What I Wish My Friends Knew: Insights From Our Stage IV Community Forum
Stage IV, or metastatic, breast cancer — cancer that has moved beyond the breast to other parts of the body — is fundamentally different from earlier-stage breast cancer. Your closest family members and loved ones who support you every day will realize this over time, with your help. However, friends, colleagues, and acquaintances might not understand the difference. As a result, they may talk to you in the same way they would talk to someone with earlier-stage breast cancer: “You’ll get through this,” “You’ll beat this,” “I know you’ll be glad when you can put this behind you.” These expressions of support, though well-intended, can be tough to hear when you have metastatic breast cancer (MBC).
Even when friends do understand the nature of MBC, they often don’t know the right things to say. It’s hard to talk about serious illness, and many people — even well-meaning people — won’t get it right.
At Breastcancer.org, we asked members of our stage IV Community forum to weigh in with their thoughts about what they wish their friends and acquaintances knew about their diagnosis and situation. These are some of the most common threads that emerged.
My treatments will never end
People tend to assume that cancer treatment has a beginning, a middle, and an end. They often don’t understand that people with metastatic breast cancer require ongoing treatment to keep it under control. The cycle of treatments, exams, scans, and physician visits for MBC is ongoing.
“I would like my friends to understand that once you are diagnosed as metastatic, there is no end to treatment,” writes Community member CSLibrarian. “People still ask me when my chemo will end. I try to explain, but there seems to be no understanding of the continuing nature of metastatic disease.”
SandiBeach57 agrees: “I get the same question all the time from friends and family: ‘When will you be done with treatments? We are waiting for you to get back to your normal self.’ At stage IV with liver mets, I will always have cancer. It remains hidden when under attack from treatment, but it doesn’t go away.”
I will not beat metastatic breast cancer
The metaphor of cancer as a battle is ever-present, and people try to be encouraging by saying things like Community member nowaldron hears: “Well, you’ve got a great attitude. If anyone can beat this, you can!” But MBC isn’t beatable. You can live with it — and live well, often for years — but there may come a time when treatments stop working.
“Friends need to understand that a tumor which has not spread beyond the breast is not going to kill anyone, while malignant cells lodged and growing in another location are deadly,” says vlnrph. “Early-stage women just don’t get it, not to mention those who’ve never had a brush with cancer. [They] minimize the very real fact that metastatic disease will quite likely be the cause of death by asking, ‘How can you think like that, you look fine!’”
“I wish my friends understood that ‘lesions in the bone’ or ‘lesions in the liver’ mean ‘I’m gonna die from this,’ says pajim. “I hate explaining that I have a terminal disease. Or that I’m slowly (very slowly I hope) dying. Just hate it. Did I mention that I hate it?” Paulinek adds: “A lot of people in my life keep calling me a strong fighter but don’t realize that I am not always strong, and despite all my fight, I’m eventually not going to win.”
I might not look sick, but I do still have advanced cancer
“I may look normal, but my body fights every day … every single day,” writes Community member SandiBeach57. People with MBC often look like their former selves, especially as initial treatments give way to longer-term maintenance treatments. This can mislead friends and acquaintances into thinking everything’s just fine — and they might react accordingly, either questioning or minimizing what you’re going through.
As nowaldron relates, looking well can be a double-edged sword: “I find that most people forget that I am fighting cancer, which can be great. I sometimes have to remind people that I am not cured and the best I will ever be is stable ... Also, when I was first diagnosed, I was pretty sick with mets to liver, and almost all bones including skull, ribs, spine, pelvis, and femur. People wonder how I could ‘really’ have been in such a bad way when I seem perfectly fine today. Sometimes, it is exhausting to explain exactly what MBC is and how the disease progresses — sometimes very quickly and other times slowly or not at all.”
I might look like myself but not feel like myself
Community members also wish their friends knew that, even if they look well, they might not be able to do the same things they always did. CSLibrarian notes that some of the advertisements for breast cancer medications perpetuate this idea: “The commercials on TV that show a normal-looking person (complete with hair!) assuming the new normal of MBC are misleading. It is a much bigger struggle than what is shown.”
SandiBeach57 suggests that friends be sensitive to this fact: “Please don’t plan a full day of activities that include nonstop walking, especially after I tell you I have fatigue that puts me in bed for several days. Please respect when I say to dinner guests that it has to be an early night, like 9 pm, and you stay until 11 pm.”
DivineMrsM notes that she still wants friends to include her, as she is still the same person and is much more than just the breast cancer, even if there are down times: “I’d like friends to see me in the light of my whole life, not through the lens of breast cancer … I still enjoy a good piece of gossip. I still enjoy a great bargain. I love the pool on a hot summer day. I love a binge-worthy Netflix show. I live for a really good book I can’t put down.”
Admit that you don’t know what I am going through, and don’t pressure me to be positive
“What I wish my friends knew is that the internal struggle to deal with all the emotions involved with this disease can be devastating,” TeriAngel shares. “When I hear someone say ‘but you look amazing’ or ‘I would never guess you had been through surgery,’ the fact that they are looking at the physical just shows that they have no clue of the real struggle. They didn’t see me on the days when I couldn’t get out of bed or puking into a pan by the side of the bed. They didn’t hold my hand when the doctor gave the diagnosis and my whole world started crumbling. They didn’t hear me screaming at God, at the world, at life to release that built-up steam of emotional turmoil. I wish they would just say ‘I don’t know what you’ve been through but I’m here for you now.’”
Without even realizing it, friends can put you under pressure to be positive and express only optimism. But sometimes that’s just not possible, says Community member arolsson: “We only get to live life during the three-month intervals between scans. As for how we are really doing, I try to explain it like climate change: things are moving slowly toward catastrophe but there are a lot of ups and downs along the way. I wish I was not expected to be positive or hopeful all the time — this is not expected of healthy people!”
Nbnotes writes: “I really wish people would just say, ‘this stinks, I’m sorry that this is happening’ rather than trying to force me to see the positive. I am generally positive, but when there is a setback, I need time to process it and come to grips with the new reality.
Don’t take it personally if I don’t want to talk
There may be times when your friends want to talk but you don’t — and they need to respect that boundary. Naturally, friends may be concerned and want to know what is going on, but it has to be on your terms, when you’re ready.
Claireinaz experienced this firsthand: “I had two friends get upset with me because I asked them to call my husband and ask about treatment, etc., especially in the beginning, instead of always calling me. They would call, and I would be pulled out of a place where I wasn’t (for once) thinking about cancer or the abject terror I was feeling, and I would get terrified all over again, because they reminded me of my diagnosis. I would also get anxious having to recall and tell them how it was going. Finally, they were worried about me, and I felt they wanted me to reassure them I was going to be okay. It was an added stressor.”
Friends should take their cues from the person living with MBC. And when you meet face-to-face, our Community members advise, friends shouldn’t feel pressured to fill the air time with lots of talking. It’s enough just to be there: “Please just give me a hug and ask if my day is going okay,” says SandiBeach57. “That validates I have emotional pain and have to face a shortened lifespan and that you care.”
Don’t suggest alternative or complementary treatments
Some Community members have stories about well-meaning friends who want them to try an alternative treatment they read about or heard about, as if that holds the promise of a cure. But that’s just not helpful.
“I wish friends realized that I am aware of complementary treatment for breast cancer,” writes DivineMrsM. “Many of us have friends and family who send us articles and books or try to steer us into watching videos of the latest anti-cancer guru talking about how you can beat this disease. But they never seem to come right out and ask what our personal beliefs are on the topic, or if we use any complementary treatment. They don’t even know what kind of conventional treatment we’re getting, let alone if we’ve added additional complementary ways of dealing with MBC. I know they mean well, but it can come across as insulting.”
S3K5 agrees: “I know you mean well, but please stop telling me to try all these herbal regimens because someone else tried it and was completely cured of cancer. Each cancer is different and each person reacts differently to the same treatment.”
My partner needs your support, too
Friends often put all of their focus on the person with cancer, but many of our Community members point out that their partners need support, too. A husband, wife, or life partner is often playing the role of primary caregiver and support person — and that can take its toll.
“I wish my friends would give my husband a hug once in a while,” notes SandiBeach57. “He silently suffers as he knows the real possibility of life without me. He told me he was jealous when I spend time with girlfriends, volunteer activities, even grandchildren, as that is less time he has with me.”
Elderberry agrees: “Our husbands need hugs too. They are frightened by our diagnosis. They get exhausted trying to do whatever they think is right for us. Sometimes they are at a loss as to what to say or do.”
I have things to teach you
Although many of our Community members with MBC report feeling stung by what well-meaning friends say, they admit they’ve said similar things before their own diagnoses. You can’t really understand what someone with stage IV cancer needs to hear if you haven’t been in their shoes. So this is an opportunity for education. Some don’t want to play the role of educator, but others say they have come to embrace this role.
“We can’t really expect them to understand something that they cannot comprehend,” Elderberry writes. “They want to believe we are ‘warriors,’ that a new drug is just around the corner, that our positive attitude will save us. Gently educate them but cut them some slack. How smart were we before we found ourselves shipmates in this leaking, rudderless boat?”
MountainMia agrees: “I cringe to think of the things I said or didn’t say, all the things I didn’t do, before I knew (at least a little) better. I have been trying to teach people how to respond more generously to our circumstances. And by ‘generously,’ I mean with more warmth and less criticism. If we don’t help them learn, they won’t, until they’re in a similar situation.”
“We need to help our loved ones help us in the ways we need,” says Nkb.
— Last updated on February 10, 2022, 3:55 AM