I Want to Live Long and I Want to Live Well

I have metastatic breast cancer and am hoping that promising research underway will help me reach those goals.

Get Permission

I’m a person who doesn’t like uncertainty. I’m also a worrier. So, when my hand kept going to the same spot on the upper part of my left breast near my chest wall, I couldn’t shake the feeling that something wasn’t quite right, which persisted even after a routine mammography failed to find any suspicious masses. A visit to my gynecologist for a breast exam also failed to tamp down my growing sense of alarm. Although he assured me that the small fibrocystic lump that he found was harmless, I insisted he perform a core needle biopsy to test the tissue for cancer. I needed to have a definitive answer so I could move on with my life.

During the procedure, the doctor found a small tumor hidden underneath the cyst. It turned out to be stage I estrogen receptor–positive/progesterone receptor–positive invasive ductal carcinoma. Although hearing the words “You have cancer” was scary, it was a relief finally to have a diagnosis. Now I could concentrate on ridding myself of the disease and getting my life back to normal. Even though I usually have an eerily accurate sixth sense about the future, I couldn’t have been more wrong about my prognosis and that my life would ever be “normal” again.

Today, my focus is on the people I love, and I’ve learned not to dwell on life’s little grievances.
— Susan Swanson

Tweet this quote

Coping With Metastatic Breast Cancer

Because the tumor was small and localized to my left breast, my oncologist recommended a lumpectomy, followed by radiotherapy. I was relieved to hear that because I had an Oncotype DX Breast Recurrence Score of 9, which put the probability of cancer recurrence between 8% and 10% over 10 years. And, because I am physically very active, which shaved another half percent off my odds for the cancer coming back, I wouldn’t need chemotherapy.

I was prescribed tamoxifen and metformin, which has been shown in studies to have an antitumorigenic effect on cancer cells,1 and thought cancer was behind me. But in 2014, just 18 months after my breast cancer diagnosis and 2 days after my mother died, the cancer was back.

Once again, its manifestation was initially difficult to determine. Small red spots that looked like insect bites appeared on my left breast, and on the way to my mother’s funeral, I stopped to see my oncologist for an examination. She was certain the spots were benign and not an indication of cancer. Two weeks later, I was back in her office after more spots had popped up on my breast. Again, she reassured me that, whatever this was, it was not cancer. An examination by a dermatologist also determined the condition was not cancer, although he could not give me a diagnosis.

However, my intuition radar was on overdrive, and I had to find out what was causing this skin malady. I made an appointment with my surgical oncologist, who suggested a tissue biopsy. The pathology report found that, in fact, the cancer had recurred. Additional imaging tests showed the cancer had also metastasized to my spine. Now I was in the fight of my life.

Being My Own Best Advocate

Unhappy with the care I was receiving, I switched to another cancer center and started doing research into clinical trials that might be appropriate for me. I found a study investigating a combination therapy of anastrozole and the CDK4/6 inhibitor abemaciclib. I was on the treatment for 5 years and had an exceptional response to the therapy. For the first 4 years, the cancer remained largely stable, although skin lesions eventually reappeared on my left breast, which warranted mastectomy. The surgery bought me another 10 months of cancer stability on abemaciclib, and I finally made it to the 5-year mark of cancer survivorship.

Unfortunately, the past 2 years have been the most difficult of my cancer journey. In 2019, the cancer in my bones became active, and a series of treatments, including palbociclib, fulvestrant, exemestane, and everolimus, failed to halt disease progression. Capecitabine has so far been successful in reducing cancer activity, and members of my oncology team and I are determining our next move.

Transitioning From Early- to Late-Stage Cancer

There is no way to sugarcoat the amount of despair I feel in having transitioned from early-stage breast cancer to metastatic disease. I want to live a long life and I want to live well.

When I was first diagnosed, my goal was to make it to the 5-year mark and then receive another effective treatment to bridge me to the next best treatment and the one after that. I know there is promising research underway in metastatic breast cancer. My oncologist and I are exploring potential clinical trials that may make it possible for me to reach my goals for a long, high-quality life.

I’m grateful that I’ve lived long enough to see my three children graduate from college and launch meaningful careers and lives of their own. Today, my focus is on the people I love, and I’ve learned not to dwell on life’s little grievances. I’ve got bigger things to worry about.

I know it’s cliché to say that nothing else matters if you don’t have your health, but that doesn’t make it any less true. These days, I try to concentrate on the moment and not think too far ahead into the future. For now, that’s enough. 

Ms. Swanson lives in Sea Girt, New Jersey.

Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.


1. Roshan MHK, et al: Metformin as an adjuvant in breast cancer treatment. SAGE Open Med. July 16, 2019 (early release online).