Survivorship Care Plans

Jamie DePolo: Hello, everyone. Welcome to this edition of the Breastcancer.org podcast. Our guest today is Dr. Dori Klemanski. She’s an adult nurse practitioner who is clinical director of survivorship at the Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute. In this role, she helps identify the unmet needs of cancer survivors as well as late and long-term effects of treatment. She also oversees the creation of survivorship care plans to meet the long-term needs of survivors. Today, she joins us to talk about survivorship plans for people who have been treated for breast cancer. Dr. Klemanski, welcome to the podcast.

Dr. Dori Klemanski: Thank you for having me.

Jamie DePolo: To start, I know in 2015 the American Cancer Society and the American Society for Clinical Oncology released their guidelines for survivorship care for people who have been diagnosed with breast cancer, and I know not everybody necessarily knows what a survivorship care plan is. So could you explain what that is a little bit and why these plans are so important?

Dr. Dori Klemanski: So a survivorship care plan is actually comprised of two parts. One is called the treatment summary, which is a record of all of the main cancer treatments they had. So it should list their surgeries, chemotherapies, and any radiation treatments. And then the second part of the document is essentially a roadmap of what’s to come. It should cover things such as what to expect when you finish treatment — those are sometimes called late and long-term effects. It should also cover a surveillance schedule, so it should list what tests you will get, who will actually order those, and the schedule that they should be on, so the time frame of how we actually order those and why they’re important to us. And the other component that happens a lot is health promotion and health maintenance, where we discuss common concerns of survivors, and we also review healthy living recommendations and then provide resources to people who may need additional information after they have a care plan reviewed with them.

Jamie DePolo: Okay. Now before we go on, I know there is some controversy about the word survivor, and some people are not comfortable with that term. So I’m wondering, I know you see patients, could you talk a little bit about that? What do you do if someone is very uncomfortable with that concept?

Dr. Dori Klemanski: Sure, and it is a very personalized word. Sometimes survivor implies that it’s a past tense event, and many people sometimes say, “Well, I’m still living through it” or “I’m still adjusting to the fact that I’ve had cancer.” Just like anything, no one group of individuals or cohort actually adopts any phrase and feels that that actually reflects who they are. So while we use the word survivor and use survivorship as a concept in cancer care, we do not expect patients to have to use that word as well. So what we usually try to… we try to reframe it and say, “You don’t have to like this word, perhaps you’d like to be called a thriver or a warrior, or you don’t want to have any term applied to you.”

We actually say what’s more important is to embrace the concept and what we mean by survivorship, which is really driving towards having a great quality of life and being as well as you can be and living the life that you can after treatment. So even though things may be different, how do we get the individual to feel that they are living their best life?

Jamie DePolo: Okay. Okay. Thank you, and to me, just my interpretation of these plans, it sounds like people who have been treated for cancer may have higher risks of other things, say for example, somebody who’s been treated with Herceptin may need closer monitoring of heart function just because they’ve had that treatment and that treatment is known to potentially cause some heart problems. So it’s kind of, as you said, helping people live their best life, but also sort of alerting them and their doctors on what to look out for. Is that fair to say?

Dr. Dori Klemanski: Yes, absolutely. So it is essential that we personalize each of these care plans. So while there are templates that guide us, you know, you mentioned the American Society of Clinical Oncology or ASCO earlier, and they do have a template that a lot of us use for the care plans, they really are meant to be individualized and personalized to the patient. So whenever we’re discussing whatever treatment they got, we really do try to highlight what would be a benefit or a risk to them of how to proceed.

And as you said, we do try to share these with their primary care physicians or even other providers that they may see so that they have an idea of what to expect afterwards.

So even though the whole goal is to make them feel or actually get them to a place where they’re living their best life, it is making them aware — without scaring them — of what could potentially be things to watch for. You know, patients are often their own best advocates, and so it is our job to make sure that they have enough information about when to alert a provider if something changes or is different, or to know that they may need closer monitoring because they were given medication or a drug that could potentially hurt their heart. So it is very important.

So a big part of survivorship is also coordination of care and trying to take some of that off of the patient and making sure that we, as cancer providers, connect back with their primary care teams and/or other people, but it is also empowering the patient to feel like they are the survivor, to feel like they have the information they need should anything arise in the future.

Jamie DePolo: Now I know it can seem overwhelming, maybe, to start creating one of these plans. What is the best place for a person who has been treated for cancer to start? Is it usually the oncology care team that sets up this kind of plan? Is it the general practitioner? Does the patient suggest it? How does that all happen?

Dr. Dori Klemanski: Ideally the oncology hospital or treating physician — whether it’s in the community or in an academic center — the oncology team should be the primary point of initiation for these care plans. Most of the time in the cancer world we understand and know what has gone on, and we are able to put it together in a really succinct, chronologic order. And then the idea is that we don’t just give it to the patient in a written format, but that we would review it and discuss it with them over a visit. Sometimes these visits can be 30 minutes, sometimes they’re 60 minutes, and it’s really meant to help the patient kind of understand what we’ve written down and typed out for them, and then for them to ask questions and to get clarification.

And then the other piece that we do is we send a copy to the primary care that’s on file so that they also can see what we talked about with the patient.

Another good thing that is in the care plan is it also does document the treatments that they had, so it can also be a reference point. So in the future we don’t always remember everything that’s happened to us or every chemotherapy that a patient was given, so it’s a nice record of care should they ever need to remember in the future. For instance, you mentioned before if they have heart trouble or something like that, to know oh, I did get that medication, or for their doctor to know, oh, I did get that medication.

So it really does need to start with the oncology team, but if a patient or a survivor has not received one then I would always encourage them to ask their cancer doctor or cancer nurse practitioner or team to see if they are eligible for one and how they can go about getting one.

Jamie DePolo: You mentioned a few things in there, things that would be in a care plan such as the record of treatment. Are there any other specific things that go in there? You know, obviously, if someone has been treated for breast cancer I’m assuming that there would be some type of screening, probably more aggressive than the one mammogram per year. Are those kinds of things in there as well?

Dr. Dori Klemanski: Yes. So there are… I will try to provide the highlights so we don’t bog down everybody with the details, but essentially, yes. There is a record of care, which I talked about. We also will review any genetic variants that happen with testing, because a lot of women with breast cancer will have a lot of genetic testing done. So we will discuss those results and what they mean and how often and what does that change for them.

Another big portion of it is, as you mentioned, the surveillance testing. So it will talk about how often you should get a mammogram, who is going to order it, is it the oncology team or the primary care team? And then any other testing. So once somebody has had a cancer diagnosis they can be at risk for a different type of cancer, so we will also review that with them and how they maintain screening for other cancers.

And then it will also review those late and long-term effects. So a late effect is what we talked about earlier, which is when you’re given a medication such as doxorubicin for instance, and it may cause a problem with their heart. Well, that can happen years down the road so that’s a late effect, meaning it can happen much later. A long-term effect is something like neuropathy or the numbness and tingling that you can get, pins and needles feeling in your extremities after a certain type of chemotherapy. That happens during treatment and can continue after you stop. That would be a long-term complication. So we try to highlight those.

We also try to review with survivors what signs and symptoms they need to pay attention to should they start to notice something. If pain isn’t going away or it’s new or different, you should report that, those types of things.

And then the other big piece that we try to cover in there is how to live a healthy life. We review kind of everything from tobacco cessation to good nutrition practices to how to be safe in the sun. So we really do try to cover lots of different areas. And then, as I mentioned, we try to personalize it. So if someone is still thinking about starting a family or wanting to do more family planning, we can discuss that with them, or if they want to discuss how to return to work or how to just integrate a walking plan into their life, we will cover all those aspects with them.

Jamie DePolo: So I’m curious too, if somebody, say they — I’ll just stick with the heart effects thing — if someone was having heart effects because of treatment and they were seeing a cardiologist, does the cardiologist also get a copy of this plan? I guess I’m wondering if every single provider someone would see, so if they see a nutritionist, if they see a cardiologist, if they see, you know, a specialist for neuropathy, does the patient then have to make sure that she gets a copy of this plan to all her doctors, or is that something that the oncology team does, or how does that work?

Dr. Dori Klemanski: So traditionally, we have not done that. We have essentially, and I’m talking nationally now when we talk about the model, the idea is that it should be shared with the primary care provider. That doesn’t mean that it shouldn’t be shared with others, but I would say that that is probably not happening on a large scale across the country. Certainly we provide copies, like paper copies, to the survivor, and then we will either send it through a fax or some sort of way through the electronic medical record. The advent of the electronic medical record has been very useful, though, because there are certain medical record companies that will allow hospitals to sort of talk to each other through portals. And then the other thing that we are able to do at our institution, and I’m sure others are as well, is to share an electronic copy with the patient through whatever patient portal they use to access their medical record so that there’s always a copy in that app.

Where it gets tricky sometimes though, and I don’t want to go down a rabbit hole for electronic medical records, is that a lot of institutions are not able to share that data. So this is still an issue — that we’re not able to share it with every provider that they have. I would say right now most institutions are at least trying to send it to their primary care. It’s probably a direction we should think about moving towards so that everybody is on the same page and talking about that coordination of care, which is a really big component of survivorship care, but unfortunately we’re just not there yet.

Jamie DePolo: So it sounds like for that, that a patient may still have to be her own advocate and sort of think about some of those things if there’s a specialist or another provider that she is seeing regularly that she might want to share her long-term care plan.

Dr. Dori Klemanski: Unfortunately, yes. We do try very hard though. There’s a portion on the care plan that lists their main providers. So it will review all of their oncology team whether surgeon, medical oncologist, radiation oncologist, but we also do try to put other providers on there. So we do try very hard to at least have a record of who they’re seeing. It’s certainly something that we should think about in the future of doing so that we do take some of that burden off the survivor, but we’re just not there yet.

Jamie DePolo: Well, that’s fair. That’s good to know. So how often should these plans be updated? I’m assuming it’s somewhat individualized, but do you do an annual review with patients, every 2 years? How does that work?

Dr. Dori Klemanski: That’s interesting. It’s actually meant to be a one-time review. So we do not generally update the care plans. We can, at a request of a patient, but institutions historically across the country are faced with providing this just one time, and there’s a lot of logistics and barriers that are preventing us from doing it for every patient. You know, that’s certainly the metric, and the goal is that every patient who is eligible for a care plan would actually receive one, but that hasn’t hit that market nationally so we are even struggling to make sure that patients get it one time, let alone repeated visits.

Jamie DePolo: And that brings up another question for me. I’ve seen some research, some surveys suggesting that the survivorship care plans, the percentage of people who have them is much lower than the national cancer organizations would like. It’s lower than their goals. In your experience, I know you work in the area so your experience may be a little bit skewed, but do you think that the average person who has been diagnosed with cancer knows what a survivorship care plan is?

Dr. Dori Klemanski: I would love to answer yes, but I still think we have a long way to go to make sure that this is a standard part of care and that a survivor would know, yes, that is what I need at the end of treatment. You know, even at our own institution we’re meeting about 50%, which is the national standard of where we’re supposed to be at, but it’s still not the right metric. We need to make sure that every patient is aware of it.

So I think that there are definitely strides that have been made in the last 10 years since the care plans have sort of come into being a part of cancer care, but we’re still a long way from making it a standard part of care. It will happen, unfortunately it’s just been a slower process than a lot of us thought it should be. In theory giving someone a document and creating it sounds fairly simple to pull off, but it’s been more complex for institutions to actually make it happen. There’s many reasons I can go into if your audience is interested.

Jamie DePolo: Or maybe we do another podcast on that because it sounds like it might be very complicated. But I’m wondering, I don’t know, at the national level are systems being put into place to increase those numbers or make people more aware so they can ask for it, or is it really done being more on an institution-by-institution basis?

Dr. Dori Klemanski: So there’s one major accrediting body. So hospitals get different accreditations, and there’s one through the Commission on Cancer, which requires hospitals who are accredited members to provide these care plans to patients and survivors. Really, everything else is best practice or a guideline or a suggestion that it be done.

Unfortunately, one of the challenges that we run into is that when we actually studied this and looked at kind of some outcomes, there wasn’t anything that we could tie directly to a survivorship care plan that said oh, well, they have lower rates of depression or lower rates of cardiac or heart problems. That doesn’t mean that it’s not the right thing to do and that we shouldn’t continue to do it and continue to look for reasons why it’s important to deliver the care plans. Certainly survivors have told us anecdotally as well as in lots of literature that it’s incredibly important to them that they get this. They feel that they’re heard and that they have a road map.

So those are some of the challenges that make it difficult for these to happen, so it really has been up to institutions to develop their own algorithms and frameworks and plans of how they’re actually going to implement survivorship care plans in their own institutions. So while there’s national momentum behind getting this done, it’s still at the kind of institution level to make sure that it’s getting done.

Jamie DePolo: That’s good to know too. So I want to switch gears a little bit here, thinking about somebody who has been diagnosed. A woman who has been diagnosed with breast cancer at 35, to me anyway, it seems like she would have a very different survivorship care plan to a woman who was diagnosed at 70, and I know you talked briefly earlier about family planning and things like that. You know, are there other things that are unique to say a younger survivor versus an older survivor?

Dr. Dori Klemanski: Absolutely. I mean, yes, family planning is an important part of it, but as I said every care plan should be personalized to where that person is in their life, their lifespan, their trajectory, their development. So it is important to take into consideration not only physically what their age, is but kind of where they’re at spiritually and mentally as well.

And so there would be differences in family planning, there certainly could be genetic variations in what can be considered different for what you’re going to do for a 70-year-old versus 35-year-old, certainly there are considerations when they think about what they’re going to do for hormonal therapy based on age and where they’re at with menopause and where they’re at sort of in their menstrual cycles and things like that. Other considerations certainly would factor in around where they’re at not just with family planning, but are they a young parent, how do they navigate that, are they back in school, where are they in the work cycle, have they retired, have they not retired?

And then on the other spectrum when you’re thinking about someone who is menopausal, and I don’t think 70 is particularly old but we call them older adults, and so I think it’s important to think about kind of other things that we think about — you know, bone health and making sure that they are looking at all of their medications and making sure that they’re safe and with polypharmacy and cognitive decline and things like that — are all important to think about when you’re thinking about not just age as a number.

Jamie DePolo: That’s very helpful. Now I also want to talk a little bit about people who have been diagnosed with metastatic disease. So they’re surviving, but they’re also living with cancer. Is it common for a person with metastatic disease to have a plan like this, or is it more of a treatment plan? That’s what I wasn’t sure about.

Dr. Dori Klemanski: It’s more of a treatment plan. When I mentioned earlier the accrediting body that came through or that I mentioned with the Commission on Cancer, it’s really geared to patients that are treated with curative intent who are essentially stages 0 through III, particularly in the breast cancer world, so DCIS through stage III. Stage IVs have not traditionally been included, and it’s not because they’re not important to have this information — it’s vital for them to have a lot of this similar information — it’s just been the logistics and challenges of getting it done for those who have curative intent that I think has been somewhat of a barrier to making sure patients who have metastatic disease don’t receive the same thing.

So there is something through ASCO or the American Society of Clinical Oncology — it’s called a treatment plan, where we can talk about some of these things and really think about it in the framework of kind of, how are you doing it during treatment. Again, unfortunately this is not a widely done process. I think institutions and cancer doctors and nurses are getting savvier and their patients are telling them that this is a very needed thing, so it’s been patient driven, which is an important advocacy point on their part, but it’s making us more aware that this is still crucial information that they should have as well and helping us rethink how do we do this. But unfortunately most things are driven by the standard, which is those who are treated with curative intent will receive a care plan.

Jamie DePolo: That’s good to know, but if somebody did have metastatic disease he or she could certainly ask for it. So that, again going back to the patient being her own advocate. All right. To wrap up, if someone out there is listening and says, “Oh, wow, I don’t have a survivorship care plan,” you could offer maybe two or three steps or tips for how she would go about getting one.

Dr. Dori Klemanski: Absolutely. So the first thing would be to have a good communication plan with their cancer team. So most institutions are aware that they should be providing a survivorship care plan. So if someone does not have one, I would start there. I would start with their cancer care team and say, “Hi, you know, I heard about a survivorship care plan. Am I eligible to get one, and how do I go about doing it?”

If they don’t get anywhere with that they can certainly… there are a few sites online, so Journey Forward would allow a patient to create their own care plan based on information that they had. Certainly I would recommend that a provider or a cancer doctor or nurse practitioner help them with that, but if they feel like they really want one and there’s more information, then Journey Forward is a good place for them to start.

And then Cancer.net, or the American Society of Clinical Oncology, has a really good website that patients can also navigate and kind of look at to see and get some good answers. And then finally, the National Cancer Institute always has really great information, and they have booklets about how to talk to your doctor and kind of what to expect as a survivor. So I would recommend those things to kind of get started, but the best place is to go straight to their cancer team.

Jamie DePolo: Thank you. That’s very helpful, and I was going to finish up but there was one thing in there that you said. If a person is eligible for a plan, what makes someone eligible versus not eligible? I just want to be clear on that.

Dr. Dori Klemanski: Sure. Eligibility is really determined by that Commission on Cancer. So what they have determined is somebody who is eligible would be somebody who finished treatment for curative intent, so they do not have metastatic disease, within 6 months of them finishing treatment. So that doesn’t include hormonal treatment, that would just be when they finish their primary treatment like surgery, radiation, or chemotherapy. So when they finish within 6 months and if they have stage 0 or DCIS or even LCIS through stage III, then that’s what would make them eligible. So essentially patients who are not metastatic and also have their cancer for the first time, so it’s not a recurrence.

Jamie DePolo: Help me understand, I just want to make sure I’m understanding this too. You said 6 months, so surgery had to be 6 months or longer earlier, or is it that patients only have a 6-month window of time to get the care plan?

Dr. Dori Klemanski: Oh, no. So it’s really on us actually. That’s really a metric for us to hit. It’s to make sure that within 6 months of finishing all of their treatment. So if they just had surgery, then we would do it within 6 months of surgery, but if they’ve had all three then it would be 6 months from the date of their last treatment for whatever it was. So that’s really a metric for us. It doesn’t mean that patients can’t go ask for one or get one, that really was meant for us, that we should really be targeting people within the first 6 months because that’s an important transition point where they really need this information about how to move forward and what they need to know and kind of what surveillance and testing they’re going to get. I’m sorry if that wasn’t clear, that was more for us than for the patients.

Jamie DePolo: No, that’s fine. I just wanted to clarify. So if somebody say did finish treatment 1 or 2 years ago and does not have a survivorship plan, she could still go back to her oncology team and say, “Hey, I heard about these plans, I’d like to have one”, and move forward that way.

Dr. Dori Klemanski: Absolutely. Yes. It’s just that metric was meant more for us, that we should be targeting people who just finished treatment. That’s the entire intention behind the care plans.

Jamie DePolo: Dr. Klemanski, thank you so much. I think this information is going to help a lot of our listeners and I really appreciate your time.

Dr. Dori Klemanski: Absolutely. It was my pleasure, and I’m grateful that survivors care and really want this information, and I hope in the future that this becomes a standard part of care and they don’t have to ask or advocate anymore on their behalf.