Melissa Rivera, 47, received her cancer diagnosis at the age of 44 and had a bilateral mastectomy. “I didn’t choose cancer. Am I going to do what society says I should look like?” Rivera asked. “Everyone was assuming I wanted reconstruction. When you choose flat, there isn’t a protocol for that.” Andree Kehn/Sun Journal

Melissa Rivera has mixed feeling about the word survivor.

She may be in remission from stage two breast cancer but she’s not sure if survivor is a term that applies to her, she said. “I may be 65-75% of who I was before,” she said.

Her body still aches every day, she struggles to remember things, she is going through medically induced menopause and she struggles with fear that her illness may return, she said. She has to have hope and faith that she is cancer free.

“Because (doctors) don’t know if there’s like one single cancer cell, you know, living somewhere else in a distant part of your body that could, you know, in the future contribute to a recurrence,” she said. “So, it’s like, how do you live with that heaviness?”

Call it intuition but she knew she had cancer before the lump she found in her breast was even biopsied and scanned, so it was not much of a shock to her, age 44 at the time, when the doctor confirmed the diagnosis in June 2022, she said.

However, she was caught off guard by the hazmat suits providers wore to administer her first round of chemotherapy, as her doctors opted to treat the cancer aggressively first with high doses of the treatment, she said.

A team of providers helped her through surgeries that removed both of her breasts, fallopian tubes and ovaries – basically organs that produced estrogen – along with a partial hysterectomy, she said. She had a team helping her through eight rounds of chemotherapy and 30 rounds of radiation.

The journey through treatment was difficult, she was unprepared for the pain that comes with chemotherapy and radiation, leaving her writhing in bed after the first round of chemotherapy and feeling like she could not do it again, she said. Ultimately, she stuck it out.

“It was that brutal,” she said. “And the only reason why I continued treatment was because of my age. It really was. I’m like, I am too young not to fight. I felt like it’d be too risky for me to try to survive without treatment.”

What the doctors and experts do not prepare cancer patients for is how to handle the impacts and effects left over from the disease, she said. To other people, she looks the same on the outside but she struggles sometimes with the way her body feels.

Though the double mastectomy left her looking a little different on the outside, the changes on the inside have had the most impact on her, she said. The surgeries and treatments have left her with chronic body pain, chronic fatigue, insomnia and a low libido, along with making her susceptible to other health issues such as osteoporosis.

After finishing active treatment in early 2023 and reaching the remission milestone, she now sees her doctors every 3-6 months for bloodwork — far less than the frequency of monitoring she had while in active treatment, she said. She struggles with feeling like there is a lack of support after being closely monitored for so long.

Being in remission does not cure the negative effect cancer can have on a patient’s family and spousal relationships and it does not address the difficulties in dealing with the way a person feels and looks after, or the toll the disease has taken on a person’s mental health, she said.

“Teams need to address it and they need to thread it into the patient’s overall care,” she said. “It shouldn’t stop at treatment. It should be like ‘well once treatment ends, we’re going to follow you for the next year or two into survivorship.’ Get a health coach, get a physical therapist, get a therapist, you know, those things will definitely help people and I know that that level of care is not standardized.”

THE TIDAL WAVE

The team of providers that patients see on a daily or weekly basis become a big support system for them and losing that team of providers can make patients feel uncertain, according to Dempsey Center Oncology Counselor Michelle Hayes. Though not all patients struggle after remission, many do.

Often, cancer patients are so focused on pushing themselves through treatments and doing everything required to fight their cancer they push their emotions to the side, she said.

“They’re feeling like they had to focus so much on the doing, you know, getting to the next appointment, getting to the next treatment, getting to the next lab visit that there wasn’t any time or space really to process what they were going through and to really deal with those emotions and even just identify or have an awareness for what that emotional response might be,” she said.

“And so here comes that tidal wave of emotion that’s sort of landing on them now that the doing is done.”

People who never had a history of anxiety or depression can develop it resulting from their experience with cancer or feeling isolated by cancer, she said.

About a quarter of people who survive cancer have persistent problems, those include anxiety, depression and other psychological and social distress, according to the National Cancer Institute website.

The fear of recurrence is common in the clients Hayes works with, particularly soon after treatment is completed, gradually becoming less prevalent in a person’s day to day life but it can still impact people in long term remission when medical appointments approach, she said.

Communication with family members can be another stressful factor for people in remission, she said. Sometimes family members want to celebrate a positive result or completing treatment but often patients do not feel like things are over.

The Dempsey Center is one of the few places in Maine that provides support services to people with cancer and people in remission at no cost. It offers patients counseling, fitness and nutrition services, support groups, messages, acupuncture and other services outside of their treatments to help them cope and recover.

Finding a new support system can be difficult and often patients need support from several different sources, including family members, other patients in remission and clinical providers like counselors, Hayes said.

Sometimes family members and friends will distance themselves from someone who was recently diagnosed with cancer because they do not know what to say or they are reminded of their own mortality — letting fear get in the way of relationships, she said.

It is a common concern she hears from some of the patients she works with, she said. Patients want their family and friends to know they have cancer but they do not want it to define them. She recommends that family and friends treat their loved one with cancer normally but understand a lot has changed for them.

Fran Stanhope found solace in meeting with others in support groups who had been diagnosed with cancer after her own bout with bladder cancer, she said. She was first diagnosed in 2016, went into remission and then the cancer returned in 2018 before going into remission a second time.

Her husband was one of her biggest supporters through treatment and after but he did not understand cancer firsthand and having access to others who did, helped her cope.

Between the physical changes, including a neobladder, and emotional changes, cancer has changed her in many ways, she said.

She remembers feeling like a “ticking time bomb” soon after her cancer went into remission, she said. She remembers feeling like she was not grateful to be in remission because she could not get out from under her uncertainty and fear.

“It’s not a great place to be in because you do feel a little bit insane and you feel like you’re not being grateful, but you’re also, you still have so much, there’s still so much inside you that just seems too uncertain and scary on top of it.”

Five years into remission and the uncertainty and fear of recurrence has subsided with time, though not gone away, she said.

LEARNING THEIR NEW NORMAL

Stanhope has learned what her new normal is and she has found a voice that she uses to help others affected by cancer, she said. Every year since 2018 she has raised funds for the Dempsey Center.

Now in retirement, her and her husband have a personal goal to visit all 50 states, they only have 11 left, she said. They also will continue to travel abroad.

“I’m not that person that I was before,” she said. “… I’m not ever going to be the same person I was – I hope I’ll be a better person.”

Rivera is still early on in her remission but she still cannot return to work full time and she doubts she will ever be able to work full time again, she said. She also has a hard time doing several tasks in one day, such as taking the dog for a walk and doing the laundry — things she could have managed in one day before her treatment.

Talking publicly about her struggles and journey helps to shed light on some of the misunderstandings that people hold about life after remission, she said.

She feels fear and worry often but is learning how to work herself through it, she said. Sometimes she will talk through her fear with her fiancé, other times she will have a conversation with herself, where she identifies what emotions she is feeling and works her way through them herself — tools she is learning to deal with the uncertainties.

“There’s no better time to put yourself at the top of your list than after a cancer diagnosis or after or through cancer treatment,” she said. “You have to become your number one priority and it has to be a nonnegotiable forever.”