Navigating Breast Cancer
This section of the blog is for sharing experiences of giving hope and support to women and men facing breast cancer. The names of the hospitals, the medical staff and the patients have been changed to protect the privacy of all concerned.
If you are a hospital navigator for breast cancer patients, or have been one, if you are a health care professional, or a friend or a family member who has helped a loved one navigate breast cancer please consider sharing a navigation story with us in this section. Please share your experience by sending it to info@noboobsaboutit.org
A Health Care Professional’s Perspective…Diane Hopkins
A 2007 report by the Institute of Medicine (IOM) concluded that psychosocial issues created or exacerbated by cancer are “palpable, important and potentially crippling,” but can be effectively addressed by services and interventions. The report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,” also acknowledged that appropriate psychosocial care is the “exception rather than the rule in cancer care today.” A study by the Oncology Nursing Society bore this out.
From time to time, I hope to offer you some concrete tools and evidence based techniques that have been known to lessen the significant physical, emotional, and spiritual distress a cancer diagnosis brings.
Over the last 30 years I have witnessed so many people successfully manage and transcend this life-altering diagnosis. It is with this experience and in the capacity of counselor that I will share with you some of the self-care strategies that have worked over and over again. Please note that it is not appropriate nor prudent for me to answer specific questions on this blog, however, if themes surface repeatedly it may be possible for me to address those themes.
For starters, research has shown that the common denominator for successful coping with a cancer diagnosis is the ability to change. Can you think of a few changes to help yourself manage more effectively? It may help to organize your self-care interventions into four components.
1. What can I do to counter the real stress physiology that I am experiencing?
2. What can I change nutritionally?
3. What physical activity am I capable of?
4. How can I change some of my thoughts that do not serve me well?
I will address each of these components in the future
Navigation Stories…Jean Campbell
For three and a half years I had the opportunity to be part of the American Cancer Society’s NYC Patient Navigator Program. The purpose of the program was to bring comfort to men and women receiving cancer treatment in New York City hospitals and to refer them to the free support services of the American Cancer Society.
In the first year of the program, I was the only navigator. I met with cancer patients in three public hospitals and one free-standing cancer center. Most of the patients were women in treatment for breast cancer. As a survivor, I could relate to what they were going through, I understood their fears. When language was a barrier, we spoke (real time) using a translation telephone. It didn’t matter my color or ethnicity. What mattered…I survived …I looked well…I was able to work. I could give the gift of hope just by being a survivor.
The program grew; we added staff and volunteers. By the time I left the program we were navigating in 11 public hospitals and three private hospitals. Of the seven staff, six were survivors. Seventy-four volunteers out of 75 were survivors. Staff and volunteers reflected the ethnicity of the populations served at each hospital. Navigators did not follow patients through their treatment but after our initial meeting, during which we linked patients to services, we continued to visit with them whenever they came to the hospital for treatment.
NYC public hospitals are amazing places . My experience was limited to cancer services where I observed a steady stream of patients passing through the surgical, oncology and radiation services every day. They filled the large waiting areas, sometimes spilling over into the corridors. Passing through these areas, hearing all the different languages spoken, was like fast-forwarding through several countries. While Spanish was the dominant language spoken, using a telephone interpreter service allowed staff to speak with patients from Asia, the Middle East and Eastern Europe. I was always impressed with the quality of care in each hospital. Despite the numbers, hospital staff treated each patient with kindness.
Unfortunately, many of the women we navigators met with had advanced breast cancers as most did not seek treatment until their tumors were large or they were experiencing pain. Why did they wait so long? For many, especially immigrants from countries where health care is a luxury and not a right, they do not know about preventive medicine and do not come for treatment until they are experiencing pain. Some of the women shared that they were unaware of mammography screening or thought they could not get one free, or had heard that mammography was painful and were afraid to have one. Others gave no health insurance, undocumented immigration status, inability to get off from work to see a doctor and language barriers as reasons why they postponed seeking treatment. Whatever their reasons, most said that fear played a large role in delaying coming for treatment.
The women in every breast service and treatment area always had questions about how and why they got breast cancer. Many women believed it to be a punishment from God. Most were concerned and sad about the changes in their personal appearance. Most of the women shared their fears of losing the affection of a spouse or significant other. Others spoke of cultural stigmas they would face if they share their condition with friends and family.
A. appears in the doorway of the Breast Clinic with her six-year old twins, J. and S. Each child is clutching one of her hands and trying to comfort her as the tears stream down her face. “The doctor just told me I have huge tumor in my breast,” she says. “It is 10 centimeters. How big is that in inches? Before I can respond she continues, “I am so stupid. I waited too long. I was so afraid. Now who will raise my kids”? We settle the children down with lolly pops and we talk. A is 40, a divorced single parent of four children, two teens and the twins. She lives in an apartment in her mother’s private house and supports her family as a waitress in a restaurant in her neighborhood. “I am so afraid of chemo,” she says. “I have heard so many horror stories. If it were not for my kids, I would not have any treatment at all.”
During the 45 minutes that we talk, the tears continue to stream down her face. She believes that her cancer is a punishment from God and that even with treatment, she will die. I am relieved to hear that she has a referral for counseling.
I enrolled her in the ACS Reach to Recovery and assured her that a survivor, close in age to her, with young children will be her telephone support. I made a referral to the ACS Look Good /Feel Better Program and to the ACS wig clinic. I also referred her to a meals delivery program and for literature that could help her speak with her children about her cancer and treatment. She made an appointment with Social Services in the hospital to get help with home support and services for her children. We said good-bye with a hug.
After completing surgery, radiation and chemotherapy, A. was put on medication for her metastatic cancer. I didn’t see her again after she finished hospital-based treatment.
Dr. S. came to me in the breast clinic and asked me to meet with a patient who needed a mastectomy. Her breast cancer, although small, was in such a position that a lumpectomy was not feasible. She said she could not convince the woman to have surgery despite meeting with her on three separate occasions. The woman would not give a reason for not having surgery; she would just sit and cry. I told doctor that I would meet with her patient , but didn’t see how I could make her listen to reason if she, the doctor, couldn’t get through to her.
L. was from a small country in the Middle East. She moved to New York to be with her son and his family. Her daughter-in-law brought her to the breast clinic where a comprehensive breast exam, a mammography and a biopsy confirmed that she had a tumor.
L came in the room to speak with me, holding her head down. She greeted me with, “Doctor I don’t want surgery.” When I answered, “ I am not a doctor, I am a breast cancer survivor”, her head shot up and she said, “You had breast cancer and you didn’t die”? I responded, “No, as you can see, I didn’t die.” She grabbed me and hugged me saying,” You mean I don’t have to die”?
We sat down and had a long talk. In her country there was no mammography. Women got medical care when pregnant or in pain. All of the women she knew in her home country who got breast cancer died from it. She believed the myth that if you had surgery the cancer would spread all over your body. I assured her that her cancer was small and the surgery would remove it. She agreed to schedule a surgical date for her mastectomy saying, “ In my culture breasts are feeding units not sex symbols. My children are raised, there is no one to feed. Take the breast, I don’t need it anymore.”
L had her mastectomy. Her cancer had not spread beyond the breast. She didn’t need any additional treatment. These days she speaks to women she knows, educating them about early intervention for breast cancer. The last time I saw her, I thanked her for helping me realize how much a survivor can give someone facing breast cancer just by sharing that she or he is a survivor.
I meet G in the Breast Clinic of one of the public hospital. He greets me with, ” How did I get a woman’s disease? I am embarrassed to come to a woman’s clinic.” We talk about the fact that men get breast cancer, too. “I am from Africa,” he says. “I brought my wife and 10 children to this country, and I must support them, I cannot be out of work. If treatment will make me too sick to work, how can I take treatment”? I share that if he doesn’t take treatment he will eventually be too sick to work. We talk about what organizations have free services that are available to help him and his family while he is in treatment. I make referrals to for him for financial aid for transportation to and from treatment, a meals program and literature for his wife and children to help them understand what he will be going through and how they can help.
At G’s request, I enroll him in the American Cancer Society Reach to Recovery Program. He will be linked to a survivor that can be a support to him during his treatment. “Can I have a man call me? It would be nice to talk to a man,” he says. I assure him a man will call him.
While most men seen did not have the same body image concerns as women with breast cancer, they were embarrassed to have what they considered a woman’s disease. This was especially true for men whose cultures value male machismo.
G. Did well in treatment. The last time I saw him, his doctor had cleared him to return to work.
M. is being set up for her first chemo treatment. I ask if I can sit and talk with her. She nods and shares that her tumor needs to be shrunk prior to surgery. She asks about chemo and radiation and surgery. She discovered her tumor when she was painting her apt and felt something when she reached to paint.
M. is 39 years old a single mom with 4 children ranging in age from 5 to 15. She shared that her culture frowns on a woman touching herself, so she did not do self breast exams. No women in her family ever had breast cancer. None of them have had a mammogram. The only M. saw a doctor was when she was pregnant .
She is convinced she will be well enough to care for her children without help and keep working at her part-time job during treatment. I suggest that she take a few referrals for services that can help her through this time. She refuses. I let her know I will be around the following week and see if she needs anything.
One week later I visit her in chemo. A scarf covers head, where long, thick, black hair used to be. She asks me to tell me about what services are available as she is too tired and sick to cook or clean or to take care of her children. She needs a wig.
I made referrals to American Cancer Society programs and to community organizations such as a meals program for her and her children and suggest she meet with her hospital social worker to see if she can get homemaker assistance and counseling for her and her children.
M. and I visited often when she came in for treatment. The services she received enabled her to keep her family intact. During our last visit, M told me she had returned to her part time job.
Navigation Story….Sue Chang
I met AG in a waiting area outside of a chemo room in one of the New York City hospitals. She held on to her heavy winter down coat as it was a life jacket. In her late 30s, her young face was as cold as the frost on a window pane.
As a survivor and a member of the ACS Patient Navigator Program. I worked with Jean Campbell. I visited different hospitals and spoke with cancer patients who were newly diagnosed. The program was designed to reach outwith helping hands to people who were going through the most frightening and difficult time of their lives. Being survivors, patient navigators not only can comfort, but also bring hope to patients.
I approached AG with a warm smile and introduced myself. She responded with a shaking head and tightened lips. I smiled, wished her the best and walked away. That was our first encounter. As days went by, I said hello to her every time I saw her, and went on to talk to other patients.
Because of the increasing number of cancer patients, the patient navigators were always in demand. Jean and I were constantly recruiting new patient navigators. We decided to offer free English lessons as a training program to volunteers who had English as a second language. I went to American Cancer Society Asian Initiatives to present our program and recruit volunteer patient navigators. That’s when I saw AG again. It was 18 months since the last time I saw her at the hospital. She smiled shyly and signed up to be a volunteer patient navigator. From then on, she came to the training and became a cancer patient navigator. She participated in all the events including support groups and the loving-hands-loom-knitting group and made hats for chemo patients.
I asked her about her change of mind. She said when she first learned about her breast cancer, she was angry, frightened and also felt ashamed. The sense of doing something wrong to deserve the illness brought her shame. Yet, the feeling of “why me” made her bitter. She cried every day. She didn’t want to see or talk to anybody, even her husband and other family members. She had difficulty understanding English. Although she could have asked for translation, it was not convenient and didn’t feel the same as speaking the language herself. The hospital visits brought her such anxiety because of the language barrier. However, during her chemo treatments, she saw me talking to other patients. She saw how other patients got helped emotionally and became volunteers to help others. It touched her deeply and she made the decision to join the team as a volunteer patient navigator.
Since then, she has been a cancer patient navigator, making friends with other survivors and participating in all kind of activities. She is very grateful that the program has helped her to regain her confidence and has given her the opportunity to start a new life in which she can contribute and share her experience of fighting breast cancer.
A Friend’s Story …Joanne Clementoni
My first reaction when my dearest friend Jean told me she had breast cancer was shock and disbelief. After I caught my breath, I immediately went into what I call my “saving mode of action.” I realized that Jean needed to talk about her cancer, how and when it was diagnosed, and what she had learned from her research on what to do next.
I think listening is the very best first step in helping a friend. I felt Jean’s need to talk through her feelings and her decisions about what she was going to do. I remember asking Jean how and when I could help. I know Jean well enough to know that, like me, she needs to gain and remain in control of her situation. I felt the best way to be there for Jean was to let her decide when, how and how often she needed me. I knew I would make myself available for Jean whatever way she needed me.
During her treatment, I called daily. If she felt like talking, I listened. If she didn’t, we would end our call with me saying, “Call you tomorrow.” Jean would always tell me how glad she was I called. There are certain things you can only discuss with a friend, especially another female, that you would not feel comfortable discussing with family.
My advice for anyone who wants to be helpful is to listen and allow the other person to say what they need to say.
At first I didn’t think I was doing enough for Jean, but as time passed Jean would often tell me how helpful I was. That made me feel good. That is typical of my friend Jean, making me feel helpful while she is dealing with cancer.
From the first day I knew about Jean’s cancer, I began praying for Jean and continue to do so.
