Transcription:
What it Means to be a Cancer Survivor

Host: We are joined today by Dr. Annabelle Veerapaneni. Dr. Veerapaneni is an oncologist hematologist at the Riverside Cancer institute. Welcome, doctor.

Dr. Annabelle Veerapaneni: Thank you so much for having me.

Host: And today, we're going to talk about survivorship. In the world of oncology, tell us a little bit about what that word means?

Dr. Annabelle Veerapaneni: So the word survivor applies to anybody who has been diagnosed with cancer. And a lot of times we can use the term co-survivor for individuals who are family members of those patients. A survivor is someone who's been diagnosed with cancer, and that term can be applied throughout the time of their treatment and well beyond. And we recognize that there are unique issues that cancer survivors deal with. And so that's the reason why it's a topic that's very near and dear to my heart.

Host: Oh. And that exact thing, some unique circumstances psychologically, then the impact of being a survivor, I'm sure weighs on people and people differently as your experience with patients. Talk a little bit about what you've seen with that and the psychological impact that diagnosis has and as people work through treatment and our survivors, you know, how that plays on them.

Dr. Annabelle Veerapaneni: Sure. It's really interesting to see. They did a study in 2016, that was published in the Journal of Public Health from Oxford. And they looked at women's perceptions of cancer diagnoses compared to heart disease. And what's interesting is that heart disease is actually a top issue with regards to death for women in the United States and actually in North America. But their perceptions are that they have more control over it. And when it comes to something like a breast cancer diagnosis, there's more of an emotional toll that's being taken, a psychological toll that's being taken as well.

The majority of women that we treat in survivorship when they go through adjuvant treatment with curative intent have to go through surgery. Some of them have to go through chemotherapy. A lot of them go through radiation and a lot of them have to take endocrine therapy and each of these modalities of treatment can have different side-effects on them. And so they have to live with a sequela of their treatment and really not feel like themselves, even though they look like themselves. And so people will treat them differently. They've overcome their cancer, and while they have begun to live a life without disease, they're still feeling the side effects of it. They're still feeling fatigued. They're still feeling that chemo brain, that brain fog that they can have, whether or not they took the chemo. They might actually just have it from being on endocrine therapy. So, understanding also how a cancer diagnosis and the treatment course can disrupt a person's way of life, especially whenever they're still working and taking care of a young family, or maybe they haven't even started their family yet, and we have to help them make those decisions about fertility. These are all very unique situations that can take an emotional and psychological toll on an individual whether they're a man or a woman. And certainly, they are more unique in some ways. But yet at the same time, when we look at the gravity of the situation for something as commonplace as heart disease, you don't really see that kind of emotional distress or psychological toll that a diagnosis like that can have. So it's just interesting to see.

Host: And so really, it sounds like very much a roller coaster as they come through one treatment onto another. You know, that the highs and lows of that I'm sure are kind of what you're describing. So it isn't a quick journey and it's one that can last an indefinite period of time really. And their own image of self, as you kind of indicated, changes through that and at the end of it probably has a pretty significant change for them.

Dr. Annabelle Veerapaneni: Oh, absolutely. I think some people actually resent the word survivor because they don't want to carry that diagnosis of the cancer with them. Others will say, "I'm a patient who had cancer" and they don't want to accept that term. Others will fully embrace it and say, "I am a survivor. I'm willing to face forward. And I'd like to do things that would help empower myself and other people," whether it's, you know, taking part in an activity for the community or trying to just stay on top of things.

But regardless of whether or not they accept the term, it certainly is something that they live with for the rest of their lives. And I believe a lot of it has to do with that fear of recurrent disease, because it's one of those things you don't have control over. And so I'm still trying to figure out as a physician how to help patients balance that whole idea that when you're diagnosed with early stage disease and we're treating you with curative intent, how do you balance that anxiety of and fear of recurrent disease with the knowledge that there's no evidence of disease and we want to help you move forward with your life, because we understand that you are dealing with some side effects of the treatment that we've given you. So it's very delicate and it's something that I work through with each and every one of my patients.

And another unique population are the people who live with their metastatic disease, the METAvivors. And so we treat them with another special set of perspectives, I guess you could say, because they're learning how to live with their disease burden. They're learning how to live with ongoing therapies and we're passing them in the grocery store and we're running into them at the gym and whenever they take their kids to soccer games and we have no idea what they're dealing with, but they're dealing with that for sure.

Host: Let's talk a little about Riverside's Survivorship Program. Riverside has a program. How does it work? How do patients get connected to it? And what benefits do you see that it has for patients?

Dr. Annabelle Veerapaneni: So the Riverside Cancer Institute Survivorship Program is something that we refer our patients to after they've completed adjuvant therapy. And so these individuals are diagnosed with early stage disease and are being treated with curative intent. And the clinic has been formalized and spearheaded by our nurse practitioner, Kim Shelanskey. So she will see patients at completion of their -- let's say for example, a breast cancer patient has completed surgery, chemotherapy, radiation, and is now starting endocrine therapy. That individual would meet with Kim and she would give a nice summary about that individual's disease course from the time of diagnosis all the way through, give the specific details about dosages of chemotherapy, radiation, and what type of endocrine therapy they're on. And we co-manage patients with primary care because studies have shown that when we do that from a team approach, patients, their outcomes are so much better compared to if only oncology follows them or primary care only follows them after that.

So Kim will give a summary to the patient and then we'll continue followup in the clinic as time goes on and patients have the option of being discharged completely from the oncology clinic after five years and being followed by primary care. Or if they want to follow up with us at an annual basis, that's totally fine too.

Host: Then at what point do they get connected to that program?

Dr. Annabelle Veerapaneni: So at the completion of their-- let's say for example, an individual with breast cancer, right about at the very end of the radiation treatment, as they transition over to endocrine therapy if they're indicated. We have a routine followup visit just to tie up some loose signs. And then we make that referral to the survivorship clinic at that point. And the visit's a one-time visit, but we continue to address each of those survivorship issues with those individuals during routine followup visits in the oncology clinic.

And then we have a Living Anew Program that's usually hosted twice a year. In the spring and the fall is what we aim for. And there is an educational component to it where individuals attend classes for several weeks, once a week. There's a different speaker usually for each topic. In the years past, I've been invited to talk about fear of recurrence, some of the different issues that patients have to deal with emotionally and psychologically.

And then there's also been a very nice physical activity component to it as well, because we want patients to focus on optimizing their overall health, increasing their physical activity and helping them get back to a more active lifestyle after they've gone through surgery. That particular survivorship program is for female patients, but it encompasses all disease sites. So it's not just for breast cancer.

Host: Many of the things you've talked about, it sounds like will include family or other support for the patient that get involved as well. I'm guessing the Survivorship Program has that aspect to it as well. It's not something the patient's going through individually, but their family is with them. Is that often true?

Dr. Annabelle Veerapaneni: Oh, absolutely. It's not uncommon for the initial consultation to be attended, before the pandemic, by at least one family member, if not two. And we understand that a person's cancer diagnosis impacts everyone within their particular universe. So spouses are affected. Children are affected. Close friends are affected. And helping them understand the specifics of what patients are affected by can really help them along that journey. And then beyond, because they're able to help them understand that their stamina might not be as strong as it was before. And that's okay. They're still recovering from different aspects of their cancer treatment. So all those extended members that are co-survivors with that individual are crucial and critical components of a patient's recovery process.

Host: There's a lot of community support as well. Various walks and different events that happen in the community in support of cancer patients. And those are really increased over the last several years. Those have to be a help when we're talking survivorship as well, I would guess.

Dr. Annabelle Veerapaneni: The walks are very helpful. I've had patients tell me that they feel like they're able to give back in a sort of way whenever they participate in fundraising activities. They feel empowered because they are able to raise awareness. So I think different community events like that help people also feel connected because they see others who are struggling with the same issues that they're dealing with and that they're not alone in the process. So I think every single one of those events is incredibly important.

Host: Talk a little bit about if you would the amount of information that people have available to them now via the web. It's probably a double-edged sword in some cases. They can do their own research, but with that maybe comes uncertainty about what they're researching, the information they're getting. As a physician, particularly an oncologist, how do you balance that when folks come into the room with you and say, "I found this on the web. Here's what, you know, I want to do."

Dr. Annabelle Veerapaneni: That's a great question. The way I look at it is when an individual comes in and they've looked at different resources on the internet, my impression of that individual is that they're engaged in their healthcare. They want to be involved. And most of the time, they find resources that are fairly reliable. So when they bring something up and they have questions, I find that very encouraging because it means they're motivated to take the best care of themselves.

A lot of times I want to always encourage patients to evaluate and vet out the reliability of the source. And the majority of the time, I will direct them to the three websites that I give every patient, which are the guidelines for the National Comprehensive Cancer Network, the American Cancer Society and the National Cancer Institute.

So the majority of the time, pretty much any question that you have can be found on any one of those three websites. And all through the websites pretty much say the same thing, but because it's displayed in a slightly different format, it might raise questions that a patient didn't even realize he or she had. And then also seeing it in different formats might make the information stick a little bit more.

But there have been some times where some of the fairly unconventional suggestions have been brought to my attention by patients. And I understand it's all very well-meaning so we have a nice discussion about it. And I just explained to them the rationale for following usual practices, best practices, and what would be considered optimal care for them while also trying to be respectful of the idea that they're acting in their own best interest and just trying to find out more information.

So it's a give and take in terms of trying to understand where a person's coming from when they come armed with a lot of information. Because the majority of the time, I find that the conversation goes very well when you understand where the other person's coming from.

Host: I'm talking to Dr. Annabelle Veerapaneni of the Riverside Cancer institute about survivorship. And as we wrap up, doctor, just the term is a positive one. It talks about surviving. And when people first get a cancer diagnosis, much fear goes around that. But in your experience with survivorship and the power of even just that term, what impact can that have on people? And what hope does that bring them?

Dr. Annabelle Veerapaneni: So survivorship, I think is a very powerful term because I think one thing I always tell my patients is that no matter what happens, that they're always fighting for the best outcome for themselves. And in some ways I understand why people use the battle call and the war cry and things like that against a diagnosis like cancer. But we just have to understand that the word survivor in and of itself is a very empowering thing. And I think that continuing to celebrate that and continuing to focus on these issues after a person's been diagnosed, after they complete their treatment is very important for a person's mental and psychological as well as their physical wellbeing, because we have to understand that the treatments we give can impact people for the rest of their lives and we have to be very in tune with that. We have to make sure that when we treat with curative intent, we're also optimizing their outcomes for the rest of their lives and that we're not causing additional medical problems for these people. So I'm very encouraged by the idea that we're able to talk about survivorship now.

The Institute of Medicine's report came out in the mid-2000s, even as I was doing my training in Washington DC, and I never heard one word about it during my training, which I found fascinating. So I think now that it's more common to address these issues because they're incredibly valid concerns amongst patients, it's something that we really have to, you know, keep our finger on the pulse of.

Host: Great. Dr. Annabelle Veerapaneni, thank you for your time and thank you for the work you do.

Dr. Annabelle Veerapaneni: Thank you so much for having me. It's a pleasure.