I love my friends and family. Everyone has been extremely kind and supportive since my stage IV breast cancer diagnosis, and I can’t ask for much more than that. But I know from experience and from conversations with other metastatic breast cancer patients that sometimes the people that care about us find themselves at a loss for words, or on the other side of the spectrum, share unhelpful information. This isn’t done with any malice; it almost always stems from a lack of education on stage IV breast cancer.
With that in mind, I’ve compiled this short list of communication tips for people who have a person with stage IV breast cancer in their life. I hope you’ll find them helpful and will share them with others.
1) Say Something
When friends and family drop off the face of the earth following diagnosis it can often feel, well, devastating. Faraway friends might not think they can help, so stay silent. Others don’t know what to say and therefore don’t say anything. The problem with this approach is that it often leads to regret on both sides.
What to do instead: Reach out to your stage IV friend, even if it is outside your comfort zone. Use whatever communication method that works for you to start (and yes, a Facebook comment can be a valid way to show you care). I’ve had a number of people in my life contact me and preface their message with something along the lines of: “I’m sorry I haven’t contacted you before now but honestly I just didn’t know what to say or do. But you have made a difference in my life.” I love the honesty and the kindness in this approach, and no matter how long it’s been since we’ve talked, you are automatically forgiven for being at a loss for words.
2) Leave the Quackery to the Ducks
This is a particular pet peeve of mine since I’ve spent most of my adult life writing, researching, and producing educational materials in the health and wellness arena. Because of that fact, most of my friends and acquaintances are aware that I’d rather not hear about unproven cancer “cures” or treatments (e.g., alkaline diet, hemp oil, juicing). It’s also critical to remember that stage IV breast cancer currently has no cure – quack or otherwise.
What to do instead: Avoid the C (cure) word altogether with your stage IV friends or family. It’s always good to ask your friend if information or advice you have is wanted before offering it up, and to suppress any urge to be offended if the answer is no. If the answer is yes, make sure the treatment applies to stage IV breast cancer and has clinical research to back it up.
3) Don’t Play the Cancer Comparison Game
Please don’t tell a stage IV cancer patient that they should see the oncologist that ‘cured’ your Uncle Bill of prostate cancer or the naturopath that helped their neighbor get through breast cancer. Or that they will be fine because your co-worker had breast cancer and she is now cancer-free. First of all, every type of cancer is unique in presentation and treatment needs. And even among people with “similar” cancers (e.g., stage IV metastatic breast cancer), each cancer has its own unique pathology and characteristics (e.g., hormone receptor status, cell grade, and so on). So what worked for your relative/neighbor/co-worker/dog walker/barista will very likely not work for your friend or loved one. Secondly, imagine how it feels when someone implies that you’ve chosen your coach (or doctor) poorly for the last and most important fight of your life. Enough said.
What to do instead: Nothing, unless your friend asks you for your input on finding a healthcare provider. As for relaying “cancer success stories” of people you know, just don’t do it. There is no cure for stage IV breast cancer and frankly, it’s depressing to have our experiences held up in comparison to non-metastatic patients.
4) Keep the Cheerleading Practical
I understand the tendency to lean towards the overzealous when it comes to sending well wishes to a stage IV cancer patient. You want to avoid the elephant in the room and try to normalize things. So you say things like:
- “You beat it once, you’ll beat it again.” (No, a non-metastatic cancer may have been ‘beaten’ once, but in the end, there is no beating stage IV cancer.)
- “You’ll be done with chemo before you know it.” (We may be, but then we’ll be on a different kind of chemo…stage IV treatment is for life.)
- “I believe in miracles. I know you will be fine.” (A nice thought, but it invalidates the patient’s struggles and reality.)
What to say instead: Most of us appreciate any expression of sending healing thoughts; prayers; and good mojo, juju, and/or vibes our way. In short, offer any well wishes that say “I’m thinking about you and I care.” I personally also have no objection to “Keep kicking ass” because cancer deserves an ass-kicking.
5) Refrain from “Little White Lies”
When people say “You look great!” when I clearly don’t, it’s a reminder of the loss of my former, cancer-free self. During my roughest chemo so far I was puffy-faced from steroids, 40 lbs heavier, and bald – not the look I was going for. Remember, we have cancer, not vision loss. That said, I know compliments are always given with the best of intentions, and they may be quite validating for women who are in a period of active control of this disease and are just bouncing back from feeling unattractive.
What to do instead: A good rule of thumb is to ask yourself if what you are saying is objectively true or if you are just trying to be kind. If you really feel a need to compliment a stage IV friend on appearances when they aren’t looking so great, pick an article of clothing or jewelry they’re wearing to admire instead. At the end of the day, I’d personally rather hear that I sound strong and determined then I look beautiful. Unless you are my husband. Then you are the sole person who must tell me I look gorgeous in the worst of times.
6) Don’t Fade Into the Woodwork. Stage IV is for Life
I have several good friends who make a point of traveling halfway across the state to take me out for lunch or coffee every month or two. Another friend has texted, emailed, or called me at least once a week (often every day during tough times) since I was diagnosed stage IV. Just that small gesture, which is often no more than a “How are you doing?” still brightens my day and my attitude even though we’re approaching two years post-diagnosis now. And from what I understand from other stage IV friends, it’s also highly unusual; people often start quietly pulling back from contact after the first year of treatment, assuming that since their friend is still alive they’ll be okay and support isn’t needed. It is.
What to do instead: We all have busy lives and our own crises to manage. And I truly don’t expect, or want, everyone I know to start contacting me every day (if you know me well, you’ll know I won’t pick up a ringing phone unless it’s urgent). But the occasional greeting card, email, text, Facebook message, blog comment, or other communication is so much appreciated and really does touch my heart and remind me that I have a community of caring people behind me. My husband teases me about my eagerness to get to the mailbox every day, but this is part of the reason why (it certainly isn’t to get the medical bills).
P.S. – And now a note for those following along for health updates. My CT and bone scans from last week largely showed no progression in my cancer (huzzah!). I will need to follow up with my gynecologist as they did find a cyst on my left ovary that needs further analysis, but that is likely no cause for concern. Next scan will be my brain MRI in about two weeks.