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.
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.
Over the last few years, and again now that my cancer has returned, many people have asked me if I had any signs of breast cancer before I found the first tumor in my breast. Yes, I did have a few of these signs, and I had pain. Please, remember to do your monthly breast self-exam and watch for these signs.
Medically reviewed by Amy Tiersten, MD — Written by Jennifer Bringle on October 5, 2020
Everyone talks about the importance of catching breast lumps as early as possible. But did you know there’s a host of lesser known breast cancer symptoms that might not show up on a self-exam or mammogram?
According to the American Cancer Society (ACA), breast cancer is the most common cancer in American women, other than skin cancers, and it’s the second-most deadly cancer for women behind lung cancer.
On average, there’s about a 1 in 8 chance that a U.S. woman will develop breast cancer at some point in their life. The ACA estimates that more than 40,000 women will die from breast cancer in 2020.
The most common form of breast cancer is invasive breast cancer, which is any type that has invaded the breast tissue.
Less common forms include inflammatory breast cancer (which is caused by cancer cells blocking lymph vessels in the skin, causing the breast to look inflamed) and Paget’s disease, which involves the skin of the nipple or areola.
With the high rates of breast cancer, the American Cancer Society recommends women have the choice to start annual mammograms at age 40. The organization says women between the ages of 45 and 54 should get mammograms every year.
And while the disease is most commonly discovered by detecting a lump during a mammogram, there are other lesser known signs and symptoms of breast cancer that women should look out for.
According to Marisa Weiss, MD, breast oncologist and founder of BreastCancer.org, discharge that’s bloody or pink and generally only on one side can possibly indicate the presence of cancer in the breast tissue, particularly if it’s persistent.
An enlarged breast — particularly if the swelling is isolated to one breast — or a change in the shape of the breast, can indicate issues within the tissue.
“An unusual shape where the contour is distorted and there’s a bulge in one part of the breast can be a sign of cancer,” says Weiss.
“It could feel like a lump, but it could also just be a region of the breast that feels firmer, and you can’t really feel a lump within it,” she says. “It also often becomes more pronounced when moving in different positions.”
Weiss says it’s important to remember that these signs and symptoms can indicate other benign issues that aren’t breast cancer, but it’s critical to monitor the symptoms and act if they don’t subside.
And for those who’ve already had breast cancer, it can be even more difficult to discern the innocuous from the malignant. In that case, Weiss says it’s particularly crucial to monitor changes in the breasts and alert your doctor when something doesn’t look or feel right.
“You’re always worried about recurrence of a new problem, so the ability to recognize the less common symptoms and signs may be a little trickier,” she says.
It’s sometimes difficult to distinguish between leftover scar tissue from your prior breast cancer. And if you’ve had mastectomy and reconstruction, you could have lumps and bumps in there that are due to scar tissue from all the healing where they removed and recreated your breast, says Weiss.
No matter what, Weiss advises women to pay attention to their bodies and maintain regular self-exams and mammograms. And should they notice something out of the ordinary? Let their doctor know.
Jennifer Bringle has written for Glamour, Good Housekeeping, and Parents, among other outlets. She’s working on a memoir about her post-cancer experience.
I went to see my oncologist today. First, some good news, my blood panel was completely normal today, with no low or high levels on anything! Today was the first time I have had my blood look this healthy in 3 years. Of course, now, that will change somewhat with the meds that I started today. We discussed both meds that I started today, and I asked him a few questions that we thought of after my last visit. So, this is what we discussed and the questions he answered.
The Faslodex is given in two injections because it is a lot of medicine, 500 mg. The drug is very thick, so they must warm it before injecting it. It is administered intramuscularly into the buttocks (gluteal area) slowly (1 -2 minutes per injection) as two 5 mL injections, one in each buttock, on Days 1, 15, 29, and once monthly. Today was day one, so my next three appointments are on April 11th, April 25th, and May 23rd.
My dose of iBrance is a 125 mg capsule taken orally once daily for 21 consecutive days, followed by 7 days off treatment to comprise a complete cycle of 28 days. It is highly important that my doctor keeps an eye on my white blood cell count because this medication can drop my levels to too low, just like infusion chemo did. If my white blood cell count drops too much, he will lower my dose to 100 mg or 75 mg if necessary.
I will have a PET scan every three months to check the progress of the meds on my tumors. If the meds shrink the tumors, we will keep my meds the same. If the tumors are growing, we will change my meds and try something else. The goal is for the tumors to disappear or shrink and then stay that way; at that point, my cancer will be controlled, and I will be in remission.
My questions: How long will I be on these meds? I will be on both meds as long as they are working, indefinitely.
Do I need to do anything special while on these meds? I need to drink 2 to 3 quarts of water every day, get plenty of rest, stay away from large crowds or people with colds because I will be at risk of infection, wash my hands often, and something new this time; I can’t eat grapefruit or drink grapefruit juice.
There are, of course, side effects, as with any medication. So far, I have had a headache tonight, but nothing that Tylenol couldn’t knock out. I had some discomfort from the injections for a few hours after getting them, but that has stopped.
I will let you know how I am doing as I go through my next few appointments.
My husband and I went to see my oncologist on Tuesday to get the biopsy results on my rib. He told us that the results were positive, that there are several cells of cancer located on my rib, and that the mass as a whole is 2.9cm and is located about 1 inch from my spine. I do not have bone cancer; the cancer is not inside my rib. I had absolutely no idea that it was there until a “spot” showed up both on the nuclear bone scan and the PET scan, hence getting the biopsy last week. The cancer cells are similar to the cancer I had before, so it is the same type, breast cancer, so I am diagnosed with Stage 4 Metastatic Breast Cancer. It is metastatic breast cancer because my originating cancer was breast cancer, and it has now spread from the breast to another part of my body.
Once the biopsy results were in, my oncologist and my radiation oncologist spoke and determined that putting me through radiation would not only be challenging to treat but also a waste of time. It is difficult to treat me because I have cancer in two very different areas of my body, my neck, and back. They decided it would be a waste of time because they are convinced that I most likely have cancer elsewhere in my body that is too small to show up in scans. So they decided that we should treat my entire body instead of just the areas where we know I have cancer. Surgery is not an option because there is no point in opening me up when I most likely have cancer elsewhere. Plus, surgery in both areas is quite risky due to major blood vessels, arteries, and the spot on my rib being so close to my spine. So with all of those facts in place, I will be starting medication on Monday.
Stage 4 cancer has no cure. As odd as it sounds, I am lucky that we are dealing with breast cancer because there are many drug choices for treatment, and the medical world is always coming out with new and improved drugs. Why is that? Because breast cancer is the leading cancer in the US, with over 2.26 million cases per year, followed very closely by lung cancer at 2.21 million cases per year. Stage 4 breast cancer ads constantly barrage us on TV, and that is why. Not all stage 4 metastatic breast cancer meds are chemotherapy drugs, but I will be on a chemotherapy drug called iBrance. No, I will not lose my hair while on iBrance, even though it is chemotherapy which I am very thankful for. What is sad about iBrance is that it is $18,000 a month; no one can afford that, so thankfully, there is an aid to apply for to get it free for a year. I will also have a new inhibitor in an injection called Faslodex. These two medications are often paired together with favorable results in killing cancer, keeping it from coming back, and extending life.
It is hoped that iBrance being chemotherapy will kill the cancer in my body, and Faslodex with replace the current inhibitor that I am taking, which is Anastrozole because it didn’t work. The Anastrozole might have kept my cancer from spreading and growing more, but it did not keep cancer from coming back by lowering the estrogen in my system, which is its primary job. I have estrogen-driven breast cancer, so I have to take an inhibitor. I took Anastrozole for two years out of 10 before my cancer returned. My treatment plan is as follows…I will be taking iBrance for 21 days, and then I will stop taking it for seven days, then that cycle will repeat. On Monday, I will start my Faslodex injections, with the first three injections being one injection every two weeks and then once a month after that. In about three months, I will have a PET scan to see if there is any change in the size of my tumors. If the medications are working, my tumors should be smaller; if there is no change, my medication will most likely be changed. If my tumors are persistent, I may have to undergo infusion chemotherapy again, but we will try to avoid that. I don’t have any details about how long I will be on the medications, but I suspect it will be at the very least until having a clear PET scan; but I will find out for sure when I see my oncologist on Monday.
I will post again when I have more information about the length of my treatment and how my first injection appointment went. Take care, everyone!