A closer look at the physical and emotional impacts that continue after treatment is over, and how to better support breast cancer survivors
“I saw something about Breast Cancer Awareness Month, and it just hit me – ‘Oh shoot, that’s me!’” recounts Amy Schimanski, a nurse in Intensive Care Nursery at Jefferson Health who was diagnosed with breast cancer just as the pandemic hit the U.S earlier this year. “I’m a part of those statistics. I don’t know if I’ll ever fully get past that.”
A cancer diagnosis is life-altering. Treatment can be daunting, with unexpected side effects and interventions that permanently change one’s body. Balancing the demands of life – work, parenting, caregiving – with treatment and recovery can be exhausting. The physical and emotional impacts can continue long after the last chemotherapy infusion, surgery, or that victorious bell-ringing after the final radiation. Here we talk to Amy about surviving breast cancer and what she wishes people knew about the experience, as well as experts at the NCI-designated Sidney Kimmel Cancer Center – Jefferson Health on how to better support individuals through survivorship.
I May Be “Cancer-free,” But the Anxiety and Fear is Still There
“The other day my youngest asked me – ‘what if it comes back?’” says Amy. “Honestly it’s a question that will always be at the back of my mind, even if I’m on the path to healing.”
Amy, like many patients diagnosed in the early stages of breast cancer, experienced no symptoms or warning signs. It was only when she went in for a mammogram – her first ever – that something abnormal showed up. Her diagnosis was a complete shock. “There is a very real fear that I missed it once, what if I miss it again?”
“Cancer, but also side effects from treatment, can create this psychological sequelae that keep people anxious and rooted in that fear of still being sick,” explains Gregory Garber, Director of SKCC’s Cancer Support and Welcome Center. “Every ache or pain can send alarm bells off and make the patient think ‘Is it the cancer again?’”
“For many patients, there is so much to deal with during treatment that there’s barely any time to process the situation,” adds says Celeste Vaughan-Briggs, oncology social worker and Manager of the Free Breast and Cervical Screening Program at SKCC. “After treatment, things slow down and the patient is able to reflect back, that’s when fear and anxiety can intensify.”
Both Garber and Vaughan-Briggs encourage support systems and caregivers to accept that the fear and anxiety around recurrence will ebb and flow, and to be aware of triggers.
“Many patients experience “scan anxiety”, which is very understandable because everyone wants a clear scan to show that their cancer is still at bay,” says Vaughan-Briggs. “Anniversaries marking the day of diagnosis, a surgery, being declared cancer-free, can bring up complicated emotions as well.”
I May Look OK, But I’m Still Dealing with The Physical Impact of Treatment
“I am on hormone suppression drugs which has effectively put me into medically induced menopause,” says Amy. “Hot flashes, mood swings, joint discomfort have become my new normal. As a woman in my early 40s, some of these side effects can be a little embarrassing, I feel like I am constantly having to explain myself.”
She also underwent a bilateral mastectomy and suffered some complications. “Recovering from the surgery has been very painful. I haven’t been able to sleep comfortably. I haven’t been able to exercise. It’s even been hard give my kids a hug.”
“Such a major surgery not only causes significant trauma to the body, but it’s also an alteration of your physical identity and therefore your sense of self,” explains Vaughan-Briggs.
“Looking at my body for the first time after surgery was quite traumatic,” reflects Amy. “There were a lot of tears. For a while, I couldn’t even look in the mirror after a shower. I know that not having my breasts doesn’t change who I am. But they were still a part of me. I breastfed both my boys. As a woman, I want to look and feel attractive, and because I’m young I decided to go through reconstruction surgery. But I know I will never feel or look the same.”
“Breast cancer therapies have really evolved to improve survival,” says Garber, “but supportive medicine to help these patients deal with long-term side effects and get them back to where they were before treatment hasn’t quite caught up yet.”
The long-term side effects of cancer treatment run the gamut from drastic weight fluctuations to gastrointestinal issues, heart problems, hormone imbalances, and nerve damage, which is also called neuropathy. “I have worked with many breast cancer patients who a few years out from treatment are still dealing with neuropathy, which can significantly impact quality of life,” explains Vaughan-Briggs. “Lymphedema, or swelling in the arm from where the lymph nodes are removed, is also common and affects mobility and ability to carry out everyday tasks, even putting on clothes.”
Vaughan-Briggs suggests that caregivers and friends educate themselves on cancer treatments and recovery to have better perspective and empathy towards what their loved one went through.
What if it comes back? Honestly it’s a question that will always be at the back of my mind – Amy Schimanski
I May Out of the Woods, But I Still Need Support
Many of the patients Vaughan-Briggs works with feel like the support that buoyed them during active treatment, can sometimes wane as they transition into survivorship. “I remember a patient telling me that it felt like everybody had forgotten what she had just gone through,” she says. “Cancer is one of the most stressful and traumatizing experiences a person can go through. It is hard for people on the outside to really appreciate that, so to them the end of treatment may seem like end of the chapter.”
“I didn’t really appreciate this before my diagnosis, and thought that once I’m done with treatment the worst will be behind me,” says Amy. “Yes, the initial shock has worn off, but this new reality and everything it entails settles in deeper as more time passes.”
For some patients, after treatment is when they need the most support, because they’re reintegrating back into their lives and all the stressors that existed before are still there – work, paying the bills, balancing relationships and/or family life, daily routines, and managing self-care – but now without the regular help of a cancer care team.
Garber encourages family and friends support systems to create spaces for open conversation, while keeping in mind that the individual may or may not want to share. “They may feel like they need to vent, but other times they may not want to sit with some of the unpleasant memories or emotions,” he says. “But it’s important that they feel safe expressing what’s coming up for them and asking for support.”
Vaughan-Briggs and Garber often direct patients to support groups to connect them with people with similar lived experience. Indeed, some of the pillars of Amy’s support system are friends who have been through the same thing. “They have been there since day one, along with my family,” says Amy. “I am so grateful to have such a strong support system, which I know not everyone has. If you know someone going through this, check in on them. A small gesture can go a long way.”
I May Be Done with Treatment, But What Happens Next?
“At the beginning, it was one doctor visit and telehealth appointment after another,” says Amy. “Now that I have finished my last reconstruction surgery, I’m out of that whirlwind but it feels a little unnerving to not have that constant checking in.”
“It can be a difficult transition from active treatment to survivorship,” says Vaughan-Briggs. “A patient has so many different eyes on them during treatment, once it is over, it’s like that security blanket is gone and the uncertainty can creep back up.”
Patients are usually given a summary of the treatment they’ve received and recommendations for future screening, and there are educational resources and survivorship related programming offered through patient support services like The Welcome Center.
Still, the steps into survivorship can be a little overwhelming for patients. “I feel like I still have so many questions – what happens at 3 months, 6 months, a year, five years? Do I see the medical oncologist, do I see my surgical oncologist? If I have a question, do I ask them or my PCP? I’m hoping these are things that get figured out along the way,” says Amy.
I am a Survivor, But I’m Still Figuring Out What That Means to Me
Every breast cancer patient goes on an individual journey of survivorship, and identifies with being a survivor in different ways. “On one end of the spectrum, there are those who just want to put their cancer behind them and get back to a sense of normalcy,” says Vaughan-Briggs. “On the other end, there are patients who have integrated the experience into their life’s purpose, and want to share their story and advocate for fellow patients and survivors. Where people are on this spectrum can change over time and circumstance.”
“I think I’m still figuring out what being a survivor means,” Amy ponders. “I see other people sharing their own stories on social media, and I just don’t feel like I’m there yet. I think I’m still just getting used to the idea of having been treated for breast cancer. I recently did a virtual 5K for breast cancer awareness with a few of my closest girlfriends and they asked me if I wanted to set up a fundraiser in my name, and it was just so overwhelming. I didn’t feel ready.”
“A friend who also had breast cancer told me that it might take a year for me to feel like myself again,” she continues, thoughtfully. “A year from now I may look back at all this differently, but for now being a survivor means I am grateful to be alive and I want to be present and spend time with the people I love.”