Yesterday I had my first three-month PET Scan to see if the iBrance and Faslodex have made any progress in shrinking my tumors and preventing them from spreading. I was not nervous about having the scan done; unfortunately, I have had two of them before now. I am, however, anxious about the results, which I will get on the 18th when we meet with my oncologist. I need to see that they have shrunk or, at the very least, haven’t grown or spread. Seeing progress is everything to me right now because it is so hard to look forward to the future when I don’t know how I am doing.
I haven’t been writing much lately, and I am sorry about that for both my readers and me. Writing in my blog can be very therapeutic, but things have been difficult since I was diagnosed with stage 4 metastatic breast cancer. My moods can vary so much daily, and that, of course, affects everything during my day. Some days I am very optimistic, so I think about future travel and plans, and on others, I worry about my husband and what will happen when I am gone.
I can’t find the words to elaborate on anything more as I am not feeling well. I will write more on Monday or Tuesday next week once I have the results from the PET scan.
I was pretty wiped out when I got home from my appointment on Monday, so that’s why I am just now updating you. Each appointment is usually about 2 hours long, from checking in to leaving, and depending on how I am feeling on that particular day, it can take a lot out of me. Below is an explanation of what happened during those two hours.
When I check in, I fill out a short form with my name, arrival time, if I have been recently hospitalized and if I have changed my insurance. I give the staff my name, birth date, and the short form. The staff person goes into a drawer and pulls a file with two more forms for me to fill out, hands me a clipboard, and they put a hospital bracelet on me. I sit in the waiting room, which is almost always pretty full, so about 16 to 18 people, both patients, and caregivers. The first form is a general form asking about any recent side effects, hospital stays, surgeries, medications, allergies, and what questions I have for my doctor. The second form is a suicide form with a few questions about self-harm and caregiver abuse. It is sad that such a form exists, but it is a reality for cancer patients, especially older patients. I fill out both forms, keep the forms with me and return the clipboard to the check-in area. This process is done every time I have an appointment.
Next, I am called back to the lab area, where I hand the tech my completed and signed forms. They weigh me, take my temperature, blood pressure, and oxygen. The tech then asks me about my pain level and if I am constipated, both common issues while undergoing cancer treatment. Last, the tech draws two vials of blood, puts them in the machine for processing, and walks me to the exam room. To give you an idea of how big this office is, there are eight doctors and twelve exam rooms.
Everything is very efficient, so I rarely have to wait longer than five minutes before my Oncologist’s PA comes in and hands me the results of my blood panels. I see his PA almost every time I have an appointment, and every other time I am there, I see both my Oncologist and his PA. On Monday, the PA said that everything looks good considering the treatment plan I am on. My white and red blood cell counts are a little low, but nothing to be overly concerned about. My ANC is low again but not too low, so hopefully, it will stabilize as I continue my treatment.
The last part of my appointment is when I go back to the chemo treatment room to get my injections. This is generally the longest part of my appointment because the medicine for my injections isn’t ordered from the pharmacy (which is in-house) until my Oncologist or PA has seen me and approved for me to get my injections, which is determined by my blood panel results. Once my nurse gets the injections from the pharmacy, she warms them because the medication is so thick, so this adds on extra time for me to wait, but it is an important step. Once the injections are sufficiently warmed, I am taken into “The Shot Room,” and I am given my injections which take several minutes due to the amount of medication. I mentioned on Monday that I have a lot less pain and discomfort after my injections if they massage the area after taking the needle out. By massaging the site of the injection, they help the medication disperse quicker. My nurse thanked me for letting her know that info and said she would pass the word on to the other nurses. Patients are often scared to speak up about even a minor issue, and it doesn’t need to be that way. I have learned to be very open no matter how embarrassed I might be because I know that after coming to see my oncologist and his staff for over three years, they want me to be open, honest, and, most importantly, not to suffer in silence if something is causing me issues. So please remember, you are your best advocate when it comes to our healthcare system!
So what is next? I started back on iBrance on Monday after having a much easier time on the lower dose. On July 11th, I will have my PET scan to check the size of my tumors. Hopefully, they will be smaller, which means that the medications are working. On July 18th, I will go back to my oncologist’s office for my monthly appointment and get the results of my PET scan. My husband will go with me on the 18th but not on the 11th. Unfortunately, I am used to PET scans now, so he does not need to go with me.
I have had quite a few people reach out to me and ask me questions about my diagnosis of Stage 4 Metastatic Breast Cancer and its meaning. I have also noticed that many people are keeping their distance from me, and just like the first time I had breast cancer, I am sure it is because most people do not know what to say to me, so I feel the need to explain things as bestas I can. I do not want to sugar coat the reality of my diagnosis so this is why I chose this article to share with you. The article does an excellent job of explaining the myths and misconceptions….I hope it helps.
First and foremost, I do not have terminal cancer. But to be clear, there is no cure for Stage 4 Metastatic Breast Cancer; it is advanced and requires more aggressive treatment. Terminal or end-stage cancer refers to cancer that is no longer treatable and eventually results in death. I am currently in treatment with my oncologist taking state-of-the-art medications proven to prolong life and keep cancer from spreading more than it already has. Every three months, I will have a PET scan to check the size of my tumors, and once they have either shrunk or stabilized, I will be in remission. Being in remission does not mean I am cured because there is no cure; I will have Stage 4 Cancer for the rest of my life, so my treatments are indefinite. If my prognosis should change to terminal, I will let you know, but I am not expecting that to happen anytime soon.
Some people tend to think that breast cancer is breast cancer, regardless of stage at diagnosis. In the media, breast cancer is often portrayed as a relatively good type of cancer that can be overcome with the right combination of treatments. But as our Community at Breastcancer.org in our stage IV discussion forum tell us again and again, stage IV, or metastatic, breast cancer — cancer that has spread beyond the breast into other parts of the body, such as the bones, liver, or brain — is very different from early-stage breast cancer. They often need to educate family, friends, neighbors, and coworkers about this reality. What follows are nine of the most common myths and misconceptions about metastatic breast cancer.
Myth #1: Metastatic breast cancer is curable Whether metastatic breast cancer (MBC) is someone’s first diagnosis or a recurrence after treatment for earlier-stage breast cancer, it can’t be cured. However, treatments can keep it under control, often for months at a time. People with MBC report fielding questions from family and friends such as, “When will you finish your treatments?” or “Won’t you be glad when you’re done with all of this?” The reality is they will be in treatment for the rest of their lives. A typical pattern is to take a treatment regimen as long as it keeps the cancer under control and the side effects are tolerable. If it stops working, a patient can switch to another option. There may be periods of time when the cancer is well-controlled and a person can take a break. But people with MBC need to be in treatment for the rest of their lives.
Myth #2: People with metastatic breast cancer have a short amount of time left While some people mistakenly think MBC is curable, at the other extreme are those who assume it’s an immediate death sentence. But there is a big difference between stage IV incurable cancer, which MBC is, and terminal cancer, which can no longer be treated. A person isn’t automatically terminal when she or he gets a metastatic diagnosis. Although MBC almost certainly will shorten someone’s life, it often can be managed for years at a time.
Myth #3: People with metastatic breast cancer look sick and lose their hair “You don’t look sick.” “You look so well.” “Why do you still have your hair?” “Are you sure you have cancer?” These are comments that people with MBC report hearing. But there are many treatment options besides chemotherapy, and people often appear well while taking them. Some people with MBC report that they actually look better than they feel while in treatment. So they sometimes have to let family and friends know that even though they appear fine, they don’t feel well.
Myth #4: Metastatic breast cancer requires more aggressive treatment than earlier-stage breast cancer Related to myth #3 is the notion that because MBC is advanced cancer, doctors have to pull out all the stops to fight it. But that’s actually not the case, says Breastcancer.org professional advisory board member Sameer Gupta, MD, a medical oncologist at Bryn Mawr Hospital in Bryn Mawr, Pa., and a clinical assistant professor of medicine at Jefferson Medical College in Philadelphia. “The goal Is control rather than cure. Think of it as a marathon vs. a 50-yard dash.” Doctors treat earlier-stage breast cancer more aggressively because the goal is to cure it: destroy all of the cancer cells and leave none behind, reducing the risk of recurrence as much as possible. With MBC, the goal is control so that patients can live well for as long as possible. And chemotherapy isn’t necessarily the mainstay of treatment.
Myth #5: If you’re diagnosed with metastatic breast cancer, you did something wrong or didn’t get the right treatment the first time When some people hear stage IV breast cancer, they assume something must have been missed along the way to let the cancer get that far. There is a misconception that breast cancer always develops in orderly steps from stages I to II, III, and then IV — and that there’s plenty of time to catch it early. People with MBC can face misguided assumptions that they must have skipped mammograms or self-exams, or they didn’t control risk factors such as not exercising enough, watching their weight, or eating healthy. But a person can do everything right and still get MBC. Although regular screenings increase the odds of diagnosing breast cancer at an earlier stage, they can’t guarantee it. Another major misconception: If you’re diagnosed with metastatic cancer after being treated for an early-stage breast cancer, you must have chosen the wrong treatment regimen or it wasn’t aggressive enough. But between 20% and 30% of people with an earlier-stage breast cancer will eventually go on to develop MBC — and there’s often no good explanation as to why. And it can happen to anyone. Treatments can reduce the risk of recurrence, but they can’t eliminate it.
Myth #6: Metastatic breast cancer is a single type of cancer that will be treated the same way for every person The label metastatic contributes to the myth that it is one kind of breast cancer. But like earlier-stage breast cancers, stage IV cancers can have different characteristics that will guide treatment choices. They can test positive or negative for hormone receptors and/or an abnormal HER2 gene — the gene that causes the cells to make too many copies of HER2 proteins that can fuel cancer growth. These test results guide treatment choices. Furthermore, treatment choices can depend on a person’s age, overall health, and whether there are other medical conditions present.
Myth #7: When breast cancer travels to the bone, brain, or lungs, it then becomes bone cancer, brain cancer, or lung cancer Not true. Breast cancer is still breast cancer, wherever it travels in the body. However, the characteristics of the cells can change over time. For example, a breast cancer that tested negative for hormone receptors or an abnormal HER2 gene might test positive when it moves to another part of the body, or vice versa (positive can become negative). “Keep in mind that the cancer cells are trying to survive in the body, so they can change,” says Dr. Gupta. “We always emphasize rechecking the biology.”
Myth #8: If an earlier-stage breast cancer is going to recur as metastatic breast cancer, it will happen within five years of the original diagnosis Ninety percent of MBC diagnoses occur in people who have already been treated for an earlier-stage breast cancer. Many people are under the impression that remaining cancer-free for five years means that a metastatic recurrence can’t happen. However, distant recurrences can occur several years or even decades after initial diagnosis. Factors such as original tumor size and the number of lymph nodes involved can help predict the risk of recurrence. For example, a 2017 survey of 88 studies involving nearly 63,000 women diagnosed with early-stage, hormone-receptor-positive breast cancer found that the risk of distant recurrence within 20 years ranged from 13% to 41%, depending on tumor size and lymph node involvement.
Myth #9: The mental and emotional experience of people with MBC is the same as that of earlier-stage patients People with MBC report hearing comments such as, “At least you have a good type of cancer,” “Aren’t you glad so much research on breast cancer has been done?,” “Fortunately you have so many options.” These might comfort people with early-stage breast cancer, who can look forward to one day finishing treatment and moving on — but people with MBC don’t have that luxury. They know they will be in treatment for the rest of their lives. They also know that their life is likely to be shorter than they’d planned. Mentally and emotionally, people with MBC have a completely different experience. “For them, the whole ringing the bell idea [to celebrate the end of treatment] does not work,” says Dr. Gupta. “I have patients who are coming in once a week and have to plan their lives around their treatment. The whole pink brigade idea is very upsetting to them.” Fortunately, more and more people with MBC are speaking up and calling attention to how their experience differs from that of people with earlier-stage breast cancer. People with MBC live with cancer always in the background of their lives, but with new and emerging therapies, many are living longer and maintaining their quality of life.
On Monday, I had my appointment with my oncologist to get an update on how I was doing, run a few blood panels, determine what to do about iBrance, and get my Faslodex injections.
All in all, I have been doing OK over the last month. I didn’t feel better until last week because it took a while for the iBrance to leave my system. I have had ups and downs emotionally because, quite simply, it is hard to deal with having stage 4 cancer. Some days I am upbeat and optimistic, and on other days, I am very depressed and overwhelmed. At this point, I am about 50/50 with those extremes, but I am hoping that I will start to have more good days than bad once my body has adjusted to the medications.
I was very shocked by my blood panel results because of the drastic changes that took place in only one month. My White Blood Cell count went up quite a bit from 2.6 in April to 5.9 on Monday. My ANC was of huge concern in April at .8, but on Monday, it was 3.5. My Red Blood Cell count was still low on Monday, but that was not a surprise because I am fatigued most of the time, no matter how much rest and sleep I get. It amazes me how much the iBrance damaged my body in only one round of medication, 21 days, and how quickly my body repaired itself in the last month while I was off of it.
My oncologist decided to put me back on iBrance but at 100mg, not 125mg. It is clear that the 125mg dose was too much for my body to deal with after seeing the huge changes in my blood in only one month. I should also say here that the first blood panels that were done in March when my treatment started were completely normal for the first time in three years, so this really was a significant change caused by the iBrance 125mg dose. 80% of stage 4 cancer patients are not able to take the 125mg dose, so I am not alone when it comes to having these issues, and I have been assured that studies have found that there is little to no difference in the effectiveness of the medication between 125mg and 100mg. Many of my oncologist patients have been on iBrance and Faslodex for years and have been doing well at stage 4. So on Monday, I started my next round of iBrance for the next 21 days. I have all of the medication I need should I start dealing with side effects again, but as of today, day three, I am doing fine, just dealing with a slight headache.
The longest part of my appointment was getting my Faslodex injections. The process takes a while because they have to order the medicine from the pharmacy, which is right there in my oncologist’s office, and then they warm up the medication to thin it out so it can be injected. I know it sounds terrible, and honestly, it is. I hate getting shots of any kind, but these are worse because they are given in my butt muscle, one on each side. On Monday, I was in quite a bit of pain once I started walking to my car, so once I got in, I sat there for a few moments to gather myself before driving home. I continued to hurt as the evening wore on, so I took a few extra-strength acetaminophen, which thankfully gave me the relief I needed.
My next appointment with my oncologist is scheduled for June 20th. I am fully in my monthly schedule now, so the only change from how my appointment went this month will be when I have my PET scan done. Because I had to take this past month off from iBrance, I will not have my next PET scan until July. I wish it were sooner, but I have to take iBrance for three months before getting the scan so we can see what progress the iBrance has made on shrinking my tumors.
I want to say a huge “thank you” to my family and friends that have been taking the time to contact me and ask me how I am doing. It really helps me, especially on my bad days, to be reminded that more people care about me than I realize. Bless you, and thank you for continuing to support me through this difficult time! 💕
I had an appointment with my oncologist on Monday to run my blood panels, talk about my side effects and get my third round of Faslodex injections. I spoke with the PA first about the medications I had picked up at the pharmacy over the last week for nausea and heartburn. I assured her that both were working great, so I was finally getting some relief.
My oncologist came into the exam room and handed me my blood panel results, and it was not what I expected. I knew that certain levels would be off but for them to be where they are after only three weeks on iBrance was a shock. My white and red blood cell counts are low, not dangerously low, but lower than we would like, and my ANC is low. ANC, Absolute Neutrophil Count, is the “infection-fighting” count. My count is .8, and the low end of normal is 1.25, so I am at high risk for infection. I need to stay away from crowds, busy restaurants, and people who have a cold or the flu because I could end up in the hospital with an infection and become severely ill.
After taking in the initial shock of this news, my doctor said he was very concerned, so he told me to stop taking iBrance for the next month. The break in taking the medication should give my system a chance to get back to normal levels. I had already received this next round of drugs from Pfizer because I was scheduled to start back on it after a week off a few days ago on Monday. We did discuss dropping my dose from 125mg to 100mg, but we will only do that if my bloodwork doesn’t improve. So, for now, he told me to hold on to the meds, so I will have them to take again starting on May 23rd.
Once I was done discussing everything with my doctor, I went back to the infusion room to get my Faslodex injections. Have I said how much I hate injections? I absolutely hate injections, but that is the only way this particular drug is administered, so I don’t have a choice. It seems that each time I have the injections, I have different side effects from them. Generally, I deal with headaches, bone pain in my hips, and, as with this last time, pain from the medicine itself. I have a small area on the left side near the injection site that is causing me some pain, but it has improved each day. Some good news is that I am done with the initial three doses, so now I will have the injections monthly instead of every two weeks.
During my next appointment on May 23rd, I will see my oncologist, have my blood panels run, and get my Faslodex injections. This will be my regular schedule moving forward every month for an indefinite period of time.
Chemo brain is a condition that many cancer patients deal with during and often after treatment. Not only can chemo treatments cause this condition, but also radiation, surgery, and immunotherapy. Being a cancer patient that has gone through 16 chemo treatments, 25 radiation treatments, and 5 surgeries, all within about 22 months, I can absolutely say that in my case, all of these factors combined took a toll on my physical and mental health as well as my memory and my ability to think clearly. My last surgery was one year ago, and I still have memory issues, but I have learned how to live with it by making a few changes in how I organize my life. This subject is something that I have been reluctant to write about, but now that my cancer has returned, I feel that it is time to post an entry about my experience so I will do that soon.
by Stephen Ornes
Many cancer patients have problems with memory or thinking that can linger for years after treatment. The cause is a mystery, but new tactics are helping many people cope with its effects.
BEFORE MEGAN-CLAIRE CHASEreceived her first round of chemotherapy in October 2015, her oncologist told her that side effects of cancer treatment could include some memory loss. “They said, ‘You might get a little forgetful. It will probably be minimal. Don’t freak out,’” she says. Chase, who was single, 39, and working in radio advertising in Atlanta, didn’t think much about it at the time. She was more concerned with treating the tumor and managing other unwelcome complications that cancer introduced to her life.
Chase had already seen her routines upended. A month earlier, she had discovered a large mass in her left breast and unusual bruises nearby. A diagnostic mammogram and biopsy led to a diagnosis of stage IIA invasive lobular breast carcinoma, which originates in the milk glands of the breast and invades nearby tissue before spreading to lymph nodes. Over the next few months, she would undergo 16 treatments with chemotherapy and 33 with radiation. During that time, she noticed a diminishing ability to think, reason and remember things.
She first noticed a problem with memory after her second round of chemo, when she was already feeling nauseated and losing her hair. She had gone to a store to pick up groceries. When she arrived home, she reached to take her purse from the car—only to find it wasn’t there. She stood, completely astonished, for a few seconds. Then she panicked and raced back to the store parking lot, where she found the purse untouched in the shopping cart.
“That was my first moment of dealing with chemo brain,” Chase says. She hadn’t simply forgotten the purse; this experience was something more than forgetting. “I literally had no memory of it. It’s not like I got stressed and forgot and remembered. It was just gone, like a void. It’s deeper than forgetting.” She suspects the only reason she realized the purse was gone was because she physically reached for it and had nothing to grab, not because she remembered leaving it behind.
The bedeviling, exasperating phenomenon that Chase describes goes by many names. Chemo brain. Brain fog. Mental fog. Chemo fog. Researchers who study it and doctors who see it in their patients call it cancer-related cognitive impairment, or CRCI. (Less often, it’s labeled cancer-related neurocognitive dysfunction, or CRND.)
Up to three-quarters of people treated for cancer experience cognitive problems that can be described as CRCI. Symptoms include forgetting words, names and dates. Some patients report being unable to follow conversations or control their emotions. Once-avid readers find themselves unable to maintain focus to the end of a chapter. “If they do get through it, it may be hard to remember what they just read,” says Natalie Kelly, a neuropsychologist at City of Hope Comprehensive Cancer Center in Duarte, California, who works with patients to identify problems with CRCI and map out coping strategies. Chase says that soon after her scare at the store, she became much less efficient at multitasking, which was a critical part of her job. She began to doubt herself.
For more than a third of people treated for cancer, CRCI symptoms persist for months or even years after treatment, in varying degrees of severity. In some cases, says Kelly, the cognitive troubles may subside, but stress can exacerbate symptoms. Serious symptoms are most often associated with chemotherapy, but chemo isn’t the only culprit. Patients who undergo radiation, surgery or immunotherapy have similarly reported cognitive difficulties.
CRCI poses a formidable puzzle. It has no formal diagnosis or treatments approved by the Food and Drug Administration (FDA). Researchers don’t yet know which patients are most vulnerable to CRCI, or why cancer treatment triggers CRCI at all. “It’s a complex problem,” says neuroscientist and cancer biologist James Bibb at the University of Alabama at Birmingham Heersink School of Medicine and O’Neal Comprehensive Cancer Center. “Every cancer is different, every patient is different, and every treatment is different.” Not surprisingly, every experience with CRCI is also different.
Yet there are recent signs of progress in understanding and treating the condition. “There’s a noticeable interest in what we can do to limit the neurological effects that some patients experience,” says Bibb. Researchers began to seriously study CRCI starting in the 1990s, says clinical neuropsychologist Nicolette Gabel at University of Michigan Health in Ann Arbor. The past two decades have brought increased attention to CRCI, not only among patients who share stories of lost keys and missing words, but also among clinicians and researchers looking for its biological causes and developing successful coping strategies.
“It’s not an uncommon problem,” Kelly says, adding that adopting lifestyle modifications—especially with the help of a trained cancer rehabilitation specialist—may compensate for the daunting mental challenges posed by CRCI.
Living Longer, Facing CRCI
Bibb says the increased attention on CRCI is a byproduct of significant progress in treating cancer and keeping people alive longer. The overall five-year survival rate for people diagnosed with cancer in 1980 was about 50%, according to data from the National Cancer Institute. By 2017, that overall rate had climbed to nearly 68%. Experts usually attribute the rise to early detection, improved treatment and smoking cessation. They also caution that the overall statistic smooths over important details. Survival rates are lower in Black populations and vary by cancer site. Dismal pancreatic cancer survival rates have barely budged in 50 years, while prostate cancer’s five-year survival rate is now close to 100%, for example.
What’s clear is that people are living longer with cancer. As a result, they are more likely to grapple with long-term effects of the disease and its treatment, including CRCI. “Cancer itself used to be the main issue, but now survivability and survivorship have become equally important,” says Bibb.
For Chase, the missing purse was the first of many instances she chalks up to CRCI. During chemotherapy and then radiation treatment, the problems snowballed. “I couldn’t remember how to do certain tasks at work that used to be second nature,” she says. “I had an inability to participate in conversations with people at work, and I wouldn’t remember full conversations with my mother. She would say, ‘You told me that 15 minutes ago.’” The mounting uncertainty led her to leave her job in radio advertising and find less stressful work.
Chase’s experiences also drove her to develop coping strategies, sometimes with the help of her therapist, who was an oncology social worker. “Any cancer patient needs a therapist,” she says. “Mine has the knowledge of what a cancer patient goes through and can provide guidance to help.” She also started writing a blog, called Life on the Cancer Train, to keep a record of her experiences and used social media to reach out to other people with CRCI to collect anecdotes for her writing. A common thread emerged among all the stories she heard: Everyone with CRCI suffered acutely from self-doubt, she says. How can a person trust their own mind when it keeps failing them?
Chase began to write down everything she needed to get done and set reminders on her phone. She also read long magazine articles out loud to herself. “It forced me to read words and concentrate,” she says. At first, she could only manage a few minutes of reading aloud, but over time her attention span grew. “It really helped strengthen my short-term memory.” Eventually, years after her treatment regimen had ended, she reached a point where she no longer had to write everything down. (“I still write down the super-important stuff.”)
Chase says she received little guidance from her health care providers about how to navigate the post-treatment fog. “It’s wonderful that they kept me alive,” she says. “But after, I felt like they just threw me out in the middle of the ocean with no life jacket.”
Gabel, at University of Michigan Health, says Chase’s experience is common. She recently led an analysis of existing studies and surveys focused on CRCI, and the group published its findings in Current Physical Medicine and Rehabilitation Reports in July 2021. The analysis revealed that many different symptoms that patients notice can be measured, and that these symptoms are often noticed as treatment progresses. The analysis also reported that patients can become distressed when they notice changes in the way they think, reason or behave.
“Educating patients about the risk for CRCI needs to be more of a strategic implementation at the beginning of cancer care,” says Kelly at City of Hope. “With more survivors, which is wonderful, there are more people living with the effects of treatment who want to understand how to live their best lives and move forward with their goals, even in the midst of experiencing cognitive issues.”
Many hospitals and cancer centers offer resources. These may include consultation with a trained neuropsychologist after treatment ends. The consultation usually begins with an evidence-based evaluation that can help guide the creation of an individualized treatment plan. The evaluation helps identify and measure the severity of cognitive impairment, including learning and memory tasks.
“We identify any factors that may contribute to CRCI,” says Gabel. “What makes it harder for patients? Insomnia, pain, other factors can get in the way.”
The resulting plan, based on evidence from existing studies, may include cognitive rehabilitation, in which patients work with trained therapists on interventions that can help create compensatory strategies to improve mental skills. (The same interventions are often used to help people with traumatic brain injury, stroke or other neurological impairments.) It may also include recommendations for lifestyle adjustments that could help reduce stress, which is known to trigger the effects of CRCI.
Exercise may help. Studies have shown that people with cancer who exercise regularly report less fatigue. More recent investigations suggest that exercise may help ease some CRCI symptoms, though more research is needed. Other studies have suggested improvements from cognitive behavioral therapy or from mindfulness-based activities. (See “Strategies to Manage Cognitive Impairment” below.)
Although no medications have been approved by the FDA to treat CRCI, recent studies have investigated whether psychostimulants (like methylphenidate) or anti-dementia drugs may offset the symptoms. These studies have reported promising results, but they are limited by small numbers of participants and inconsistent study parameters. They don’t reveal, for example, which patients are most likely to benefit from treatment. More evidence is needed before clinicians can recommend specific drug treatments, says Kelly.
Strategies to Manage Cognitive Impairment
Cancer-related cognitive impairment has no definitive diagnosis or treatments, but patients can use techniques to better cope with the condition.
According to the National Cancer Institute, nearly 17 million people in the United States are living with cancer or have been diagnosed in the past. Three-quarters of them—almost 12.8 million—likely experience problems with memory or thinking resulting from treatment. Sometimes the symptoms resolve, sometimes they persist, and sometimes they worsen in times of stress.
The condition, called cancer-related cognitive impairment (CRCI), has no definitive diagnosis and no treatments approved by the Food and Drug Administration, but there are strategies to better cope with its effects. These include:
Writing. Note everything to help remember important tasks.
Reading. One patient who received extensive chemotherapy and radiation regained a longer attention span by reading out loud.
Asking for help. Your oncologist at the hospital may refer you to a neuropsychologist, who can assess the severity of CRCI and recommend coping strategies.
Moving. Establish a regular regimen of physical activity.
Talking. A trained mental health provider such as a psycho-oncologist can help you process the emotional tumult brought on by CRCI.
Despite decades of studying CRCI, much work needs to be done, says Gabel. She and other researchers are now working to improve neurological assessments. “One of the difficulties has been to understand the correlation between what patients are noticing and what we are measuring,” she says. “Patients report much more severe symptoms than what we can capture on assessments.”
Then, there is the mystery of CRCI’s neurological origins. Although lab and animal studies suggest that chemotherapy alters cells in the brain and central nervous system, understanding of the exact biological process is incomplete, which makes it hard to treat.
There are some hints to what’s going on, though. Some researchers are looking for answers in the microbiome—the collection of bacteria, good and bad, found in the body. A January 2022 study in the European Journal of Cancer reported that treatment with probiotics prevented CRCI in patients with breast cancer.
Bibb says the development of CRCI likely spans many systems within the body, but his work focuses on the mechanistic effects in the brain and the possible influences of the immune system as well. “I think that we are altering brain function directly through potential neurotoxic effects of the drugs but also indirectly through the effects of chemotherapy on the immune system,” he says.
He points to a study on mice, published in January 2019 in Cell, in which researchers from Stanford University found that treatment with methotrexate, a chemotherapy used to treat many kinds of cancer, changed important immune cells in the brain called microglia, which in turn disrupted other processes in the brain. Microglia play a variety of roles, including breaking down dead or dying cells.
More recently, in August 2021, Bibb and his colleagues published a study in ACS Chemical Neuroscience that identified regions of the brain and biological processes that were disrupted when mice were treated with two common chemotherapies, cisplatin and gemcitabine. Those disruptions, Bibb says, correspond to changes in brain signaling and inflammation in the brain. He cautions that the study was done in mice, and findings in mice don’t always translate to benefits for people, but it does suggest a way forward in understanding the consequences of chemotherapy for the brain.
Bibb believes that research will lead to a treatment for CRCI. “I absolutely see it as targetable,” he says. “We may be able to provide drugs that can prevent those effects or add a therapy that compensates for the indirect causes.”
Chase says that in the six years since she ended chemotherapy, her symptoms have partially subsided, though “I’ll never be at 100%.” One thing she learned, however, was the value of identifying her passions and interests, and finding ways to cultivate them. For her, that meant trying to get back on the stage. “My love of theater has always been there.”
In 2021, she enrolled in a six-week class at Alliance Theater in Atlanta. The class culminated in a performance of a two-person scene before an audience. To her surprise, she found that she could remember previous experiences in dramatic performances—where to move during a scene and how to memorize lines, for example. The night went off without a hitch. (Well, almost: At the last minute, Chase had to change roles, but the audience was none the wiser.)
“It was such a personal victory,” she says. “I didn’t know how much time and therapy and confidence it would take to believe in myself again. At the end of the day, all of those side effects, and cancer, can’t take away the essence of you.”
Stephen Ornes, a contributing writer to Cancer Today, lives in Nashville, Tennessee.