What I Wish People Knew About Metastatic Breast Cancer
Women with metastatic breast cancer think about fighting cancer very differently than women who dont have a stage 4 diagnosis. If you have advanced cancer, these women understand what youre going through.
The term metastatic breast cancer describes breast cancer that has spread beyond the breast to the bones, liver, brain, or another organ. Even if the cancer is found in another organ, its still referred to as breast cancer and is treated as such.
While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, a lack of information and many misconceptions about this diagnosis persist.
Here are several things you should know about metastatic breast cancer and the women who are living with it.
Immunotherapy And Clinical Trials
Some stage 4 mesothelioma patients may qualify for clinical trials. Clinical trials investigate the value of various treatment combinations for late-stage mesothelioma or may test newer options such as immunotherapy.
In some cases, experimental treatments can help stage 4 patients survive far past their prognosis. These include immunotherapy, gene therapy and other emerging therapies.
A 2016 study published in The Annals of Thoracic Surgery showed photodynamic therapy may improve late-stage mesothelioma survival.
A subset of pleura mesothelioma patients with no cancer cells in their lymph nodes lived an average of 7.3 years compared with the typical one-year prognosis.
Myth #: People With Metastatic Breast Cancer Look Sick And Lose Their Hair
You dont 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.
As NancyHB comments: Id much rather be a poster child for how sometimes we can live with, rather than die from, MBC at least for a while. Instead, I find myself defending against people who are increasingly becoming impatient with my lack of cancer-patient appearance. Im grateful for this time of feeling good, and theyre harshing my buzz.
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 dont feel well.
Shetland Pony notes: If she looks good, she is good. Nope. Many of us suffer from the invisible disability of fatigue. I would venture to say every available treatment causes us some level of fatigue. We struggle to keep up. It may look like we are doing the bare minimum when we are really giving it our all.
JoE777 of Texas adds: The new normals advertised about therapies on TV are deceiving about the side effects. They talk about side effects while women are skipping through life. not looking to show the harsh side effects but think there is something wrong with me that my life is not like that.
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Living With Stage : The Breast Cancer No One Understands
Editor’s note: We’re bringing back this piece from October 2014 for Metastatic Breast Cancer Awareness Day and to honor Jody Schoger, featured in the story. Schoger died of metastatic breast cancer in May. Want to learn more about MBC? Look for our tweets at the Northwest Metastatic Breast Cancer Conference this Saturday at Fred Hutch.
A no-nonsense Texan of 60 years, Jody Schoger* has a very no-nonsense way of educating people about her metastatic breast cancer.
âSomeone will say, âWhen are you done with treatment?â and Iâll tell them, âWhen Iâm dead,ââ said Schoger, a writer and cancer advocate who lives near Houston. âSo many people interpret survivorship as going across the board. That everybody survives cancer now. But everybody does not survive cancer.â
An estimated 155,000-plus women in the U.S. currently live with âmets,â or metastatic breast cancer. This type of cancer, also called stage 4 breast cancer, means the cancer has metastasized, or traveled, through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. Between 20 and 30 percent of women with early stage breast cancer go on to develop metastatic disease. While treatable, metastatic breast cancer cannot be cured. The five-year survival rate for stage 4 breast cancer is 22 percent median survival is three years. Annually, the disease takes 40,000 lives.
Paget Disease Is A Rare Type Of Breast Cancer
- Approximately accounts for 1% of all breast cancers
- Cancer starts in the breast ducts, then spreads to the skin of the nipple, and areola
- Usually associated with ductal carcinoma in situ or invasive ductal carcinoma
- Symptoms may consist of the nipple and areola being: Crusted, scaly, red, bleeding, oozing, burning, or itching
National Breast Cancer AssistanceAccess For All
ABCF makes access to breast health care and services easier for everyone. By eliminating barriers for screenings and increasing the availability of other medical resources, we are helping women and men detect breast cancer at its earliest stage.
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Myth #: Metastatic Breast Cancer Is Curable
Whether metastatic breast cancer is someones first diagnosis or a recurrence after treatment for earlier-stage breast cancer, it cant 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 Wont you be glad when youre 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.
As Breastcancer.org Community member Vlnprh of Wisconsin comments: The vast majority of people have no idea what MBC treatment involves. They somehow think that you will undergo something similar to early-stage patients surgery, radiation, chemo, whatever and then be done. They want to see you as a pink-tutu-wearing cheerleader jumping up and down declaring that you have beaten this disease
Amarantha of France writes: The one I get over and over is, How long will you be on this chemo? I mean doesnt it end sometime? Yes, it ends when it stops working and then we go on to another treatment lather, rinse, repeat I guess until we run out of options.
Dear World You’re Not Going To Have The Year You Thought You’d Have
Her gloom began to lift when she began doing her own research. Loniewska is a Ph.D. toxicologist.She put that expertise to work, and made a welcome discovery.
“I realized that a lot of MBC patients were doing well and the treatments work for a while. And then you switched treatments. You know, there’s always these hopeful stories of people, living five years, 10 years, 15 years.”
Or even more. We all hope to be one of those. But since the 5-year survival rate is just 28% for women and 22% for men, we know many of us won’t be.
There’s a saying in the MBC community: It’s the worst diagnosis, but you meet the best people. I’ve met some good ones. And since a 2020 National Cancer Institute study estimates that 168,000 women in the U.S. are living with metastatic breast cancer, I don’t think I’ll be running out of new friends any time soon.
Correction Dec. 12, 2021
In a previous version of this story, the name of Margaret Loniewska’s daughter was misspelled as Mariana. Her name is Marianna.
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Survival Statistics For Breast Cancer
Survival statistics for breast cancer are very general estimates and must be interpreted very carefully. Because these statistics are based on the experience of groups of people, they cannot be used to predict a particular persons chances of survival.
There are many different ways to measure and report cancer survival statistics. Your doctor can explain the statistics for breast cancer and what they mean to you.
Its Never Too Late To Exercise
Exercise is important for your overall mental and physical health. Since fatigue is often a symptom associated with stage 4 breast cancer, it can help to plan your exercise during your most energetic time of day.
Consistency is key. Its better to exercise in small amounts every day than to follow an extreme pattern of occasional intense activity between long periods of inactivity.
While there are potential benefits to exercise when you have stage 4 cancer, its important to talk to your healthcare provider before starting an exercise program.
Also, your healthcare provider may recommend avoiding public places, like gyms, because of your risk for germ exposure.
Safety is always a concern when you have stage 4 breast cancer. Bleeding and risks of injury are important considerations.
Some women experience balance and foot numbness problems due to their treatments and fatigue. If this is the case, its best to do exercises that put you at less risk for falls. An example could be riding a stationary bicycle instead of running on a treadmill.
There might not be a direct link between exercise and stage 4 breast cancer survival rates, but you can reap other benefits from regular exercise.
For example, it may help you:
- lose excess body fat
- improve your quality of life
- reduce side effects from treatment
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Cancer: Stage 4 Breast Cancer
It was a Saturday on March 2012 when Vickie and her husband were sitting with a friend and his wife at a McDonalds outlet in Hong Kong. Shed had a biopsy the day before and was supposed to call the doctor for the preliminary results. The result of the pathology report changed her life forever that instant. Vickie was initially diagnosed with stage 3B breast cancer. Then cancer was detected in every single vertebrae, both sides of the pelvis, and one rib on January 2, 2013. Her diagnosis was changed to stage 4. Then come July 2013, a new lesion formed in the left hip socket, in a couple of ribs, and in the sternum.
Since the diagnosis, Vickie has had eight chemotherapy sessions. She was revised to metastatic and has been to the infusion center almost every month for her Xgeva shot. With new lesions showing up in her spine and left hip socket, her treatment plans had to be changed and she was in a clinical trial in November 2013. The clinical trial combined an established drug with a trial drug, which could lead cancer treatment into a promising new direction. After the progression of the cancer to the liver in 2014, she was put on a new treatment. The lesions in the hip were more active with the tumor markers slowly creeping up since December, which meant time to yet again change treatment plans. In December 2015, the last oral option available to her failed and she was switched over to IV chemotherapy.
Stage 4 Cancer Survival Rate
A patient whose cancer cells have invaded other organs aside from its origin is said to be in Stage IV cancer, which usually carries a grim prognosis compared to earlier stages of the disease. The five-year survival rate for patients in this stage may depend on different factors such as the type of cancer he has, his overall general health, the type of treatment used and the patient’s will power to overcome the disease. As mentioned above, the five-year survival rate is expressed as the percentage of patients who will probably live up to 5 years after diagnosis of the disease based on research on patients with the same type and stage of cancer. A 60% 5-year survival rate therefore indicates that it is estimated that 60 out of every 100 patients will live for 5 years after diagnosis while the rest will probably die. This is just an estimate and not an exact number, since many factors influence the progress of one’s disease. The following is a summary of the 5-year survival rates of different types of stage 4 cancer based on research:
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Prognosis For Metastatic Breast Cancer
Metastatic breast cancer isnt the same for everyone who has it. According to the National Breast Cancer Foundation, your symptoms at stage 4 will depend on the degree to which the cancer has spread in your body.
Although metastatic breast cancer has no current cure, it can be treated. Getting the right treatment can increase both your quality of life and longevity.
Life expectancy for breast cancer is based on studies of many people with the condition. These statistics cant predict your personal outcome each persons outlook is different.
The following factors can affect your life expectancy with metastatic breast cancer:
- your age
Can Cancer Form In Other Parts Of The Breast
Cancers can also form in other parts of the breast, but these types of cancer are less common. These can include:
- Angiosarcomas. This type of cancer begins in the cells that make up the lining of blood or lymph vessels. These cancers can start in breast tissue or breast skin. They are rare.
- Inflammatory breast cancer. This type of cancer is rare and different from other types of breast cancer. It is caused by obstructive cancer cells in the skins lymph vessels.
- Paget disease of the breast, also known as Paget disease of the nipple. This cancer affects the skin of the nipple and areola .
- Phyllodes tumors. These are rare, and most of these masses are not cancer. However, some are cancerous. These tumors begin in the breasts connective tissue, which is called the stroma.
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What Exactly Is Stage 4 Breast Cancer
In the simplest terms, a stage 4 breast cancer diagnosiswhich is often referred to as metastatic breast cancer or terminal breast canceris the disease in its most serious and life-threatening form, according to the American Cancer Society .
Stage 4 breast cancer refers to the spread of breast cancer beyond the area of the breast and surrounding lymph nodes,Debu Tripathy, MD, professor and chairman of the Department of Breast Medical Oncology, at the University of Texas MD Anderson Cancer Center, tells Health. The more common sites of spread include the bone, lung, liver and brain. Itâs important to note, however, that when breast cancer spreads to another area of the body, like the bones or lungs, it does not become bone or lung canceritâs still breast cancer, according to the National Cancer Institute .
Stage 4 breast cancer is an uncommon initial diagnosistechnically called de novo metastatic breast cancer, itâs only found in 6 percent of all breast cancer diagnoses. Instead, metastatic breast cancer often emerges months or years after someone has already completed treatment for an initial breast cancer diagnosis in an earlier stage.
Myth #: Metastatic Breast Cancer Requires More Aggressive Treatment Than Earlier
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 thats 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 isnt necessarily the mainstay of treatment.
DivineMrsM of Ohio shares her experience: eople in general think we should be hooked up to a chemo IV and looking sickly. When I told one woman I took a daily anti-estrogen pill to combat MBC, she looked at me with pity and sadness like I had no clue what I was talking about. Or that I was making up that I had advanced breast cancer, perhaps as a sympathy ploy or for attention. She even asked, Arent you on chemo? And I worked with this woman for a number of years, she was not a stranger!
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Symptoms Of Metastatic Breast Cancer
The symptoms of stage 4 breast cancer depend on the location of the cancer and where it has spread in your body.
- If breast cancer has spread to your bones, you may notice a sudden new bone pain. Breast cancer most commonly spreads to your ribs, spine, pelvis, or arm and leg bones.
- If it has spread to your brain, you may experience headaches, vision or speech changes, or memory problems.
- Breast cancer that has spread to your lungs or liver usually causes no symptoms.
The main treatments for stage 4 breast cancer are targeted drug therapies that destroy cancer cells wherever they are in your body.
These treatments may include:
- hormone therapy, which stops or slows the growth of tumors by preventing your body from producing hormones or interfering with the effect of hormones on breast cancer cells
- chemotherapy, where drugs given orally or through an IV travel through your bloodstream to fight cancer cells
- immunotherapy, which uses drugs that stimulate your immune system to destroy cancer cells
- a combination of these therapies
The following are the common treatment options for different types of stage 4 breast cancer.