The 10 Things Your Friend with MBC Wants You to Knowby Phyllis Johnson Patient Advocate
Did you just find out that your friend has Stage IV cancer? Or has she been living with it for years defying her doctors' predictions? It can be a challenge to understand what your friend is going through. The public face of breast cancer is very pink and cheerful. Your friend's reality is very different. Although every person is unique, there are some threads that are common in metastatic breast cancer (MBC) patients. Your friend may be reluctant to tell you what you need to understand. Here are ten things your friend with MBC would like you to know.
1. Your friend is one of about 150,000 people living with metastatic breast cancer. MBC patients include men and women diagnosed at Stage IV as well as people initially diagnosed with an early stage cancer who recurred years after they thought they were cancer free. Most of them had their mammograms and followed all the suggestions for early detection. They learned that early detection may not help with an aggressive cancer that pops up between checkups. About 20-30% of people who are treated for an early stage cancer will recur with MBC. The 40,000 people who die in the United States every year from breast cancer die from metastatic breast cancer.
2. Metastatic breast cancer means that the doctors have found breast cancer cells in another part of her body, usually the brain, liver, lungs, or bones. She does not have brain cancer or liver cancer. She has breast cancer that has spread. Your friend may abbreviate all of this by saying she has lung mets or bone mets. If you know someone who is being treated for liver cancer, don't urge your friend to try the same treatment. Her treatment will be a breast cancer treatment that the doctors hope will destroy the breast cancer cells in her liver.
3. The prognosis for your friend can range widely depending on where the cancer has spread to and how extensive the tumors are. A Stage IV diagnosis is very serious, but some women live a high quality life for years despite having MBC. Talking about prognosis can be hard for some people, so it is best not to ask your friend about it directly. Let her know you care about her and listen for cues about whether she wants to talk about cancer. Some days she may just want to hear the neighborhood gossip and escape thinking about cancer. Other times she may really need someone to listen to how worried she is and how much pain she is in from her treatments.
4. You can't guess how sick an MBC patient is by how she looks. Some women and men will be on treatments that leave them bald and puffy, but others may look perfectly well. While most of the time, people like to hear about how good they look, saying, "You look great," to an MBC patient may come across as denying her reality of having a deadly illness. Some of the worst side effects from treatment like painful nerve damage or digestive problems may not be visible at all.
5. If your friend is on a treatment with lots of side effects, she may need to go on disability, especially if her former job was one that had an inflexible schedule or required concentration and manual dexterity. Her doctor may have urged her to take disability to avoid being in public places where she would be exposed to infections while her immune system is compromised. In between her frequent medical appointments and treatments, she may have days when she has enough energy to do something fun with her family. She wants you to know that it is not laziness that made her decide to take disability.
6. Your friend may be able to continue working if she has an employer who will allow her time off for appointments and if her treatments have few side effects. She might feel she has no choice if she is not eligible for disability or is the sole support of her family. She might need her job to escape thinking about cancer. Just because she can still show up for work doesn't mean that she is getting better. Some MBC patients work even though the cancer is spreading and getting worse. Working may drain every bit of energy your friend has. She wants you to know that she isn't being anti-social if she can no longer enjoy a long phone conversation with you or do some of the fun excursions you used to take together. She still loves you; she just has to conserve her energy.
7. Unless there are major treatment breakthroughs, your friend will never be out of treatment. For the rest of her life, her doctors will assume that she has active cancer in her body and monitor her closely. If just a tiny spot or two of cancer has spread, treatments may shrink it enough that she shows No Evidence of Disease (NED) and she may be able to stop taking drugs for a while. I personally know people with bone mets who are in that situation--thriving and moving on with their lives. But that is not the reality for most Stage IV patients. Depending on the kind of breast cancer they have, they may receive hormonal therapies, chemo, radiation, or the new targeted therapies. Doctors will use one treatment for as long as it keeps her stable and then try another.
8. Your friend is in this situation for the long haul, so she can probably use some long-term help to make her situation easier. It may be hard for her to ask, so she will really appreciate it if you let her know what kinds of things you can do. Can you be her regular ride for her Thursday appointment or watch the children for her? If you live far away, she may appreciate cards and notes. You might even put in a gift card for a restaurant so that she doesn't have to cook on a day when she isn't feeling well.
9. You may be so distressed by your friend's illness that you find yourself pulling away from her. You don't know what to say, so for fear of saying the wrong thing, you avoid her. Your friend wants you to know that you are not the only one. She may be feeling lonely and isolated because other people are avoiding her too. It's better to say the wrong thing than to abandon your friend. Be honest with her and tell her how you are feeling and ask her to educate you about the best ways to support her. However, remember that this situation is not about you and your grief. Don't ask your friend to comfort you about her illness. Depending on how close you are and how dire her illness is, you may need some time to cry and mourn together. It's OK to be sad. Follow her lead.
10. Even if she is no longer able to do some of the activities that you used to do together, your friend is still the same person she was before she had cancer. She still loves a game of bridge or antiques or country music. Find things you can do together that get her mind off illness. If you used to train for marathons together, you may switch to a brisk walk in the park. If she is homebound, you may volunteer to bring supper and a movie that you can watch together.
People with MBC are all different, so some of these items may not fit your friend. Listening to what she says and paying attention to her non-verbal cues are important to knowing what to say and do. Maintaining your friendship while your friend is facing a long-term health problem can be challenging, but she will appreciate your understanding and support. You will be blessed with a deeper friendship.