March 2019 Ask the Expert: Searching for Answers After Diagnosis
If you’ve recently been diagnosed with breast cancer, you may find yourself wondering “Why did this happen to me? What am I supposed to do now? How can I prepare for what’s coming?
It’s common to feel overwhelmed while you wait for treatment to start. Knowing where and how to get the information you need to cope with a breast cancer diagnosis can be difficult and hard to manage.
In March, Living Beyond Breast Cancer’s Ask the Expert featured LBBC staff member Lynn Folkman Auspitz, who was diagnosed with early-stage breast cancer in 2009, spoke to oncology social worker Gregory D. Garber, MSW, LCSW, director of Oncology Support Services at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia. They answered your questions, shared resources and gave you practical tips on how to stay grounded as you wait for treatment to start.
The questions and answers on this page are edited from a transcript of the video.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
Mr. Garber: Social workers play a variety of different roles and some of them are dependent on the size of the cancer center. Some smaller cancer centers do not have social workers. But in a large cancer center like where I work, social workers can provide patient navigation, helping patients figure out a brand new and often novel system of healthcare.
We can help people with things ranging from very concrete issues like insurance, accessing childcare and creating advanced directives to providing counseling, therapy, and community referrals. We do educational programing, we run support groups, we write, we present, we try to learn more about the best way to help patients navigate cancer. And it’s an evolving field. It looks different now than it did 20 years ago, and it probably will look different going forward.
Mr. Garber: At first, at initial diagnosis, most people are highly distressed, frightened, and kind of thrust into this world where they often do not have a lot of information. So that kind of void is one of the most distressing things. Waiting for a biopsy to come back, waiting for a scan, or a mammogram, or an MRI to come back, anticipating conversations with an oncologist, asking yourself what this will mean in terms of my life, in terms of work, or family, or parenting, or wherever one is in their stage of life – all of this is distressing, whether they’re younger and dealing with the issues of being younger, or older and managing those stage of life issues.
I think there’s a tremendous learning curve, and one of the first things that I think many people are craving is education, the information to fill that void. And good, accurate information is one of the best early relievers of anxiety. The absence of that is one of the things that is the most frightening.
Lynn: Obviously, everyone is different. I know for me I wanted to know, “What’s the next thing, the one next thing I have to do?” And that’s the way I could process, but then there are people that want everything at once.
Mr. Garber: Of course. Right.
Lynn: So I guess you really have to honor who you are as an individual and what information you need.
Mr. Garber: Right, people bring whoever they are to a cancer diagnosis. And so if there’s somebody who’s always wanted to know what’s going to happen a year down the road, that’s probably not going to change. And people who like to take it a step at a time, that’s also probably not going to change, and they’re all OK. All of those are reasonable ways to cope. You know, this is not the time to stop doing what may have worked for you historically and revamp the whole machine.
Mr. Garber: I think it’s an excellent question. I think this sense of urgency when one has a new diagnosis and there’s further diagnostic workup necessary is very frightening. The anticipation of what this might mean.
The thing that I say to people is that first of all, medical professionals in the oncology field do not do anything that will compromise outcomes at that point. So if they’re saying that it’s OK to wait a period of time to have an MRI, from a medical standpoint that’s OK. From an anxiety standpoint that may be a very challenging situation.
Again, I think information is a tremendous reliever of anxiety early on, and that is definitely a very simple question that can be asked of an oncology care provider. “I am worried that this is going to potentially create an opportunity for progression,” – or whatever the concern is – “Relieve me. Tell me why or why not. Why is it OK to wait?”
Lynn: I know when you’re diagnosed it feels like an emergency, and yet there are so many steps that you have to go through. Personally, it felt like an emergency; like, I’ve got to do something right away. It can be really frustrating.
Mr. Garber: Yes. I think a synonym for emergency is “crisis.” A cancer diagnosis presents a crisis. It’s an emotional challenge, it’s a physical challenge, it’s a management challenge, it’s learning things quickly and asking questions and hearing answers. People are seeing the medical systems where you make appointments and you wait, and those are just realities.
There’s also a little bit of a downside to things happening super quickly. It creates a tremendous amount of information to absorb. And so allowing one to adjust and ask questions and get educated and get up to speed [can be challenging], there’s an argument to be made for that as well.
Lynn: I know sometimes people do feel pushed into decisions and to make those decisions really quickly as well.
Mr. Garber: That’s a terrific question. I think whether it’s Oncotype or some other sophisticated testing that is now happening more in the cancer world, and will be happening more in the cancer world, care providers – physicians and nurses – have very different ways of communicating it.
I would encourage patients to keep asking the question until it makes sense to them. It is helping the provider do a better job and it is creating a better opportunity for relief of anxiety, because accurate, understandable information that is digestible is going to go a lot further than going home and wondering, “Oh, you know, I really didn’t get that.”
I think the other thing, that is almost universally good, is to bring somebody with you to an appointment and to write things down and have questions.
There’s some data that says that people hear about 20 percent of what an oncologist says during a visit. And if you bring somebody with you it provides somebody else to ask questions, another set of ears to hear, somebody to ask for clarification. So I think that that’s another strategy throughout cancer care.
Lynn: I was actually going to say that as well. I know even in between appointments things come up, or you forgot to ask something. I had my sister. She would write things down in a book for me. Because then when I would get to the appointment and I would forget, she would say, “Remember, you had so and so.” So it’s helpful to have that person with you, or if you don’t, to bring a notebook and write those things down.
Mr. Garber: I think it’s also helpful to prioritize questions because visits can be short, and so if you think about your top three questions that you want to get answered and start with those, that might be a more satisfying experience than not ordering them.
Mr. Garber: Anything that you are taking, be it a supplement, or a vitamin, or something else that is not prescribed by an oncologist, should always be discussed with an oncologist. There are all kinds of interactions possible. There are tremendous variances in the quality of a number of supplements. We know more about some than others. So first, talk to your oncologist. Often cancer centers will have people who have some expertise in this, whether it’s an integrative medicine department, or a nutritionist, or a dietician who can help sort this out and determine what is safe and what is not. Supplements can also add a tremendous amount of cost, and not a whole lot of benefit, if they’re not guided by the available evidence and data that exists to support them.
Lynn: When I was in treatment, I was seeing an acupuncturist, and they prescribed Chinese herbs. And I brought that up to my doctor and they were like, “No. We don’t know how those things interact. You want to do acupuncture that’s great. Not the other things.”
Mr. Garber: Right. I think oncology has moved a bit over the years, and this is a just a fact that supplements and other integrative treatments are here to stay. Many of them can be helpful, but it always needs to be a discussion. Better oncologists will entertain that discussion and provide education to support a decision, yes or no, or this is OK and that’s not OK, because we do have some evidence. It shouldn’t be a rote yes or no answer now.
Mr. Garber: I’m a big proponent of not losing touch of what has worked for one in the past. Somebody even contemplating self-care must have thought about how they’ve cared for themselves over time, and this is a time to do the things that have felt good in terms of self-care.
Whatever it is, it’s probably good to go back to it. Reinventing a wheel because it’s a novel situation isn’t always available, or convenient, or comfortable. I think that acknowledgement that self-care is important and making some time for that, and making sure that you’re sleeping, eating, maintaining routines in life, doing things that felt good, be it yoga, therapy, walking, or speaking to family or friends-- all of those things are good things to do.
Lynn: Yes, and I think because so much of the time after you’re diagnosed you’re just going doctor to doctor. “OK, what’s next, what’s next?” And it is easy sometimes to lose sight of those things and forget who you are because you’re so busy doing those other things that you need to do.
Mr. Garber: Of course. People have experiences with things that have worked over the years. In that crisis of a diagnosis and treatment, you can lose sight of that. These are effective, time-tested things that many people have found and it’s easy to get away from that and not stop and take a breath and think about, “Well, what have I done when I have felt anxious in the past, or when I have felt overwhelmed or overwrought, or exhausted, or frightened?”
Lynn: Yes. Be yourself.
Mr. Garber: Of course. I think it points back to having conversations with your care team, and asking questions until you feel like you have a satisfactory answer to that. There is a huge temptation to go onto the internet and start looking for stories and information. And while there are tremendous sources of very valid evidence-based information, you’re also going to find a lot of stories that are not typical. A lot of patient experiences that are not typical and can create more anxiety.
These are questions that are best answered by an oncologist because questions like this do have an answer. These are things that oncologists and other providers contemplate, and they recognize that there are quality of life implications, and medical implications, and fertility implications, and sexuality implications. So often you’ll find that there is some anxiety in having that conversation.
Mr. Garber: This is a question that comes up a lot. I think that telling people is a critical part of making an adjustment to cancer because it provides avenues for support, and it brings other people in with you. Even if you’re concerned about their reactions, those are just reactions. Once people have their initial reactions that will settle down, and then you will often find support in that relationship.
I like to think about circles of closeness. The people who were the closest are often the people that you would want to give the most information to, and who provide the most support coming back. Then there are the circles that go out from there. It’s exhausting to have the same conversations 15 times a day and answer every single phone call, so having others in your life assigned to disseminate some of that information can be helpful as well.
Finding some part of your life to have some normalcy, where you’re not having this conversation all day long, is really critical. That is an essential piece of self-care, when I think about self-care; the regulation of conversation and information, and thinking about who the people that you get the most from are, and starting there.
Lynn: That’s so important because sometimes I found myself taking care of others – you know, there were some relationships where it was really hard to talk about.
Mr. Garber: So there are better ways and less-better ways. There is a fair amount of evidence and research on how we talk to children and others now. This is another great role for social work. Find a social worker, or there are a number of good sites online as well, for information on how to talk to kids, how to talk to family, and how to share this news.
Conventional wisdom with children is that you tell them honestly using language that is appropriate for where they are developmentally. Then you check in with them periodically and you see if they have questions, and you don’t push too hard. You find moments where they’re available and receptive. Maybe it’s before bed, maybe it’s in a car ride.
With younger kids one of the things that you always want to say is there’s nothing that you did that caused your parent’s cancer. There’s nothing that you did. Children up to a certain age have a little bit of magical thinking, and if they were bad the week before and then a parent gets a cancer diagnosis the next week, a connection can be made for them that really is not there. We know that children do not cause breast cancer.
I think it’s important to avail yourself of resources, and there’s a lot of good stuff to read out there that are great sources of information for talking to kids and other family members. People want to protect the person they’re telling about their diagnosis, like, “I’m worried about how my parents are going to react because I’m their child and their job, historically, has been to take care of me.” I think that it’s one of the most common questions that we deal with as social workers.
Lynn: A lot of people are juggling work. I know I had concerns because I was working full-time and didn’t know how to maneuver within that.
Mr. Garber: Obviously there are a variety of different employers and positions. One of the first things that people do need to do is to talk to their employers and learn about any available benefits, as well as the Family and Medical Leave Act of 1993, and other things that can provide some support both financially and from a work perspective as they go forward.
One of the instincts that a number of people have is to just stop working, and that may not be the right thing to do. Work really does serve a purpose in terms of structuring time, and feeling competent and feeling adequate, and it’s often familiar. I think it is unreasonable to impulsively make a decision about all or none.
Lynn: Right. I know working definitely gave me a sense of normalcy when things felt really out of control, and there were times where I really couldn’t work because of the treatment. But it depends also on whether you have supportive colleagues, sort of your extended family of support, if you will.
Mr. Garber: Yes. Historically, and I’ve been doing this a while, most employers are very understanding. I think that is important. Something that’s a big component of many people’s lives is to have that conversation and enlist the support that is there.
Mr. Garber: Second opinions and third opinions are appropriate. This is a brand new thing, and you are kind of charged with saving your own life. An oncologist should never reject a patient saying to them, “Listen, I’d like to hear from somebody else about this. Is there somebody that you think I can talk to,” or “I know so and so, I’m going to talk to them.”
Most oncologists will welcome that. There is a lot of good evidence on how we treat breast cancer these days, and often getting a second opinion and having some reassurance is another powerful reliever of anxiety. So, yes, absolutely. I think when it becomes a problem is when you get the third, fourth, fifth, sixth opinion and it can potentially delay treatment.
Mr. Garber: Sleep is essential. Sleep can be difficult with a cancer diagnosis. We know that sleep disturbances are often common in the early stages of this, even if someone hasn’t had sleep issues before. Now you’re just quiet, you’re alone with your thoughts and your feelings. I mean, it makes sense. You’re waking up in the middle of the night.
I think there are a number of things one can do: If you meditated in the past, if you’ve done relaxation exercises. I think one of the biggest things these days is screen time. Try, not looking at your phone an hour and a half before bedtime. We know screens are stimulating in a way that is not conducive to sleep.
Think about good sleep hygiene stuff: you can Google sleep hygiene. There are lots of sites about this, but limiting caffeine intake, having a bedtime ritual, doing something relaxing. There are a number of apps out there that can walk you through meditation, and relaxation exercises. All of these things are helpful, and there is also medication.
Anti-anxiety medications in small amounts can be used at times like this, if that is the difference between sleeping and not sleeping. I’m not a physician. We’ve established that. Persevering until you find what works for you as an individual is important.
Lynn: I think so much about what you’re saying is right: who were you before this diagnosis, what worked before. Try those things. Then maybe there are some new strategies if you’re still having difficulty. I know I had a ritual. Walnuts have melatonin in them, and then I’d have Sleepy Time tea, but I did end up having to go on medication. And I was a little anxious about that, but it was what I needed at that point in time.
Mr. Garber: Right, now is not the time to be judgmental about any of those things. Sleep is much more important than worrying about taking a little bit of sleep medication if that is going to enable you to have better days. No one can function without sleep, and unless we’re having restorative sleep we’re going to have spillover anxiety even more so during the day.
That’s a conversation to have with your oncologist. And maybe they’ll say something differently or have another strategy, or another thought.
Mr. Garber: When genetic testing is done one should always have access to a genetic counselor who can help decipher and interpret those results. If there’s not one in the practice, finding a genetic counselor is really important. There are some organizations out there that can connect people with information and resources if they’re not readily available.
But oncologists treating breast cancer should be up to date on genetic testing and what it means with regard to guiding treatment decisions and be able to provide accurate and honest information and guidance. That’s an essential piece of getting care.