any medicine for any other medical condition that you may have. 

And then I would say, finally, that your sexual health is also very important. We as providers tend to forget about that piece, because we’re so focused on everything else, and that can have such an impact on your quality of life and on your relationship with your partner. So, making sure when you’re with your providers that you address that piece as well. If they don’t bring it up, and talk about the issues that you’re having, because if you don’t talk about it, and they don’t ask, you could be living with something that could be impacting you and making you feel not well when there could be a simple solution for it. 

Jamie DePolo: Oh, excellent. Evelyn, thank you so much. This has been so helpful and I really appreciate all your insights.

Evelyn Robles-Rodriguez: Thank you so much for having me. It really was an awesome time talking with you, Jamie.