Coping With the Fear of Recurrence, with Hester Hill Schnipper, LICSW, OSW-C

December 17, 2019
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In this podcast, oncology social worker and 2-time breast cancer survivor Hester Hill Schnipper discusses ways to cope with the fear of recurrence. 



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Greg Guthrie: Hi, everyone. I'm Greg Guthrie, a member of the Cancer.Net content team, and I'll be your host for today's Cancer.Net podcast. Now as a reminder, Cancer.Net is the patient information website of ASCO, the American Society of Clinical Oncology. And today, we're going to be talking about coping with the fear of recurrence, and our guest is Hester Hill Schnipper. Hester is the emeritus manager of oncology social work at Beth Israel Deaconess Medical Center in Boston, and she now works in private practice. A 2-time breast cancer survivor, she's a nationally known speaker, is active in numerous oncology organizations, and has written 2 books about breast cancer. Her daily clinical responsibilities include working with individuals, couples, and families living with cancer, and facilitating support groups. She's also a member of the Cancer.Net editorial board. Thanks for joining us today, Hester.

Hester Hill Schnipper: Thanks so much for asking me. It's a pleasure.

Greg Guthrie: It's a pleasure having you on with us here. So let's just start off with some basic questions so we're all on the right footing. What is cancer recurrence?

Hester Hill Schnipper: Cancer recurrence is a return of a cancer that was previously diagnosed. When all of us initially have a cancer diagnosis, part of the conversation includes what the general statistics, what the odds might be, how much we need to worry about a recurrence. But the truth is nobody ever knows with certainty what is or what is not going to happen, and all of us who have been through a cancer diagnosis and treatment live with some level of concern about the possibility of a recurrence. A recurrence, generally, not just for breast cancer, but generally for cancers is even scarier than the initial diagnosis because the initial diagnosis may well include the probability of treating for cure, whereas a recurrence generally means that the cancer is no longer curable, and the individual can anticipate just being on treatment for the duration of life.

Greg Guthrie: So this is a really common occurrence?

Hester Hill Schnipper: Well, it's more common than we would like it to be. Certainly, everyone wishes that you get through it the first time and you can truly be done with it. But none of us get a promise about that, and so all of us worry about the possibility of recurrence.

Greg Guthrie: And so most people are afraid of cancer recurrence, then this is kind of a frequent emotion?

Hester Hill Schnipper: I think so. And a very important thing for everyone to remember is this is a normal worry. I mean, cancer recurrences happen. It's not like being worried about, "Is there somebody hiding in my closet at 1 o'clock in the morning?" I mean, this is a genuine authentic thing to be concerned about. It's not a neurotic worry. It's real.

Greg Guthrie: Oh. And so what are some of the ways that this fear of recurrence can show itself?

Hester Hill Schnipper: I think people worry about it in a lot of different ways. And certainly, how intense the worry is is related to a number of factors. One has to do with the woman or the individual's actual medical situation. Again, how nobody gets a promise, but you know from the start that some people are more likely to have to face a recurrence than others just depending upon the specifics of the initial diagnosis and how well the first time treatment went.

People who deal with anxiety in their lives before they ever had cancer are of course going to be very anxious about this because it's the way they live and it's how they manage in the world. And now, they have 1 more very real and scary thing to be anxious about.

The way most of us experience it comes in thinking—hopefully not daily as some time passes—but thinking frequently about the what-ifs. So sitting around, say, a Thanksgiving table, and instead of just being glad to be there, also wondering, "Is this my last Thanksgiving?" Every ache and pain is experienced as a possible return of a cancer, the first thought being, "Oh, no. The cancer is in my back," as opposed to, "Oh, I should have gotten help moving all those heavy cartons yesterday."

It keeps some people awake at night certainly when we hear of a friend who has had a recurrence or even someone who has died of breast cancer or another cancer. That makes it scarier. People worry more before doctor's visits, appointments, before any scheduled scans, mammograms. Whatever their medical times and appointments are, those are certain to be moments to raise the fear.

Greg Guthrie: And how can people cope with or lessen these fears?

Hester Hill Schnipper: I think the first thing to say is that time helps. I think for most people, it doesn't go completely away but it absolutely gets better as some time passes, as you regain your physical health. When you look in the mirror and you look like yourself instead of a bald sick person, as life resumes its usual rhythms and busyness, cancer, most of the time, starts to recede into the background. Beyond that, the promise that it will get better. There are, of course, things to do that can help. And most people are helped by staying informed and staying connected. The reality is usually not as bad as what we might imagine. So really understanding what our situation is, complying with whatever the doctor's orders are. Some people continue on some kind of treatment past the usual chemotherapy, women with ER+ breast cancers. For example, staying on hormonal treatments for years or a decade or sometimes even longer. So complying with whatever the medical recommendations are.

The danger with thinking too much about the influence of lifestyle choices is believing that we are in control, that we can control it, because really we can't. I mean, by going through the prescribed medical treatment, we've done what we know we can do. And beyond that, there's some things that may tweak the odds a little around the edges, and those things include staying at a healthy weight, continuing a regular problem of mild to moderate exercise, eating a good diet, limiting your alcohol intake. Just living healthily in the ways we all know we should be living healthy anyway. They're not really special rules for cancer. They're the same rules that apply to good cardiac health or good any kind of health, but we just have different impetus to really pay attention to them.

Greg Guthrie: Right. And what are some of the ways that people can maybe build that acceptance of, "We can't control everything" in this situation?

Hester Hill Schnipper: Well, obviously, that's easier for some of us than others because some of us feel like we need to be in control of every single thing. And recognizing as life goes on, how little we really are in control in, I laugh off with my patients about how you get to choose what clothes you put on this morning and you probably get to choose what you have for lunch, but that's about it over the course of the day that you are really in control of.

So what can we do? Again, exercise helps not just in physical health but it helps most of us with mental health also. We continually hear about the fact that you know some kind of mindfulness or meditation practice is useful for some people. Other people enjoy adding Reiki or massage or Tai chi or some other sort of complementary alternative medical practice, but which makes them feel that they are doing something, and certainly is helping their general health, whether or not it turns out in the end to do anything that is cancer-specific.

I think it helps enormously to have cancer buddies. I always encourage people to consider a support group. If there are appropriate groups around, to consider talking to the woman you're sitting next to in the waiting room when you go in for your every 6-month, or however frequently it is, appointment, to perhaps continue participating in a cancer meeting, a conference of some kind, or a fundraiser. Some way to just to get to know other people who were living the same experience because we help each other more, I think, than anybody else can help us.

Greg Guthrie: Okay, great. So this kind of peer support is very important to helping cope with that?

Hester Hill Schnipper: Yes. I think it's very important. I mean, the downside, obviously, is the more people with cancer whom you know, the more likely it is that you're going to know some people who end up not doing well. So you have to get yourself to a place where the benefit of those friendships and the connections outweighs the possibilities that there may be scariness and loss in some of those relationships also.

Yeah, that's a really good point. So if we're coping with the fear of recurrence, sometimes is there something more needed than these coping methods? Is a treatment or intervention sometimes needed?

Hester Hill Schnipper: Right. Yes. And thank you for asking about that. My general simplistic rule about, "Should I be talking to somebody or would something else be helpful to me," is if you're wondering about it, it probably is a good idea to check it out. I think we all know ourselves better than anybody else knows us. And if we begin to be worried about ourselves or if we're not sleeping at night, if we can't concentrate on things, if we're not interested in the parts of life which usually please us, if we find that really our fear is paralyzing, even slightly paralyzing, we deserve to live better than that and it is important to get help. So how do you find help? There are clearly many wonderful therapists around who are great at what they do but really are not well informed about issues related to cancer. Places to start to look for somebody who is a competent therapist as well as somebody who is well-informed about cancer issues, certainly, talk to your doctor, talk to your treatment nurse, talk to your other cancer buddies. You can go on the website of AOSW, which is the Association of Oncology Social Work. And there is a public portion of that website where people can look up who might be nearby in their community who is sort of a psycho-oncology therapist. You can certainly call a nearby hospital or cancer center, ask to speak with an oncology social worker, and ask that person for referrals in the community.

Greg Guthrie: That's really great to give a sign for seeking help and then where to look for that. Are there other resources out there that can help people coping with their fear of recurrence?

Hester Hill Schnipper: I think, again, for most of us, information is helpful, and so you have to be careful about using the Internet and reading online. Certainly, ASCO's Cancer.Net is a wonderful website. I mean, Living Beyond Breast Cancer, NCI. I mean, there are many authentic and useful websites. I tell people, "Look for the .orgs or the .govs, and be a little less sure about the .coms, although some of them certainly are good too. Many of the cancer forums can be helpful in terms of sharing information, but they also can be terrifying and there's no way to be sure about the information that you're reading or hearing whether it's accurate or whether somebody is really crazy and just writing whatever he or she is writing. So I think going to the Internet in a prepared and thoughtful way, being careful about what you read, but being informed, staying current, understanding what's going on related to cancer world in general. And if there are specifics about your particular diagnosis, to be aware of what the possible survivorship issues may be, and are there new things coming around that you should know about?

Greg Guthrie: That's really great. I like this idea that a lot of the power comes from being informed and also from building some sort of support network that fits you. That seems like a good way to bolster yourself against this fear.

Hester Hill Schnipper: Absolutely, I think those 2 things with the addition of just the safe passage of time is what gets just about everybody safely to the other shore.

Greg Guthrie: Well, that's great, Hester. I think this information is going to be really helpful for our listeners, and I really appreciate you coming to share your insight and expertise here. Thanks very much.

Hester Hill Schnipper: Thanks very much for asking me [laughter]. Thank you.

Greg Guthrie: It's been great talking to you.

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