Integrating a metastatic breast cancer diagnosis with the life you have takes time and effort.
I recently responded on social media to a person newly diagnosed with metastatic breast cancer (MBC). She wanted to know if things were ever going to get better for her or would the rest of her life, however long, be spent dwelling in sadness and loss.
It isn’t hard to recall my own early days with this diagnosis and it’s also easy to understand how she may be feeling. For me, the memory timeline comes down to a list of pain:
The diagnosis of breast cancer in general, about 20 years younger than when my mom was diagnosed.
Agreeing to be in a clinical trial but needing scans to confirm no metastasis.
Doc being caught off guard by spots in lungs and ovaries.
Getting angry when a cancer center social worker asked if she could give me a hug.
Having an oophorectomy, which showed no metastases.
Lying on the table for the lung biopsy as the doc and resident chatted about vacations.
The gut punch when the first thing I was told was that I didn’t qualify for the trial.
Looking up the words “palliative” and “metastatic” and “stage 4.”
Sitting in a parking lot, crying.
Sitting in my house, crying.
Sitting on a bench, crying.
Not wanting to tell anyone, including my kids, about any of this.
Hating everything associated with the cancer center.
Lying in bed, numb.
Making bargains with fate about living long enough to see my kids grow to adulthood.
The specifics for each of us diagnosed with MBC may differ but I’ve realized that the emotional response is often remarkably similar over the first months to year. How do you integrate the knowledge that your future is very likely much shorter than you expected with the idea of being present for the life you have and being open to the possibility of more? This meshing of realities is not easy. People may tell you that no one is promised a future. And, of course, that’s true. But that sentiment, a form of toxic positivity, ignores the difficulty of wrapping your mind around a sudden and uncertain death sentence — a “you may live long, or you may die in less than three years.”
Living with MBC is a bumpy road, with blind corners, unexpected hope, sunny days abruptly turned dark. At first, every “normal” experience is bittersweet. You wonder if this is your last Spring, your last New Year, your last birthday. A year into my diagnosis, I was caught unprepared on a solo road trip from Georgia to Illinois, when I grieved again everything I would miss out on.
To those newly diagnosed with MBC, I give the most helpful answer I can: In terms of mental health, time and familiarity with your care will work in your favor.
But you don’t have to wait for it to get better. It’s important to prioritize your mental health, as early as possible. There are options to find emotional care that works for you. If you are unsure how to do this, the first step is reaching out:
Professional help at your cancer center: Ask your oncologist or whomever you most connect with about emotional and psychological help. Many cancer centers have an oncology-trained specialist on the premises. Take advantage of that if you can.
Professional help through a nonprofit:Though these are typically short-term services, they can help during a rough period. Unite For Her serves MBC patients nationwide and once you join their program (it’sfree and easy) you’re eligible to choose counseling as a service.
MBC support groups: Among the national nonprofits, there are numerous support groups. Many are conducted online and are usually free for participants. An easy way to find MBC-focused support groups is to go to MBCAlliance.org and search member resources. This will provide a lengthy list that includes Living Beyond Breast Cancer, Share Cancer Support, Metavivorand more.
Local services: Many localities have services including support groups for people with MBC. One way to find these services is to ask your oncology nurse or the patient navigator about local support. For example, where I live, Wellness House has an MBC-dedicated support group. Other examples include Gilda’s Club, which continues to offer help at their locations, and CancerCare, which provides counseling and other services for residents of New York and New Jersey.
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