I am often asked by people (including health care professionals) questions like…”When are you going to have your port taken out?” or “How much longer are you going to be taking Herceptin treatments?”. Depending on my mood, who I am addressing, or what their level of knowledge is about my condition, I offer responses varying from “Forever”, to “Until it stops working” to “Until I die”. In fielding these questions, I have determined that the prevailing understanding of stage 4 breast cancer typically falls into one of two extremes. On one extreme, stage 4 breast cancer is lumped in with all the other stages. In this scenario, you are diagnosed, you undergo treatment, and then the treatment ends. If you are lucky enough to have a good result, there is an expectation that you will to resume your “normal” life or at least the life you had before breast cancer. People who favor this extreme use the word “survivor” a great deal and associate your experience with a great battle through which you have passed to the other side. On the opposite extreme, stage 4 breast cancer is a diagnosis that is immediately equated with death. You are diagnosed, you learn it is stage 4, you receive palliative treatment designed to extend your life in iterations of months while maximizing “quality of life” and then you die. Those who favor this extreme seem shocked when they see you at your best moments looking and living somewhat normally. Their picture of cancer is of someone with no hair who is thin and sickly. They don’t say it, but you can see it in their eyes.
In my opinion, neither of these extremes accurately reflects the truth. The reality is that there are several stages of turbulent gray between these two extremes, and most of us living with stage 4 exist in that space. In that space, we are never free of treatment unless we choose not to be. Most of us living with stage 4 have active metastatic disease which is causing pain or other problems that one feels on the inside but doesn’t necessarily show on the outside. Most of us are living with stage 4 have ongoing side effects caused by the treatments that we have had. Many of us living with stage 4 are on the treatment roller coaster…hopping through various treatments in a quest to find one that keeps our disease from progressing, or undergoing surgery to have yet another tumor removed, or having radiation to shrink a series of tumors. The blessed few of us who achieve a state of NED (No Evident Disease) enjoy a period of peace…maintenance only treatment and temporary escape from the treatment roller coaster. Most of us have scans at regular intervals to either track the progression of active disease and determine the efficacy of their current treatment, or make sure there is no new metastatic disease (in the case of NED).
I have been fortunate to have achieved NED twice. The first came after three rounds of my primary chemotherapy regimen…I went from having metastatic disease in my lungs, bones, and liver to having no detectable disease. A year and a half later, a metastatic brain tumor was detected in my cerebellum, which I had removed with surgery and gamma-knife radiation followed by maintenance chemotherapy capable of crossing the blood/brain barrier. Thankfully, I am once again NED. I have found that most doctors will not use the term remission because that would imply that the cancer might never return, and doctors expect it always to return at some point. The cancer usually overcomes whatever maintenance drug you are on and begins to wreak havoc again. Which brings me to the most profound difference I have experienced in living with stage 4 disease…the fact that at this time, stage 4 is not considered curable. Therefore, I feel as though I can never relax into the fact that I am NED, because I am always aware that the status can (and likely will) change in the blink of an eye. The more time that elapses, the more anxiety I have with each scan because the longer I go NED, the more likely the next scan will give me the news I dread. I can’t be assured by the fact that I have no physical symptoms of metastatic disease, because when I was originally diagnosed with extensive metastatic disease, I had no symptoms then either. I think people are often surprised by the fact that I still have that level of anxiety given my NED status. In their mind, NED equates to remission which equates to being cured. Unfortunately, that is not the case. Until a reliable path to a true cure exists, those of us with Stage 4 that find ourselves NED know that statistically we are just on hiatus.
Though I cannot speak for everyone, I can say that in my case, I am not a brave warrior. I am just a woman doing what I have to do to stay alive. It is not an act of bravery, it is self-preservation. There is statistically a small percentage of people who, for no apparent reason, achieve NED and experience long term survival, ultimately dying of other causes. Since the beginning of my diagnosis, I have maintained that I deserve to try and be one of those few. When deciding my primary treatment, I did not want to accept palliative care. I wanted the same level of treatment offered to early stage patients. I had a doctor who was willing to do that for me, and I surprised even her with the response I had to chemotherapy. This led to my surgeon agreeing to a mastectomy (which he would have declined to do if I had still shown active disease), and to further radiation treatments. The idea was designed to throw everything we had at the disease and hope for the best. Despite the relapse with the brain tumor, and despite the fact that logic tells me that I will likely have to go through similar experiences again, my heart still hopes that I will be one of those lucky few who defies the odds.
I just had two clear scans…an MRI of my brain and a PET of the rest of my body. This means that I can breathe easier for the next three months until scan time comes around once again. Like others in my situation, I fervently hope a path is discovered for a true cure to breast cancer in all its forms and that I live long enough to benefit from that cure. Until then, I will live to the best of my ability with stage 4 breast it in all its extremes and uncertainties. I will hug those that I love more often and appreciate the time that I have with them. I will be present in my life…experiencing the now instead of planning for the future. I will take trips I have always wanted to take, enjoy hobbies that I have previously neglected, and take the time to see those things that make life beautiful.