Beyond the 5-year myth: How survivorship care helps cancer patients live well

Transcript:

Diane Mapes

Hi there. This is Diane Mapes with Fred Hutch News and From Bench to Bedside and Beyond, our podcast. You can receive Fred Hutch News by signing up. Just go to FredHutch.org, scroll all the way to the bottom of the screen and on the far right you’ll see a button that says Subscribe to Fred Hutch News. Click it! Please! 

So today, as part of our series on Survivorship, I’m talking to Dr. Vidhya Nair who is the medical director of Adult Cancer Survivorship here at Fred Hutch. Now Fred Hutch has probably been tracking cancer survivors longer than many, many other cancer centers in the U.S. because we are the birthplace of bone marrow transplant. Fred Hutch clinicians and researchers pioneered that, and they realized early on that it’s imperative to follow patients that are undergoing cancer treatments, especially innovative new cancer treatments which it was at the time, to help them navigate the side effects and the late effects, and to study and research ways to alleviate those effects, if possible. 

They created the long-term follow-up clinic for bone marrow transplant patients. And that is still going strong. They’re currently following about 6,000 patients, some of whom had bone marrow transplants 40 years ago. 

Fred Hutch treats many solid tumor patients, as well ― patients with breast cancer, colorectal cancer, prostate, lung, liver cancer. And these patients are all living longer thanks to innovative cancer treatments. But that does not mean you bounce right back after cancer treatment and come completely back to normal. Some of these treatments can have really harsh side effects that you’re grappling with at the time of treatment, like chemo brain, neuropathy, lymphedema, as well as things that you might have to deal with after your treatment and for a few years after. 

And then there’s even later side effects that can come up maybe 10, 15 years later ― cardiotoxicity from chemotherapy or from radiation on the left side. Treatments do a lot of good. They save our lives, but they come with some aftereffects, and you have to watch for those aftereffects. And you can treat many of those aftereffects. 

And you also need to watch for cancer recurrence or even a second cancer that could be driven by treatment. So this is where Survivorship comes in. And this is where Dr. Vidhya Nair comes in. Welcome to the podcast, Dr. Vidhya Nair.

Dr. Vidhya Nair

Thank you for having me, Diane. 

Diane Mapes

Thanks so much for joining us. Now can you just talk a little bit as the medical director about why we need Survivorship as a program? 

Dr. Vidhya Nair

Of course. Yeah. So as you highlighted so eloquently, because of the advances we’ve had and our current cancer treatments, we have a growing number of patients who are cancer survivors and who are living either with a diagnosis of cancer or after they’ve had a cancer diagnosis and have completed treatment. Currently, there’s over 18 million cancer survivors in the U.S., which is just projected to continue to grow over the next several decades. 

And so, as an institution, we need to be able to care for all of our patients who not only are going through active treatment, but then also who have completed active treatment, and help them know how to be better equipped to manage their health once they’re through that period of time. And so that’s what Survivorship is, really. The ultimate goal of survivorship is to help care for those patients. 

Diane Mapes

That’s great.  

Now in episode 1 of this podcast, I talked about Survivorship with Bonnie Rochman, my colleague at Fred Hutch News, and I was talking about how early stagers aren’t really surviving cancer as much as surviving treatment. 

But I was talking about my experience and I was thinking, there may be some early stagers who actually do have to recover from cancer itself, not just the fatigue or the lymphedema or the joint pain, you know, the things that you get from treatment. I wanted to break it down a little bit more. Are our bodies also recovering from just housing cancer for a while?

Dr. Vidhya Nair

Yes. Just by having a cancer diagnosis, there are multiple different effects that it can have on the body. One of the things you mentioned is what many of us have termed chemo brain, but it’s not just from chemo. It can be from other types of therapies, too. You know, the fatigue that comes from radiation, that can come from hormonal therapy, all those kinds of things. 

And then also, you know, the psychosocial impacts that having a cancer diagnosis can have, can also have other effects on health, including affecting sleep, which we know has other, long-term complications. 

So just by having a cancer diagnosis, it can impact several different aspects of health and life. 

Diane Mapes

Definitely. As a 15-year survivor of lobular breast cancer ― and after going through most of the basic treatments that are given for breast cancer patients ― I can totally empathize. It seems like when I first came out of treatment, there was still debate going on as to whether there was such a thing as chemo brain. 

That was 15 years back. It’s absolutely acknowledged now as a result of cancer diagnosis, cancer treatment and people can get relief using different modes of therapy for it, or even just having a clinician acknowledge it. To say, yes, validate that you are dealing with these symptoms. That alone can be really helpful because it can be really hard to have these symptoms and then go to explain to your doctor what you’re going through. And the doctor says, ‘That doesn’t exist.’ 

It seems like there’s more of a willingness now for cancer clinicians and cancer institutions to own the damage that treatment does. I know that no one wants to hurt a patient, but cancer treatment can be harsh. And I think it can be tough for clinicians after patients go through treatment to see all of those side effects and aftereffects.

But you have to compare that to where we would be without the treatment. So Survivorship programs are doing what they can to ameliorate the damage.

It seems like Fred Hutch has multiple survivorship programs. As I mentioned earlier we’ve got the long-term follow-up for BMT survivors. We also have long-term follow-up for immunotherapy patients, which these patients are receiving a much newer, much different kind of treatment. We also have a Sarcoma Surveillance and Survivorship Clinic. There’s a Childhood Cancer Survivorship program. And then we have the Survivorship Clinic itself where you are the medical director.

Now you are in charge of the Survivorship Clinic. And the Survivorship Program. And Survivorship at Fred Hutch is changing. Can you explain how the solid tumor survivorship program is changing? I know we have a special program for sarcoma. But what about other solid tumors?

Dr. Vidhya Nair

As you mentioned, there are multiple different survivorship programs currently. I see patients in our Survivorship Clinic, which is in the Arnold Building on the Fred Hutch campus. I see patients with solid tumors, liquid tumors, even some we see occasionally will be patients from the BMT long-term follow-up clinic as well. 

It’s what we refer to as the traditional model of Survivorship, which is where patients get referred usually after they’re done with active treatment. Sometimes it’s when they’re in the middle of active treatment. And it’s a one-hour consultation visit where we go through all the late and long-term effects, talk about wellness screening and also complete what’s called a treatment summary care plan, which basically summarizes all the treatment that the patients received. 

The care plan is to help empower patients and also their primary care team as to what type of surveillance may still be needed and also what other types of screening are still needed. Because cancer patients are also at risk of developing other cancers as well, secondary cancers. So it’s important to know how the screening for that may be slightly different. 

So that’s what the traditional, you know, survivorship care or survivorship model is in the Arnold Clinic. Now, my role is actually to now lead what we’re calling embedded survivorship within the various disease groups. So we're starting off with solid tumors. And the way that we are implementing this is we are going in phases through each of the disease groups. 

We’re currently starting with the genito-urinary group. And how that will look for patients is that it’ll primarily be for patients who are getting treated at Fred Hutch, who have a care team here. Once they have completed what we define as active treatment ― that may be one year post chemotherapy, for example. At that point in time, they will have a visit with their oncologist or with an APP [advanced practice provider]. Most likely it’ll be the APP who was also part of the same care team with their oncologist. And they’ll talk about survivorship. They’ll talk about what surveillance looks like at that point in time. And they’ll talk about what kind of survivorship topics will be addressed, as well. And I should also mention that this is particularly for patients receiving what we refer to as curative intent treatment.

Most commonly, early-stage patients have a certain set period of active treatment and then they complete that, whereas for our metastatic patients, since those patients are typically on continued therapy, this won’t apply for them. 

Diane Mapes

So you’re saying that metastatic patients will continue to see their oncologists unless they might want to go to the Survivorship Clinic for a little bit of extra care for something or another.

Dr. Vidhya Nair

Yes, exactly. Metastatic patients can still be seen in the Survivorship Clinic and receive survivorship care there. For this specific model of embedded survivorship within the disease specific groups, that is specifically for curative-intent patients, early-stage patients. 

Diane Mapes

So can you explain a little bit what you mean by surveillance? Are you talking about surveillance in general just to see how you’re doing, to see if you have any symptoms, if you’re dealing with any late effects or are you talking about surveillance for metastatic recurrence or local recurrence? And can you also explain the difference between metastatic recurrence and local recurrence as well?

Dr. Vidhya Nair

So surveillance entails monitoring for cancer coming back. And cancer can come back both locally. And when we say local recurrence that’s means where it started. For example, for breast cancer, that would mean in the breast where it originated or in the lymph node on that side of where the breast cancer originated.

A metastatic recurrence or a distant recurrence means that the cancer cells have then spread to another organ in the body. So for example, if it started in the breast and then we find that the there are breast cancer cells in the bone, that’s considered a metastatic recurrence. 

Diane Mapes

And that’s why when people will go in for checkups, they’ll be asked certain questions. And these questions are to determine if they have a recurrence. 

Dr. Vidhya Nair

Yes, we’ll be asking for any type of symptom that makes us concerned that there may be evidence of recurrence. We’ll also do physical exams and in some situations it might also entail imaging, too. 

So sometimes, depending on the patient’s breast cancer surgery they may still require mammograms if there's still breast tissue there. For other types of cancers they sometimes do scans including CT scans. So, depending on what type of cancer diagnosis there is, there’s a set surveillance plan which is determined based off of NCCN [National Comprehensive Cancer Network] guidelines. That’s what we all follow. 

Diane Mapes

So it’s all tailored depending on your particular cancer, what kind of surveillance you will get. And then with regard to how do you know where to go and when. For instance, you talked a little bit about being in active treatment or out of active treatment. A lot of people don’t realize that, you know, with breast cancer patients, you might be on anti- hormone treatments for five, seven, ten years. 

Is that active treatment or is that passive treatment? How do you characterize hormone treatment in prostate cancer? Those patients also will take anti hormone treatment. Is that considered active treatment too?

Dr. Vidhya Nair

That’s a great question. So it really depends on the type of cancer. So for example there are some cancers where really active treatment in the early stage setting is surgery, radiation and chemotherapy, for example. 

And then there's maintenance therapy – that’s what we call it. Then for other cancers like prostate cancer, breast cancer, even neuroendocrine cancers, those are hormonally driven. And so anti hormone therapy is also incorporated into the treatment. And typically that treatment can last for years. 

So depending on again the type of the type of cancer when patients are on hormonal treatment, sometimes that's considered more of a maintenance treatment and not active treatment. 

Diane Mapes

So the definition of end-of-active-treatment varies based on the disease type. You nuance it and tailor it for the individual patient and, you know, whatever kind of cancer they had. 

So if you went to Survivorship during this period, what could you offer patients who are dealing with side effects of this maintenance therapy, for instance, like with a prostate cancer or a breast cancer patient who have hormone driven cancer and they have joint pain or arthralgia ― that’s a really common side effect. 

What can you do? What can you offer those patients? 

Dr. Vidhya Nair

So joint pain is something that many patients do have as a result of their hormone treatment and one type of therapy we can offer to help with mitigating those side effects is acupuncture. We have an integrative medicine service at Fred Hutch with acupuncture.  Acupuncturists come to our wellness clinic and can see and treat patients at Fred Hutch. 

We also have cancer rehab with dedicated physiatrists who specialize in cancer rehab and treatments for long-term late effects for cancer patients, and also for mainly for patients who are going through active treatment, as well. Physical therapy can be extremely helpful for that. 

Diane Mapes

What about things like the sexual side effects? Sexual dysfunction can be really common with a hormonal maintenance therapy ― they can completely squelch your libido and cause all kinds of other physical issues. Can you help with those things? 

Dr. Vidhya Nair

Yeah. So we have a sexual health clinic. Our sexual health clinic actually started with one very amazing and motivated nurse practitioner who was trained through our breast oncology program. 

She was seeing patients in breast oncology and developed an interest and passion for sexual health, and she received training. Now, she’s running our sexual health clinic. We started off mainly seeing breast cancer patients who have sexual health needs. But our plan is to expand that, first to breast cancer patients who are still on treatment, and also breast cancer survivors who are off of treatment but still have sexual health concerns. And then also seeing what’s going on with our male patients, our prostate patient population who can also be significantly affected. 

As you mentioned, prostate cancer can have many sexual side effects, sexual health side effects. The University of Washington has a men’s health clinic that can address sexual dysfunction. And that’s within our urology group. So that’s a resource for our male patients who have sexual dysfunction. 

Diane Mapes

That’s great because some of these things are really hard to bring up with your doctors. And, you know, you don’t want to seem ungrateful. I wasn’t treated at Fred Hutch, but I came to Fred Hutch when I came to work here ― I switched my care over. And sometimes it’s like, I don’t know if I should mention this because I’m really happy to be here, but …

It’s hard, especially hard, with the sexual stuff, I think. 

Dr. Vidhya Nair

You bring up a great point because I think sexual health is one topic, but there’s also other topics that are addressed in Survivorship that I think patients don’t think to bring up with their oncology team. And that is the purpose of us embedding survivorship. So that way every patient gets, you know, exposed and receives some form of survivorship care. 

And part of that will be making sure we’re addressing all the survivorship topics you know in this longitudinal time. So it’s not like how we’ll do it in the Survivorship Clinic where we try to get through all the topics within that one-hour consultation. This will be addressing one or two topics at a time over multiple visits. 

Diane Mapes

Yeah, because you are on some of these anti-hormones for years and you might be on more than one and then the side effects may be different a little bit. So it’s an ongoing issue. 

With regard to the survivorship plan, that was my first clinic visit at Fred Hutch when I switched my care over, and I found that to be a really valuable experience. 

Number one, I did not realize that I had such a risk for cardiovascular disease. I had radiation on the left side, my heart, and my lung. And then I also had a particular kind of chemotherapy that can cause cardiotoxicity issues. But aside from that, there was also the reminder that my hearing might be impacted. And it has been. I have some pretty severe tinnitus. So these are things that can come with treatment. Dental issues, hearing issues, vision issues ― all kinds of things can come with cancer treatment that you don't even necessarily think about. Another one that people don’t realize is the possibility of a second cancer. That’s another thing I found to be really helpful to learn about when I went to that Survivorship Clinic and had my survivorship plan put together.

Now I know you see lots of different kinds of patients. We are not a monolith, right? People have very different feelings about cancer. And if they want to think about it anymore, if they want to see anybody for it anymore. I do worry about the folks who say, ‘No, it’s all behind me, I never want to walk into that place again!’ because you know that there are folks like that. It’s too troubling. It’s too traumatic for them. But they have issues that they should probably look into. They may have risks that they want to, you know, make sure that they have all the information that they can get. So I do worry about the folks who just want to keep walking and never look back. 

I understand it, but I want to make sure that they know there are certain things that they will want to look into. It’s not like you’re clinging to your cancer treatment, like ‘I don’t want to let go.’ You know, you are moving forward. But it’s also important to be moving forward informed.

When you talk to folks, when they transition, you must have a conversation about how important it is that they’re aware of certain symptoms and side effects and late effects.

Dr. Vidhya Nair

Yeah. Exactly. And yeah, the way that I try to explain it to patients is, you know, from having a cancer diagnosis and from the specific type of cancer treatment that they’ve received, there are things that they should be aware of that could develop later on, which is a later effect, like you mentioned, or things they may struggle with for a long period of time, which is a long-term effect. 

And then there may be secondary cancers that they could be at risk for based off of the type of cancer that they had or their treatment. And that’s really where that treatment summary care plan is so valuable, because it is a document of physical...and a physical representation of that. It’s a lot for a patient to have to know and be aware of. 

So that is a really great resource for them to keep after they’ve gone through their treatment. And also, as you mentioned, if you transfer care. It’s a great summary for establishing care and it’s great to give to your primary care provider so they also know what kind of follow-up is needed and what kind of late effects that they should be aware of. Because I think the common thing I've heard from some cancer survivors is that they don’t always feel supported after they leave their oncologist in terms of what kind of care they should receive. And so the hope is that things like this will help support them for that. 

Diane Mapes

As I recall, you’re going in there all the time. It’s like you have a full-time job you’re going to all the time for your treatment, and then suddenly, bam, you’re done. And you do have this empty hole in your life, you know, and you kind of worry and you kind of wonder and you can feel like you’re dropped off a cliff a little bit. 

I've heard that a lot from other survivors, too. So it’s really great that you are kind of stepping up and embedding Survivorship, because then it’ll just be a natural transition from active treatment into survivorship and surveillance, where they will be for maybe a couple years or five years or ten years.  

Dr. Vidhya Nair

So yeah, typically the way that we are modeling it right now, it will be somewhere between five to 10 years depending on the disease type. And then people will just transition to their PCP, their primary care physician.

Diane Mapes

But if you see something troubling you, who would reach out to if you’re like 12 years out? And you think, ‘This is weird, I don’t know if I like this. This feels like my lymph node is swollen or I’ve had a headache for three weeks.’ What do you do?

Dr. Vidhya Nair

So if you are no longer getting, you know, surveillance within the oncology clinic, you at that point should go to someone for any type of new symptom that’s concerning. You should go to your primary care doctor, and the primary care doctor should be responsible for working that up if there is something concerning there.

Diane Mapes

And you would want to remind them, by the way, I’m a cancer survivor, right? 

Dr. Vidhya Nair

Yes. And that’s also the purpose of doing survivorship. It’s to talk about and make patients aware of what symptoms they should be concerned about. So, you know, unexplained headaches, persistent bone pain, having unintentional weight loss. 

You know, those are the things that patients should be aware of. If they notice that, then that's when they need to seek attention from their primary care doctor. There's also, you know, since I do see patients in the survivorship clinic, there have been instances where we sometimes do see patients, you know, who are years out from cancer diagnosis and then, you know, may have some additional concerns that could be either symptoms of recurrence or late and long-term effects. 

Diane Mapes

And it can be scary, too. So I'm sure that you folks also have referrals that you can give for counseling and mental health specialists who can talk about the side effects that they're feeling. One of the things that I've found is that when you come out of cancer treatment and if you've had multiple surgeries and chemotherapy and radiation and anti-hormones, it's not like you're asymptomatic. 

Your body has gone through a lot of changes, and you have a lot of new symptoms. And it's hard to differentiate. ‘Is this something from my cancer that's coming back or is this something from my treatment just kind of, you know, like getting through?’ So I think that that is a hard part for a lot of people coming rolling out of treatment, you know, because you're not asymptomatic. You are very symptomatic, but it’s hard to separate the strings and figure out if this is something that's normal, or is this something you need to worry about. So Survivorship can help with those kinds of issues.

Dr. Vidhya Nair

Exactly. One big topic that comes up in Survivorship is fear of recurrence. I've noticed with some of my patients that it’s a topic that kind of creeps up on people. I think that oftentimes patients are surprised, you know, when they're done with their active treatment that then that's when that fear of recurrence or anxiety starts to manifest. 

That's a really important time to help support patients through that, as well. And as you mentioned, we do have psychosocial supportive care services. So we have psychiatrists and psychologists on our teams who can support patients through active treatment. And the hope is to help establish them with a counselor in the community, because I think long-term support is also really important for our cancer population. 

Diane Mapes

And it's not completely illogical, you know, because we do have metastatic recurrence that happens to certain patients. It’s not an irrational fear at all.

Dr. Vidhya Nair

No, definitely. Even just going through the initial cancer diagnosis is traumatic. So many patients went through a traumatic experience where their symptoms weren't being acknowledged, or they had to really advocate because they knew that there was something wrong before they ultimately got their diagnosis. 

So I think that it's like you said, it is rational based off of the experience that people have gone through.

Diane Mapes

And the statistics! We know with ER positive breast cancer, for instance, it's like 20% within 20 years will have a metastatic recurrence. It's just that you have to, as I said, separate the strings and figure out ‘Is this normal post-treatment stuff that I'm going through or is this a sign of cancer progression?’ And that's tough. And you also have to kind of get your mind into a place where you can handle that uncertainty. 

I was stage three when I was initially diagnosed; I'm 15 years out. I go by how I feel. You know how much I'm able to do. And I think about the exercise that I do every day and I think about the things I'm doing to make sure I'm healthy, you know, diet and nutrition and, and social contacts and all of those things, you know. And so that's what I go by rather than thinking, oh, you know, it's statistically this, that or the other.

So it's important to stay on top of that and not let cancer win that fear game. You know, but it's not it's not easy to sit in that place of uncertainty. One of the things that I have heard a lot out there in the general public, is that there's a belief that if you survive five years, you're cured. 

Now would that be true. That would be great. But we are and some people are totally, you know, five years after treatment, five months after treatment, they're cured. Right. But this seems like this myth just keeps perpetuating that, ‘Oh, you're five years out. You're good. You never have to worry again.’ Where did that come from? 

Dr. Vidhya Nair

So I'll speak more to breast cancer. For breast cancer, we know that the highest risk of recurrence is within five years. For patients who have triple negative breast cancer or who have HER2 positive breast cancer, once they hit their five-year time point from their diagnosis and treatment, we do feel that the risk of recurrence is significantly less at that point. 

It's not zero. It's never zero, right?

Diane Mapes

That’s triple negative. And HER2 positive.

Dr. Vidhya Nair

Whereas hormone receptor positive breast cancer, that specific subset has a long-term risk of recurrence that is kind of distinct from the other types of breast cancer. And so I think it just sort of shows that each disease, each type of cancer has its own type-specific biology. 

And so we really have to be with the advances and the additional information that we have, I think we have a better understanding of recurrence risk. And I think we have to use that information to really help to individualize that for each patient. 

Diane Mapes

That's great. I think that a lot of people forget that if there's 20% recur within 20 years, that means 80% do not. 

Dr. Vidhya Nair

Right.

Diane Mapes

So it’s good to hold on to that! Are there other myths that you hear from people when they come in? Are there things that they just have heard wrong or gotten wrong that you clarify for them?

Dr. Vidhya Nair

I think nutrition is a big one. There's a lot out there right now and questions about that in terms of weight loss, in terms of sugar, in terms of fasting. So I think that there's so much information that exists right now on the internet and social media about that. That's oftentimes a question that we receive, especially when patients first get diagnosed, like what kind of diet should I be following? Or what kind of diet should I follow after my treatment? 

Diane Mapes

‘What kind of supplements should I take?’ I think that that is a really common question. Tell me what you think that they should take.

Dr. Vidhya Nair

There are lots of different things out there, as you mentioned. I think some of the most important, you know, supplements, especially for our patients who are on hormonal therapy. So for breast cancer patients, on endocrine therapy and for prostate cancer patients on androgen deprivation therapy, they're at higher risk for osteoporosis. 

So calcium and vitamin D are really important for those patients. And even just having chemotherapy, that also increases risk for osteoporosis. And we live in the Pacific Northwest where we only have so many months of sunshine. 

Diane Mapes

For the most part, though, it seems like the large research organizations and associations advise against taking all kinds of supplements because they're not proven to make a difference. And that it's really important if you have these questions to talk to your doctor about it. Or your oncologist about it.

I know some supplements will actually counteract the treatment. It's not good to take them at the same time.

Dr. Vidhya Nair

Yeah, that is something that I think has become more prevalent — the use of supplements. We're very fortunate that we have our integrative medicine team at Fred Hutch, and they actually have a dedicated integrative medicine pharmacist who can go through patients' supplements and look at things like interactions. Some supplements have estrogenic properties and so for patients who have estrogen receptor positive breast cancer, we counsel them that that supplement would increase your risk of a cancer recurrence. So, you know, you should not take that? So that's a really great service that that we have for patients who have that specific question about supplements. 

Diane Mapes

So this has been great, Dr. Nair. I really appreciate your time and all this information. Is there anything else that you want to share with patients about Survivorship and how the program works at Fred Hutch and what your vision is for that program?

Dr. Vidhya Nair

Yeah, one thing that comes up is that the term survivor doesn't always resonate with people. And I think as an oncologist, as someone who is really passionate about survivorship, I think we all recognize that that's not always an all-encompassing term. 

But I think the concept of survivorship is to really help support patients who have gone through a cancer diagnosis in a holistic way. And I think that's really what the goal is there. And so with this initiative, our goal is for every patient who's treated at Fred Hutch to have access to survivorship care. And that is ultimately why we're building this program.

Diane Mapes

One of the things I really like about Fred Hutch Survivorship Program, though, is that if you have been treated elsewhere, you can come to the survivorship clinic, you can self-refer to the survivorship clinic. And you can get a care plan. And you can get advice and help. 

So it really is available to every cancer patient who is in the region and would like to be seen there to take advantage of all the research that Fred Hutch has done on cancer survivors and how to help them live better, healthier lives. 

It’s wonderful that we can share the knowledge. I always say knowledge is power.

Dr. Vidhya Nair

Yes, exactly.

Diane Mapes

Well, Dr. Nair, thank you so much for your time and all the information that you've been able to provide people on the Fred Hutch survivorship program. Again, this is Diane Mapes with Fred Hutch News and our podcast, From Bench to Bedside and Beyond. Thank you so much for tuning in. We'll see you soon.