Caring for Someone with Breast Cancer: What to Know

Whether you’re the primary caretaker of someone with breast cancer or a friend wanting to offer support, there are many ways to help the patient through their health journey. This article covers emotional, practical and other forms of support to make a difference in their journey. There are several tools and resources that can assist patients and caregivers throughout the process of breast cancer screening, diagnosis and treatment, which will also be discussed.

One of these resources is PocketHealth. With secure, easy access to breast imaging records, our services allow patients and their caregivers to better understand and take more control over their health. Often, patients can view these records before their follow-up appointment, giving them the opportunity to review the findings in advance and prepare any questions for their physician.

 

 

Understanding breast cancer

Breast cancer primarily affects patients assigned female at birth (AFAB), though it can also occur in patients assigned male at birth. Breast cancer develops when cells multiply and grow uncontrollably, often forming tumors or growths, and sometimes spreading to other organs or areas of the body. It can begin in different parts of the breast, such as the ducts, nipples or lobules, and may spread to nearby lymph nodes or tissues.

Breast cancer is often detected through mammograms, which are X-rays of the breast that help identify tumors, growths and irregularities. Many of these are part of preventative screening programs, which are commonly recommended for AFAB patients aged 40 to 74 every other year. For patients with breast lumps or other symptoms, a diagnostic mammogram or another imaging method may be used to assess for breast cancer.

 

Breast cancer diagnosis

The journey of a breast cancer diagnosis may look different for many patients. Some diagnoses may begin with the discovery of a breast lump or other symptom while others may start with an abnormal mammogram screening. Regardless of the method, it can be an emotional time for the patient, who must wait for results, undergo numerous tests and diagnostics and then process the news.

While it is undoubtedly a stressful time for patients, the diagnosis process is also hard for friends and family, who often experience their own emotional upheaval. In some ways, caring for someone with breast cancer may begin before the official diagnosis, as patients may require support while undergoing testing and dealing with the anxiety of waiting for results.

 

Breast cancer treatments

As a caregiver for someone with breast cancer, it can be helpful to understand the possible treatments they may be undergoing so you can better support their needs. Here are the most common treatments that may be recommended by their care team, which may vary depending on clinical factors such as the progression of the disease and the patient’s overall health. These treatments may also be used in combination with each other:

• Surgery: The surgical removal of the cancerous growth is a common treatment. Depending on how far the cancer has spread, this could involve removing just the tumor and surrounding tissue (a lumpectomy) or a partial or full mastectomy, which involves the removal of the affected breast. Some patients elect to have breast reconstruction following a mastectomy, but this is a personal decision to be made between the patient and their doctor.
• Immunotherapy: This treatment involves administering medication that helps the patient’s immune system better recognize and destroy cancer cells.
• Chemotherapy: The use of medications to target and kill cancer cells.
• Targeted therapy: Some types of breast cancer rely on specific proteins or hormones to grow and spread. Targeted therapy uses medications designed to attack these particular cells.
• Radiation therapy: This involves using high-energy rays, such as X-rays, to destroy cancer cells.

 

What to expect when helping someone with breast cancer

Breast cancer treatments can be physically and emotionally challenging for the patient. Side effects can be exhausting, uncomfortable and may alter daily routines, so it’s helpful to be aware of these in order to help the patient throughout their treatment.

If the patient is struggling with the effects of treatment, encourage them to bring it up with their doctor, who may be able to recommend adjustments or ways to manage them. Also, while they may feel overwhelming, most side effects go away after treatment ends or within the following weeks or months. Although it may be a difficult experience, remembering that it is usually temporary can provide hope and strength. Here are some possible reactions to common breast cancer treatments:

• Mood changes: These may result from medication side effects or the stress of living with breast cancer. Group support or a therapist with experience in cancer care may help with these mood changes. Additionally, medications such as anti-anxiety drugs or antidepressants are a common treatment.
• Nausea or fatigue: Many cancer treatments can cause nausea and fatigue. It may be helpful to have the patient ask their physician for recommended diet changes or medications.
• Brain fog: This can include memory loss, difficulty concentrating and confusion.
• Bowel changes: Such as diarrhea or constipation. Diet changes or medications may also help here. It may be a good idea to ask the doctor for suggestions.
• Skin irritations: Especially common with radiation therapy, these can include peeling skin, rashes and sunburn-like symptoms.
• Hair loss: Depending on the treatment, many patients experience temporary hair loss, which typically regrows once treatment ends.
• Decreased appetite: Many patients undergoing treatment experience reduced appetite, particularly if they are also dealing with nausea. The physician may have recommendations on medications or supplements to help with this.
• Immune system impairment: Some treatments, such as chemotherapy or radiation, may temporarily impair the patient’s immune system, leaving them more susceptible to infections and viruses.
  Post-operative symptoms: For patients who have had breast cancer surgery, physical pain, weakness or other symptoms may occur during the healing process. Their surgeon should provide pain relief for recovery, and they may also be given light range-of-motion exercises to maintain flexibility after surgery.

 

What to know about patient privacy rights

Both the U.S. and Canada have patient privacy protection laws, which means you won’t have access to their medical information unless you’re the legal guardian or have similar legal rights. Most clinics will allow access if the patient gives formal written permission, usually through a form provided by the clinic. If the patient is willing to grant you this permission, it can make caring for them more streamlined. However, it is the patient’s decision whether or not to allow this, as many may prefer privacy and independence.

One exception to this is when the caregiver has medical power of attorney for the patient. This is the legal authority to make medical decisions on the patient’s behalf if they are unable to do so themselves. In these cases, access to medical records and other such information is usually granted.

Regardless of whether medical access was granted through medical power of attorney or the patient gave permission themselves, there are useful benefits to the caregiver having access to these health records, including:

• Staying informed about diagnosis and treatment information
• Asking questions on the patient’s behalf
• Scheduling or rescheduling appointments for the patient
• Accessing or paying medical bills for the patient

How PocketHealth can help caregivers

For patients who use PocketHealth and want to allow their caregivers access and better understanding of their medical records, it can be a powerful tool for both parties. Accessing breast imaging reports and records offers the following benefits:

• Breast changes shown in mammograms and other imaging can be monitored.
• Records can be easily sent to the caregiver or medical team within minutes, which can reduce stress and avoid treatment delays.
• ReportReader provides easy-to-understand definitions for any underlined medical term within the patient’s report, making it easier for both the patient and caregiver to understand imaging records.
• Records can be printed with ease, so they can be brought to appointments if needed.
• Because imaging reports are often available before the patient’s follow-up appointment, both the patient and caregiver have the opportunity to review them in advance and prepare informed questions for the doctor. MyCare Navigator also helps generate personalized questions based on the patient’s report and identifies possible follow-up steps to discuss with the doctor.

 

How to help someone with breast cancer

There are many ways to care for someone with breast cancer. Whether you’re the primary caregiver or helping someone you don’t live with, many of the following tips are the same. However, it’s important to respect the patient’s rights and privacy if they wish to be selective about the kind of assistance they accept.

Practical help

You may have more success helping a breast cancer patient if you ask them if you can assist with something specific, rather than asking an open-ended question about what they may need. They might feel overwhelmed and fatigued, and asking them to come up with a list could be more than they have the energy for. Consider making your own list of tasks to offer and see if that’s more helpful. Some practical things that breast cancer patients may need:

• Meals and groceries
• Transportation to medical appointments
• Childcare or pet care
• Household cleaning and laundry
• Taking down notes for them during their medical appointments (if they’re comfortable with you being there)
• Yard care and other household maintenance
• Helping them to organize and pay their bills or manage other financial affairs.
• Helping their primary caregiver (if that’s not you) so that they can take care of their own needs and mental health
• Keeping a calendar for them, such as for prescription pick-up dates and doctor’s appointments, can be helpful. PocketHealth’s Appointment Reminders is a useful feature for this

Emotional support

Emotional support methods may vary depending on your relationship with the patient and how they’re processing their condition. Some patients may want to close themselves off and internalize their situation, while others may welcome the chance to be open and talk about their feelings. It’s usually best to follow the patient’s lead in terms of the emotional support they are comfortable with. Here are some general ideas:

• Simply spending time with them.
• Listening without offering judgment, unsolicited advice or trying to fix things unless asked
• Updating family and friends on the patient’s health, if the patient wishes. This can help take the burden off the patient.
• Try to talk about more than just the cancer, as it can provide a welcome distraction
• Avoid treating them differently now that they have cancer, as it can make patients feel like they’ve lost their previous identity.
• Find ways to share laughter with them, such as funny videos or stories.
• Gently motivate them, such as encouraging them to keep up with medications or post-surgical exercises.

Finding financial help and other assistance

Cancer can be financially draining for patients, especially when navigating health insurance and potential travel requirements. Here are some resources for this type of support:

• Local social workers: Some social workers specialize in cancer care support, helping patients access community-based resources, arrange transportation and even mediate family conflicts. The patient’s medical provider will likely have contact information for this type of specialist.
• Family medical leave: For those who qualify, both the U.S. and Canada have family medical leave policies that protect the patient or their caregiver’s workplace rights while undergoing treatment or caring for someone with a medical condition. Current employers should have information on how to initiate this paperwork.
• Pay-assistance programs: There are numerous pay-assistance programs and charities that patients can explore for help with medical bills or prescription costs.
• Patient lodging programs: For patients who must travel long distances for treatment and need accommodations, there are lodging programs that can reduce or eliminate the cost of hotels and similar services.

 

Support for the caretaker

Caregiver support is often overlooked, but it’s a crucial aspect of caring for someone with breast cancer. If you’re not the primary caregiver, offering support and time off to the main caregiver can be incredibly helpful in preventing burnout. Caring for someone with complex medical needs can be demanding and draining, and even just one night off each week can make a significant difference if you’re able to provide that kind of support.

If you are the primary caregiver, it’s important to find support for yourself. Here are a few things to consider:

• Ask family or friends for backup: Even occasional breaks from caregiving can be restorative. Having someone else take over for a little while on a regular basis can make a big difference.
• Utilize in-home programs: Some medical insurances or social services offer in-home nursing for things like bathing care or physical therapy. Some may even provide cleaning services. If these are available, it may be a good idea to take advantage of them, even if you could do it yourself. One less thing on your plate can be a huge help.
• Self-care: Don’t forget that your own needs are important too. Try to get enough sleep and physical activity and eat properly. Resting and staying healthy can make caregiving easier.
• Emotional self-care: Finding a way to care for your mental health is essential. This might mean seeing a therapist or taking time to meet up with friends who can listen to you or offer a fun distraction.
• Tell someone if you’re overwhelmed: If you’re feeling overwhelmed, letting a social worker, medical provider or family member know can make a big difference. There are many resources available for cancer patients and their families.

 

What not to do when caring for someone with breast cancer

It can be difficult, especially when the diagnosis is new, to know how to react or what to say. Here are some common missteps to avoid:

• Showing too much anxiety or stress around the patient: Caregiving for a breast cancer patient can cause anxiety and stress for the caregiver for various reasons. While it’s important to understand and express these feelings, they can also potentially trigger the patient. However, bottling them up can be overwhelming as well. Finding emotional support as a caregiver, where you can be honest about concerns and anxieties, is important. Consider joining a support group or finding a therapist or friend to help you process these emotions.
• Making assumptions about their emotions or needs: Everyone’s experience with cancer is unique. Rather than assuming how the patient is feeling, it may be better to ask them how they’re doing and what their needs are.
• Don’t blame the patient: Criticizing the patient for lifestyle factors, such as smoking or not attending regular preventative screenings, can be harmful and create resentment for both the patient and the caregiver, making an already stressful situation worse.
• Don’t make light of their condition: While it may be tempting to say things like “It could be worse” or “I’m sure everything will be fine” (even if it will), it can feel like you’re not taking their diagnosis seriously. Offering words of support is usually better.
• Don’t comment on changes to their appearance: Remarks about weight loss (common with cancer treatments) or hair loss should be avoided, as they can make the patient feel self-conscious, even if the comments are well-intentioned.
• Don’t tell them how brave or strong they are: Unless you know them well enough to be sure they would appreciate it, this is a common mistake that well-meaning friends and family make. Commenting on the patient’s bravery may make them feel like they aren’t allowed to show vulnerability, which is an important outlet for cancer patients.
• Don’t drop communication with them: When someone is diagnosed with cancer, it’s common for people in their life to feel uncomfortable and not know how to respond, leading them to pull away. Including the patient in plans, or at least regularly communicating with them, helps them feel they haven’t lost important relationships during one of the most demanding times in their life.
• Don’t forget to protect their health: Many cancer patients are immunocompromised during treatment, making illnesses like the flu or common colds harder for them to fight off. If you’re ill or have been exposed to illness, consider taking precautions to protect the patient. If possible, stay away from them until you’re well or wear a mask and other protective items. Ideally, try to reduce your exposure to illness whenever you can.

 

Frequently asked questions

Here are some common questions regarding caring for a breast cancer patient.

Should I take precautions when living with someone undergoing chemotherapy?

Patients undergoing chemotherapy are considered safe to be around. However, there is something referred to as “drug waste” that may be found in the patient’s urine, stool or other bodily fluids. Because this can cause skin irritations with exposure, it is generally recommended to take the following precautions:

• If possible, have the patient use a separate toilet or clean the toilet after each use while wearing disposable gloves.
• Toilet seats should be closed when flushed to avoid splashing, and kept closed to prevent pets from being exposed to the water. After use by the patient, toilets should be flushed twice.
• The patient’s hands should be washed thoroughly with warm water and soap. If possible, hands should be dried on disposable paper towels.
• The patient’s vomit or other bodily fluids should be cleaned while wearing two pairs of disposable gloves, and hands should be washed afterward.
• If clothes or bedding are soiled, they should be cleaned in a washing machine with warm water and laundry detergent, but not washed with other items. If washing can’t be done immediately, they should be stored in a sealable plastic bag.
• Items such as sanitary pads, adult diapers and other disposable items that come into contact with bodily fluids should be placed in two sealed plastic bags and thrown away.

How do I become more involved with a breast cancer patient’s care?

If the patient is comfortable with you becoming more involved in their cancer care, some possible methods include:

• Going with them to doctor’s appointments
• Keeping up with their treatment information
• Taking them to support groups
• Helping their family members stay informed, if not already
• Asking their medical providers (if permitted) for specific actions you can take to make them more comfortable
• Doing research on their behalf

How to help someone with breast cancer from afar

Helping someone with breast cancer from a distance can be challenging. Here are some ways to still be involved with their care:

• Regular communication: Video calls, phone calls and emails are great ways to show them you’re thinking of them.
• Communicating with their primary caregiver: Staying informed through the primary caregiver can keep you updated on treatments and the patient’s health, without needing to ask the patient frequently. This can be easier for the patient, as constantly answering questions can be exhausting.
• Set up local care: It may be possible to help pay for or find covered local services like house cleaning or nursing. This way, even if you can’t be there in person, you can help find assistance for the patient.
• Visit when you can: If possible, a periodic visit can provide significant emotional support to the patient.

What are good gifts to give a breast cancer patient?

The right gifts depend on the individual and your relationship with them. However, there are some general things that are universally appreciated, as well as others to avoid. Here are some ideas that most patients appreciate:

• Soft, comfortable headwear for those with hair loss
• Soft socks or gloves
• Funny or inspirational books
• Meals
• Comfortable clothes
• Crosswords and similar puzzles to keep them busy
• Blankets or wraps
• Entertainment, like movies and music

Some gifts to avoid:

• Overly scented products that could trigger nausea
• Sugary foods or candies, as many cancer treatments restrict sugary items
• Sad movies or books that may affect the patient’s mood
• Balloons, as many hospitals have restrictions on metallic or latex balloons due to skin allergies or interference with medical equipment

 

Getting support

Caring for someone with breast cancer can be overwhelming, but remember, you’re not alone. Often, successful treatment for cancer can eliminate the disease, allowing many patients to return to a normal life. The earlier these cases are detected, the more likely this outcome will be. In the meantime, it’s important for both the caregiver and the patient to find support. The patient’s doctor will likely have local resources to suggest, but here are some online resources that may help:

• American Cancer Society Caregiver Support
• Cancer Support Community
• City of Hope Caregivers Resources
• National Cancer Institute Caregiver Guide
• Rethink Breast Cancer

 

How PocketHealth can help with breast cancer care

Given the repetitive nature of breast imaging, tracking changes over time is essential, especially as treatments progress. Having secure access to all imaging records in one place allows patients to actively participate in their health journey. They can compare breast changes, send records to other medical providers and even share them with family or caregivers. When Aileen was undergoing treatment for metastatic breast cancer, PocketHealth enabled her husband to be more involved in her care, even when he couldn’t attend her appointments, positioning him to better support her.

PocketHealth MyCare Navigator provides personalized insights based on the patient’s imaging results and identifies any recommended follow-up steps. This feature can also generate individualized questions to ask the doctor based on the findings in the patient’s report, ensuring they make the most of their consultation.