When I was first diagnosed with stage II breast cancer at age 45, my initial thought was: “Will I die?”
I knew nothing about navigating breast cancer or the drug class I was prescribed, and the people who treated me didn’t even begin to address the many side effects and pain I experienced with the treatments.
But I quickly learned to take notes during visits to my oncologist, and then I became a strong advocate for myself and for others. Below are the important things I was not told when I was diagnosed with breast cancer.
What I Was Not Told
I. Early-Stage Breast Cancer Often Returns as Stage IV
I wasn’t told that about 30% of all patients with early-stage breast cancer will eventually have stage IV cancer. I learned that after my cancer came back 6 years later (at age 51) as stage IV, with metastases to my bones, at which point panic started.
Through many talks with my oncologist and with other women in my support group, I learned that stage IV breast cancer can be a chronic disease, as new treatments have become available and more and more women are now living with metastatic disease for years.
II. Treatment Is Forever
When I learned that I would be receiving treatment forever, it took a lot of effort to wrap my mind around that. Talking about it to other people was equally difficult. Explaining to others that although this cancer was not curable, it was now treatable, was met with wide eyes and more questions.
When I was explaining to my family members and friends my now stage IV diagnosis, it was often met with deer-in-the-headlights looks. People don’t want to know or understand metastatic disease. We are the elephant in the room, when other patients and family members are overflowing in “pink.”
III. Choose Your Oncologist
Your relationship with your oncologist is now more important than ever. My first oncologist and I just did not vibe. I felt that he was treating me as just another statistic, so I decided to “fire” him.
Yes, you are allowed to let go of any doctor with whom you don’t see eye to eye. Many patients don’t realize that they can “fire” their oncologist and get an oncologist with whom they feel more comfortable.
After meeting with a few oncologists, I picked one. She is amazing. She answers all my questions. She makes me feel that she will work to extend my life as much as I will.
IV. All Patients Are Not the Same
Breast cancer is not a one-size-fits-all disease. Even diagnoses that are similar will vary between patients. You cannot compare your treatment plan with the plan of another patient with breast cancer. We are each unique in our needs and the treatments that are prepared for each one of us.
V. Side Effects Will Vary
The side effects will also vary between patients and treatments. Aside from the hair loss, the nausea, and the changes in appetite, I had several side effects that were much worse than losing my hair. That affected me in such a negative way, it was all I could do some days to crawl to the bathroom.
Build a Support System
Finally, as a patient, you need to build a strong support system that will allow you to look for help in combating the side effects.
I still continue to require support from my medical team. I have had to fight hard to get what I needed to be able to maintain a good quality of life. I did this, even when it meant being labeled as a “difficult patient,” a term providers use to describe some of their patients. I’ve been called worse things.