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.

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…

Ultrasound-Guided Biopsy: **WARNING: SENSITIVE MATERIAL**

So here we are again, another biopsy, just shy of a few weeks from three years ago when my surgeon did my first biopsy and diagnosed me with breast cancer.

This time I was only in pain when my surgeon gave me the shot of lidocaine. He kept asking me if I was OK because the needle was in for a little bit as he moved it around at different angles to numb the area around the mass. I was facing away from him so he couldn’t see my face for a reaction, so I appreciated him asking me how I was doing multiple times, as it was just another example of what a kind and caring doctor he is.

I had to lay on my right side so he could easily get to the mass because it was at an odd angle on my neck. Since I was lying on my side, I was able to watch the ultrasound monitor and see him put each needle in the mass, collect a sample, then pull the needle back out. As he put each sample into a small container with a tiny amount of saline, his assistant closed each container; there were three in total. He said that the mass is about 1 centimeter, so I hopefully caught it early enough.

All in all, everything went fine. I should have the results back at the latest on Tuesday. I couldn’t help but notice that my surgeon told me that he was taking the samples over to the lab personally, right away. Yes, that did concern me a little, his urgency, and that only made my gut feeling about all of this feel more valid. He also told me that he spoke with my oncologist and that if my results are positive, my oncologist will order the PET scan asap.

Minor bruising today, along with a small hematoma. I am very, very sore, but you would be too if you had four needles poked in you!

My gut feeling is based on these events, are they coincidences? This mass is very much like the first one three years ago in many ways. It feels the same and looks the same on the ultrasound, and there is something else, each time I have had pain in another part of my body before finding a mass. I first had pain in my neck, shoulder, and shoulder blade a few weeks before finding my tumor. I thought I had slept funny, but as the days went by, the pain did not go away. This time, around Thanksgiving, I had terrible pain on the outside of my ear, going up the side of my head to the top of my head. As I said in a previous post, my oncologist ordered an MRI of my head, but it was clear, so we had no explanation for my pain. I was in agony until about two weeks ago when the pain suddenly stopped, and I now have found another mass.

I will update as soon as I have the results…prayers! 💕

Appointment With My Oncologist

When I had my appointment with my oncologist on August 5th, I was hoping that my red blood cell count would finally be in the normal range, but it isn’t quite there yet. I wasn’t too surprised as I have been tired lately and not feeling the greatest. At this point, nothing but time will help, so I am trying to be patient.

I am still having a lot of issues with my memory. It seems like only my short-term memory is being affected, but it is starting to drive me crazy. My oncologist asked me if I am still “fuzzy,” and I said that yes, I am still having issues. So, I am taking a week off Anastrozole to see if it helps clear my head or not.

Once I have my next appointment in December, I will finally be on a different schedule with my oncologist. I will switch from seeing him every three or four months to every six months. I am making progress, and it feels good!

Long Break

Hi, I can’t believe that we are already in July and that it has been over three months since I published a post here! In my defense, I can tell you that I have had a lot going on since the middle of April.

In early May, I started looking for a house to move to because with the housing market going crazy, I was sure that the owner of the house we had been renting for the last six years would want to sell. About a week later, my suspicions were confirmed by a phone call from the owner. Finding a house was challenging because the home would be listed online, and not even 24 hours later, there were multiple applications on it. Right before we were due to leave on vacation, we went to see a house, and it was perfect! At first, we didn’t know if we had gotten it, but right before we flew out of town, we received the news that we had been approved and would get the keys on June 1st after we returned from vacation. So, my time was filled with stress from looking for a house and then getting ready to go on vacation, but it was worth it because we have moved into a house that is perfect for us and our vacation was wonderful!

While on vacation, we renewed our wedding vows on our 17th anniversary, and everything was perfect on our special day! Ocho Rios, Jamaica, is one of our favorite places to relax and reconnect with each other, so why not renew our vows while there. We were supposed to renew our vows two years ago, but between my breast cancer diagnosis and treatment in 2019 and Covid causing the world to stop in 2020, we had to post phone our trip and ceremony until this year.

I will update you with everything that has been going on over a few different posts in the coming days, which will include a huge milestone, a follow-up appointment with my surgeon, and how I am doing these days.

I will be back soon! 🙂

My 5th Surgery: Follow-up Appointment with My Surgeon **WARNING: GRAPHIC SURGERY PHOTOS**

Yesterday, I had my first follow-up appointment with my surgeon. Once the tech was done with my blood pressure check and updating my information, she removed my bandage. She apologized at one point because she was pulling on the bandage a little harder because the gauze was sticking to it. I assured her that she wasn’t hurting me because I was still numb under my arm from my first surgery almost two years ago. I asked her how the incision looked, and she said that everything looked good. She then told me that my surgeon would be in soon to see me and left the room.

A few minutes later, my surgeon walked in. I turned to look at him and noticed that he had a winter coat on. I had been sitting there with half of my paper top on burning up because the heat was on. I laughed and said, “You do know that it is 73 degrees outside, right?”; He smiled and said that for some reason, he is always cold when he is in the office.

I have a ton of steri-strips, about 30, and my incision is about 9 inches long. This is my most extended scar so far, but because of how my surgeon combines internal stitches with steri-strips for healing, my scar will be minimal, and it will become less noticeable with time. The scar on my chest’s right side from the first reconstruction surgery is barely noticeable 17 months later, so I am sure this scar will be the same.

I know it looks gnarly, but I am not in much pain at all.

Once we were done talking about this recent surgery, he said that this should be my last surgery. He is confident that I will be fine from here on out and that I will not require any further surgeries. The only way I would need surgery in the future would be if I develop Capsular Contracture. We are both aware from previous conversations that I could develop that particular complication because I went through many radiation treatments and I have implants. I will need to stay mindful of any changes that I am noticing and let him know. The only way to fix Capsular Contracture is to go back into surgery and have my breast implants replaced, so hopefully, I will never have to deal with that.

I asked him if I can start walking on my treadmill. I told him that I had finally fought off the fatigue plaguing me for over a year and that I was getting back to working out again before this last surgery. He said, “so you are itching to get back on,” to which I replied, “yes, I have been since the day of my surgery!” He said that I could walk on my treadmill, but I can’t swing my arms; I need to keep them at my sides, and I can’t do anything too strenuous. I need to keep resting and healing over the next two weeks, and then I should be released from any restrictions once the steri-strips are removed during my next appointment. I told him that my goal is to lose another 20 lbs or so, and he said that it would be ideal for me to do that as it is essential to keep my body mass low considering the type of cancer I had. Estrogen-fed breast cancer thrives when a patient’s BMI is too high, and mine is too high because I am about 20 lbs overweight. So the best thing I can do for myself to keep from having a recurrence of my cancer is to continue exercising, watch my portions, and what I am eating to get to an ideal weight and BMI.

To end my appointment, I thanked him for doing this last surgery. I let him know that I could feel the difference later on, on the day of my surgery, that the area was gone, my chest looks much better, and that I felt much better. I said, “First, you saved my life, and now you are helping me improve my life. I will never be able to thank you enough.” He looked down and away from me when I said that to him, with an almost bashful look. His reaction at first surprised me, but then it didn’t because his genuine reaction reminded me of why I am so grateful that he is my doctor and how lucky I am that he has been by my side from the beginning. He does not have a big ego like some surgeons; he is passionate about his work, humble and caring, and it shows.

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