By Dionne Phillips
Hearing the words “you have cancer” is heavy, hard, life-changing, scary, and any other adjective you may consider a synonym of the feelings or words used above.
Your treatment regimen might consist of surgery first, then chemo/radiation, or vice versa. If the pathology report comes back with clear margins and you are considered “cancer free,” there is no one who wants things to go back to normal more than the person who received every experience firsthand. I suspect there are co-survivors who would argue this fact, whether it be parents, significant others, siblings, friends, or children. My intent is not to diminish their feelings or experiences but to validate those of the survivor/thriver.
We are the ones who receive the call or letter requiring a diagnostic mammogram, MRI, or biopsy. We experience the internal struggle of whether or not to share because we don’t want to worry our loved ones, so sometimes we carry that by ourselves—or we share and have to reassure our loved ones that it’s just a precaution, only to later learn that it is not.
Then there is the call, if you’re lucky, that shares the diagnosis information. I’ve heard stories of people finding out accidentally from people they should not have because they work at the facility, or the results drop in your electronic chart and you receive the notification before the nurse navigator calls, or there is a call to schedule surgery before you receive results from any of the aforementioned sources. Trauma, confusion, fear, AND you have no time to process it because you are now in some version of a fight for your life.
Unless you work in oncology or have a close relationship with someone who has experienced breast cancer, you may only be familiar with staging, and may not fully understand metastatic breast cancer (MBC). You aren’t necessarily familiar with the different types of breast cancer, i.e. ductal carcinoma in situ (DCIS), lobular carcinoma in situ (LCIS), inflammatory breast cancer, and triple-negative breast cancer, and you also may not know there are even more types. Then there is the language associated with the presence or absence of hormone receptors: estrogen receptor (ER) positive or negative, progesterone receptor (PR) positive or negative, and human epidermal growth factor receptor 2 (HER2) positive or negative. People can also experience different combinations and subtypes of those.
You then either have too much time to consider your path of treatment and implement it OR you don’t really have time to process the whirlwind because you are presented with the diagnosis and must decide the treatment path almost immediately; there are pros and cons to both. The decisions include the type of surgery: lumpectomy, mastectomy (single or double), reconstruction or not, what kind of reconstruction: expanders, DIEP flap, lat flap, nipple-sparing or not, just to name a few.
As a young survivor/thriver, double or single mastectomy has secondary and tertiary implications, i.e., do you have children, would you like to have children in the future, can you afford to harvest and store your eggs, and what are your views on breastfeeding? These and so many, many more are the “quick” life-changing decisions that need to be made.
If you get to the point that you hear the cancer is gone, it’s a relief, but at its “simplest,” you have to process what you just experienced, and in some cases, you may still face hormone replacement therapy, hormone suppression therapy, and/or radiation. Cancer takes a toll on your body, and you can have an inflammatory response from surgery and other forms of treatment. The trauma of it all may cause you to gain weight or hold on to it.
With all of these life-changing experiences and no time to process your emotions, when you finally get a moment, you may feel that everyone else has moved on. At work, they want you to get back to it. At home, no one notes that you pushed through because you had to, because you wanted to, but now you are no longer fighting for your life. You are tired, and maybe everything has LITERALLY returned to how it was the day before you received the diagnosis. Yet, you are different. Not ungrateful, you realize that whether you believe in God or the universe, you have reached the goal, but now the journey has caught up to you.
You know you can’t return to the day, moment, or minute before diagnosis, and while you don’t want a pity party, you want to be seen. You want to be checked on. You want those around you to note, without you telling them, that “strong friend” may have been the title you held before, and you need that same love you divvied out without complaint or comparison. You want your circle to hear you and see you when you are quiet.
You appreciated their support at the most “dangerous” point of this fight for your life. But survivors and thrivers still need help with laundry. We would love calls and texts just to check in without having to talk about your stuff; hormone therapy, chemo brain, and/or the trauma of it all have shifted their bandwidth for external stressors. They are not 100%. Not wanting to answer 500 questions about treatment doesn’t mean we don’t want to talk about our favorite series, sports team, or hobby. Being cancer-free doesn’t mean we don’t need support as we adjust to our new life. It means that we’ve made it through the part that is responsible for the bulk of trauma. But, we still need you to journey with us on this new path as a support, with empathy and kindness.
On the Podcast: Breast Cancer Conversations
Two Breasties on Survivorship