Dear World You’re Not Going To Have The Year You Thought You’d Have
Her gloom began to lift when she began doing her own research. Loniewska is a Ph.D. toxicologist.She put that expertise to work, and made a welcome discovery.
“I realized that a lot of MBC patients were doing well and the treatments work for a while. And then you switched treatments. You know, there’s always these hopeful stories of people, living five years, 10 years, 15 years.”
Or even more. We all hope to be one of those. But since the 5-year survival rate is just 28% for women and 22% for men, we know many of us won’t be.
There’s a saying in the MBC community: It’s the worst diagnosis, but you meet the best people. I’ve met some good ones. And since a 2020 National Cancer Institute study estimates that 168,000 women in the U.S. are living with metastatic breast cancer, I don’t think I’ll be running out of new friends any time soon.
Correction Dec. 12, 2021
In a previous version of this story, the name of Margaret Loniewska’s daughter was misspelled as Mariana. Her name is Marianna.
I May Not Feel Like A Fighter Theres 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 cancers 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.
Theres not a finish line, she says, so to be in fight mode doesnt 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, its inevitable that youre going to fail.
How To Handle Emotions
Coping with the many symptoms that can occur with stage 4 breast cancer can be frustrating and discouraging, and people sometimes wonder if they will have to feel poorly the rest of their lives. Anxiety and depression are also severe for some people with advanced disease.
Fortunately, palliative care team consults are now offered at many cancer centers. While hospice is a form of palliative care, palliative care can be helpful even with early, curable tumors. Working with a palliative care team to address physical and emotional issues frees you up to work with your oncologist on issues that treat your cancer specifically.
While the research is also young, it appears that those people who receive palliative care consults not only have a better quality of life with advanced cancer, but they may actually live longer, too.
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Metastatic Breast Cancer: What You Should Know
What does it mean to have metastatic, or stage 4, breast cancer? A Rogel Cancer Center oncologist explains the diagnosis and how its treated.
After hearing a diagnosis of metastatic breast cancer, a rush of questions emerges. But often, its not until long after leaving the doctors office.
Metastatic means the cancer has spread beyond the breast and immediate lymph nodes to other organs or tissues in the body, most often the bones, brain, lungs or liver. Its considered stage 4 breast cancer, which means the cancer has progressed to its most advanced stage.
But even though its moved to other organs, it still behaves like breast cancer and is treated with breast cancer therapies.
More than 154,000 U.S. women are estimated to have metastatic breast cancer, according to the Susan G. Komen organization. Men can have metastatic breast cancer too, but its rare.
To help patients fill in information gaps, N. Lynn Henry, M.D., Ph.D., the breast oncology disease lead for the University of Michigan Rogel Cancer Center, explains the nuances of stage 4 metastatic breast cancer.
What are the differences between metastatic breast cancer, stage 4 breast cancer and advanced cancer?
If any doctor uses the term advanced, ask for clarification, Henry adds.
When does metastatic breast cancer appear?
What are the symptoms?
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Additional Tools For Diagnosing Advanced Breast Cancer
The additional tools below are often used specifically for diagnosing advanced cancer:
Sentinel lymph node biopsy: This procedure removes sentinel lymph node cells during surgery for examination. When breast cancer spreads, it often heads first to the lymph nodes.
Chest X-ray: This detailed image of the chest may help doctors see whether cancer has spread to the bones.
Computed tomography scan: Also known as a CAT scan, this procedure takes detailed pictures of internal areas of the body using a computer linked to an X-ray machine. A dye may be used to help the organs show up more clearly in the images.
Bone scan: This procedure looks for bone metastasis, or cancer cells that have spread to the bone. A small amount of radioactive material is injected into the blood, then detected with a scanner.
Positron emission tomography scan: A PET scan is a detailed imaging tool that uses a radioactive drug, known as a tracer, to search for cancer cells within your body.
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A Note From Dr Halls Regarding The Statistics For Metastatic Recurrence In Breast Cancer
The statistic of 20% to 30% for metastatic breast cancer that recurs remain controversial amongst medical experts. The figure of 30% metastatic breast cancer recurrence rate first appears in a 2005medical study, but no statistical data or sources are cited.
The MBCN take the 18-year relative survival rate from the SEERS data between the years of 1990 to 1994 as 71%. The argument is, that this takes us close to the 30% recurrence rate statistic. However, there are many other factors at play and treatment has advanced so much that recurrence rates may have even halved since then.
It is safe to say that much more data and research into metastatic recurrence rates would be of huge value towards a long-term cancer cure.
Indeed, it has also been suggested that research into the rare group of women who survive many years with metastasis may be of equal importance to understanding recurrence and patterns of breast cancer.
Myth #: If Youre Diagnosed With Metastatic Breast Cancer You Did Something Wrong Or Didnt Get The Right Treatment The First Time
When some people hear stage IV breast cancer, they assume something must have been missed along the way to let the cancer get that far. There is a misconception that breast cancer always develops in orderly steps from stages I to II, III, and then IV and that theres plenty of time to catch it early. People with MBC can face misguided assumptions that they must have skipped mammograms or self-exams, or they didnt control risk factors such as not exercising enough, watching their weight, or eating healthy. But a person can do everything right and still get MBC. Although regular screenings increase the odds of diagnosing breast cancer at an earlier stage, they cant guarantee it.
Another major misconception: If youre diagnosed with metastatic cancer after being treated for an early-stage breast cancer, you must have chosen the wrong treatment regimen or it wasnt aggressive enough. But between 20% and 30% of people with an earlier-stage breast cancer will eventually go on to develop MBC and theres often no good explanation as to why. And it can happen to anyone. Treatments can reduce the risk of recurrence, but they cant eliminate it.
As Illimae of Houston notes: that a stage IV diagnosis equals negligence on the part of the patient. In my case, it had spread before I ever felt a lump. I felt it Saturday and saw my doc on Monday, I ignored nothing, sometimes it just happens that fast.
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Starting To Think The Stats Might Be Old Or Just Plain Wrong
Since my diagnosis on June 13, 2012 Ive been scouring various information sources including this web site and others like it.
Despite the dire predictions of two-years following diagnosis, I keep seeing more and more people on these boards who are beating those odds. Granted some by only one-year but many, many others who are going out eight, 10, 12, and even a couple of third-party references to people who have survived 20 years.
I think something that would be very valuable from a morale point of view would be if the ACS or CRC Alliance or other group would collect some data and see whats really happening in terms of Stage IV Colon Cancer. In my unscientific opinion, Im seeing way too many who are outliving the averages for the average to be correct.
What Is Stage 4 Cancer
Stage 4 cancer is sometimes referred to as metastatic cancer, because it often means the cancer has spread from its origin to distant parts of the body. This stage may be diagnosed years after the initial cancer diagnosis and/or after the primary cancer has been treated or removed.
When a cancer metastasizes to a different part of the body, it is still defined by its original location. For instance, if breast cancer metastasizes to the brain, it is still considered breast cancer, not brain cancer. Many stage 4 cancers have subcategories, such as stage 4A or stage 4B, which are often determined by the degree to which the cancer has spread throughout the body. Similarly, stage 4 cancers that are adenocarcinomas are often referred to as metastatic adenocarcinomas.
Liquid cancers, or blood cancers, such as leukemia, lymphoma or multiple myeloma, are staged differently than most other cancers because they may not always form solid tumors. Liquid cancers may be staged by a variety of factors, including:
- The ratio of healthy blood cells to cancerous cells
- The degree to which lymph nodes, the liver or spleen may be swollen
- Whether the cancer has resulted in blood disorders such as anemia
Stage 4 cancer is determined in the five most common cancers this way:
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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.
Stage 4 Breast Cancer: Prognoses And Solutions
Breast cancer cases have doubled in the last 20 years. Women die more often from this disease than all other cancers. Cancers develop inside our bodies, from our own cells that have mutated for some reason. Scientists all over the world have been fighting over the cause of cancer for decades and have come to the conclusion that the diseases destructive mechanisms are triggered by not one but many factors.
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Palliative Care Is Looking Out For Me
I have been living with cancer for 10 years. I have bone and brain metastases, which are stable.
This year has been my biggest challenge, with fractures occurring in my femurs due to a side effect of a bone density drug. Consequently, I now have rods in both femurs and endured two major setbacks due to refracturing around the rods. I have been in a world of pain, and while I was in care in hospital, I was referred to my local palliative care organisation.
Even though I havent had another acute incident, I know that my body is starting to break down and Im comforted and relieved that palliative care is looking out for me to help me manage pain and symptoms so I can continue to live life as well as possible.
This service is free and involves a multidisciplinary team. Thus far I have met a nurse, social worker and occupational therapist. I havent needed them yet, but its so good to have them if my illness progresses.
I see them as an extension of my medical team at home. They have brought up issues in relation to developing a health plan and end of life plan for me and my family. It was done in a very compassionate way and has seeded the thought of organising the next phase in my journey to reduce the trauma for my family and myself.
How Can I Take Care Of Myself While Living With Metastatic Breast Cancer
Living with metastatic breast cancer can be challenging. Your care team can help provide physical and emotional support. Talk to them about how you can:
- Eat the most nutritious diet for your needs.
- Exercise regularly.
- Get emotional support, including finding support groups.
- Reach out for help from friends, family and loved ones.
- Find mental health services.
- Find complementary therapies.
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What Are The Treatments For Metastatic Cancer
Patients with metastatic disease are primarily treated with systemic therapies drugs that work throughout the body. These include chemotherapy, targeted drugs and hormonal therapy. Surgery or radiation may be used to slow the growth or reduce the size of tumors.
Identifying optimal treatment depends on the specific type of breast cancer, specifically the hormone receptor status and the HER2 status of the cancer.
“There are many different types of breast cancer. Oncologists will conduct extensive testing of tumors, with sequencing, and look at specific findings to understand what the cancer might respond to best,” Henry explains.
For example, patients with hormone receptor positive cancers are typically first treated with anti-hormone treatments such as an aromatase inhibitor or fulvestrant, often in conjunction with other targeted drugs. Those with HER2-positive cancer will receive Herceptin or other treatments directed against HER2 as part of treatment. In addition, women with a BRCA gene mutation may receive a PARP inhibitor as part of their treatment.
“More and more treatments are being developed and approved, so we have many more options for treatment now than we did just five to 10 years ago,” Henry says.
Case : Complete Remission Of Stage Iv Melanoma With Ip6 Food Supplement
Inositol hexaphosphate plus inositol induced complete remission in stage IV melanoma: a case report
A case report from Department of Hematology/Oncology, Mayo Clinic, Jacksonville, Florida, USA: a 59-year-old male with metastatic melanoma declined traditional therapy and opted to try over the counter supplement IP6+inositol instead. To his doctors surprise, the patient achieved a complete remission and remains in remission 3 years later, after using IP6+inositol alone.
Images above: Computated tomography with the contrast of the chest before and 2 years after starting inositol hexaphosphate+inositol showing complete radiologic resolution of the upper right hilar lymph node.
Reference:
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How Do Clinical Trials Fit Into The Equation
“I think clinical trials in general are very important, because almost every drug we have in practice right now, we learned about through a clinical trial,” Henry says.
The Rogel Cancer Center always tries to have clinical trials available for all patients, no matter the stage.
“Ask your oncologist about the opportunity to participate in clinical trials, even if it hasn’t been mentioned to you,” Henry says. “It’s one way to get access to new exciting drugs, which may be beneficial.”
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.
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