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.
Blood Tests For Tumor Markers
In some cases, blood tests for tumor markers may be used to help monitor metastatic breast cancer.
For example, you may have blood tests every few months for cancer antigen 15-3 or cancer antigen 27.29 . These tests are similar. Health care providers usually check one, but not both of these blood tests.
Whether the tumor marker test score rises or falls over time may give some information on tumor response to a drug or tumor spread.
Tumor marker tests are not helpful in every case. Some people with rising tumor marker levels dont have tumor growth, and some people with tumor growth have normal or unchanged tumor marker levels.
Health care providers dont make treatment decisions based on serum tumor marker testing alone. They may combine findings from a tumor marker test with information on symptoms and findings from imaging tests . This combined information can help your health care providers understand if a treatment is working well for your cancer.
Talk with your health care provider about whether tumor marker testing is right for you.
What Is Stage Iv Breast Cancer
Stage IV is the most advanced stage of breast cancer. It has spread to nearby lymph nodes and to distant parts of the body beyond the breast. This means it possibly involves your organs such as the lungs, liver, or brain or your bones.
Breast cancer may be stage IV when it is first diagnosed, or it can be a recurrence of a previous breast cancer that has spread.
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What You Need To Know
- The risk of getting invasive ductal breast cancer increases with age: According to the American Cancer Society, about two-thirds of women diagnosed with IDC are age 55 or older.
- IDC can affect men.
- Without prompt treatment, invasive ductal carcinoma can spread to lymph nodes or blood vessels and metastasize throughout the body.
- Identifying characteristics of the tumor, such as whether or not the cells are sensitive to certain hormones, can help your doctor choose the best treatment.
What Is The Prognosis For Invasive Ductal Carcinoma
Your doctor will discuss what you can expect based on the characteristics of the invasive ductal carcinoma and the effectiveness of your treatment.
Specialty centers such as Johns Hopkins Medicines Breast Health Services can offer integrated teams of breast cancer specialists who have skill and experience in surgery, breast reconstruction, chemotherapy, biologic targeted therapy, radiation therapy and other hormonal therapies.
Medical science is making great strides forward in treating breast cancer, allowing our surgeries to be less invasive and improving surgical outcomes and overall quality of life, Wright says.
Breast Health Services
Johns Hopkins breast health services include preventive and noncancerous surgical treatment, risk assessment, diagnostic screenings and treatment for breast cancer.
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What Is Invasive Ductal Carcinoma
Breast ducts are the passageways where milk from the milk glands flows to the nipple.
Invasive ductal carcinoma is cancer that happens when abnormal cells growing in the lining of the milk ducts change and invade breast tissue beyond the walls of the duct.
Once that happens, the cancer cells can spread. They can break into the lymph nodes or bloodstream, where they can travel to other organs and areas in the body, resulting in metastatic breast cancer.
The Risk Of Metastatic Breast Cancer
If youve been diagnosed with metastatic breast cancer, youre not alone. Its estimated there were more than 168,000 women living with metastatic breast cancer in the U.S. in 2020 . Men can also get metastatic breast cancer.
The risk of metastasis after breast cancer treatment varies from person to person. It depends on:
- The biology of the tumor
- The stage at the time of the original diagnosis
- The treatments for the original cancer
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Emotional And Spiritual Care
End-of-life care also includes emotional, mental, and spiritual therapy. A personâs 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 .
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 Breast Cancer Healthline app provides people with access to an online breast cancer community, where users can connect with others and gain advice and support through group discussions.
Breast Cancer Progression Tends To Be Consistent And Predictable
There are many ways that breast cancer can develop but most of the time it starts in the breast ducts.
While cancer is still confined to the breast ducts, specialists refer to it as ductal carcinoma in situ, or DCIS. The good news is that if breast screening detects cancer at this in-situ stage, the chance of survival is close to 100%.
As cancer moves into the breast duct wall and finally begins to affect the surrounding breast tissue, specialists call it infiltrative or invasive breast cancer.
If treatment does not occur, breast cancer will usually spread to other areas of the body . Very often the first area that cancer usually spreads to is the lymph nodes in the underarm area .
Once cancer enters the lymphatic system, it can and usually does spread to other areas of the body. Sometimes this is called distant metastasis.
Not all breast cancers spread first to the axillary lymph nodes and then to the rest of the body. If the breast tumor occurs near the nipple, cancer may spread first to the internal mammary nodes beneath the sternum. And in some cases, the breast cancer can spread via the bloodstream without involving the lymphatic system.
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What Is The Survival Rate For Triple Negative Breast Cancer
Survival rates are a way to discuss the prognosis and outlook of a cancer diagnosis. The number most frequently mentioned is 5-year survival. Many patients live much longer, and some die earlier from causes other than breast cancer. With a constant change and improvement in therapies, these numbers also change. Current 5-year survival statistics are based on patients who were diagnosed at least 5 years ago and may have received different therapies than are available today.
Below are the statistics from the National Cancer Institutes SEER database for survival of all patients with breast cancer, by tumor stage:
| Stage |
|---|
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Coping With Advanced Breast Cancer
Being told that you have advanced or metastatic breast cancer may be very confronting or overwhelming. Some women also find the news that their cancer has spread or come back is more devastating than their original diagnosis.
There are many resources available online to help you further understand the meaning of your diagnosis and how to manage the emotional, physical and practical issues arising from metastatic breast cancer. Below are some links where these resources can be accessed:
Connecting and speaking with others who have gone through a similar experience can also be helpful. Cancer Council runs support groups all across Australia which can provide support and information for people with cancer and their families. Groups in each state can be accessed here:
Although support groups can provide a safe place for people to express their feelings amongst others who share a similar experience, some people are more comfortable talking one-on-one, such as with a counsellor, therapist or trained volunteer . Your GP can also refer you to a psychologist, social worker or other trained therapist. Every person is different and it is important to find a healthy support system that works for you.
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Concern For Displacement With Bi Rads Category 5 Lesions
Some experts express concern about biopsies for category 5 lesions, feeling that the epithelial displacement of tumor cells might accelerate growth. Once removed from the body cancer cells degenerate and die.
However, surgeons prefer that the mass site is disturbed as little as possible. So, a surgeon will obtain a minimal amount of large biopsy using core needle biopsy.
The surgeon will then wish to establish the histologic grade of the tumor, evaluate the sentinel node , and sample hormonal levels. Some physicians prefer the use of a Fine Needle Aspiration biopsy rather than large core samples when the lesion is solid and with high cellular content. But, an FNA biopsy is insufficient to distinguish between DCIS and infiltrating ductal carcinoma
The main goal of any biopsy with BI-RADS category 5 is to confirm the diagnosis and extent of an obviously malignant lesion. Additional diagnostic procedures, particularly imaging and possibly biopsy of the axillary lymph nodes, will almost always be necessary. Many surgeons will remove the breast lesion in a one-step therapeutic surgery and will thus seek to disturb the site, and the patient, as little as possible.
Plans Have To Be Flexible
My energy is unpredictable, says Sendelbach. I literally never know how Im going to feel from one day to the next. Its so hard to make plans because if I say yes to something thats 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, its most likely not because they dont want to be there. Says Sendelbach, We physically cant do it.
Silberman agrees. Ive been going through for a long time, she says, and Ive had friends drop away. Because of MBC and my treatments, its hard for me to be reliable.
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Examples Using The Full Staging System
Because there are so many factors that go into stage grouping for breast cancer, it’s not possible to describe here every combination that might be included in each stage. The many different possible combinations mean that two women who have the same stage of breast cancer might have different factors that make up their stage.
Here are 3 examples of how all of the factors listed above are used to determine the pathologic breast cancer stage:
Stage 4 Pancreatic Cancer Symptoms
One reason that pancreatic cancer gets diagnosed late is that it can be easy to miss the signs. A person may not know that they have cancer because they do not feel sick. Even if they do have symptoms, they might not bother them much.
The symptoms of pancreatic cancer usually do not start until the cancer cells have gotten into other organs. The intestines are often one of the first places cancer goes. It can also go to the liver, lungs, bones, and even the brain.
Once cancer goes to other parts of the body, a person can start to feel very sick. They can also have serious medical conditions, such as:
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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.
Treatment For Stage 0 Breast Cancer
Not everyone with stage 0 breast cancer needs treatment. If tests suggest that treatment is a good idea, include:
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.
Hormone therapy
The hormone estrogen, found naturally in the body, can impact some types of breast cancer. If a person has estrogen receptor-positive or progesterone receptor-positive breast cancer, a doctor may suggest hormone treatment in addition to surgery.
, the cancerous cells have invaded the surrounding breast tissue. Stage 1 breast cancer has two subcategories 1A and 1B.
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What Is 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 2 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 1 disease. However, stage 2 means the cancer has not spread to a distant part of the body.
At stage 2, 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 2 breast cancer is divided into two categories:
Stage 2A: One of the following is true:
- There is no tumor within the breast, but cancer has spread to the axillary 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 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.
At stage 2, TNM designations help describe the extent of the disease. Most commonly, stage 2 breast cancer is described as:
Stage 2 breast cancer survival rate
Life Expectancy Of Stage 4 Breast Cancer
According to the American Cancer Society, 22% of the patients live five years after being diagnosed of stage 4 breast cancer. Compared to earlier stages of the cancer, this rate is considerably lower. At stage two, the five year survival rate is at 90% and at stage three, it is 72%. This shows that an early diagnosis is important for better chances of survival.
Predicting survival rates for patients are never really accurate. Your age, general health, hormone receptors on cells with cancer, the type of tissue the cancer has affected and your general outlook on life all affect your stage 4 breast cancer life expectancy.
About 50% percent of women who are diagnosed with stage four breast cancer are still alive 18 months after their diagnosis. Over the years, life expectancy for stage four cancer has been steadily and slowly improving. This has been mainly due to combination treatment of surgery, radiation, multiple medications, and a much more positive support network.
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About Those Lymph Nodes
A surgeon will usually take a lymph node biopsy to determine if the breast cancer has spread to the axillary lymph nodes. This is not always necessary, however. A lymph node biopsy is not usually necessary for DCIS. However, for invasive breast cancer, yes, they do need to check the lymph nodes.
Sometimes, doctors will perform a sentinel node biopsy, rather than a full lymph node excisional biopsy if the concerns about cancer spread are minimal. Cancer cells tend to appear first in the sentinel node before spreading to the other nodes, or other areas of the body.