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.

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.

Oncologist Appointment & PET Scan Results

I met with my oncologist this past Tuesday to discuss the results of my PET Scan. I was shocked to hear that I have two tumors in my neck, not just one. I found them early, so they are small, 0.9 x 0.5 cm and 0.5 x 0.5 cm. So small, under 1 cm, that they usually wouldn’t have done a biopsy on them, but I had already gone to my surgeon to have the initial ultrasound and biopsy done and had received the results already. I am happy that I took that initiative and went to see my surgeon as soon as I found the tumors so that I found out sooner rather than later that my cancer had returned.

The spot on my rib is still causing concern; it has been determined that it is a lesion that was not on my previous PET Scan in 4/2019. So with the fact that it was not on the last PET Scan and the combination of findings from the recent PET Scan, they are concerned that it is a solitary bone metastasis. My oncologist ended up ordering a biopsy of my rib after our discussion. So next Thursday, I am going to the hospital to have a biopsy of the lesion done. I will have both a local drug and anesthesia for the procedure. The procedure will take about an hour, and I will be in recovery for about 2 hours as they want to keep a close eye on me for bleeding and excessive pain. Unfortunately, I have to go through this biopsy to know if the lesion is cancer or not because it could change my treatment plan if it is positive for cancer, and I then have two different locations on my body with cancer.

Because I am having the biopsy done this coming week, I cannot continue planning with my radiation oncologist at this time. It is good that she now has the images she needed to determine my scope of treatment and if it is possible to treat the tumors in my neck, but the biopsy results could change everything. The lesion on my rib is on my 8th rib, right under my left breast, so as far as I know, it is located in the previous scope of treatment done in 2019/2020.

So my oncologist and I discussed what would happen if I couldn’t have radiation treatment. As far as my neck is concerned, he doesn’t want me to have to undergo surgery, but it is a possibility that I may have to go that route. When it comes to my rib, he didn’t want to speculate on it much. I asked him if it is common for there to be one tumor in one location when it comes to bone cancer, and he said it is unusual but not impossible.

Yesterday my husband remembered that I had pain in my rib several months ago. While we were discussing it, I remembered that I mentioned it to my surgeon when I saw him for a follow-up appointment in September. I pointed to the location of the pain and told him that I felt a bump there as well. When he felt the spot that was hurting me, he said, “that is your rib,” and I told him that I didn’t realize it was my rib because I had never been able to feel my rib so easily when I weighed much more than I do now. He asked if I remembered bumping into something or hurting it somehow, and I couldn’t recall doing anything like that. So I felt it yesterday, and when I pressed on it, it still hurt, and the bump was slightly more significant. So now that I remember that conversation with my surgeon, I am very anxious to get the biopsy done and meet with my oncologist to discuss the results and what will happen next.

I know this might not be common, but it seems that my body will cause me random pain, and then I find a tumor one to two weeks later. It has happened to me three times in a row, so I can say without a doubt that I will never, ever ignore any pain I might have in the future, especially if it is around my bones. My experiences are listed below; I don’t believe that this is a coincidence anymore.

Pain in my lower neck, to shoulder, to the shoulder blade = breast cancer

Pain from my outer ear, up the side of my head, to the top of my head = breast cancer in the lymph nodes in my neck

Pain in the 8th rib under my breast = most likely more cancer, not sure of the type due to location

I will update again next Thursday, depending on how much pain I am in, or Friday about my biopsy. Thank you for being here!

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.

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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