WHAT NOT TO SAY TO A WOMAN WITH STAGE 4 BREAST CANCER

People often wonder what to say to someone with breast cancer—especially metastatic breast cancer.

Since saying something is better than saying nothing, a better question might be to ask what not to say to someone who has recently been diagnosed with stage 4 breast cancer or whose breast cancer has recurred. First, though, let’s take a moment to talk about what it means to have metastatic breast cancer or a recurrence of the disease.

Metastatic Breast Cancer (MBC)

Metastatic breast cancer (MBC) refers to breast cancers which have spread (metastasized) to distant regions of the body. When breast cancer spreads to lymph nodes we say that it has metastasized to lymph nodes, but this does not mean it is metastatic breast cancer.

Metastatic breast cancer is also referred to as stage 4 breast cancer, the most advanced stage of the disease. Some people may use the term advanced breast cancer which is defined somewhat differently. Advanced breast includes stage 3B and stage 4 breast cancer, and essentially means breast cancers which cannot be potentially cured with surgery.

Metastatic breast cancer is not curable, though it is very treatable. The fact that it cannot be cured gives rise to some of the hurtful comments that women (and men with breast cancer) hear regarding their cancers.

Recurrent Breast Cancer

Many people with metastatic breast cancer have a recurrence of an earlier breast cancer.

They may have been treated for early stage breast cancer years or even decades earlier. You may be wondering how cancer come back after that long. We don’t understand why breast cancer recurs though there are several theories about how cancer hides and why it comes back. What is important for loved ones to understand is that this can and does happen, and when it does, women (or men) deserve all the support you can muster, not questions about how and why it can happen.

You may also be interested in learning more about how cancer spreads.

Recurrence of breast cancer can take different forms. Some women have a local recurrence of breast cancer after a lumpectomy is done on that same breast. In this scenario, the recurrence would not be referred to as metastatic breast cancer. People may also experience a regional recurrence, such as when breast cancer comes back in lymph nodes in the armpit or a chest wall recurrence. Breast cancer may also have a distant recurrence in regions such as the liver, the bones or the brain. It is these distant recurrences that are referred to as metastatic breast cancer.

Since recurrence is confusing to many people, let’s use an example. If a woman has stage 2 breast cancer, and six years later she has a recurrence of the cancer in her spine, the stage of her cancer would then be changed to stage 4, or metastatic breast cancer.

Your Best Bet When Your Loved One Has MBC – Say Something/Anything!

Before listing off some things that are best left unspoken when you talk to your friend with MBC, it’s important to make one point very clear.

Even if you risk saying something that could be hurtful, it is always better to say something than to say nothing at all. People with cancer often note that some of their closest friends seemingly disappear after their diagnosis. This is even more common when the cancer is advanced, or when it recurs (comes back.) One of the greatest fears of those living with cancer is being left alone. Make sure that doesn’t happen with your loved one.

That said, some people have great difficulty talking to a person who has an incurable cancer. Perhaps you lost someone very close to you with cancer, or are facing a recurrence of cancer yourself. If this is the case, try to at least let your loved one know that you care, but due to circumstances need to distance yourself. People with cancer understand that this happens, and can accept this much more easily than the uncertainty of questioning the possible reasons for your disappearance.

10 Things Not to Say to Someone With Metastatic Breast Cancer

Having made the point that it’s always best to say something even if you risk saying one of the things we’ll now mention, let’s talk about comments that could be hurtful to your loved one with metastatic breast cancer. It’s important to take a careful look at these comments because they aren’t always obvious to someone who has not coped with advanced cancer. Following these “do not say” comments we’ll suggest a few alternatives to the comment.

1. Don’t Say: “When Will You Be Done With Treatment?”

It’s natural to ask questions. In fact, isn’t asking questions a sign that you’re interested in someone’s life, a sign that you care? It might even seem that asking about the end of breast cancer treatment would be a form of encouragement, helping your friend visualize a happier time.

Unfortunately, for most people with metastatic breast cancer treatment is never done. Or rather, treatment continues until they decide there is no longer any potential benefit to treatment which outweighs the risks; a time when they choose to stop treatment and perhaps opt for supportive care only or hospice care.

Continuing treatment was not always an option for people with breast cancer, which can make it sound as if there is still an option for a cure if someone is receiving treatment. Thankfully, there are now treatments for advanced breast cancer which can extend life. On the downside, there is not a clear endpoint to these treatments, and they are usually continued as long as they continue to work. In other words, most of the time a treatment for metastatic breast cancer is discontinued because it is no longer working or causes side effects that are no longer tolerable.

There are many variations to this “do not say” comment. For example, comments such as “Won’t you be happy when you are done with treatment?” can be hurtful as your friend with breast cancer may be thinking, “Hmm, you mean when I’m dead?”

In many ways, the treatment of advanced breast cancer is like that of other chronic diseases, such as heart disease. The condition doesn’t go away with treatment but can be kept at bay for awhile.

Ask Instead: “What treatment are you receiving now?” or “How are you feeling with your treatment?”

Don’t be afraid to ask about treatment. People with MBC are accustomed to being asked about their treatment and don’t expect their friends to understand the types of treatments available or the goals of treatment with MBC.

2. Don’t Say: “There Has to Be a Cure”

This comment is far too common, and this isn’t surprising as it’s based on a common belief. One study found that the majority of people believed that there was a cure for even metastatic breast cancer.

The truth is that the median survival (the amount of time after which half of people are still alive and half have passed away) for metastatic breast cancer is only around three years. There are some people who are long-term survivors with stage 4 breast cancer, living 10 years or more, but this is the exception rather than the rule, occurring in less than five percent of women.

The fact that breast cancer still takes lives may surprise some people, given the amount of pink publicity out there. With the number of women who are survivors and participating in races, it can be easy to overlook the fact that people still succumb to the disease. Yet, while treatments for early stage breast cancer continue to improve, those for the advanced stages have not changed as rapidly. (Though average life expectancy for MBC has doubled over the last decade.)

A variation of this question that’s commonly asked of people who have a recurrence is “Why didn’t your treatment work last time?” Or worse, “My sister had the same stage of breast cancer as you did and she’s fine.” In a positive light, a comment such as this may just declare to your friend that you don’t understand the natural history of breast cancer. But in a negative light, she (or he) may feel you are implying that she did something wrong so that her treatment was ineffective in preventing a recurrence.

Instead Say: “I’m sure you feel frightened at times with all you are facing. If you ever need to talk to someone openly, I’m here.”

3. Don’t Say: “You Just Have to Stay Positive”

While in general your quality of life will be better if you try to stay on the positive side of things, it is equally important for someone with metastatic breast cancer to express their negative emotions, their fears, their frustrations, and their anger at a disease which doesn’t discriminate.

Contrary to popular belief, it has not been shown that “staying positive” improves survival, and these studies confirm what many of us have noted. We know of people who were as positive as anyone ever was with cancer and still succumbed to the disease. On the same token, we know of people with totally negative attitudes that continue to do well.

Keeping a positive attitude with cancer can be helpful in general, but rather than speaking these words, and in essence putting the weight of being positive on your friend’s shoulders, think of what you can do—your actions—which can lead to positive feelings in your friend. Those actions may just be letting your friend know that she doesn’t have to always be positive in your company. She can be real.

Instead Say: “I know cancer sucks. Anytime you want to vent your frustrations without judgment, I’m here.”

There is also something you can do. In addition to all of the negative ways that cancer impacts our lives, there are positive aspects. Research is beginning to tell us that cancer changes people in good ways too. If your friend seems down, see if there are any of these good ways she has changed which you can point out to her, or help her look for the silver linings in her (or his) life.

4. Don’t Say: “You are Strong and You’ll Beat This”

As much as telling someone they are strong sounds like it would be an encouragement, in real life it can do the opposite. Do you really know that your friend can beat her cancer? Are you certain that she will be one of the less than five percent of people who are long-term survivors of advanced breast cancer?

Some women (and men) can just ignore these comments, but for others, these comments are like a plug that acts to hold back all of their frustrations and worries. They don’t want to disappoint others by not appearing strong, and can even feel responsible and blamed when their cancer progresses.

There are many variations to this comment, such as “Keep fighting.” What does a comment such as this imply if your friend chooses to stop a treatment which is causing more side effects than it is worth? That she is giving up? That she doesn’t want to live?

Don’t fret if you’ve made comments such as these. Unless you’ve lived with advanced cancer yourself, you’ve not likely thought about how these comments sound from the other side. Your friend, even if she finds these comments hurtful, probably said similar things to others in the past before living with metastatic cancer herself (or himself.) Our friends with MBC don’t need us to be perfect. It’s much better to make a comment such as “Keep fighting” than to say nothing at all to your friend.

Instead Say: “You’ve really been a trouper through all of this.”

5. Don’t Say: “Did You Smoke?”

Breast cancer often spreads (metastasizes) to the lungs. If it does, it is not lung cancer, but rather “breast cancer metastatic to the lungs.” Yes even if it is lung cancer, these words should never be spoken.

This example is a good opportunity to talk about metastatic cancer some more. If your friend has breast cancer which likewise spreads to her liver or her brain it is not liver cancer or brain cancer. If you do a biopsy of breast cancer which has spread to the liver, you will find cancerous breast cancer cells in the liver, not cancerous liver cells. This would be referred to as “breast cancer metastatic to the liver.”

If your friend’s cancer spreads to her lungs, don’t ask about smoking, but it is important to avoid talking about any possible risk factors. Nobody deserves cancer. Questions and comments such as “Did you breastfeed your children?” or “Does breast cancer run in your family?” or “I thought you ate organic foods!” should be left for discussions with those not facing cancer. Your friend needs to you simply support her (or him), not to try and determine what caused her (or his) cancer or what risk factors for breast cancer she has. If you think about it, these questions are often asked for a specific reason; if your friend has a risk factor that you don’t have, maybe you are safe. But anyone can develop cancer.

Nobody deserves cancer. Asking these questions can make someone living with cancer feel like they caused their disease—like they deserve it. That is the opposite of what you want to do in supporting your friend.

Instead Say: “I’m impressed with how you are taking care of yourself,” or, if someone around you happens to make one of these comments, “Nobody deserves to have cancer.”

6. Don’t Say: “I Read About a Treatment…” or “You Need To…”

One of the most common comments people with cancer receive is unsolicited advice on how to treat their disease.

Whether it is the latest homeopathic remedy for cancer, foods that may decrease the risk of getting cancer, or the latest cure you read about, try to avoid staunchly recommending it to your friend. The same goes for recommendations about their care. If your boyfriend’s next-door neighbor’s second cousin raved about a breast cancer specialist, you may want to think a moment before insisting your friend likewise see that specialist.

There are two reasons to practice caution with comments such as these. One is that comments such as these can add a burden to someone already overloaded with decisions to be made and an overflowing to-do list. For this reason, try to avoid any comments that include the phrases “you should…” “you need to…” or “you have to…” Your friend already has enough stress in her life and needs people to help her tackle her to-do list, not add to it.

Another reason is that many of these suggestions are combined with comparisons. “My sister-in-law’s sister went to the Mayo Clinic and said she wouldn’t go anywhere else.” Not only do comparisons sometimes work to put someone down, but they take the focus off of your friend—the one you need to support.

Instead Say: “It sounds like you’ve chosen a great team to treat your cancer.”

If you really wish you could offer your bit of advice, perhaps say, “If you ever want me to look into anything for you, just say the word.” End of conversation.

7. Don’t Say” “Aren’t You Glad You Have Breast Cancer Instead of Some Other Cancer?”

Surprisingly, this comment is spoken too frequently. Perhaps the pink ribbons adorning everything from kids toys to garbage cans make people think that illness and death from breast cancer is a thing of the past. While pink ribbons have helped to raise awareness about breast cancer in general, many who are living with metastatic breast cancer feel even more isolated.

Many people with MBC feel this hurt keenly during Pinktober. These people with metastatic breast cancer may tell you about how lonely it is to have metastatic breast cancer in a sea of early-stage pink. Some people with MBC have even been kicked out of support groups—those with early stage breast cancer have found it too depressing to be around someone who will actually die from the disease. Thankfully, there are now support groups such as METAvivor, which provide an outlet for those living with MBC.

There are variations to this comment which are likewise hurtful. For example, the oft-made comment, “It could be worse, you don’t need your breasts.” No cancer is good. It doesn’t matter if it’s breast cancer or melanoma, early stage or late stage, treatable, or not. Your friend would much rather never deal with cancer at all.

Instead Say: “I’ve heard that people with metastatic breast cancer often feel forgotten in the breast cancer movement. Why don’t you tell me how that feels, and what I can do to help make a difference.”

8. Don’t Say: “Call Me if You Need Me”

What? Shouldn’t you offer your help and support to someone living with metastatic cancer? Isn’t offering our help the most loving thing we can do for our friends facing MBC?

It’s not the offer of help that’s wrong in this statement, it’s the qualification: “If you need me.”

If you ask someone to call you if they need help you are putting the burden of calling and asking for help on them. Many people with cancer are afraid of being a burden. Even if they desperately need help, they may hesitate to call. It is better to say you want to come and help and ask what time would be best and what she (or he) would like you to do.

Yet sometimes even making the decision of how a friend can help is difficult. There are so many decisions to be made all the time with MBC, and even coming up with ideas on how you can help may feel draining. Instead, offering to help with a particular chore may be the best offer you can make.

Instead Say: “Can we come over on Saturday and vacuum your house?”

9. Don’t Say: “I Understand”

The comment “I understand” is used far too often when talking to people with cancer. The problem with this comment is that nobody can understand. Even if you have the same type and stage of cancer, are the same age, have children the same ages and live in identical homes, you still couldn’t understand.

A variation of this comment is saying that you understand because your aunt, or mother or next door neighbor had the same disease. It is surprising how many stories a person hears about others with cancer after they receive their own diagnosis. Your friend, however, wants you to hear her and to listen to her, no matter how inspiring your stories about others may be.

Living with cancer is different for each person. Some cancer survivors shared some of these thoughts in this article on  what it is really like to live with cancer. Part of the reason you can’t understand, it that even those living with cancer don’t understand how they are feeling much of the time. On days when everything is going wrong, or they hear bad news on an imaging report, they may feel joyful. In contrast, a person with MBC may feel down at the times you would picture them being happiest. Nobody can understand, but we can ask and we can listen.

Instead Say: “I have no idea what you are going through, but I’m here for you.”

10. Don’t Say: “You Don’t Look Sick”

This is another “do-not-say” that can be counterintuitive. Wouldn’t it be good to point out how good your friend looks?

It’s not the comment “you don’t look sick” that can be hurtful, but rather the meanings that arise between the words.

We know that breast cancer affects body image in many ways. Commenting on how your friend looks brings those sometimes difficult feelings to the surface. But one of the hardest things about this comment is what may follow in your friend’s mind. Since she knows she has a cancer which isn’t curable, this comment may be a reminder to her that some day she will look sick.

At a yet deeper level, facing metastatic cancer has a way of helping people see what is most important in life. The superficial has less value, while hidden treasures, such as compassion become most important.

Instead, find some way to compliment her on what she now values much more than “looks.” For example, a word about her tenderness, her gentleness, or her love for others.

Do Say: “I Don’t Know What to Say”

If you’re struggling to know what to say to your friend, simply tell her that. Let her know that you have no idea what you should say. She will appreciate the honesty more than you know.

Bottom Line on What to Say and Not to Say to Someone with MBC

If you’re human, chances are that you’ve said one of these things not-to-say things to your loved one with cancer. Don’t fret. You’re human! People living with MBC know that you are in a position in which you simply don’t know what to say. Chances are, they’ve been there themselves in the past and have spoken these same comments they now cringe to hear.

Don’t let the fear of saying the wrong thing keep you from saying anything. It’s most important that your friend knows you are not going away.