Chemotherapy is often associated with nausea and vomiting.
For a long time, they were among the top concerns of chemotherapy patients.
Due to newer anti-nausea medications, they’ve become less of a problem.
Today, patients are more likely to cite socio-psychological factors as the most significant concerns of chemotherapy, according to preliminary results of a study presented at ESMO 2017 Congress.
ESMO is the European Society for Medical Oncology.
The study involved interviews with 141 patients being treated for breast and ovarian cancer.
The most difficult side effects were determined to be sleep disorders and anxiety about how their cancer will affect loved ones.
The patients listed hair loss as a concern at the beginning of chemotherapy, but they were less concerned about that as treatment went on.
Dr. Karin Jordan is chair of the ESMO Faculty Group on Palliative and Supportive Care and senior leading physician at the University of Heidelberg’s Department of Medicine.
In a press release, she noted, “The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think.”
She went on to say, “Physical, psychological, social, and spiritual support is needed at every stage of the disease. Going forward, similar studies also need to be done for other types of cancer — including analyses of how an optimal management of side effects influences the disease trajectory.”
It’s important to note that the study is small, preliminary, and involved only two types of cancer.
But it brings an important issue to light.
The worst side effects of chemotherapy may not be the obvious ones.
Cancer, anxiety, and sleep problems
There are more than 100 types of chemotherapy drugs, each with its own chemical composition and potential side effects.
But chemotherapy may not be the only factor involved in these side effects.
Cancer patients often receive more than one type of treatment.
Also, the psychological impact of a cancer diagnosis itself can cause anxiety and sleep disorders.
According to a 2013 paper published in the European Journal of Cancer (EJC) Supplements, these symptoms have an enormous impact on quality of life, but they are frequently underestimated.
Healthline spoke to three women about their treatment, physical side effects, and the anxieties that won’t let go.
Fear of cancer recurrence
Julie Barthels is a licensed clinical social worker and author of the book, “I’d Rather Love Life Than Hate Cancer.”
She had a year of chemotherapy following a 2010 diagnosis of breast cancer.
“The emotional effects of cancer and chemo are interchangeable for me, and I continue to cope with them,” she said.
Her anxieties aren’t unfounded.
Since the initial breast cancer diagnosis, she’s been treated for basal cell carcinoma, renal cancer, and squamous cell carcinoma. Those cancers were treated without chemotherapy.
“Because I have had additional cancer diagnoses, the fear of more cancer is ever-present. I deal with that anxiety through my own therapy. I have heard from my own therapy patients that they only feel comfortable talking to people with cancer. They report that people in their life just want to forget the cancer ever happened, and this is difficult for them because they are still dealing with the anxiety the cancer will return,” she explained.
Tianna McCormick was diagnosed with Hodgkin’s lymphoma shortly after her 26th birthday. She had six months of chemotherapy.
At the time, she lived with her boyfriend (now her husband) in New York City, two hours away from the rest of her family.
“He was amazingly supportive, but it is difficult not to feel alone during chemo. I had a very difficult time thinking about anything else outside of my chemo world,” she said.
McCormick also lives with fear of recurrence.
“The biggest and scariest concern was, would the chemo work? And if it did, when would it stop working? Would the cancer come back? Since I was so young when I had chemo, my other biggest concerns were wondering if I would lose my fertility, if my hair would grow back, and if I would have long-term side effects at a young age — things like secondary cancers, early bone loss, and possible neuro problems,” she explained.
Only others who are going through it can relate, according to McCormick. She found support in an online community of people with the same type of cancer.
“Having cancer and chemo, though, makes you feel very afraid all the time. It caused me to have a lot of anxiety and depression. You walk around thinking life is amazing and you are somewhat invincible and then in flash, everything changes,” she said.
“Every bruise, every headache, every stumble makes you think ‘cancer’ and ‘I’m dying.’ With every scan and every blood draw, part of you knows it came back, even when the results are clear. Many survivors, myself included, end up with the need for antidepression medication as well as talk therapy. For me, talk therapy helped the most,” said McCormick.
Almost 13 years after her treatment, she continues to wrestle with anxiety.
“I still lose sleep over it. I wonder when it will come back and how I will know. Will I find out before it’s too late? Will I leave my children motherless? Cancer becomes an ever-present lurker, something that is constantly checking in with you,” said McCormick.
At 65 years old, Suzanne Maxey is halfway through a six-month course of chemotherapy for triple-negative breast cancer.
“Besides the physical side effects of the chemo, I am still trying to wrap my head around finding out that I have a very aggressive kind of breast cancer that very likely could return and kill me within a few years, even though my lymph nodes were clean,” she said.
Family and work concerns
Maxey lives in Central America but is staying with family in Texas while in treatment.
“To say my life has been turned upside down would be putting it mildly,” she said.
“I worry about living with my son and his wife and baby, about being a burden to them both financially and by intruding on their home. They have always made me feel welcome, but still, they value their privacy, as do I,” said Maxey.
Barthels was clinical director at a rape crisis center at the time of her breast cancer diagnosis. She also maintained a part-time private therapy practice.
“I had to dial down my time with both of those because of the fatigue and nausea. Relationships were difficult because I was so tired and constantly warned to be careful of catching infections from other people,” she said.
To this day, fatigue is a factor in her life, compelling her to give up her position at the rape crisis center.
“Don’t misunderstand,” said Barthels. “I am grateful I have a career that allows me to work part time. And after 30 years, I still love my job. But I sometimes miss the ‘type A’ personality I had before chemo.”
Lingering physical side effects
Barthels said the short-term effects of chemotherapy were fatigue, nausea, cognitive effects, depression, hair and nail loss, low red and white blood counts, shortness of breath, weight gain, and joint pain.
As is often the case, chemotherapy brought on menopause, adding to her physical symptoms.
Once an athlete, Barthels mourns the loss of the physical activities she once enjoyed.
Despite physical therapy and prescribed exercises, she thinks it’s unlikely she’ll ever return to her pre-chemo strength, endurance, or flexibility.
Cognitive side effects, such as short-term memory problems, continue.
“Luckily, my family and friends are very loving and have a sense of humor about it. I do worry about how this affects me as a therapist. I also have language retrieval issues and typically the words I am searching for are simple words,” she said.
Barthels wishes she had known more about the long-term effects of chemotherapy.
“Many people assume that if you make it through chemo, it is done and cancer is over and you just move on. This scenario is not true for every patient, and it can set you up with expectations that are not realistic for your body,” she said.