Breast cancer that has spread to other organs in the body is known as metastatic breast cancer. It is also occasionally called stage 4 cancer. On the other hand, de novo breast cancer, which occurs while the cancer is in stage 4, can occasionally be diagnosed.
Although it can be treated, metastatic breast cancer cannot be cured. However, the life expectancy of those who have metastatic breast cancer has increased. More focused therapies, which are improving annually, are credited by researchers with this rise in life expectancy.
However, each person with metastatic breast cancer is different, and their priorities will determine how they choose to live their lives. Healthline spoke with four women who are dealing with metastatic breast cancer, and they shared resources for support, strategies for overcoming the disease’s obstacles, and their best advice for others facing this diagnosis.
Since you were diagnosed with metastatic breast cancer, what has been the most unexpected obstacle you have encountered and how have you overcome it?
Wade: My perspective on my disease has occasionally been very beneficial or very difficult.
Mobley: Accepting that my life will never return to way it was before my diagnosis has been the most unexpected hardship.
I had set goals for when things would return to “normal.” I believed that when my hair grew back after chemotherapy and I reached the one-year mark, I would feel much better. None of those incidents had the impact I had hoped for.
I had to mourn my life before my diagnosis, but now I have a “new normal” that is much better in many ways. And it’s not that simple.
Wolf: My greatest constant struggle is anxiety, which frequently flares up at the most unexpected times and is unrelated to my appointments or side effects.
After receiving a diagnosis, the fact that breast cancer is common in our society becomes even more apparent. An advertisement for my oral chemotherapy appeared on my TV screen less than two months after I was diagnosed with metastatic breast cancer. Years later, I was working on my computer when I received a notification that Olivia Newton-John had passed away from breast cancer.
Most people wouldn’t be alarmed by that advertisement or news alert, but for me, they served as sudden reminders that I have an incurable cancer during times when I was otherwise perfectly fine. Additionally, the spiraling rabbit hole of fear and worry can intensify rapidly during times when others are dying. This is particularly true when it’s a buddy or even acquaintance from “Cancerland” rather than a famous person.
The easiest approach for me to relax is to try to halt the spiral before it starts, such as by journaling, taking a walk, or listening to music. Even though it is depressing, tragic, and unfair, keep in mind that it is not my story and that nothing about my current circumstances has changed.
It’s difficult to stay present, but I keep working on my ability to do so during particularly trying times.
If someone has metastatic breast cancer, what can others do to truly aid them?
Mobley: Realizing that the cancer experience is not linear in any way, shape, or form is the most beneficial thing. On the outside, certain milestones seem final, and on the inside, they should be final, but feelings and emotions tend to surface at unexpected times. The profound impact my diagnosis and treatment experience had on my mental health wasn’t felt until after I finished chemotherapy.
In my opinion, the best way to support someone you care about who has metastatic breast cancer is to meet them where they are on that day, in that hour, and in that minute. Since nobody wants to bother their friends and family, it’s important to remind them and let them feel however they want without worrying that they’re being a burden.
I’ve been fortunate enough to have numerous PET scans that show no evidence of disease (NED), and while I’m immensely thankful for the response I’ve had to my medications, NED is not the same as cured. Nevertheless, I’m still asked when I’ll be finished with my medications or scans or no longer be immunocompromised. Wolf: One of the most special things friends can do is to remember that this is an ongoing journey.
They want me to be as successful as I wish I could be, which is why they ask these questions! However, those inquiries might also serve as a reminder that those of us who are dealing with metastatic breast cancer are never truly “done” until science advances.
In addition, friends remembered my chemotherapy schedule and sent me good wishes every other Wednesday, which was a significant gesture during my early stages of treatment. In a similar vein, I now greatly value it when people inquire about when my next scan is and then send me some love when it happens.
Huffmaster: To begin with, don’t act as though we’re dying. We just have cancer, but we are still living.
Second, we continually struggle with our evolving identities as a result of metastatic breast cancer. Don’t expect us to always know what we need because procedures like blood testing, therapies, and scans need us to adapt and rethink who we are and what we are capable of. Determine a modest task you are willing to complete for us in the future.
Last but not least, be honest with yourself and with us. If our illness terrifies you, tell us! Don’t retreat without an explanation. Silence is the worst emotional burden. Even if we “look good” or have hair on our heads, we may be bearing the emotional weight of the illness. Be someone we can rely on in the little things, and we will let you into our lives in the big ones as well.
What information would you like to have had prior to receiving a diagnosis of metastatic breast cancer?
Reena Wade: I regret not understanding that receiving a diagnosis of metastatic breast cancer does not imply impending death. Stage 4 cancer is often assumed to be terminal. It can, too. It may also entail having a severe chronic illness that will probably shorten your life.
Technically speaking, it indicates that your malignancies have spread outside of a specific area. With each new approved medication and new discovery, your odds of living longer with metastatic breast cancer increase.
I was informed at the time of my diagnosis that all I needed to do was live long enough for the next new medication to be created and authorized. As the years passed, I started to think it was true.
Mobley, Savannah: I wish I had realized that despite such a frightening diagnosis, there is a lot of hope.
There was no ramp-up period to obtain this information, and my first diagnosis was de novo metastatic, meaning I was in stage 4.
My mother died of metastatic melanoma in 2017, which is the only previous time I have encountered metastatic cancer. I immediately thought the worst when I heard the terms “lesions” and “metastases.” However, I have a very busy, contented, and largely normal life because my therapies were well received.