It’s mind-boggling, confusing and frightening hearing, “you have cancer.” Suddenly, you are thrust into this panic-driven mode of action, to hopefully rid you of this horrific disease.
This was my world in 2011. Doctor appointments, treatments and surgeries suddenly consume your calendar. After opinions from several doctors, I chose my team, and a plan was put into place. At my first visit, my oncologist smiles, greets us, and delivers enthusiastic, hopeful words during our visit: “It’s stage I.” “The tumor is small.” “It hasn’t spread.” “It’s curable.” “You’re going to beat this!”
These are all “pretty words” we cling to, to give us hope that we will indeed be cured and go on to live long, normal lives. The doctor was all smiles and full of enthusiastic encouragement as my husband and I sat there scared, uncertain of what questions we should be asking, assuming that this doctor had all of the answers. He had a solid plan of attack. We were confident and hopeful. On 2/22/12 I proudly rang the infusion center bell in celebration of my last chemotherapy. Hugs, cheers and congratulations were given to the newest “survivor!”
After the first year with no recurrence, we settled into a new normal version of life. At first, the oncologist saw me every few months, doing a very thorough breast exam, head-to-toe examination and asking if I had any questions. His tone was hopeful as he answered questions.
After my stage I triple-negative breast cancer, TNBC, diagnosis, I researched and read everything I could about stage I and TNBC. I didn’t reach out to support groups: I didn’t need them. I was thirsty for knowledge about this disease that I had beaten. In case it reared its ugly head again, I would be prepared. However, I never prepared myself for a stage IV diagnosis.
Fast forward 4 years and 9 months to June 2016. I was seeing my oncologist every 6 months. During his thorough exam, I mentioned that I’d had significant bone pain and fatigue since our last visit. We assumed these were side effects from a bone-strengthening drug. However, a PET/CT scan was ordered to rule out a recurrence. And then came the horrific news: “Your cancer has spread. “It’s stage IV, incurable but treatable.”
He wasn’t smiling as he delivered this news, nor was there a hopeful tone in his voice. This visit did not end with, “Now get out of here and go live your life.” Instead, he hugged me and said, “I’m so sorry.” I was devastated, but marched forward with a treatment plan that included more chemotherapy and radiation. My oncologist had a plan, but it seemed less certain. Would he follow this AC regimen with carboplatin? “Maybe.” Would I enter into a clinical trial? “We’ll see.” There seemed to be much less certainty in his delivery, as well as in his future treatment plans. Our visits now end with, “we’ll wait and see.”
My stage IV metastatic breast cancer diagnosis was delivered to me on 7/8/16. Since that day, the nature of my visits with the oncologist has changed drastically. I’m no longer given a gown and told to undress for an examination. What’s the point of doing a breast exam? The cancer decided to find a new home outside of my breast. He no longer examines me and our question-and-answer sessions are met with a look and tone of defensiveness. Since my metastatic TNBC diagnosis, I come prepared to discuss what’s next, but he is very reluctant to go there, and appears uncomfortable if I challenge his decisions. On a routine visit last April, my husband had a litany of questions for him. Although he has been a great caregiver from the beginning, my husband allowed me to do most of the question asking prior to my metastatic diagnosis. After attending an LBBC MBC conference in Philadelphia with me this past April, he has used the knowledge he acquired to ask more questions, such as what my oncologist’s subspecialty is – gastrointestinal cancer, not breast cancer; what percentage of his patients has TNBC, or metastatic TNBC – perhaps 20 percent or fewer; and how many of his patients were participating in clinical trials – zero. All of this was very concerning to us.
The reaction we received from my oncologist was very telling: He didn’t like being challenged, or losing power in our relationship. Our visits are less social since my metastatic TNBC diagnosis, more brief in nature, with minimal physical exam, and lacking in hopeful tone and body language. My oncologist knows he can’t win this battle, nor will I. I am no longer his success story. I’m a patient with a poor prognosis and no hope for a cure: no longer an “if,” but a “when.”
Editor's Note: This piece first appeared on the Living Beyond Breast Cancer blog as part of the Know Stage IV series. It has been published here with permission by the author and LBBC. Read more stories by young women with Metastatic Breast Cancer in WILDFIRE Magazine's annual MBC: Young & Stage IV issue.
Words by Janice Cowden, Living Beyond Breast Cancer "Hear My Voice" Advocate. Diagnosed Stage I at 54. Diagnosed Stage IV at 58.