Myths and Misconceptions About Metastatic Breast Cancer

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 best as 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.

Coping With Chemo Brain

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 CHASE received 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.”​

Finding Answers

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.


Lingering Questions

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 C​ell, 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.

CT Guided Biopsy

A few days ago, I had a CT Guided Biopsy of my 8th rib on the left side, on my back. Everything went well; I am in a little bit of pain, but nothing that Tylenol can’t help. The doctor instructed me to rest for the rest of the day on Thursday, remove my bandage on Friday, and resume my normal activities.

After finishing my paperwork in the hospital registration office, I went to the lab to have my blood drawn for a few panels; among a few other things, they had to check my kidney function before doing the CT, and after that, I went to radiology to wait to be taken to the pre-op area.

Once my nurse was done prepping me for my procedure, my anesthesiologist came to get me and take me to the CT room. He explained that he would only give me enough medication to make me relaxed and a little sleepy but not entirely out. He said that if I did get sleepy not fight it and let myself fall asleep. I did fall asleep for some of the procedure, but I don’t think it was for very long because the process only took about 30 minutes.

When I walked into the CT room, they had me lay on my stomach on the CT table. I was shocked to find out that the lesion is actually on my 8th rib on the left side of my back, not in the front, and it is very close to my spine, so that has me a bit concerned. The rib that I fractured some 18 years ago, that I was thinking was what was showing up in my scans, was a few ribs down from where the lesion is located, so it has nothing to do with the lesion at all. So with that said, I don’t know what to expect when I meet with my oncologist next Tuesday to get my biopsy results.

I have had many people ask me what I think of all of this, how I am feeling, and what my gut is telling me. I can’t help but see the similarities to the first time I went through cancer three years ago. With every appointment, things get worse and worse, more scans, more biopsies, etc. As before, I want to know what type of cancer I have to fight against, and I want to get started on whatever treatment plan my doctors and I agree on as soon as possible so I can get this over with and move on.

I am feeling OK so far. Even if the lesion on my rib is positive for cancer, it appears to be localized like the tumors in my neck, so it is not as aggressive as it was in 2019, and because of that, I have been feeling much better physically this time around so far. Mentally I am up and down; the stress is unreal because this is the moment as a cancer survivor that I have been fearful of, having to deal with recurrence.

Lastly, what is my gut telling me? I will be shocked if the lesion on my rib is negative for cancer. After reading the PET scan report and looking up a few medical terms that I had not seen before, I immediately thought that it would be a bad result once the biopsy results came in. I, of course, hope that I am wrong, and in a few days, I will know for sure.

Radiation Oncologist Appointment

A few days ago, I had an appointment with my radiation oncologist. I hadn’t seen her in over two years, so it was nice to see her, but I wish it had been under different circumstances. After we caught up on where we had been, I was finally able to show her the pictures from our vow renewal ceremony, so that was nice, and what we had been doing; we discussed my cancer.

Unfortunately, since the CT of my neck came back clear, she has to wait for the results from my PET scan. She needs to see the exact size and location of the tumor to figure out if she can treat me or not. If there is even the slightest part of the tumor in my previous treatment area, she can’t put me through radiation. I didn’t know that you couldn’t radiate the same area more than once, so we must have clear images to compare from 2019/2020 to today. My PET scan is tomorrow, Friday, and I am going back to my oncologist next Tuesday for the results.

So after my initial appointment, my doctor asked if I could come back in an hour to do some plotting with the tech. I didn’t need to be anywhere, so I said I could come back, no problem. When I came back, they took me to the CT room, measured a few coordinates, and went ahead and marked me with stickers in case I could have radiation soon. When I laid down on the table, my doctor came over and felt where the tumor was, and she said, ” it seems like it is very superficial; that might be why the CT scan didn’t see it.” I hadn’t thought of that being the reason for the clear CT, but it makes sense.

Next, they had me put both arms over my head, which is the position I will have to be in for the radiation treatments. It has been almost three years since my first surgery in April 2019, and it still hurts to have my arms up over my head for any length of time. I have gained a lot of mobility back since that first surgery but not 100%. Because of the pain I am in when in that position, they will make molds for me to rest my arms in so the pain and pressure will be decreased, making me more comfortable. When I put my arms up, my doctor felt the tumor again and said it had dropped slightly in location, taking it closer to the area where I had radiation before; this is not good if I want radiation to be the primary treatment to get rid of the tumor.

So, now we are waiting for my PET scan and the results. What will happen if I can’t have radiation? I am guessing that I will have to have surgery to remove the tumor, but after that, I am not sure. I will be asking my oncologist about that when I see him on Tuesday next week.

Scan Results & My Treatment Plan

So I guess if there can be any good news that goes along with having cancer again, that would be the good news I received today.

There is a spot on one of my ribs in the nuclear medicine bone scan. I am confident that it is from when I fractured my rib ages ago. We need to be sure that it is from my fracture and not more cancer, so I have a PET scan scheduled for next Friday. Something odd is that the CT of my neck came back clear, yet that is where the tumor is located; the CT couldn’t find the tumor that I can feel, crazy! My other CT came back clear, so the cancer is isolated to my neck. I will have to go through radiation, so I have an appointment with my radiation oncologist next Tuesday. She will determine how much radiation I need and if I will need surgery after radiation.

After radiation, I will be put on a new inhibitor because the one I have been on for the last two years didn’t work other than possibly keeping the new cancer from spreading. I will also be going through chemotherapy again, but this time, it will be in pill form, not by infusion, and for at least two years. But the good news is that I will not lose my hair while on the chemotherapy drug.

As far as my diagnosis, I have the same cancer I had before, invasive ductal carcinoma, breast cancer stage 3c. Because the tumor is nearby where the cancer was in 2019/2020, in the lymph nodes in my neck, and it has not spread to my organs, it is still considered breast cancer. Oddly enough, the tumor is on the same side of my body this time as well.

All in all, I am very relieved! I will update you after my next appointment.

I Have Cancer, Again

I received my biopsy results yesterday, and they were positive for cancer. My oncologist’s office called me in the morning and scheduled an appointment right away for today to discuss our next steps.

I was hoping that my oncologist could tell me what type of cancer I have today, but we do not have those results back yet, so I will hopefully know in a few more days. There are a couple of possibilities as far as my treatment goes, but I won’t have a definite plan until scans are done, and the results are back.

On Monday, I will be going to the hospital for a bone scan-nuclear medicine, CT neck with contrast, and CT C/A/P with contrast {ct scan of chest, abdomen, and pelvis.} If there is cancer anywhere besides my neck, we will know for sure once the scans are completed and analyzed.

On Friday next week, I will meet with my oncologist to review the scan results and my treatment plan. I do know that I will most likely have radiation therapy on my neck; anything beyond that will be determined during my appointment.

More to come…

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