A breast cancer diagnosis doesn’t affect just one life. It can flip the lives of family and friends upside down, so it’s important to guide not only the patient but also loved ones through this difficult time. The patient’s friends and family play a crucial role in recovery and beyond. It’s up to them to create a circle a care, which will provide a sense of optimism and comfort for the patient, and it’s up to health care providers to guide them through this process.

Creating a Breast Cancer Circle of Care: Steps to Share With Patient’s Friends and Family

Step 1: Designate a Care Leader

Have someone take the lead in organizing support. A friend or family member who is naturally organized can be the go-to person to delegate helpful tasks. Likewise, one person can offer to help communicate status updates to friends and family.

Step 2: Touch Base Regularly

Plan to stay in touch throughout recovery and beyond. Daily calls, weekly visits or regular emails will give the patient something to look forward to.

Step 3: Whip Up Some Recipes for Love

Food is fuel, and the patient will need the proper nutrients during this process. To help coordinate meal prep, you can use a service like Meal Train LLC, a free solution that simplifies the organization of giving and receiving meals. The site allows the giving party to take into account the recipient’s preferred meal times, food preferences and available days. This helps ensure that the recipient gets the meals they enjoy on the days that are most helpful.

Step 4: Treat This Diagnosis Separate From Others

Friends and family should refrain from telling stories about others with what they assume is a similar diagnosis. Every cancer diagnosis is different, and there are specifics that direct course of care. So often, newly diagnosed patients get overwhelmed with information and frightened by others’ stories. This diagnosis is unique for the patient in that it’s happening to them.

Step 5: Don’t Turn to Dr. Google

If you’re looking for more information on breast cancer and recovery, ask the oncology team for trusted resources. Some websites give inaccurate information and can steer you down a confusing road. HealthyWomen’s breast cancer center is a great place to start.

Living With Metastatic Breast Cancer

Metastatic breast cancer (also called stage IV or advanced breast cancer) is breast cancer that has spread beyond the breast to other organs in the body (most often the bones, lungs, liver or brain). In the U.S., it’s estimated that over 154,000 women have metastatic breast cancer .However, it’s not common (about 6 percent) to have metastatic breast cancer when you are first diagnosed (called de novo metastatic breast cancer).

Most often, metastatic breast cancer develops when the cancer returns at some point after the initial breast cancer diagnosis and treatment. This section discusses metastatic breast cancer treatment and care. You can also find information on support for you and your family. Such sites let people (or friends or family) build private or public communities where patient updates and schedules can be shared, says Broderick.

People can ask for and get the kind of help they really want and need. Survivor Anne Steele, 51, Hermosa Beach, California, who had chemo, a lumpectomy, and radiation, for example, liked having companions with her during chemo while Victoria Irwin, who spent her chemo time in solitary pursuits like reading, preferred to save friends’ graciousness for another time.

What can I do to help?

Whether your friend or family member is newly diagnosed or in the midst of treatment, she’s unlikely to be wowed by vague offers or having to do your thinking for you. She has enough on her mind; she has cancer. She may not want that tuna casserole or to hear about what treatment your Aunt Phyllis had either.

So how can you help? There is no one-size-fits-all answer. That’s why we turned to survivors for our list of support dos and don’ts. Our patient-generated advice is sorted into three stages Diagnosis, Surgery & Treatment, and Recovery identified by Maureen Broderick, a licensed clinical social worker who has worked with cancer patients and run cancer support groups. Here’s what you need to know.

Treatments For Metastatic Breast Cancer

What is metastatic breast cancer?

Metastatic breast cancer (also called stage IV or advanced breast cancer) is not a specific type of breast cancer, but rather the most advanced stage of breast cancer. Metastatic breast cancer is breast cancer that has spread beyond the breast to other organs in the body (most often the bones, lungs, liver or brain). Although metastatic breast cancer has spread to another part of the body, it’s considered and treated as breast cancer.

For example, breast cancer that has spread to the bones is still breast cancer (not bone cancer) and is treated with breast cancer drugs, rather than treatments for a cancer that began in the bones.It’s estimated that over 154,000 women in the U.S. have metastatic breast cancer .Some women have metastatic breast cancer when they are first diagnosed (called de novo metastatic breast cancer). However, this isn’t common in the U.S. (6 percent of diagnoses).

More commonly, metastatic breast cancer arises months or years after a person has completed treatment for early or locally advanced (stage I, II or III) breast cancer. This is sometimes called a distant recurrence.

The risk of metastasis after breast cancer treatment varies from person to person. It depends greatly on:

• The biology of the tumor
• The stage at the time original diagnosis
• The treatments for the original cancer (trying to prevent recurrence)

Treatment

As hard as it may be to hear, metastatic breast cancer cannot be cured. Unlike breast cancer that remains in the breast or nearby lymph nodes, you cannot get rid of all the cancer that has spread to other organs. However, this doesn’t mean metastatic breast cancer can’t be treated. Treatment of metastatic breast cancer focuses on length and quality of life.

Your treatment plan is guided by many factors, including:

• Characteristics of the cancer cells
• Where the cancer has spread
• Your symptoms
• Past breast cancer treatments

If the cancer is hormone receptor-positive, the first treatment is hormone therapy. If the cancer is HER2-positive, anti-HER2-drugs  such as trastuzumab (Herceptin) may be given. Chemotherapy and radiation therapy can be used to shrink or slow the growth of tumors or to ease symptoms of the cancer itself. However, these therapies have side effects that can affect quality of life.

Clinical Trials For People With Metastatic Breast Cancer

A clinical trial can offer you the chance to try new treatments and possibly benefit from them. Learning a new therapy is better than the standard treatment can also help others. Whether a new therapy or test becomes part of standard treatment for breast cancer depends largely on the results of clinical trials.

Some clinical trials compare a new treatment to the standard of care. So, not everyone in the trial gets the new treatment. However, even those who don’t get the new treatment will still get the standard treatment, just as they would if they didn’t join the trial. Talk with your oncologist about clinical trials. But remember, like all aspects of cancer care, the decision to join a clinical trial is a very personal one.

Managing Pain Related To Metastatic Breast Cancer

What is pain management?

Pain from treatment or the cancer itself can affect your quality of life. So, controlling pain is a crucial part of your care. The goal of pain management is to have the most pain control with the least amount of medication (to limit side effects). This allows you to get the most benefit from the treatments aimed at reducing your cancer. Let your health care provider(s) know about any pain or discomfort you have.

Pain

With metastatic breast cancer, pain can be related to treatment or the cancer itself. Pain is not the same for everyone. Even among people at the same stage of disease, pain can vary. Some people have more intense and more frequent pain than others. You should never feel you need to endure pain. Even when pain is mild, it can interfere with daily life and make other side effects, such as fatigue, seem worse.

Tell your health care provider as soon as you have pain

Let your health care provider(s) know about any pain or discomfort you have. Pain is usually easier to treat when you first have it. Waiting until the pain is severe before getting relief can make it harder to control and may require more medication. So, it’s important to talk with your provider about any pain you have.Your provider may prescribe medications or change your treatment plan to reduce painful side effects.

Health care providers and palliative care or pain specialists Every visit with your health care provider should include a discussion of pain. Your provider can change the type and dose of pain medication throughout your care in response to your needs. Your provider may suggest different types of pain control as your needs change. This ensures you are getting the most benefit from available therapies and are as comfortable as possible.

Quality Of Life- Metastatic Breast Cancer

Metastatic breast cancer (also called stage IV or advanced breast cancer) is breast cancer that’s spread beyond the breast to other organs in the body (most often the bones, lungs, liver or brain).As hard as it is to hear, metastatic breast cancer cannot be cured. This does not mean, however, that metastatic breast cancer cannot be treated. Treatment of metastatic breast cancer focuses on length and quality of life.

What is quality of life?

“Quality of life” describes your overall well-being, including:

• Mental and physical health
• Ability to perform daily roles
• Sexual function
• Pain, fatigue and other side effects of treatment or symptoms of the breast cancer

Non-health related issues (such as financial concerns) are also part of quality of life.Managing side effects and other issues that can worsen your quality of life is a main part of metastatic breast cancer care.

Quality of life issues

Although important for everyone with breast cancer, quality of life issues are especially important for people with metastatic breast cancer.You should never feel you have to endure pain or other side effects.

Talk with your health care provider about any issues affecting your quality of life.

• Bone care
• Depression
• Fatigue
• Fear of dying
• Loss of appetite and nausea
• Managing pain
• Managing other symptoms

Support For Family And Loved Ones

As with any major illness, breast cancer can have far-reaching effects beyond the person who is diagnosed. Spouses and partners, family members and other loved ones (often called co-survivors) may feel many of the same emotions as the person diagnosed: shock, sadness, fear, anger and denial.

Co-survivors can be strong sources of support throughout diagnosis, treatment and recovery. At the same time, loved ones (especially spouses, partners and children) may need social support themselves to help get through the experience.

Support for Spouses and Partners

Along with the many issues related to caring for a loved one with breast cancer come other difficult relationship issues of loss, need, control, sexuality and altered body image. Support both formal and informal – can help spouses and partners work through these issues

Hospice

What is hospice Breast Cancer?

Hospice is a philosophy of care that aims to give a sense of control to people at the end stage of a terminal illness, such as metastatic breast cancer. Hospice care provides support services to patients and their families. Because hospice programs personalize care, they can help preserve quality of life and allow a person to die as comfortably and with as much dignity as possible. Hospice care does not aim to shorten or prolong life, but rather to enhance the time remaining as much as possible.

What is the role of palliative care in hospice programs?

People in hospice programs and their families get comprehensive palliative care from the members of the hospice team. The goal of palliative care is to maximize quality of life. It focuses on symptom control, rather than the control of the cancer and treats physical, emotional, social and spiritual needs.

This extra layer of care can be given along with treatments for the breast cancer.

Palliative care specialists work with oncologists to relieve or prevent symptoms such as pain, fatigue, anxiety or depression in people with metastatic breast cancer. They can help people weigh the burdens and benefits of different treatments for symptoms as well as for medications or other therapies to treat the cancer. Palliative care specialists can also help with advanced care planning. They can help people identify their personal values and goals that will guide their care.

Palliative care is a standard part of metastatic breast cancer care and becomes the focus of care when active treatment ends. It can improve quality of life for patients and caregivers.

Where is hospice care given?

Hospice care is most often given at home, where the patient is usually the most comfortable. Sometimes, hospice care is given as in-patient care at a freestanding hospice house or at a hospital with hospice services. Some people prefer to get hospice care in these settings and sometimes, certain situations prevent someone from staying at home.

Does hospice care have a time limit?

Although a survival time period is set for enrollment, hospice care does not have a time limit. A person enrolled in a hospice program may live longer than 6 months and hospice care will continue.

Who covers the cost of hospice?

The cost of hospice care is covered by:

• Medicare
• Medicaid
• Health maintenance organizations (HMOs), such as Blue Cross/Blue Shield
• Most private insurance companies

Hospice programs cover the cost of the health care team as well as any medicines, therapies, counseling, equipment and supplies related to care. Talk to your insurance provider about the specifics of your coverage.

When should a person enroll in hospice?

Hospice care at any time is helpful, but enrolling earlier rather than later can be better for the patient and the family. The earlier the enrollment, the more time the hospice team has to get to know the patient and the family so they can give the best personal care possible.

Last End-of-life choices

Discussions on end-of-life care are very difficult.

As hard as it can be to talk to family members and health care providers about end-of-life issues, these discussions help ensure your wishes are carried out.With your guidance, hospice care can make the later stage of cancer care as comfortable as possible for you and your family.

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