The Advocate Steps Up
She didn’t start out as an advocate for Black patients with cancer. Jamil Rivers was a breast cancer patient herself, and doing well. Other patients would drop by the chemo infusion room and ask her for advice.
“They were saying, ‘Hey, you seem to be doing OK. You know, can you share what you know?’ And then it just kind of grew from there” into a nonprofit Rivers founded, called the Chrysalis Initiative.
“I would always hear that the reason why Black women were dying at such a higher rate from breast cancer was social and biological differences and poverty and all these different rationales,” Rivers says. “But then, as I started finding out more, I found that the biggest contributor was actually the racism.”
Staying As Healthy As Possible
People with metastatic breast cancer are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. In addition, it is important to have recommended medical checkups and tests to take care of your health.
Regular physical activity can help with your strength and energy levels. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Cancer rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible. Learn more about cancer rehabilitation.
The next section offers Questions to Ask the Health Care Teamto help start conversations with your cancer care team. Use the menu to choose a different section to read in this guide.
What Should I Ask My Healthcare Provider About Metastatic Breast Cancer
If youve been diagnosed with metastatic breast cancer, ask your provider:
- What are my treatment options?
- What is my prognosis?
- What side effects can I expect?
- Will complementary therapy help me feel better?
- What if I want to stop treatment?
- How can I feel my best during treatment?
A note from Cleveland Clinic
Metastatic breast cancer is advanced breast cancer. Providers classify it as stage 4 breast cancer. It happens when cancer cells, often left behind after previous breast cancer treatment, start to spread to other parts of the body. While there is no cure for metastatic breast cancer, treatment can prolong your life and help you feel better. There are many medications available, so if one treatment isnt working, your care team can try a different approach. If you notice any symptoms or dont feel your best, especially if youve undergone breast cancer treatment in the past, talk to your healthcare provider.
Last reviewed by a Cleveland Clinic medical professional on 04/14/2021.
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Metastatic Breast Cancer Is Terminal
Metastatic breast cancer cant be cured and it is terminal. One thing I didnt know when I was first diagnosed is that breast cancer can only kill you if you have metastatic breast cancer, says Rosen, who explains that if your cancer remains in the breast, the tumor can be removed, but metastatic means it has spread outside the breast.
MBC is almost like a different disease than early-stage breast cancer, adds Ann Silberman, 60, from Sacramento, California, who was diagnosed in 2009. We are going to die. Our concerns are much different from those of a person who has a treatment that will be over . Someone in an earlier stage may worry about losing their hair which is understandable but they will return to their normal life at some point.
People with metastatic breast cancer expect to be on treatment for the rest of their lives. I dont think everyone understands that, Silberman says. I still get, When will your treatment be over? Well, its never going to be over.
Coping With The Shock Of Diagnosis
A diagnosis of secondary breast cancer often comes as a very big shock.
In the days or weeks after your diagnosis, you may feel in turmoil and find it hard to think clearly.
You may experience many different emotions, including disbelief, denial, shock, anger, fear, numbness and helplessness. Your emotions may swing from one extreme to the other or change from one day to the next.
Many people go through this stage before reaching a point where theyre able to start taking some control of their situation. However difficult it may seem, you can have some control over how you manage the illness and deal with the emotional and practical issues it brings.
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Treatment For Metastatic Cancer
There are treatments for most types of metastatic cancer. Often, the goal of treating metastatic cancer is to control it by stopping or slowing its growth. Some people can live for years with metastatic cancer that is well controlled. Other treatments may improve the quality of life by relieving symptoms. This type of care is called palliative care. It can be given at any point during treatment for cancer.
The treatment that you may have depends on your type of primary cancer, where it has spread, treatments youve had in the past, and your general health. To learn about treatment options, including clinical trials, find your type of cancer among the PDQ® Cancer Information Summaries for Adult Treatment and Pediatric Treatment.
Meeting The Challenges Of Stage Iv
- To understand your situation, you may want to get a second opinion. Many people find that it helps to get an opinion from another oncologist, and many doctors encourage it.
- Your doctor can help you cope with cancer symptoms and treatment side effects. For example, if you have pain, your treatment might include surgery to remove a tumor in a painful area. Your doctor might also prescribe pain medication or anti-nausea medication
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Treatment For Advanced Breast Cancer
Treatment of metastatic breast cancer aims to control the growth and spread of the cancer, to relieve symptoms, reduce pain, and improve or maintain quality of life.
The treatment recommended by doctors will depend on which treatments are likely to control the breast cancer and what side effects the person can cope with. Treatment options may involve:
How Patient Advocacy Has Helped Me Find Purpose
One of my passions is helping others and sharing my perspectives on life. You never know who it may impact. Advocacy work is a part of my quality of life because I want to be that voice for those who may not have the courage to speak up on something that is or isnt right. Representation matters. I represent for the young, the Black women, the underserved, the nurses, and the Army spouses. I am an ally for the LGBTQ+ community, the men with breast cancer, and anyone else I meet who I support their ideals. I try not to lose hope even on the bad days. I have my bad day and move on. I dont waste precious time focusing on things I cannot control. Instead, I focus on what I can control.
If you feel something, say something to your provider, even if you think its nothing. Nothing is more detrimental to my quality of life than having uncertainty and anxiety. So dont be afraid to speak up.
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The Psychological Impact Of Uncertainty
Although newer therapies can help some patients live longer, clinicians cannot predict how long a treatment is going to be effective for an individual patient. The psychological impact of this uncertainty on patients and their loved ones was a theme of the meeting, said Dr. Temel.
Jamil Rivers, who was diagnosed with metastatic breast cancer 3 years ago at age 39, spoke at the conference about the uncertainty of living with the disease.
After being diagnosed with metastatic breast cancer, Jamil Rivers started the Chrysalis Initiative, a nonprofit that helps women of color with breast cancer.
When you learn that you have metastatic cancer and see the survival statistics, it can be overwhelming emotionally, said Rivers. And if youre living with metastatic cancer, youre living from treatment to treatment, from scan to scan.
Rivers said that her latest imaging scans had not shown any tumors. But I still have metastatic cancer, she explained. I have to be on some type of treatment to keep that cancer at bay so that it doesnt grow and wreak havoc on my body.
Rivers also described financial challenges related to cancer. She did not tell her employer about her diagnosis so that she could maintain her salary and her familys health insurance, which was through the employer. She continued to work for the year that she received chemotherapy.
You Will Be Surprised At How Quickly You Adapt
Nothing can prepare you for the shock of being told this news. From the moment you wake up to the moment you go to bed, for the first few months its all you can think about.
However you might feel now, you will not die tomorrow. You will have time to get used to this new normal Now is the time to be gentle on yourself. Trust me, you will smile and laugh again. You will find the joy in life that those without this diagnosis do not know.
If you find solace and a sense of control by changing your eating habits and exercising, then do it. But do not feel guilty if you cant. For the first year I drank a lot and ate terribly but Ive been stable for four and a half years. Dont beat yourself up about this.
Do not give up hope. I felt so broken and was so envious of those around me. The thought of being in treatment forever is overwhelming. You will be surprised at how quickly you adapt and build your life around it.
Take one day at a time and don’t lose hope. This is a path that you cant imagine being able to walk down. But you will. You are stronger than you think. Dita
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It’s Ok To Scream Cry And Feel Fear Or Sorrow
This will pass. You are not going to die tomorrow, next week or next month. Life will get better, I promise.
In the meantime, a tip: To get you over that hump, ask for whatever chemical help you need. If you’re in pain, get it controlled. Having trouble sleeping? Ask for sleeping pills. Depressed? Get meds.
It’s not necessarily for forever, and there’s no reason to be stoic about anything. pajim
Living With Stage 4 Breast Cancer
Metastatic breast cancer affects people in different ways. Some women who are diagnosed with metastatic breast cancer may experience a reduction in their overall health as a result of disease progression and/or the resulting side effects of their treatment. If you are experiencing any symptoms that concern you or if symptoms get worse, it is important that you discuss these with your doctor. In addition, while there is no strong evidence that a special diet will improve the prognosis of metastatic breast cancer, healthy lifestyle choices can help you to feel your best, manage symptoms and improve your overall wellbeing.
Many women also find the uncertainty of their situation difficult to manage. Some people cope best by living in the present and not thinking too much about the future. Other people prefer to plan ahead, which gives them a greater sense of control. The best approach is the one that works best for you.
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Cancer Doesn’t Have To Scare You Out Of Enjoying Life
Try not to analyze too much or think about the past and what might have caused your cancer, as that is futile now. At first, its bewildering and theres a lot to learn in a short time, but just take it one step at a time.
There are a lot of stages to go through before you start to realize that life can be good. I know that from where you are right now that might seem strange, but for me, having stage IV cancer with extensive bone mets has focused my mind to what really matters in life.
Don’t blame yourself. You did nothing wrong. This is just rotten bad luck.
Learn to be selfish. And by that I mean learn to put yourself first. A lot of women go through life making themselves their last priority. For me, getting sick has taught me that I was there for everyone but myself and that had to change.
Take it one day at a time. Don’t look at the future, just take your tablets, turn up for appointments, and between those times find things that make you happy and concentrate on those.
Live in the moment. Each moment is a gift. Appreciate what you have. Don’t focus on what you’ve lost.
This is a lot to process but, believe me you will find that having cancer, frightening as the diagnosis is, doesn’t have to scare you out of enjoying life. Leapfrog
When Is The Right Time To Use Hospice Care
Many people believe that hospice care is only appropriate in the last days or weeks of life. Yet Medicare states that it can be used as much as 6 months before death is anticipated. And those who have lost loved ones say that they wish they had called in hospice care sooner.
Research has shown that patients and families who use hospice services report a higher quality of life than those who dont. Hospice care offers many helpful services, including medical care, counseling, and respite care. People usually qualify for hospice when their doctor signs a statement saying that patients with their type and stage of disease, on average, arent likely to survive beyond 6 months. More information about hospice can be found below in the Related Resources section of this fact sheet.
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Our Advice To Other Women With Metastatic Breast Cancer: Be Nice To Yourself
Give yourself a break! is the advice that Sendelbach offers. Stop negative self-talk about what you should have done but didnt do, she says. If you have MBC, you need to be kind and loving to yourself.
The body has only so much energy to offer per day, and managing metastatic breast cancer requires a lot of it. So it doesnt make sense to try to compare what youre able to do with what your cancer-free friends are accomplishing.
Just getting through the day can be hard, Sendelbach says. Getting rid of those not good enough feelings can lift a huge weight off you.
Palliative And Supportive Care
Palliative and supportive care focuses on symptom control and support. Its an extremely important part of the care and treatment for many people with secondary breast cancer and can significantly improve quality of life for them and their families.
People often think of palliative care as being associated with end-of-life treatment. However, many people value having it at any stage of their illness, alongside their medical treatment, to help prevent and relieve symptoms such as pain or fatigue. It can also help with the emotional, social and spiritual effects of secondary breast cancer.
You can be referred by your specialist team, GP or breast care nurse depending on your situation. Some people may be able to refer themselves.
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You May Not Know Im Sick By Looking At Me
I may look perfectly healthy, but Im sick, says Silberman. Treatment is hard. I sleep a lot. I still travel, but its difficult. I just visited a friend in Utah for four days, and it wore me out for two weeks.
Just because someone doesnt look like she has advanced-stage cancer, she can be very sick. It can be an invisible illness, says Silberman. You tell somebody you have cancer, but if you have hair, sometimes they dont believe you.
Where Did Everybody Go
Tiffany Hawkins is 52 years old, and says she’s always been a fighter. She was diagnosed with MBC in 2017.
“The doctors are truly amazed at how long I’ve been going. I’m spoiled I almost forgot that I had this.”
It’s all the more surprising because Hawkins has triple negative MBC, which means you can’t treat it with hormonal therapy, as you can with most Stage 4s. It’s most common among Black women, like Hawkins, and the death rates are higher in this group than for any U.S. racial or ethnic group, at 26.8 per 100,000 annually.
But lately her tumors have been progressing.”From maybe less than a centimeter to five in like a month,”says Hawkins.
Meanwhile, as her cancer has grown, she notices, her friends have been dwindling away. She has two grown sons, and they’re supportive, but her boyfriend of 5 years ghosted her. Other friends have stopped calling.
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Recognize Your Feelings And Concerns
Talking about fears and concerns is important, even when treatment is working well. Tell your health care team about emotional symptoms. People may live for years with metastatic cancer. Your doctor can help you have the best quality of life possible during this time. Hospitals and medical centers have many resources for you and your family.
Will I Need More Than One Treatment For Metastatic Breast Cancer
Medications are important for metastatic breast cancer to help control its spread. Resistance to therapies may develop, which can lead your care team to recommend a change in treatment.
When you start a treatment regimen, you and your care team will see how:
- The cancer responds to the therapy.
- The side effects impact you.
If the treatment isnt working or the side effects are unbearable, your care team can discuss switching the treatment method. They may recommend a different drug, dosage or schedule.
There are many treatments available. If one therapy isnt working for you for whatever reason, there is usually another one you can try.
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