I recently had the honor of leading a breakout session at the Susan G. Komen Greater Atlanta Metastatic Breast Cancer Conference.  The title of the session was Thriving with Metastatic Breast Cancer (MBC). For many people unfamiliar with MBC, these words seem at odds with each other.  We’ve become a society where metastatic or stage IV is connected to death and dying, not thriving.  On behalf of the women I see in my practice, in support groups, at conferences, and those thriving in secret I’d like to explain and share what I’ve learned.

Many women have been living with Metastatic Breast Cancer for years.  

They often keep their disease to themselves to avoid judgment and pity from people who just don’t get it. Oral chemotherapy medications, regular infusions and injections to boost their ability to contain their disease from spreading further, radiation appointments to address the spread of the cancer or pain, or even surgical procedures may be part of their ongoing care as there are a number of ways medical and radiation oncologists treat MBC. This becomes the norm alongside their daily life.  The continued medical needs and the normal dentist, dermatologist, etc. get taken care of between meetings at work, taking children to school or activities, spending time with family and friends, volunteering their time, cooking dinner, and doing their best to live a normal life.

While I am not a medical doctor, (nor do I play one on tv or anywhere else) I have learned that just as there are many types of breast cancer, there are many types and presentations of metastatic breast cancer. Not all metastases or mets are the same and depending on where in the body they are, treatments vary.  What does seem to be true is that these women often continue some form of treatment continuously or off and on until the treatment no longer works and the cancer spreads. The treatments often cause a great deal of fatigue and there can be any number of side effects sending these women to multiple and varied doctors and providers.  Women with MBC learn to live and thrive with this constant intrusion in their lives.

If you know someone with MBC:

Don’t ask when she’ll be done with treatment.  Her treatment will continue until it no longer works or she chooses to stop.  Instead ask her about her family, her work, or her hobbies.

Be aware that there may be times when she’s tired or not feeling well.  If she says she needs to nap or rest, or isn’t feeling well, don’t jump to conclusions and offer a pity nod.  Women with MBC become experts in self-care and conserving their energy for the things that are important.

When you look at her, try to see her, not cancer. Cancer is not an identity.

Don’t assume she can’t participate in life.  There may be some limitations, but thriving is about living, and living well.  This includes building and nurturing relationships, experiencing new things, traveling, and being active.

Realize continued scans and blood work are likely part of regular visits to her doctors. What constitutes a “good report” may mean the cancer is stable or not growing rather than gone.

If a conversation about death or “after I’m gone” comes up, she’s being realistic, not negative.

It can often be helpful to have these difficult conversations before you need them when you’re feeling better.  Many women find it eases their fears to have a plan in place.

Offer her space or support when she needs it.  Riding the rollercoaster of MBC can be exhausting and emotional. Understand that any and all emotions are fair game in this.  See if you can be present to her emotions rather than try to fix or change them. Being present means listening to understand rather than listening to respond.

Love her, laugh with her, and enjoy your time with her.  

Thriving is connecting.