12 Rare Cancers: Symptoms, Treatment, and Outlook
Treating Bone Metastasis
Many different treatments can help if your cancer has spread to bone, commonly called bone metastasis or bone "mets." Treatment can't cure bone metastasis, but it can relieve pain, help prevent complications, and improve your quality of life.
When breast cancer spreads to other parts of your body (metastatic breast cancer), it's more likely to spread to your bones than any other organ. More than half of those with stage IV breast cancer will have bone metastasis, most often in the spine, pelvis, ribs, arms, and legs.
Doctors use two types of treatments for metastatic cancer in the bones. Systemic treatments can reach cancer cells throughout the body. Local treatments directly target the cancer in the bone.
The treatment you get will depend upon:
Let your doctor know if your treatment isn't easing your pain and other symptoms. You may find that other approaches work better for you.
Chemotherapy is a common systemic treatment for bone metastasis. Your doctor will use a type of chemo that is effective against your primary tumor. So if you have metastatic lung cancer, for example, your doctor will use drugs that are effective against lung cancer.
How it works. Cancer medications target and curb cancer growth. In most cases, you take chemo by mouth or through a vein (by IV). This can often shrink the tumors, which will ease your pain and help you feel better.
Possible side effects. Chemo can kill normal cells in addition to cancer cells. The side effects you might have will depend on:
Common side effects of chemotherapy include:
Your doctor can help you prevent or manage these. Most side effects go away once you stop treatment.
Some types of breast and prostate cancers may be sensitive to hormones in the body. This still holds true when those cancers spread to the bones.
In some cases, your doctor may prescribe medications to block the interaction between certain hormones and cancer cells. In other cases, your doctor may suggest removal of hormone-making organs like the ovaries.
These drugs help prevent bone loss and fractures and treat damage to your bones from bone cancer tumors. They may also help with pain due to these tumors. There are two main types that doctors recommend for metastatic breast cancer: bisphosphonates and denosumab.
Bisphosphonates – ibandronate (Boniva), pamidronate (Aredia), and zoledronic acid (Zometa) – prevent bone loss or osteoporosis from endocrine treatments given for breast cancer. You take bisphosphonates by mouth or IV infusion, typically every 3 to 4 weeks. These drugs help by:
Side effects include:
A rare and serious side effect is bone death (osteonecrosis) of the jaw. Ask your doctor about precautions to take before beginning this treatment. Osteonecrosis may cause:
Denosumab (Prolia, Xgeva) is a type of medicine called a monoclonal antibody. Scientists make monoclonal antibodies in a lab. They work like the natural antibodies your body makes to fight illness. Monoclonal antibodies go into your body to identify and attack germs or cancer cells. Denosumab in particular is a "RANKL inhibitor." It blocks a protein called RANKL that breaks down bone.
Your doctor will inject the drug under the skin. It may take some months before any bone tumors start to shrink.
Denosumab may work as well as or better than bisphosphonates to prevent fractures. But it also can cause osteonecrosis, as well as low calcium levels in the blood.
Both denosumab and zoledronic acid also prevent spinal compression in women with cancerous growths (metastatic lesions) on the spine.
These drugs contain radioactive elements that target cancer cells. Doctors tend to use this systemic treatment when the metastasis is stimulating new bone growth. This is more common with prostate cancer.
If your cancer has spread to many bones, these drugs may be a better option than standard radiation, which uses a beam to aim radiation at each bone metastasis. However, sometimes doctors combine radiopharmaceuticals and standard radiation.
How it works. The doctor injects a single dose of the drug into a vein. It then travels to the areas of bone with cancer and gives off radiation to kill the cancer. This single dose may be effective against pain for several months. You can receive another treatment later.
Possible side effects. The most common ones include:
This systemic treatment helps your immune system spot and more effectively kill cancer cells. Some methods of immunotherapy have been used for a while, and some are still experimental.
How it works. Immunotherapy works in one of two main ways:
Examples of immunotherapy for cancer include:
Possible side effects. Side effects vary, depending upon the type of immunotherapy. They may include:
Radiation is a "local treatment" because it does not affect your entire body. It uses high-energy X-rays or particles to destroy or slow the growth of cancer cells in the bone. It helps most if you have only one or two bone metastases. You may get it alone or combined with other types of treatment.
How it works. A machine focuses a beam of radiation on the bone metastasis. This treatment, called external beam radiation, lasts only a few minutes. You may receive radiation in one large dose or in smaller amounts over several treatments.
Possible side effects. Early, temporary side effects depend on the location being treated, but may include:
Surgery can often help relieve bone metastasis symptoms.
How it works. If a bone is broken, surgery may help relieve pain quickly. Surgery can also help stabilize a weak bone to keep it from breaking. The surgeon may insert:
Possible side effects. These include the usual risks of any surgery, such as infection.
If surgery is not an option, your doctor may use a cast or splint, or inject bone cement to help you move better and relieve pain.
With this local treatment, a needle or probe is put into the tumor to destroy it. Though used more often for other types of metastasis, ablation can help if you have a problem with one or two bone tumors.
How it works. Some methods of ablation use chemicals or alcohol to kill the tumor. Two common methods include:
Afterward, the doctor may fill the space created by ablation with bone cement to help stabilize the bone.
Possible side effects. This procedure is generally safe but may cause some temporary soreness, swelling, and bruising.
This noninvasive procedure uses ultrasound energy and imaging technology to provide pain relief by destroying nerve endings in the area of the tumor. Because there is no incision, and no probe is inserted, the procedure is typically done on an outpatient basis with a local anesthetic rather than general anesthesia. While complications are possible, they are rare.
How it works. A specialist uses imaging to target the specific area to be treated with ultrasound. Then, heat that's made when ultrasound penetrates the targeted tissue destroys nerve endings in the bone around the tumor. The destruction of nerve endings results in pain relief.
Possible side effects. Possible complications include skin burns and damage to heat-sensitive organs that are next to the treated area.
Prognosis And Life Expectancy Of Myelofibrosis
Life expectancy for myelofibrosis varies based on age, blood cell counts, and symptoms. Some experience rapid progression, while others may live longer without symptoms. Treatment can help extend your life span.
Myelofibrosis (MF) is a type of bone marrow cancer. This condition affects how your body produces blood cells. MF is a progressive disease that affects each person differently.
Read on to learn more about MF, including the factors that may affect the outlook for this disease.
Some people may go years without experiencing symptoms of MF, while others may experience symptoms earlier.
One of the most common symptoms of MF is pain. Causes vary and can include:
If you're in a lot of pain, talk with a doctor about medications or other ways to manage it.
You may be able to reduce pain at home with:
Treatment side effects depend on many different factors. Not everyone will have the same side effects. Reactions depend on variables such as your age, treatment, and medication dosage. Your side effects may also relate to other health conditions you have or have had.
Some of the most common treatment side effects include:
Side effects usually go away after your treatment is completed. If you're concerned about your side effects or have trouble managing them, talk with your doctor or another member of your care team about other options.
If a hematologist-oncologist, a doctor specializing in diagnosing and treating blood cancers determines that you are low risk and if you do not have symptoms, you may not require treatment until symptoms develop.
Predicting the outlook for MF is difficult and depends on many factors.
Although a staging system is used to measure the severity of many other types of cancer, there's no staging system for MF.
However, doctors and researchers have identified some factors that can help predict a person's outlook with MF. These factors are used in the International Prognosis Scoring System (IPSS) to help doctors predict average years of survival.
It's important to note that these survival estimates are based on survival averages and currently available treatments. As newer treatments are developed, survival rates may also change.
Meeting one of the factors below means the average survival rate is about six years. Meeting three or more can lower the expected survival rate to around one and almost three years. These factors include:
A doctor may also consider genetic abnormalities of the blood cells to help determine your outlook.
People who don't meet the above criteria, excluding age, are considered in the low risk category and have a median survival of over 15 years.
A 2022 study that examined the effect of treatment on MF also found that treating with Janus Kinase (JAK) inhibitors led to a median overall survival of 84 months, which is an improvement from about 64 months a decade ago.
MF is a chronic, life-altering disease. Coping with the diagnosis and treatment can be difficult, but your doctor and healthcare team can help. Communicating with them openly can help you feel comfortable with the care you're receiving and recommend additional support, such as therapy or support groups. If you have questions or concerns, consider writing them down as you think of them so you can discuss them with your doctors and nurses.
Being diagnosed with a progressive disease like MF can also create additional stress on your mind and body. Make sure to take care of yourself. Eating right and getting mild exercise like walking, swimming, or yoga will help give you energy. It can also help take your mind off the stress involved in having MF.
Remember that it's OK to seek support during your journey. Talking with your family and friends can help you feel less isolated and more supported. It will also help your friends and family learn how to support you. If you need their help with daily tasks like housework, cooking, or transportation — or to even listen to you — it's all right to ask.
Sometimes you may not want to share everything with your friends or family, and that's fine too. Many local and online support groups can help connect you with others living with MF or similar conditions. These people can relate to what you're going through and offer advice and encouragement.
If you begin to feel overwhelmed by your diagnosis, consider talking with a trained mental health professional like a counselor or psychologist. They can help you understand and cope with your MF diagnosis on a deeper level.
The following includes common questions about myelofibrosis.
What is the end stage of myelofibrosis?Myelofibrosis, unlike other types of cancer, does not use a staging system. Instead, it uses risk categories to estimate average survival rates.
About 10-20% of MF cases develop into acute myeloid leukemia (AML), which is challenging to treat and associated with a poor outcome.
What is the life expectancy of a person of someone with myelofibrosis?The life expectancy for a person with myelofibrosis depends on individual risk factors, including age, disease progression, and response to treatment. According to a 2022 study, treatment can add as much as 7 years to a person's lifespan.
Is myelofibrosis a critical illness?MF can progress quickly or slowly depending on genetic factors, age, and disease progression. Symptoms may include fever, fatigue, and changes in blood cell counts. As the disease advances, it causes bone marrow scarring and can lead to serious complications such as blood clots, anemia, and excessive bleeding. In about 20% of cases, MF can progress to AML.
What is the best treatment for myelofibrosis?The only treatment that can cure MF is a stem cell transplant. However, this procedure comes with many risks, especially for older adults and people with additional health conditions. Otherwise, medications are available to manage the symptoms.
A person's outlook with myelofibrosis can vary from around 1 year to more than 15 years, depending on individual risk factors and disease progression.
Some people may go years without developing symptoms, while others may have a more rapid progression.
Treatment may help reduce symptoms, slow disease progression, and improve your quality of life.
Child Cancer Survivor: Kids Deserve Better TreatmentsOpinion
In December 2017, when I was 11, I was diagnosed with osteosarcoma, a rare bone cancer. I was one of the lucky ones—the tumor in my right femur had not spread to other parts of my body. My doctor assured me that my treatment would be as straightforward as it could be.
At the time, I was relieved. I finished nine rounds of chemotherapy in 2018 and had the last of nine surgeries in 2022. It wasn't until this year that I learned that my "straightforward" treatment protocol hadn't been updated in decades. It has been 40 years since osteosarcoma got a new drug for treatment.
When I discovered this, I felt nothing but anger. I'd lost two friends to the very same disease—two brave young women who had battled for years. I was lucky to keep my leg after everything that had happened, but several of my friends have lost their limbs.
Scientists work in a laboratory to study cancer and create treatments. Scientists work in a laboratory to study cancer and create treatments. JEFF PACHOUD/AFP via Getty ImagesThis could have been avoidable if adults would just learn to play by the same rules kids are taught—to share.
There's a plethora of roadblocks in the way of research and it's even tougher for pediatric cancer. Only 4 percent of federal cancer research funding is dedicated to childhood cancer, despite it being one of the leading causes of death by disease for children. Children's cancers also behave differently than adult cancers, oftentimes being more aggressive.
The lack of funding is largely due to the fact that children are more likely to get rare diseases. It's more than just money. Gathering data to find a cure is a major challenge for rare illnesses like osteosarcoma. Cases are scarce, and willing research participants are even scarcer.
Let's do the math: there are about 1,000 people diagnosed with osteosarcoma every year. In contrast, more than 200,000 cases of lung cancer and 240,000 cases of breast cancer are diagnosed every year. Big data can only be proven powerful when dealing with large quantities of information.
More common diseases have treatments updated regularly—for example, both breast and lung cancer have had new treatment drugs approved by the FDA this year. That's not the case for diseases like osteosarcoma.
To make matters worse, in the United States, most cancer research opportunities are only presented to patients being treated at large academic hospitals. Many cancer patients in the United States are treated at community hospitals, where research is not often being administered.
"Patient volume is so important in order to analyze trends and see patterns," explained Christina Ip-Toma, the director of scientific programs at MIB Agents, an organization dedicated to osteosarcoma research and education. Her job fosters collaborations within the community to advance research for improved treatments and outcomes.
"In reality with diseases like osteosarcoma, you have 10 patients participating in a study and 10 participating in another study," she says. "We could have had 100 patients in a study, but instead we have 10 participating in 10 different studies and none of that data is connected."
There are some solutions in place. Count Me In, a nonprofit organization of the Broad Institute of MIT and Harvard, partners with patients to conduct research. The patient-reported data is placed into public depositories for the global research community—combining the clinical, genomic, molecular, and personal data without sharing any identifying information.
"We specifically try to look for a disease space that is under-researched," says Beena Thomas, Clinical Data Manager for Count Me In. Count Me In currently has projects dedicated to rare cancers such as osteosarcoma and leiomyosarcoma (muscle cancer), as well as pediatric brain tumors and metastatic breast cancer, and is open to anyone who has ever been diagnosed with any type of cancer.
"There's so much support the patient needs," says Thomas. "There's language barriers, patient trust, patient burden. I honestly cannot imagine going through something as difficult as any type of cancer and thinking about research at the same time. Even in remission, it's such a really hard, emotional journey for the patient. So, what are the ways that we're actively making research as accessible as possible to everybody?"
Ip-Toma also emphasized the need to ease patients' burdens. "For example, 'I want to share my medical records, but there's 10 places I can choose to send it to.' It's just complicated—which one's better? Where will it have the most impact?"
Sharing data internationally would be ideal to increase patient volume, yet it leads to other roadblocks. Many research institutions are unable to share already-rare data with others even within the United States.
In contrast, places such as Canada or the United Kingdom have universal health care systems, which makes data sharing easier. "In Canada, you have to go to a cancer center to receive care," said Noorshifa Arssath, a project coordinator at Count Me In. "So, we're only pulling data from participants from maybe five to 10 hospitals or institutions because those are the only places you can receive care." This means data sets are compatible on a nationwide scale—but incompatible across systems. This becomes an even bigger problem when attempting to share data with the U.S., which has non-standardized health care systems.
There are other institutions like Count Me In. For example, Project:EveryChild aims to maintain a registry for childhood cancers, including a biobank for tumors, DNA, and clinical data. Another organization, Pattern.Org, is dedicated to rare diseases and shares fresh tissue samples with researchers directly after surgery.
But such patient-driven data centers are not the solution.
"The research is being done, but at different institutions with repeated efforts," Arssath says. "[At conferences] various researchers would go up on stage and present similar studies. Being able to come together as a research community as opposed to siloed research efforts would make a difference in cancer discovery in general."
So, children's cancers are aggressive and underfunded. There's very little research done for rare pediatric cancers—there are few patients that can participate in research to begin with, and those patients are spread thin.
The true solution is coordinated data sharing between institutions and internationally—but with the current system, it's close to impossible.
Having a universal database for every illness would solve all the issues with data sharing. It would allow patients an easy experience when participating in research and would allow great strides to create better treatments for all types of diseases.
Kids are told to share their toys while teens are scorned for oversharing. But, for the sake of those battling cancer, please scrape all our data and make it big.
Gillian Bomi Okimoto is a New York City high school senior. She is a cancer survivor and is an advocate for improved pediatric cancer research and education, particularly for rare diseases.
The views expressed in this article are the writer's own.
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
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