Barbara Perry is a licensed Clinical Oncology Social Worker educated at the University of Michigan. As a social worker, she acts as a patient advocate and provides one on one therapy to not only the patient but their families as well. She coordinates psychological services including prevention, diagnosis, survivorship, terminal care and bereavement counseling. In her in depth interview, she stresses the importance of communication and seeking support throughout the breast cancer journey. She discusses specifically how to talk to your children about breast cancer, how to approach the workplace and offers helpful tips on how to deal with side effects.
I'm Barbara Ann Perry. I've been in oncology for over 20 years and I graduated from the University of Michigan, and I did a residency internship at the University of Michigan Hospital's cancer center. I see breast cancer patients specifically and I provide emotional and psychological support. I do one-on-one therapy. I facilitate the breast cancer support groups. I help them with resources. I do everything from soup to nuts basically.
Recently the College of Surgeons has determined that they will now be doing distress screening on all cancer patients. It's a form, actually a short form, and it has a thermometer on it from zero to 10, and the patient determines themselves where they are, where zero is no distress and 10 is a lot of distress, and they circle where they are, where they have been today and the last week, and then there's sections where it's practical problems, physical problems, emotional problems, and they check off if any of those things are bothering them or causing them anxiety or distress. If it's high, I can refer them out. I can do crisis intervention obviously. And then if it's really high, I can refer them out. I can do short-term therapy and then refer them out to a psychologist. Sometimes patients have a history of depression or they're already seeing a psychiatrist or psychologist, we refer them back. If they're having pain, I refer them to a symptom management nurse. I can refer them to our complimentary therapy, for meditation, relaxation. I can refer them to our dietician.
Effective communication is important and it needs to start immediately, as soon as you're comfortable sharing the diagnosis. Some patients need to sit with the diagnosis for a day or so and that's okay. Some people do; they pick up the phone and they call everyone they know. I've been diagnosed with breast cancer I want the whole world to know. Other people want to sit on it and keep it to themselves. Some people have a whole network of friends, okay, that's great. Some don't. So you tell your spouse. Let's say you have children in the home. Those kids already know something's going on; they've heard the whispers; they can sense it; they can feel it. You need to sit down and tell your children what's going on. So, how do you do that?
You sit down and you talk to them, preferably on a weekend so you can spend some time with them. Kids need to know that you're going to be there; that you love them; that's the primary thing that they want to hear. As long as you talk openly, they'll talk openly back to you. Use the word cancer; it's okay. They've heard that word. They may test the boundaries and say, oh, that means I don't have to do things. They need boundaries. They need to know that life is going to continue. They're still going to go to school, and if you know what's going on, tell them. Keep them in the loop, let them know I'm going to have chemotherapy and chemotherapy is a drug that's going to kill the cancer cells. I may lose my hair. I may get tired. I may not feel well, so you may see mom slow down a bit. And please know that how your family, how you and your husband or significant other and your family members cope, that's how they're going to cope with this. However, it's going to be exacerbated, so, in other words, if you have a child that's very quiet and shy, they may become more quiet and shy. So you can look for those cues.
Boundaries are extremely important because not everyone is going to agree with your decisions. And that's extremely important with caregivers, too, because caregivers, especially men, they want to fix everything; god love 'em; they see a problem; they fix it. They want to take the cancer away, fix it and move on; fix it and move on. They can't do that. Parents, they want to fix their children. They want to make them whole again. That's their job. That's their responsibility in life is to take care of their children and make them okay and make everything okay for them. They can't do that.
So a patient sometimes has to set boundaries. They have to say, honey, you can't fix this; this my decision; I need you to respect it; you may not agree with it, but you need to respect it. Mom, dad, I love you, but this is my decision. And they need to be able to set boundaries and tell them, no, you can't come over for the weekend, mom; I want to spend it alone with my family, thank you, maybe next weekend.
Some patients choose to work. Some patients choose not to work. It's a very personal decision. Some women tough it out. They work through chemo; they work through radiation; and then after they're all done, all of a sudden they crash and burn, and they come to me and say, Barb, I can't do this, I'm a wreck. I need time off now am I crazy? Is something wrong with me?. No, you're not crazy. You just plowed through and didn't think about it. Your mind and body work together and you were so busy fighting this that now all of a sudden, bam, you're crashing and burning. And now you need time off. Most patients share their diagnosis, because once they share it, they come up and say “oh I was diagnosed 5 years ago when I worked at so-and-so place”. And they have something. How much do you want to share? It’s a very personal choice, because if you come in and you have hair one day, and you lost it overnight (and sometimes that can happen) and if you didn’t tell your diagnosis boy you tell them now.
Breast cancer does bring a whole set of issues. Decisions are based on their own lifestyle and what they feel comfortable with and based on what their physicians recommend. So some women will say I want the cancer out. I want it out now. I want both breasts out. A lot of it may have to do with family history. A lot of it may do with genetic testing. So whether or not you have a lumpectomy, a mastectomy, double mastectomy, a prophylactic mastectomy, is a very personal choice. So if a woman is facing surgery, I encourage them to find out all they can about the surgery. Ask questions. If necessary, get a second opinion. Take someone with you to the surgical review. When you prepare for surgery, they'll let you know if you're going to be overnight; if you're going to have a hospital stay, how long it is.
And when you're being discharged, ask for a care coordinator and sit down and talk with her. If you're going to have drains, ask if you can have a nurse come out to the home to help you with those drains, to help you with medications, since you're not alone; so they can help you with that so they show your caregiver how to care for you; how to help you in the home. Your insurance will pay for that. They're not going to come out every day; they're not going to stay long; it's not going to be for a long period of time but they can come out for a short period of time to help you.
Chemo does not have to mean misery. If your medications aren't working, please tell us. We want this to be as easy on you as possible. We want you to be awake, aware and functional through chemo. The same with radiation. If you're having problems, let us know. When you lose your hair, make sure you wear something on your head when you go out in the sun so you don't get sunburned. You can wear wigs, you can wear turbans, you can wear scarves, you can wear hairpieces, to keep the warmth in the winter and the sun off in the summer. It's very important to keep your head covered.
Chemo brain and chemo fog. That comes about when you have chemotherapy, and what that does is you just can't quite get the words out. You have word-finding difficulty. The good news is that passes; it will come back and bring you more function again. So how do you cope with that? Well, you utilize little tricks of the trade we call it. Use sticky notes. Leave yourself voicemail messages. Give yourself a break. Don't try and do everything yourself. Chemo will often cause fatigue. Listen to your body. If you're tired, rest. If you're hungry, eat. If you have side effects from chemo, again take your medications as your doctor prescribes them. We do not want you to tough this out.
Anxiety and depression is not uncommon when you're diagnosed with cancer. However, it's not just the anxiety and depression, it's the degree of anxiety and depression. For a patient to tell me, you know, Barb, boy, I didn't get out of bed today. I was so depressed and so anxious. I got up this morning; I had an early-morning radiation therapy appointment but I went home and got back into bed and lay there all day and watched TV. I said, okay, and what did you do the next day? “Oh, I got up and took the kids to school and did this and did that”. Okay, you're allowed to get up and go to bed, and have a day in bed; that's okay, that's okay. Now, if you're in bed four days in a row, we have a problem. If you're totally exhausted all the time; if you're crying; it's the degree of pervasiveness of the signs and symptoms of depression; that's severe depression. But anxiety over something, anxiety over going to chemo, anxiety that you're going to have side effects, that's not uncommon. We can deal with that. We can talk about that.
Sexuality and intimacy are very important. However, sex is not intimacy, and intimacy is not sex, so you can have sex without intimacy. You can be intimate without sex. That's very important to remember. The other thing to remember is that when a woman is diagnosed with cancer, and she's going through chemotherapy radiation, her libido may go right out the window. So, there's ways to be intimate without sex. She may be experiencing dry vagina. She may be experiencing pain. And communication, again, is the key to all of this. So tenderness, kindness, patience that will help that come back. Intimacy will come back. Physical intimacy will come back. The sex will come back. The libido will come back.
For individuals that don't or a lot of support, that's where the groups come in. That's where you adopt people. You have extended friends that are your family. In terms of groups it's important that you find a group that works for you, whether it be online or in person. Also, there's breast cancer mentors out there. American Cancer Society has groups. The cancer support community has excellent breast groups. Reaching out to patients is an excellent idea in support groups. However, please don't compare. You can have the same diagnosis, the same treatment, the same chemo, the same radiation, the same diagnosis, but you're going to respond differently. So if you have the same diagnosis, the same treatment, the same surgery, the same chemo, the same radiation, and they're feeling great and you're still struggling with chemo brain, you're more fatigued than they are, they're back to work, they've moved on with life, and you feel like you've failed because you don't feel as well. It's okay because you responded differently. Your body is different than theirs is, so please there's no great way to go through this. There is no perfect way, and everybody is differently.
We no longer say you're in remission. We say there is no evidence of disease. And we use that because that's far more positive. We can do that, because now we can test to see if there's evidence of disease. So that's something concrete we can look for. Is there evidence of disease? No, there is not, okay, because what does in remission mean, really?
Breast cancer for the most part is very curable, and effective communication is so important. Utilize the resources that you have which is your social worker and your medical team and communicate, communicate, communicate. And remember that this is a journey, and it's a marathon; it's not a sprint; there is no perfect way to do it; and don't beat yourself up emotionally or psychologically or spiritually. Utilize every resource you can and don't be afraid to ask for help and allow yourself to accept that help and you know that we are here for you and we have a lot of resources for you.