Does breast cancer kill you

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What I Wish People Knew About Metastatic Breast Cancer

The term metastatic breast cancer (MBC, also called stage 4 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, it’s 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.

1. Many women live for decades with metastatic breast cancer.

A stage 4 diagnosis is not an instant death sentence, says Renee Sendelbach, 40, from Austin, Texas, who was diagnosed seven years ago, when she learned that her breast cancer had moved into her lungs, bones, and lymph nodes.

“I’ve had metastatic breast cancer for five years and I’m still kicking,” says Susan Rosen, 53, from Franklin, Massachusetts.

According to a 2017 article in the journal Cancer Epidemiology, Biomarkers & Prevention, 34 percent of women diagnosed with metastatic breast cancer have been living with the disease for five years or longer.

“The goal of treatment is to keep patients on their feet as long as possible so that they can continue to do what they want to do,” says Gretchen Kimmick, MD, associate professor of medicine at the Duke Cancer Institute in Durham, North Carolina.

In recent years, treatment for breast cancer has vastly improved, largely because doctors are able to more accurately target therapy to the type of breast cancer a woman has. “The discovery of the HER2 protein and medicines that block it has revolutionized treatment for women with cancers that overexpress this protein,” Dr. Kimmick says. “This cancer was pretty deadly two decades ago, and now we are starting to debate if we’ve cured it in some women.”

2. Metastatic breast cancer is terminal.

Metastatic breast cancer can’t be cured and it is terminal. “One thing I didn’t 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 don’t think everyone understands that,” Silberman says. “I still get, ‘When will your treatment be over?’ Well, it’s never going to be over.”

3. You may not know I’m sick by looking at me.

“I may look perfectly healthy, but I’m sick,” says Silberman. “Treatment is hard. I sleep a lot. I still travel, but it’s difficult. I just visited a friend in Utah for four days, and it wore me out for two weeks.”

Just because someone doesn’t 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 don’t believe you.”

4. Plans have to be flexible.

“My energy is unpredictable,” says Sendelbach. “I literally never know how I’m going to feel from one day to the next. It’s so hard to make plans because if I say yes to something that’s two weeks away, the day of, I could wake up and feel absolutely horrible.”

When someone with metastatic breast cancer declines an invitation or cancels at the last minute, it’s most likely not because they don’t want to be there. Says Sendelbach, “We physically can’t do it.”

Silberman agrees. “I’ve been going through for a long time,” she says, “and I’ve had friends drop away. Because of MBC and my treatments, it’s hard for me to be reliable.”

5. I have to prioritize and try not to sweat the small stuff.

For Sendelbach, each week begins with a list of her priorities. “Obviously, getting to my doctor’s appointments is very important,” she says. “But if the clothes aren’t folded, is that a dire situation? Absolutely not!”

Sendelbach has learned to make compromises: If her husband and son have to pick up their clean clothes from the couch, she can live with that.

“I have learned,” she says, “to look at every situation and ask if this is going to truly make a difference in my day or my family’s day for better or worse.” If the answer is no, then that task might be left undone.

It wasn’t always this way for Sendelbach, though. When she was first diagnosed with cancer, her son was just a year old and she had been married for only two and a half years. “You know how it is when you first have a baby — if everything isn’t perfect, then the world is falling apart!” she laughs. “Now, to us — we ate, we’re all still alive, the house is acceptable — if we’re good, it’s all okay.”

6. There are good days and bad days.

“There are days when I say to myself, ‘I’ve had enough. I can’t take it anymore,’” says Rosen. “But I want to keep on living. I love my life. Overall, I have a great life except for the cancer.”

Rosen has a few mantras she uses when things get tough. “A lot of the tough times are treatment related,” she says. “I refer to those as bumps in the road, and , ‘This too shall pass.’”

7. Clinical trials are a promising treatment option.

For people with advanced stages of cancer, clinical trials can be considered the gold standard of treatment. “I recommend clinical trials highly,” says Rosen. “You get access to medication and treatment that you normally wouldn’t have.”

A clinical trial could even have positive results on your cancer. “We are living in an exciting time for cancer treatment,” says Kimmick. “There are myriad new drugs coming out that will improve the lives of all women with breast cancer, both metastatic and early stage.”

However, it’s important to be realistic about the potential outcome of your trial. Rosen was recently enrolled in a clinical trial in which the medication proved toxic for her. But she has no regrets about participating. “It feels like I’m helping researchers who are working on cures for cancer,” she says. “When I had a bad reaction to the drug, they were able to put my side effects in their study. I feel like I did help, and that makes me happy.”

People interested in joining a clinical trial for treatment should talk to their doctor about options that might be good for them.

8. I may not feel like a “fighter” — there’s no final victory.

The language used to describe cancer and its treatment is often the language of war: fighting cancer, battling cancer, being a warrior. But those words may not resonate with women who have metastatic breast cancer.

Sendelbach recalls using fighting words when she was first diagnosed with stage 1 breast cancer. “I was 30 years old, and I was in fight mode,” she says. “I was like, ‘Hell yeah, I can kick cancer’s ass’ and so on.” When she was diagnosed with stage 4, though, she realized there would be no end in sight, no final victory for her.

“There’s not a finish line,” she says, “so to be in fight mode doesn’t really work. There has to be an end in sight to stay in that place.”

For her, metastatic breast cancer is something she deals with day to day. She describes her journey as a marathon, not a sprint. “If you have to stop sometimes to walk and take water breaks,” she says, “you should. If you try to run as fast as you can all the time, it’s inevitable that you’re going to fail.”

9. 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 didn’t 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 doesn’t make sense to try to compare what you’re 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.”

End-of-life symptoms of metastatic breast cancer

Share on PinterestCaregivers play a vital role in end-of-life care.

End-of-life symptoms can be difficult for someone with metastatic breast cancer to cope with, but palliative care can help.

Some people choose to receive in-home palliative care from nurses and other healthcare professionals. Others may choose to receive their care in a clinic that specializes in end-of-life treatment and palliative care.

A person with metastatic breast cancer may wish to speak with friends, family members, and their healthcare team about their care preferences.

A discussion about comfort measures, where a person would like to receive their care, religious or spiritual requests, and funeral preferences can be hard to initiate.

However, discussing these details in advance can help ensure that a person’s final months are more comfortable, and that caregivers can honor the person’s wishes as much as possible.

Treatment for physical symptoms

Several medications can help relieve pain. The American Cancer Society (ACS) urge that a person should not have to endure pain in the final months and days of life.

Many people find relief with opioid medications, but these can cause side effects such as fatigue and constipation. A person may use opioids in combination with other pain relief medications, such as acetaminophen or ibuprofen.

Other drugs, such as antidepressants and antiseizure medications, can also treat certain types of pain.

Doctors can also prescribe medications for nausea and vomiting. Some drugs for treating nausea can make a person drowsy. However, these drugs may help people eat and drink more or simply make it easier for them to function and interact with other people.

Emotional and spiritual care

End-of-life care also includes emotional, mental, and spiritual therapy. A person’s healthcare team may include social workers, counselors, mental health professionals, and religious or spiritual advisors.

According to the Anxiety and Depression Association of America, up to 40 percent of people with cancer experience serious mental distress. This may include anxiety, depression, panic attacks, and post-traumatic stress disorder (PTSD).

Medications, therapy, religious or spiritual rituals, and support groups can help a person cope with mental health issues and stress during this difficult time.

Caregivers may also need help with stress, anxiety, and depression. The palliative care team can usually also provide support and advice to caregivers for their emotional needs.

The role of caregivers

Caregivers also play a vital role in helping a person with cancer be as comfortable as possible. To help, a caregiver can:

  • Help them out of bed. Help the person get up, if they are able to, every 1–2 hours. If they are unable to do this, help them turn in bed to keep them comfortable and avoid bed sores.
  • Create a comfortable environment. Keep the person’s room at a comfortable temperature. If they are cold, get them extra blankets. Avoid using heating pads and electric blankets, which may cause burns. Also, ensure that the room is well-ventilated, such as by opening windows or using fans, so that the person can breathe more easily.
  • Understand their eating patterns. Do not force a person to eat or drink unless the doctor instructs otherwise. Caregivers may become upset or concerned when a person with cancer does not eat. However, they should try to understand that it may be difficult or impossible for the person to eat or drink when they feel ill, are exhausted, or have no appetite. Try ice chips to keep the mouth moist.
  • Help them conserve their energy levels. Only allow visitors that the person wants to see. If the person is exhausted, limit visitors or ask them to come to the person’s room to avoid unnecessary trips out of bed.
  • Monitor their pain levels. Look for signs of pain or discomfort. Groaning, grimacing, or appearing restless could be signs that a person is in pain. Work with their healthcare provider to ensure that they are receiving adequate pain control if the person cannot do this for themselves.
  • Change their position. Help them try various positions, such as being propped up on pillows, to help them breathe easier and interact with others.
  • Be patient. Understand if the person cannot remember things or behaves differently. Explain to visitors, if needed, so that they are aware of these changes before interacting with the individual.
  • Say comforting things. Keep in mind that the person may be able to hear you, even if they appear to be asleep or are unable to talk. This may be an opportunity to share favorite memories or comforting words with them. Avoid saying things that may cause unnecessary stress in front of them.

Breast cancer stages

Making an educated treatment decision begins with the stage, or progression, of the disease. Using the results from your diagnostic tests, your care team at Cancer Treatment Centers of America® (CTCA) will develop an appropriate treatment plan for you.

If you have been recently diagnosed, we will review your pathology to confirm you have received the correct diagnosis and staging information, and develop a personalized treatment plan. If you have a recurrence, we will perform comprehensive testing and identify a treatment approach tailored to your needs.

The stage of breast cancer is one of the most important factors in evaluating treatment options. Our cancer doctors use a variety of diagnostic tests to evaluate breast cancer and develop the appropriate treatment plan for you.

What is stage 0 breast cancer?

Also called carcinoma in situ, stage 0 is the earliest breast cancer stage. At stage 0, the breast mass is noninvasive, and there is no indication that the tumor cells have spread to other parts of the breast or other parts of the body. Often, stage 0 is considered a precancerous condition that typically requires close observation, but not treatment.

Stage 0 breast cancer is difficult to detect. There may not be a lump that can be felt during a self-examination, and there may be no other symptoms. However, breast self-exams and routine screening are always important and can often lead to early diagnosis, when the cancer is most treatable. Stage 0 disease is most often found by accident during a breast biopsy for another reason, such as to investigate an unrelated breast lump.

There are two types of stage 0 breast cancer:

Ductal carcinoma in situ (DCIS) occurs when breast cancer cells develop in the breast ducts. Today, stage 0 DCIS is being diagnosed more often because more women are having routine mammogram screenings. DCIS can become invasive, so early treatment can be important.

Lobular carcinoma in situ (LCIS) occurs when abnormal cells develop in the lobules. These cells are not cancerous and this condition rarely becomes invasive cancer. However, women who develop LCIS may be at increased risk for developing breast cancer in the future. For women who develop LCIS, the risk of getting an invasive cancer is 20 percent to 25 percent over 15 years after the initial diagnosis.

What is stage I (stage 1) breast cancer?

This breast cancer is the earliest stage of invasive breast cancer. In stage I, the tumor measures up to 2 cm and no lymph nodes are involved. At this stage, the cancer cells have spread beyond the original location and into the surrounding breast tissue.

Because a stage I tumor is small, it may be difficult to detect. However, breast self-exams and routine screening are always important and can often lead to early diagnosis, when the cancer is most treatable.

Stage I breast cancer is divided into two categories:

Stage IA (Stage1A): The tumor measures 2 cm or smaller (about the size of a pea or shelled peanut) and has not spread outside the breast.

Stage IB (Stage1B): Small clusters of cancer cells measuring no more than 2 mm, are found in the lymph nodes, and either there is no tumor inside the breast, or the tumor is small, measuring 2 cm or less.

The survival rate for stage IA breast cancer may be slightly higher than for stage IB. However, all women with stage I breast cancer are considered to have a good prognosis.

At stage I, TNM designations help describe the extent of the disease. For example, there may or may not be cancer cells in the lymph nodes, and the size of the tumor may range from 1 cm to 2 cm. Most commonly, stage I breast cancer is described as:

  • T: T1, T2, T3 or T4, depending on the size and/or extent of the primary tumor
  • N0: Usually, cancer has not spread to the lymph nodes.
  • M0: The disease has not spread to other sites in the body.

What is stage II (stage 2) breast cancer?

Also known as invasive breast cancer, the tumor in this stage measures between 2 cm to 5 cm, or the cancer has spread to the lymph nodes under the arm on the same side as the breast cancer. Stage II breast cancer indicates a slightly more advanced form of the disease. At this stage, the cancer cells have spread beyond the original location and into the surrounding breast tissue, and the tumor is larger than in stage I disease. However, stage II means the cancer has not spread to a distant part of the body.

At stage II, a tumor may be detected during a breast self-exam as a hard lump within the breast. Breast self-exams and routine screening are always important and can often lead to early diagnosis, when the cancer is most treatable.

Stage II breast cancer is divided into two categories:

Stage IIA (Stage 2A): One of the following is true:

  • There is no tumor within the breast, but cancer has spread to the axillary (underarm) lymph nodes, or
  • The tumor in the breast is 2 cm or smaller and cancer has spread to the axillary lymph nodes, or
  • The tumor in the breast measures 2 cm to 5 cm but cancer has not spread to the axillary lymph nodes.

Stage IIB (Stage 2B): One of the following is true:

  • The tumor measures 2 cm to 5 cm and cancer has spread to the axillary lymph nodes, or
  • The tumor is larger than 5 cm but cancer has not spread to the axillary lymph nodes.

The survival rate for stage IIA breast cancer may be slightly higher than for stage IIB. However, all women with stage II breast cancer are considered to have a good prognosis.

At stage II, TNM designations help describe the extent of the disease. Most commonly, stage II breast cancer is described as:

  • T: T1, T2, T3 or T4, depending on the size and/or extent of the primary tumor
  • N1: Cancer has spread to the lymph nodes.
  • M0: The disease has not spread to other sites in the body.

What is stage III (stage 3) breast cancer?

Also known as locally advanced breast cancer, the tumor in this stage of breast cancer is more than 2 inches in diameter across and the cancer is extensive in the underarm lymph nodes or has spread to other lymph nodes or tissues near the breast. Stage III breast cancer is a more advanced form of invasive breast cancer. At this stage, the cancer cells have usually not spread to more distant sites in the body, but they are present in several axillary (underarm) lymph nodes. The tumor may also be quite large at this stage, possibly extending to the chest wall or the skin of the breast.

Stage III breast cancer is divided into three categories:

Stage IIIA (Stage 3A): One of the following is true:

  • No tumor is found in the breast, but cancer is present in axillary lymph nodes that are attached to either other or other structures, or cancer may be found in the lymph nodes near the breast bone, or
  • The tumor is 2 cm or smaller. Cancer has spread to axillary lymph nodes that are attached to each other or other structures, or cancer may have spread to lymph nodes near the breastbone, or
  • The tumor is 2 cm to 4 cm in size. Cancer has spread to axillary lymph nodes that are attached to each other or to other structures, or cancer may have spread to lymph nodes near the breast bone, or
  • The tumor is larger than 5 cm. Cancer has spread to axillary lymph nodes that may be attached to each other or to other structures, or cancer may have spread to lymph nodes near the breastbone.

Stage IIIB (Stage 3B): The tumor may be any size, and the cancer:

  • Has spread to the chest wall and/or skin of the breast, and
  • May have spread to axillary lymph nodes that may be attached to each other or to other structures, or cancer may have spread to lymph nodes near the breastbone.
  • Cancer that has spread to the skin of the breast is inflammatory breast cancer.

Stage IIIC (Stage 3C):

  • There may be no sign of cancer in the breast or the tumor may be any size and may have spread to the chest wall and/or skin of the breast.
  • Cancer cells are present in lymph nodes above or below the collarbone.
  • Cancer cells may have spread to axillary lymph nodes or lymph nodes near the breastbone.
  • Cancer that has spread to the skin of the breast is inflammatory breast cancer.

Stage IIIC breast cancer may be operable or inoperable:

  • Operable stage IIIC: The cancer is found in 10 or more axillary lymph nodes, or is in lymph nodes below the collarbone, or is in axillary lymph nodes and lymph nodes near the breastbone.
  • Inoperable stage IIIC: The cancer has spread to the lymph nodes above the collarbone.

The survival rate for stage IIIA breast cancer may be slightly higher than for stage 3B, and the survival rate for stage IIIB may be slightly higher than for stage IIIC. However, all women diagnosed with stage III breast cancer have several promising treatment options.

At stage III, TNM designations help describe the extent of the disease. Higher numbers indicate more extensive disease. Most commonly, stage III breast cancer is described as:

  • T: T1, T2, T3 or T4, depending on the size and/or extent of the primary tumor
  • N1: Cancer has spread to the lymph nodes.
  • M0: The disease has not spread to other sites in the body.

What is stage IV (stage 4) breast cancer?

Also known as metastatic breast cancer, the cancer in this stage has spread beyond the breast, underarm and internal mammary lymph nodes to other parts of the body near to or distant from the breast. The cancer has spread elsewhere in the body. The affected areas may include the bones, brain, lungs or liver and more than one part of the body may be involved.

At stage IV, TNM designations help describe the extent of the disease. Higher numbers indicate more extensive disease. Most commonly, stage IV breast cancer is described as:

  • T: T1, T2, T3 or T4, depending on the size and/or extent of the primary tumor.
  • N1: Cancer has spread to the lymph nodes
  • M1: The disease has spread to other sites in the body

Recurrent breast cancer

Recurrent breast cancer occurs when the disease has returned after initial treatment. Most recurrent cancers appear within the first two or three years after treatment, but, in some cases, the cancer may recur many years later. According to the Susan G. Komen® organization, women with early breast cancer most often develop local recurrence within the first five years after treatment. On average, 7 percent to 11 percent of women with early breast cancer experience a local recurrence during this time.

For patients with a family history of cancer, or a BRCA1 or BRCA2 gene mutation, the cancer recurrence rate is higher. The risk of finding new cancers, such as ovarian cancer, may also be higher. Cancer recurrence risk is based on many factors, including the cancer type and how it was treated.

Types of recurrent breast cancer

There are three types of recurrent breast cancer:

Local recurrence is when the cancer has returned to the same location as the original cancer.

Regional recurrence is when the cancer has been found in or near the original location.

Distant recurrence is when the breast cancer has spread to other parts of the body. This is also considered metastatic breast cancer.

It is important to report new signs or symptoms of breast cancer to your doctor. Symptoms of recurrent breast cancer vary from person to person.

Learn more about recurrent breast cancer

Metastatic breast cancer

Metastatic breast cancer, or distant recurrence, occurs when cancer cells have spread to distant organs and/or tissue in the body. Common metastatic areas include the bones, liver and lungs. Even when a metastatic breast tumor spreads to a different part of the body, it contains the same cancerous cells that developed in the breast and is still considered breast cancer.

Signs and symptoms of metastatic breast cancer may include:

  • Swelling or lumps in the lymph nodes
  • Unexplained pain in other areas of the body, such as the bone
  • Difficulty breathing or a persistent cough
  • Loss of appetite and/or weight loss
  • Intense headaches

Learn more about metastatic breast cancer

Next topic: How is breast cancer diagnosed?

Metastasis occurs when cancer spreads to a different part of the body from where it started. Metastasis should not be confused with “locally advanced cancer.” That is cancer that has spread to nearby tissues or lymph nodes. But it has not spread throughout the body.

Learn more about the basics of metastasis.

Naming metastatic cancer

You may find the naming of metastatic cancer confusing. Doctors name a metastasis for the original cancer. For example, breast cancer that spreads to the bone is not bone cancer. It is called metastatic breast cancer.

What does it mean to have metastatic cancer?

In the past, many people did not live long with metastatic cancer. Even with today’s better treatments, recovery is not always possible. But doctors can often treat cancer even if they cannot cure it. A good quality of life is possible for months or even years.

How is metastatic cancer treated?

Treatment depends on the type of cancer, the available treatment options, and your wishes. It also depends on your age, general health, treatment you had before, and other factors. Treatments for metastatic cancer include surgery, chemotherapy, hormone therapy, immunotherapy, and radiation therapy.

Goals of treatment

For many people with cancer, the goal of treatment is to try to cure the cancer. This means getting rid of the cancer and never having it come back. With metastatic cancer, curing the cancer may not be a realistic goal. However, it might still be a hope or dream. It is reasonable to ask your doctor if curing the cancer is the goal.

If curing the cancer is not the goal of treatment, the goal is to help a person live as well as possible for as long as possible. Getting more specific, this goal can be broken into 4 parts:

  • To have the fewest possible side effects from the cancer

  • To have the fewest possible side effects from the cancer treatment

  • For the person with cancer to have the best quality of life

  • For the person with cancer to live as long as possible with the cancer

Each person values these items differently. It is important to tell your health care team what is important to you.

Getting treatment for metastatic cancer can help you live longer and feel better. But getting treatment is always your decision.

Learn more about making decisions about cancer treatment. These recommendations include information on treating many types of metastatic cancer.

Living with long-term cancer

When doctors can treat metastatic cancer, your situation may be like someone with a chronic, or long-term, disease. Examples of chronic diseases are type 1 diabetes, congestive heart failure, and multiple sclerosis. Doctors can treat these conditions, but not cure them.

The challenges of living with cancer

Living with metastatic cancer is challenging. The challenges are different for everyone, but they can include:

  • Feeling upset that the cancer came back. You might feel hopeless, angry, sad, or like no one understands what you are going through, even family.

  • Worrying that treatment will not help and the cancer will get worse.

  • Dealing with tests, doctor’s appointments, and decisions.

  • Talking with family and friends about the cancer.

  • Needing help with daily activities if you feel exhausted or have side effects from treatment.

  • Finding emotional and spiritual support.

  • Coping with the cost of more treatment. Even if you have insurance, it might not cover everything.

Meeting the challenges of metastatic cancer

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.

Dealing with emotions and lifestyle changes

Coping with emotions and lifestyle challenges is an important part of living with metastatic cancer. Ways of coping include:

  • Learning about the metastasis. You might want to know everything possible, or just basic information.

  • Talking with another health care professional such as a psychologist, psychiatrist, counselor, or oncology social worker about your situation.

  • Managing stress. From planning ahead to trying meditation and yoga, there are many options to help lower your stress level.

  • Finding meaning. Talking with a hospital chaplain, a counselor, or your religious leader can help.

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.

Support for your caregivers

Your loved ones might also need help coping. Having a family member or friend with metastatic cancer is challenging, especially for people who help care for you. They can try the ways of coping above. Or your health care team can suggest other tips. For example, there are in-person and online support groups for family members of people with cancer.

Related Resources

Coping with Uncertainty

Dealing With Cancer Recurrence

Finding a Support Buddy

More Information

American Cancer Society: Understanding Recurrence

National Cancer Institute: Managing Cancer as a Chronic Condition

Hereditary Cancer

IN-DEPTH REVIEW OF RESEARCH

Metastatic breast cancer is defined as breast cancer that has spread and formed tumors at distant places in the body. It may be a woman’s initial diagnosis (at stage 4) or develop as a recurrence after a stage 1, 2 or 3 breast cancer metastasizes.

Data from a 2017 SEER study (Mariotto, et al.) indicated that over 170,000 women in the U.S. are living with metastatic breast cancer (and there are also several hundred men with metastatic breast cancer). Five-year survival rates for metastatic breast cancer patients have increased. For ages 18-49, that rate rose from 18% between 1992-1994 to 36% between 2005-2012. During the same time, average survival for women ages 15-49 whose first diagnosis was metastatic breast cancer increased from 22.3 months to 38.7 months. Average survival time for women ages 50-64 whose first diagnosis was metastatic breast cancer increased from 19.1 months to 29.7 months.

Despite longer life spans after diagnosis, many deaths due to metastatic breast cancer still occur annually. Based on Mariotto’s study, only about 17% of women with living with metastatic breast cancer have survived more than 10 years. Metastatic breast cancer can be difficult to treat because cancer cells spread to many parts of the body and often resist standard treatment. Finding new approaches or treatments to slow, halt or reverse cancer growth continues to be an active area of research.

One promising technique for treating metastatic cancer is adoptive cell therapy (ACT), also known as adoptive transfer. Researchers extract a patient’s own tumor-infiltrating lymphocytes (TILs); these are unique immune cells that can recognize and attack her tumor cells. These TILs are then grown to vastly larger numbers in the lab and then they are reintroduced into the patient.

Adoptive cell transfer has been used successfully with melanoma and colorectal cancer. Approximately 50% of patients with metastatic melanoma who were treated with ACT have shown complete remission. Some types of ACT involve genetically modifying immune cells to boost their effectiveness against cancer cells. In this study, however, the patient’s cells were selected and allowed to multiple in the lab, but they were not genetically modified.

This study is very important because it is the first successful application of T-cell immunotherapy for late-stage breast cancer. It holds hope of a new treatment approach that resulted in complete remission of one woman’s metastatic breast cancer. Such a complete positive result is highly unusual.

Researchers of this study wanted to know: If treatment with a patient’s own immune cells would lead to tumor remission.

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Population(s) looked at in the study:

This research is a case study of a 49-year-old woman with advanced metastatic breast cancer and an exceptionally effective treatment. Originally diagnosed at age 39 with DCIS in her left breast, she then had a modified radical mastectomy. She was in remission for 10 years before being diagnosed again with ER+, HER2- metastatic breast cancer with tumors in multiple locations, including several lymph nodes, her right breast and left chest wall. She then had several types of chemotherapy and endocrine therapies to treat her metastatic cancer that did not halt growth of her tumors.

Study findings:

This study approach is based on immunotherapy—stimulating the body’s own defense system to attack tumor cells. This happens naturally to some extent, but as cancer grows, a person’s immune system becomes overwhelmed and is less able to respond.

In this study, researchers collected two types of cells from the patient: tumor cells from a metastasis in the right breast and immune cells from the patient’s blood. First, they identified unique proteins on the surface of the tumor cells. (These are different from the proteins of normal cells.) Because not all immune cells are alike, they then looked at the patient’s immune cells to identify the ones that could specifically target the tumor proteins. These selected tumor infiltrating lymphocytes, or TILs, were grown in large numbers in the lab and injected back into the patient, greatly strengthening her own body’s defense against her cancer.

The result was surprisingly effective: 6 weeks after treatment her tumors were reduced in size by 51%, and by 22 months after treatment, the masses in the woman’s chest wall, right breast and lymph nodes were undetectable.

Limitations:

The largest limitation of this study is number of participants—it is a case study of just one patient. Melanoma treated by ACT is effective for 50% of patients treated; however, it is unclear what proportion of metastatic breast cancer patients would respond to this therapy. While this woman responded well and is living without detectable cancer, researchers cannot be sure if her response will be typical, whether it will vary, or if it is a fluke. This is part of an ongoing clinical trial and data from additional participants may be available in the near future.

Whether or not ACT is safe and effective is still unknown. Patients with other metastatic cancers who have been treated with ACT have experienced side effects. This patient experienced low blood phosphate levels, a high fever (associated with immune cell depletion), and other treatable major side effects during ACT. But the ACT did not appear to adversely affect her normal tissue. It is too early to know if other unintended side effects would occur when more patients are treated using this technique.

Another limitation of this study is that as part of the procedure, the patient was also treated briefly with the immunotherapy agent pembrolizumab once before ACT and three times after ACT. Pembrolizumab is considered a checkpoint block that can halt cancer cell growth to allow the immune system to attack the cancer more effectively. It is possible that the positive effects observed are due to this drug rather than the ACT treatment. However, historically, pembrolizumab does not have a significant effect on ER+ tumors like those in this patient. Furthermore, when researchers examined the tumor cells of this particular patient, the protein recognized by pembrolizumab was not present. Therefore, it seems unlikely that this drug accounts for the remission observed (although it may aid ACT effectiveness). Further ACT testing without this drug is needed to clarify this issue.

The patient treated is a younger woman (age 49) who does not have a hereditary mutation in a breast cancer predisposition gene. Whether or not her result will apply to women with hereditary mutations is unclear.

Conclusions:

This is an exciting and promising new technique. Much more data is needed to determine its safety and effectiveness and its potential limitations or side effects.

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Posted 8/16/18

What happens at each stage of breast cancer?

Breast cancer stages range from 0-4. Each stage has different symptoms and treatment options.

Breast cancer has four stages, and a doctor uses the TNM staging system to identify which of these four stages the breast cancer has reached.

The letters TNM mean the following:

  • T stands for tumor and indicates how much of the breast tissue is involved.
  • N stands for nodes and indicates whether cancer has spread to the lymph nodes.
  • M stands for metastasis and indicates whether cancer has spread to other parts of the body.

The TNM staging system also uses numbers. The numbers from 0-4 determine how advanced the cancer is.

The system is overseen by the American Joint Committee on Cancer (AJCC). This means all cancer doctors describe and classify the stages of cancer in the same way.

To determine which stage a person’s breast cancer has reached, a doctor will perform tests. Tests include blood tests, CT and PET scans, MRI’s, X-rays, including a mammogram, and ultrasounds.

Stage 0 breast cancer

Share on PinterestThe TNM staging system helps identify the stage of breast cancer and the appropriate treatment.

A person with stage 0 breast cancer has a noninvasive cancer type.

This means that cancer has not spread anywhere else in the body and that the cancerous cells remain in the breast where they started growing.

Noninvasive breast cancer is also known as ductal carcinoma in situ (DCIS). It means cancer remains in the milk ducts.

Early diagnosis of stage 0 breast cancer means that a person can receive prompt treatment.

This might prevent cancer from turning into an invasive breast cancer type.

Treatment for stage 0 breast cancer

There is a variety of treatment options for stage 0 breast cancer, including:

Surgery

A lumpectomy involves removing cancerous cells from the breast. It is an option when the cells remain in one area. This is a relatively short and simple procedure, and a person should be able to go home after the surgery on the same day.

If cancerous cells appear throughout the breast, the doctor may recommend a mastectomy, which involves removing the entire breast. Plastic surgeons can rebuild the breast at the same time or a later date.

Radiation therapy

Radiation therapy can help kill cancer cells and inhibit them from spreading. A person will typically undergo radiation therapy once the breast surgery site has healed. This is usually 4-6 weeks after surgery.

Hormone treatment

The hormone estrogen, found naturally in the body, can impact some types of breast cancer. If a person has estrogen receptor-positive (ER+) or progesterone receptor-positive (PR+) breast cancer, a doctor may suggest hormone treatment in addition to surgery.

The person may also require radiation therapy to manage the levels of these hormones in the body.

Stage 1 breast cancer

Stage 1 breast cancer means the cancerous cells are invading the surrounding breast tissue. Stage 1 breast cancer has two subcategories – 1A and 1B.

People with stage 1A breast cancer have breast cancer with:

  • A tumor measuring no more than 2 centimeters (cm) in diameter that has not spread outside the breast.

People with stage 1B breast cancer have invasive breast cancer that can present as:

  • No tumor in the breast, but the cancerous cells have formed into clusters that are between 0.2–2 (millimeters) mm in diameter and may also be in the lymph nodes.
  • A tumor no larger than 2 cm growing in the breast alongside small groups of cancer cells measuring between 0.2–2 mm developing in the lymph nodes.

If this is the case and the cancer is ER+ or PR+, a doctor is still likely to classify it as stage 1A cancer.

Microscopic invasion is where cancer cells have begun to spread outside the milk duct lining or lobule. If microscopic invasion is present, doctors may still classify cancer as stage 1 breast cancer, providing these cells do not measure more than 1mm.

Treatment for stage 1 breast cancer

Doctors can offer a variety of treatment options for stage 1 breast cancer, although surgery is the primary treatment.

Surgery

A lumpectomy or mastectomy are both viable surgical options for people with stage 1 breast cancer. A doctor will decide what surgery is most appropriate depending on the location of the primary tumor, how large it is, the size of the breast, family history, genetics, and the person’s preference.

Radiation therapy

Radiation therapy is a standard treatment for stage 1 breast cancer. However, a doctor may not recommend radiation therapy for people over 70 years old, particularly if hormone therapy is suitable.

Hormone therapy

If the breast cancer is ER+ or PR+, hormone therapy may be effective. Hormone therapy works by preventing the growth of estrogen, which helps cancer grow. Hormone therapy can reach cancer cells in the breast as well as other areas of the body and reduces the risk of the cancer coming back.

Chemotherapy

Before recommending chemotherapy, a doctor will test to see whether the cancer is hormone receptive.

If the test results show that the cancer is not receptive to estrogen and progesterone or to another protein called human epidermal growth factor receptor 2 (HER2), it is known as triple-negative breast cancer (TNBC).

Hormone therapy is ineffective against this cancer type, and people who have TNBC will usually need chemotherapy.

However, some people who do have ER+ or PR+ breast cancer may still undergo chemotherapy. A doctor may need to run a test on the tumor to help decide whether chemotherapy is appropriate.

Sometimes, doctors will recommend that people who have HER2+ breast cancer use Herceptin, which is a targeted therapy, alongside chemotherapy.

Stage 2 breast cancer

Stage 2 breast cancer also has subcategories known as 2A and 2B.

Stage 2A breast cancer is an invasive cancer where:

  • There is no tumor growth in the breast itself, but cancerous masses that are over 2 mm in diameter are growing in up to three axillary lymph nodes (in and around the armpit) or lymph nodes near the breastbone.
  • There is a tumor in the breast that is under 2 cm in diameter that has spread to the axillary lymph nodes.
  • The tumor is 2–5 cm in diameter but has not spread to the axillary lymph nodes.

Stage 2B breast cancer is an invasive breast cancer where:

  • A tumor that measures 2–5 cm in diameter is growing in the lymph nodes alongside clusters of cancerous cells. These cancerous cells form groups between 0.2 mm–2 mm in size.
  • There is a tumor that is 2–5 cm in diameter, and cancerous cells have spread to one to three axillary lymph nodes or lymph nodes by the breastbone.
  • The tumor is larger than 5 cm, but cancerous cells have not spread to the axillary lymph nodes.

Treatment for stage 2 breast cancer

The most common type of treatment for stage 2 breast cancer is surgery.

Surgery

In most cases, treatment involves removing the cancer.

A person with stage 2A or 2B breast cancer may undergo a lumpectomy or mastectomy. The doctors and the individual can decide based on the size and location of the tumor.

Combination therapy

A doctor may recommend a combination of radiation therapy, chemotherapy, and hormone therapy (if the cancer is hormone receptive) to people with stage 2A or 2B breast cancer.

Stage 3 breast cancer

Share on PinterestChemotherapy will generally be the first phase of treatment for stage 3 breast cancer.

The subcategories for stage 3 breast cancer are 3A, 3B, and 3C.

3A breast cancer is an invasive breast cancer where:

  • There is no tumor in the breast, or a tumor of any size is growing alongside cancer found in four to nine axillary lymph nodes or the lymph nodes by the breastbone.
  • A person has a tumor greater than 5 cm, as well as clusters of breast cancer cells in the lymph nodes that are between 0.2–2 mm in diameter.
  • The tumor is larger than 5 cm, and cancer has also spread to one to three axillary lymph nodes or the lymph nodes near the breastbone.

Stage 3B breast cancer is invasive breast cancer where:

  • A tumor of any size has spread into the chest wall or skin of the breast, causing swelling or an ulcer to develop. It could also have spread to up to nine axillary lymph nodes or may have spread to lymph nodes by the breastbone.

If cancer spreads to the skin of the breast, a person may have inflammatory cancer.

Symptoms of inflammatory breast cancer include:

  • the skin of the breast turning red
  • swelling of the breast
  • the breast feeling unnaturally warm

Stage 3C breast cancer is an invasive breast cancer where:

  • There is no actual tumor in the breast, or the tumor may be any size and has spread into the wall of the chest or the skin of the breast. Cancer may also be present in 10 or more axillary lymph nodes.
  • Cancer has spread to a person’s lymph nodes above or below the collarbone or axillary lymph nodes or lymph nodes located close the breastbone.

Treatment for stage 3 breast cancer

Treatment for people with stage 3 breast cancer includes chemotherapy, surgery, and radiation. Typically, doctors administer the chemotherapy before performing the surgery in an attempt to shrink a tumor.

People with stage 3 breast cancer will probably need radiation therapy to kill off any remaining cancer cells. Doctors may also recommend hormone therapy, as well as additional targeted therapies, if necessary.

Stage 4 breast cancer

A person with stage 4 breast cancer has cancer that has spread not only to the nearby lymph nodes but also to more distant lymph nodes and other organs in the body.

Stage 4 breast cancer is the most advanced stage. It is also known as secondary or metastatic breast cancer. Stage 4 breast cancer may be recurrent breast cancer that has now spread to other parts of a person’s body.

Treatment for stage 4 breast cancer

Typically, treatment for stage 4 breast cancer includes a combination of chemotherapy, radiation therapy, and hormone therapy (if appropriate).

Targeted therapy is a treatment that targets the protein that allows cancer cells to grow and this type of therapy may also be an option for people with stage 4 breast cancer.

Sometimes, surgeons will operate to try and remove tumors though this is not usually the first option for treatment.

Doctors, however, may recommend surgery to help with pain relief by treating some of the issues that may develop as a result of having stage 4 breast cancer. These include spinal cord compression, removing single masses caused by metastasis, and fixing any broken bones.

A doctor may also prescribe medication to treat related symptoms such as:

  • antidepressants to help mood
  • anticonvulsants to manage pain or neurologic conditions
  • local anesthetics to manage pain

New treatments and therapies are emerging all the time, and anyone who has breast cancer at any stage can volunteer to try out these new treatments. People considering this should talk to their doctor to see whether any trials are available in their area.

Trials for a new treatment called immunotherapy are currently taking place. Immunotherapy works by raising the body’s natural ability to fight off cancer and has fewer side effects than chemotherapy.

The U.S. Food and Drug Administration (FDA) have not yet approved immunotherapy, but anyone who wishes to put themselves forward for these trials should discuss their options and suitability with their doctor.

More about the TNM staging system

As well as numbers, a zero or an ‘X’ often follow the letters T, N, and M. According to the AJCC, the meanings are as follows:

  • TX means doctors do not have information about the presence or size of the tumor
  • T0 means no evidence of an invasive primary tumor is present. This indicates that the cancer is “in situ” (which means that the tumor has not yet grown into healthy breast tissue).
  • NX means doctors do not have information about the lymph nodes
  • N0 means there is no evidence of cancer in the nearby lymph nodes
  • MX means doctors do not have information about metastasis
  • M0 means no evidence of distant metastasis is present

Breast cancer treatment considerations

Share on PinterestThere is increased risk of breast cancer if a close family member has it.

The stages of breast cancer give a doctor an indication of how developed the breast cancer is and the kind of treatment options that may be effective.

There are, however, other factors that doctor’s take into consideration when determining how successful a specific type of breast cancer treatment might be.

These include:

  • Age: Those under 40 tend to have more aggressive breast cancers.
  • Pregnancy: Doctors may delay chemotherapy until the second or third trimester and delay hormone and radiation therapy until after the baby is born.
  • How fast cancer grows and spreads: More aggressive cancers require more aggressive treatments.
  • Family history: People whose close relatives have experienced breast cancer are more likely to experience it themselves.
  • Genetic mutation status: If someone tests positive for the breast cancer genes known as BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two), their risk of developing breast cancer increases significantly. Some people may require tests for other genes associated with breast cancer.

Outlook

A person’s outlook depends on early diagnosis and the stage of their cancer. The earlier a person receives treatment, the better the prognosis.

People should routinely check for any signs of breast cancer by performing monthly breast exams and should talk to their doctor about having regular mammograms.

Some people may need to begin screening earlier than others depending on their risk factors. Discuss this with the doctor. Other people may be candidates to start screening later, but it is a good idea to share the decision making with a doctor who will be able to advise on the best way forward.

Treatment depends on many factors, including the stage of breast cancer, family history, genetics and a person’s personal preferences. Doctors will tailor treatment to each individual and will adjust it depending on how well a person responds initially.

There are a number of ways to determine if you have breast cancer:

  • Biopsies, including needle breast biopsies such as core needle biopsy or fine needle biopsy. For biopsies, a small piece of the tumor is taken and examined by a pathologist (someone who examines body tissues for abnormal cells or growths).
  • An exam by a doctor.
  • Ultrasound to find the location of the tumor.
  • Excision of the lump

Stages of Breast Cancer

Breast cancer is a progressive disease that advances through many stages. Doctors use a staging system to determine the extent of the cancer and the best treatment options.

  • Stage 0. Stage 0 is sometimes called noninvasive carcinoma or ductal carcinoma in situ. In stage 0, the cancer hasn’t spread from the duct into the surrounding breast tissues.
  • Stage I. In stage I, the cancer cells haven’t spread beyond the breast and the tumor is no more than 2 centimeters in size.
  • Stage II. In stage II, the cancer is 2 centimeters or smaller and has spread to underarm lymph nodes, or the tumor in the breast is larger than 2 centimeters but smaller than 5 centimeters and hasn’t spread to lymph nodes under the arm.
  • Stage III. Stage III, or locally advanced cancer, means the tumor in the breast is larger than 5 centimeters and cancer has more considerably involved the axillary lymph nodes, causing them to be attached to each other or to other structures, or has spread to the other lymph nodes near the breastbone or other tissues such as the skin of the breast or chest wall.
  • Stage IV. Stage IV cancer means the tumor has spread from the breast to other parts of the body, such as the brain, lungs, bones and liver.
  • Recurrent Cancer. Recurrent cancer means that the disease reappears after the initial treatment, even though treatment was at first successful. This is either because undetected cancer cells remained in the body or the disease spread before treatment began.

Breast Cancer Myths

What’s the disease that women fear the most? The answer is most likely to be breast cancer. And if you ask them the disease they’re most likely to get, their answer would be breast cancer as well.

But they would be wrong.

Among the most lethal diseases of women in the United States, breast cancer lags behind heart disease, stroke, lung cancer, chronic lower respiratory diseases, and Alzheimer’s. Women are far more likely to die of heart disease than breast cancer. Even as cancers go, breast cancer’s not the deadliest form. Lung cancer kills about 40 percent more women every year as cancer of the breast.

But breast cancer does kill more women age 35 to 54 than any other disease, and therein lies one big reason why it’s a woman’s worst nightmare: We all know someone who has had it.

“The really compelling reason that people put breast cancer on a different scale is that everybody knows somebody with breast cancer. Many of us know someone with it in her 40s, and we don’t know someone with heart disease in her 40s,” says Barbara Brenner, executive director of Breast Cancer Action, an information and advocacy group based in San Francisco. “Since it is the leading killer of women in the 30-to-55 range, everybody has a tragic story, and the tragic story translates into a lot of fear… Women tend to overestimate their risk.”

Breast cancer is also a disease rife with mythology. Although it gets a huge amount of media attention, a lot of what’s widely circulated is wrong. Here are a few choice myths and misconceptions worth correcting:

Myth No. 1: If I get it, I’m going to die.

The number of women diagnosed with breast cancer has decreased significantly. In fact, the death rate has been steadily declining as well. Over 80 percent of women diagnosed with breast cancer are alive after five years. That’s compared to 64 percent in the 1960s. And if the cancer is caught early, the number increases to 96 percent. Better treatments and early diagnosis through mammograms and regular breast exams are responsible for these improved outcomes.

Myth No. 2: All women have a 1-in-8 chance of developing breast cancer today.

The widely quoted “1 in 8” figure applies to a woman closer to the end of her lifetime. A 30-year-old, for example, has a 1-in-233 chance of developing breast cancer in the next decade. At age 40, it’s 1 in 69; from 50-60, it’s 1 in 38, and from 60-70 it’s 1 in 27. The 1-in-8 risk is a cumulative lifetime risk of developing breast cancer if you live at least to age 85.

Myth No. 3: If my mother had breast cancer, I’ll get it too.

If your mother or sister was diagnosed with breast cancer, your chances of getting the disease are doubled — that is to say if, with no family history, you would have had a 1.5 percent chance of developing the disease in the next five years, with your history, your chance rises to just 3 percent.

Myth No. 4: I’m at astronomical risk if I test positive for gene mutations.

Only 5 to 10 percent of breast cancers are the result of BRCA1 and BRCA2 mutations in the genes. How a particular mutation influences your risk for getting breast cancer depends on what other risk factors you may already have. For example, if 10 or more people in various generations of your family have had breast cancer, a particularly dangerous BRCA1 mutation could give you as much as an 85 percent chance of developing the disease by the age of 70.

But if you’ve had only a few relatives with breast cancer, such a mutation probably gives you at most a 56 percent chance of a breast cancer diagnosis before you turn 70. A genetic counselor can help you sort out whether you should be tested, and your doctor can help you determine whether you have enough of a genetic predisposition to warrant taking medication as a preventative.

Myth No. 5: If I have no family history and I exercise, eat right, and don’t smoke, I probably won’t get breast cancer.

Unfortunately, this is not the case. About 70 percent of women who are diagnosed with breast cancer have no identifiable risk factors. It’s important to exercise, eat a low-fat diet, avoid tobacco, and drink alcohol only in moderation, because all those things will certainly help guard against heart disease, diabetes, and other life-threatening conditions — and research has shown a relationship between breast cancer and drinking more than one alcoholic beverage a day. Exercise, on the other hand, may help decrease the risk of breast cancer, according to the National Cancer Institute, but it does not confer complete protection against the disease.

Myth No. 6: In general, only white women get breast cancer.

The truth is that although white women are slightly more likely to be diagnosed with breast cancer, a greater percentage of African-American women who have the disease will die of it. Most experts attribute the difference to black women’s poorer access to health care.

As a group, white, Hawaiian, and black women have the highest rates of the disease, according to the National Cancer Institute. The lowest rates occur among American Indian, Vietnamese, and Korean women. No one knows what accounts for this, although there are unproven theories that the groups with less breast cancer consume less fat. Some researchers and advocates for women with the disease say there’s a correlation between breast cancer incidence and industrial pollutants.

Myth No. 7: Breast cancer is a women’s disease.

Breast cancer in men is rare — only about 2,000 men are diagnosed each year, and the disease in men accounts for less than 1 percent of all breast cancers. But breast cancer kills 22 percent of the men who develop it, largely because many men don’t know they can get it, so the cancer goes untreated until it has reached a late stage.

Myth No. 8: If a lump hurts, it’s not breast cancer.

Tenderness associated with a lump, particularly if it’s cyclical in nature, is often a good sign. But many breast tumors that are malignant can be tender as well. It’s best to have your doctor check out anything suspicious.

Myth No. 9: Mammograms catch all breast cancers.

At the moment, mammograms are one of the most important tool for finding breast tumors. They catch about 80 percent of breast tumors, but that still leaves up to 20 percent that escape detection. It’s harder to spot tumors in dense glandular tissue than in fatty tissue, and some women — particularly those who are thin, young, premenopausal or on hormone-replacement therapy — have dense breasts (more gland tissue, less fat). For women with dense breasts or those at high risk for breast cancer, breast ultrasound or MRI may be useful along with mammography.

And while the American Cancer Society no longer stresses the importance of monthly breast self exams (after finding that they are less effective than first thought), it still emphasizes the importance of being aware of the normal look and feel of your breasts and being alert to any changes. The more attuned you are to changes in your breasts, the more likely you are to spot something dangerous. So, keeping up with those monthly self-exams couldn’t hurt.

Myths and Facts, American Cancer Society; www.cancer.org/NBCAM_myths_vs_facts.html

Mayo Clinic. Womens Top Health Threats: http://www.mayoclinic.com/

National Cancer Institute. Probability of Breast Cancer in American Women. October 2006. http://www.cancer.gov/cancertopics/factsheet/Detection/probability-breast-cancer

Office of Minority Health. African American Profiles. http://www.omhrc.gov/

Centers for Disease Control. Breast Cancer Statistics. http://www.cdc.gov/cancer/breast/statistics

American Cancer Society. What Are the Key Statistics About Breast Cancer in Men? http://www.cancer.org/

American Cancer Society. Can breast cancer be found early?

National Cancer Institute. Screening mammograms: Questions and Answers.

Our consultation is nearly finished when my patient leans forward, and says, “So, doctor, in all this time, no one has explained this. Exactly how will I die?” He is in his 80s, with a head of snowy hair and a face lined with experience. He has declined a second round of chemotherapy and elected to have palliative care. Still, an academic at heart, he is curious about the human body and likes good explanations.

“What have you heard?” I ask. “Oh, the usual scary stories,” he responds lightly; but the anxiety on his face is unmistakable and I feel suddenly protective of him.

“Would you like to discuss this today?” I ask gently, wondering if he might want his wife there.

“As you can see I’m dying to know,” he says, pleased at his own joke.

If you are a cancer patient, or care for someone with the illness, this is something you might have thought about. “How do people die from cancer?” is one of the most common questions asked of Google. Yet, it’s surprisingly rare for patients to ask it of their oncologist. As someone who has lost many patients and taken part in numerous conversations about death and dying, I will do my best to explain this, but first a little context might help.

Some people are clearly afraid of what might be revealed if they ask the question. Others want to know but are dissuaded by their loved ones. “When you mention dying, you stop fighting,” one woman admonished her husband. The case of a young patient is seared in my mind. Days before her death, she pleaded with me to tell the truth because she was slowly becoming confused and her religious family had kept her in the dark. “I’m afraid you’re dying,” I began, as I held her hand. But just then, her husband marched in and having heard the exchange, was furious that I’d extinguish her hope at a critical time. As she apologised with her eyes, he shouted at me and sent me out of the room, then forcibly took her home.

Metastasis: essential facts about cancer

It’s no wonder that there is reluctance on the part of patients and doctors to discuss prognosis but there is evidence that truthful, sensitive communication and where needed, a discussion about mortality, enables patients to take charge of their healthcare decisions, plan their affairs and steer away from unnecessarily aggressive therapies. Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression. It also does not hasten death. There is evidence that in the aftermath of death, bereaved family members report less anxiety and depression if they were included in conversations about dying. By and large, honesty does seem the best policy.

Studies worryingly show that a majority of patients are unaware of a terminal prognosis, either because they have not been told or because they have misunderstood the information. Somewhat disappointingly, oncologists who communicate honestly about a poor prognosis may be less well liked by their patient. But when we gloss over prognosis, it’s understandably even more difficult to tread close to the issue of just how one might die.

Thanks to advances in medicine, many cancer patients don’t die and the figures keep improving. Two thirds of patients diagnosed with cancer in the rich world today will survive five years and those who reach the five-year mark will improve their odds for the next five, and so on. But cancer is really many different diseases that behave in very different ways. Some cancers, such as colon cancer, when detected early, are curable. Early breast cancer is highly curable but can recur decades later. Metastatic prostate cancer, kidney cancer and melanoma, which until recently had dismal treatment options, are now being tackled with increasingly promising therapies that are yielding unprecedented survival times.

But the sobering truth is that advanced cancer is incurable and although modern treatments can control symptoms and prolong survival, they cannot prolong life indefinitely. This is why I think it’s important for anyone who wants to know, how cancer patients actually die.

‘Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’ Photograph: Phanie / Alamy/Alamy

“Failure to thrive” is a broad term for a number of developments in end-stage cancer that basically lead to someone slowing down in a stepwise deterioration until death. Cancer is caused by an uninhibited growth of previously normal cells that expertly evade the body’s usual defences to spread, or metastasise, to other parts. When cancer affects a vital organ, its function is impaired and the impairment can result in death. The liver and kidneys eliminate toxins and maintain normal physiology – they’re normally organs of great reserve so when they fail, death is imminent.

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food, leading to progressive weight loss and hence, profound weakness. Dehydration is not uncommon, due to distaste for fluids or an inability to swallow. The lack of nutrition, hydration and activity causes rapid loss of muscle mass and weakness. Metastases to the lung are common and can cause distressing shortness of breath – it’s important to understand that the lungs (or other organs) don’t stop working altogether, but performing under great stress exhausts them. It’s like constantly pushing uphill against a heavy weight.

Cancer patients can also die from uncontrolled infection that overwhelms the body’s usual resources. Having cancer impairs immunity and recent chemotherapy compounds the problem by suppressing the bone marrow. The bone marrow can be considered the factory where blood cells are produced – its function may be impaired by chemotherapy or infiltration by cancer cells.Death can occur due to a severe infection. Pre-existing liver impairment or kidney failure due to dehydration can make antibiotic choice difficult, too.

You may notice that patients with cancer involving their brain look particularly unwell. Most cancers in the brain come from elsewhere, such as the breast, lung and kidney. Brain metastases exert their influence in a few ways – by causing seizures, paralysis, bleeding or behavioural disturbance. Patients affected by brain metastases can become fatigued and uninterested and rapidly grow frail. Swelling in the brain can lead to progressive loss of consciousness and death.

In some cancers, such as that of the prostate, breast and lung, bone metastases or biochemical changes can give rise to dangerously high levels of calcium, which causes reduced consciousness and renal failure, leading to death.

Uncontrolled bleeding, cardiac arrest or respiratory failure due to a large blood clot happen – but contrary to popular belief, sudden and catastrophic death in cancer is rare. And of course, even patients with advanced cancer can succumb to a heart attack or stroke, common non-cancer causes of mortality in the general community.

You may have heard of the so-called “double effect” of giving strong medications such as morphine for cancer pain, fearing that the escalation of the drug levels hastens death. But experts say that opioids are vital to relieving suffering and that they typically don’t shorten an already limited life.

It’s important to appreciate that death can happen in a few ways, so I wanted to touch on the important topic of what healthcare professionals can do to ease the process of dying.

Palliative care at home

In places where good palliative care is embedded, its value cannot be overestimated. Palliative care teams provide expert assistance with the management of physical symptoms and psychological distress. They can address thorny questions, counsel anxious family members, and help patients record a legacy, in written or digital form. They normalise grief and help bring perspective at a challenging time.

People who are new to palliative care are commonly apprehensive that they will miss out on effective cancer management but there is very good evidence that palliative care improves psychological wellbeing, quality of life, and in some cases, life expectancy. Palliative care is a relative newcomer to medicine, so you may find yourself living in an area where a formal service doesn’t exist, but there may be local doctors and allied health workers trained in aspects of providing it, so do be sure to ask around.

Finally, a word about how to ask your oncologist about prognosis and in turn, how you will die. What you should know is that in many places, training in this delicate area of communication is woefully inadequate and your doctor may feel uncomfortable discussing the subject. But this should not prevent any doctor from trying – or at least referring you to someone who can help.

Accurate prognostication is difficult, but you should expect an estimation in terms of weeks, months, or years. When it comes to asking the most difficult questions, don’t expect the oncologist to read between the lines. It’s your life and your death: you are entitled to an honest opinion, ongoing conversation and compassionate care which, by the way, can come from any number of people including nurses, social workers, family doctors, chaplains and, of course, those who are close to you.

Over 2,000 years ago, the Greek philosopher Epicurus observed that the art of living well and the art of dying well were one. More recently, Oliver Sacks reminded us of this tenet as he was dying from metastatic melanoma. If die we must, it’s worth reminding ourselves of the part we can play in ensuring a death that is peaceful.

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