The ‘pink elephant’ in the room: When cancer returns
Clinical psychologist Dr. Stephanie Hutcheson is a part of a sorority of sort for which she was not intentionally recruited, nor for whose membership she clamored. The initiation process included diagnosis, treatment, surgery scars, radiation and chemotherapy which are rites of passage for all breast cancer diagnoses. She has now been inducted into the society twice, having earlier this year fought her second battle with breast cancer and been given a good outcome by her doctor – no evidence of disease detected and no lymph node involvement. She is now transitioning out of active treatment and is now wondering what date she should mark as a survivor – whether it should be her first diagnosis or her second diagnosis, and whether it even matters. As for her new normal, she’s still working that out. What she knows for sure is that she’s glad to be alive, that she’s healthy and that she is at the end of treatment.
“I’m a survivor … again,” said Hutcheson, 53, who, during breast cancer awareness month, is raising the awareness that recurrence is a part of what survivors deal with.
To be honest, Hutcheson, who is returning home today after receiving treatment in Washington, D.C. since February, said she didn’t expect to have to battle breast cancer again almost 23 years after successfully defeating the insidious disease the first time.
“After that length of time, the thought that breast cancer would come back was tucked away neatly at the back of my mind,” she said. “It had migrated there after the five-year mark, then retreated a little further at the 10-year mark when I could breathe a little easier. Sure, I had a rise in anxiety at yearly checkups, but that anxiety – the fear of cancer recurrence – also diminished as the years passed. I was a double-digit breast cancer survivor. I was living my new normal. Breast cancer was no longer actively on my radar.”
That all changed in January when her mammogram result wasn’t normal and she needed further tests. An ultrasound and a biopsy confirmed she had breast cancer again. She was diagnosed with invasive breast cancer with triple negative markers, a diagnostic profile common in Black women, signaling a more aggressive disease warranting an equally aggressive and targeted approach.
Hutcheson’s cancer was known as a late recurrence, having recurred well past the five-year milestone. She settled in for the process which would be lengthy. But she said she released her care, time and treatment to God.
“My spiritual life and my faith in God would be the most significant comfort and strength to me and anchor me for and through this journey.”
The reality is that there is always a possibility of recurrence and research supports several factors that increase the overall risk of recurrence, including the size of the tumor, whether it’s lymph node involvement, age at time of diagnosis, the kind of treatment received, the response to treatment, or how aggressively the tumor presented.
The larger the tumor, the greater potential of recurrence. If the tumor has spread to the lymph nodes, that signals a greater risk. The younger a person is at the time of diagnosis also serves as a red flag. And response to chemotherapy, radiation and hormone therapy are indicative of no evidence of disease or partial response to treatment are also suggestive of an increased risk of recurrence.
For Hutcheson, an assistant professor of psychology at the University of The Bahamas, the “pink elephant” in the room is that cancer can recur early or late, as in her case. She said all survivors live with the reality that cancer can come back.
While research and funding have streamlined protocols and have advanced more efficient and effective comprehensive, integrated and complementary modalities of treatment, and more of those people diagnosed are living longer, she said recurrence shadows survivorship.
“The patient can have the best response to the treatment protocols, but still carries the possibility of recurrence. And it’s not an idea or a conversation that survivors or their loves ones want to think about or talk about – yet it’s there. Recurrence shadows survivorship.”
The two-time survivor said during October, survivors are in celebration mode raising awareness about breast cancer and affirming that it’s not an automatic death sentence anymore, because so many people join the ranks of survivors yearly. She said medical professionals and the general public are more informed about breast cancer than before and less stigma is attached to the disease. Among the survivors is a cohort of women like Hutcheson who have had to go through the rigors of diagnosis and treatment again, having to revisit the myriad and layered emotional, physical, existential and psychological responses of having breast cancer again.
Breast cancer recurrence she said can be quite destabilizing and devastating and that psychological and emotional responses can be varied. Having to integrate and absorb it she said is difficult. Many of them feel as though their body is their enemy and that it betrayed them again.
Hutcheson said reactions are often more intense from the initial diagnosis, particularly with a late recurrence like hers, and that many survivors feel a sense of shock that they are having to deal with it again. Reactions that are not uncommon she said include denial, anger, depression, stress, anxiety, feeling overwhelmed, worried, and feeling guilt as far as what they did to bring it on again and how could they put their family through it again.
The clinical psychologist said her initial thought was she hoped it hadn’t spread.
Her peers, psychologists Alice Chang and Sandra Haber’s suggestions to cope with challenging emotions and thoughts include patients having a forum and safe place to vent and find support. They say expression is healthy and cathartic and that restricting or reframing thinking to mine the positives in the situation, no matter how minute, provide a distraction and a measure of relief.
The doctors say incorporating relaxation and pleasurable activities takes the focus off cancer and allows a medium to combat physical symptoms related to stress, anxiety and treatment. They say counseling with a psychologist or mental health professional can provide additional support as well as focus on the mental wellness needs, whether at initial diagnosis or recurrence.
As Hutcheson fought the disease the second time around, it was a journey she described as familiar, but also different, due to advancement of technology. The treatment protocol was also a departure from what she had expected.
After a month of additional testing and biopsies, her treatment began with weekly chemotherapy for 12 weeks, followed by a bilateral (double) mastectomy, with reconstruction in the second phase.
“Chemotherapy as the first assault against cancer was difficult to wrap my brain around,” she said. “Intuitively, it seemed to make more sense to remove the breasts, as they were ‘ground zero’ for the cancer, then administer chemotherapy. I reasoned that is how I was treated during my first diagnosis – surgery [lumpectomy], followed by chemotherapy and radiation.”
During her most recent battle, Hutcheson was determined to mark her journey through video recordings, audio recordings, pictures and journaling to capture and remember the experience for posterity.
“Cataloguing my experience was also an avenue for catharsis – for coping emotionally, psychologically, and spiritually with breast cancer.”
She also credited a strong support system of family, friends, church and workplace – people she calls her tribe – with getting her through it. She said they prayed for her, called and texted, and were there for her in practical ways – being additional ears at doctor’s appointments, tests, chemotherapy and surgery. She said they were her transportation, her social network and her spiritual community which was critical to her getting through.
Hutcheson said her outcome is a good one, and that she beamed when an oncologist told her that she had the best response to chemotherapy she could hope and expect, and that there is no evidence of disease and no lymph node involvement which she said was fantastic news to her.