Guide for Patients
ROS1der Tips for ROS1+ Cancer Patients and their Caregivers
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What is ROS1+ Cancer?
ROS1+ cancer is driven by an alteration, or “fusion,” in a gene named ROS1.
In ROS1+ cancer, the ROS1 gene has been altered -- entire sections of its DNA have been swapped with another gene. This is called a gene fusion or gene rearrangement. You may see many different names for ROS1+ cancer:
ROS1 positive cancer (often written as ROS1+ cancer)
ROS1 fusion cancer
ROS1 altered cancer
ROS1 rearranged cancer
ROS1 mutation/mutant cancer
ROS1 oncogene-driven cancer (oncogene = gene that causes cancer)
We call it ROS1+ cancer on this website.
How did I get ROS1+ cancer?
Essentially, getting ROS1+ cancer is just bad luck. We don’t know what causes the ROS1 gene to fuse with another gene. ROS1+ cancer is not known to be associated with any particular risk factor or behavior -- people who get ROS1+ cancer tend to be younger than the average cancer patient, and generally healthy (except for the cancer). It’s likely the gene fusion arose when a cell made a random mistake in copying DNA while duplicating itself (which happens more often than we realize).
How common is ROS1+ cancer?
ROS1+ cancer is not a common cancer. It occurs in approximately 2% of non-small cell lung cancers, and occurs with similar frequency in cancers that start in many other organs such as the brain (ROS1+ cancer was first discovered in glioblastoma), blood vessels (angiosarcoma), skin (melanoma), bile ducts (cholangiocarcinoma), liver, breast, pancreas, and ovaries. However, testing for ROS1+ cancer is standard of care only for non-small cell lung cancer, so people with other types of cancer often are not tested for ROS1 gene fusions. We estimate that less than 1000 cases of ROS1+ lung cancer are diagnosed in the USA annually.
How can I tell if I have ROS1+ cancer?
ROS1+ cancer can only be discovered when your tumor tissue, fluid from a pleural effusion, or a blood sample is sent for biomarker testing. Currently, ROS1 is tested for and found primarily in patients who have lung cancer; however, the ROS1 biomarker has been found in many other cancers, including melanoma, sarcoma, breast and brain cancer. All types of ROS1+ cancer patients and their caregivers are welcome in The ROS1ders patient group.
Why does a diagnosis of ROS1+ cancer matter?
Having ROS1+ cancer may expand your treatment options. Besides traditional chemotherapy and radiation, metastatic stage ROS1+ cancer patients can receive targeted therapy, which clinical trials show is more effective for ROS1+ cancer patients than chemotherapy. Many patients find targeted therapy much more tolerable than chemotherapy and enjoy a better quality of life on these treatments. However, targeted therapies cannot kill 100% of the cancer cells--while they may control and shrink the cancer during therapy, they cannot cure cancer. Patients must continue to take a targeted therapy as long as it continues to work and is tolerable. It's also important to test for ROS1+ cancer because if you have it, then immunotherapy will probably not work for you, and might even make you unable to tolerate a more effective targeted therapy.
How to stay (kinda) calm amid the storm after diagnosis
The days, weeks and months after diagnosis are immensely stressful. Here are a few tips and resources that ROS1+ patients like you recommend.
Be a Savvy Consumer of Online Cancer Info.
Googling for information about cancer can help educate you and allow you to make more informed decisions about your treatment. Patient self-education can be particularly important when navigating a rare disease like ROS1+ cancer, with which many healthcare providers do not have experience.
However, Googling about cancer may also increase your anxiety. You may have already read grim statistics about life expectancy. There are a few things you should consider if you go online:
Online cancer statistics are outdated. By definition, five-year survival statistics are five years old. Look deeper, and you’ll find that survival statistics are improving. For example, the 2021 State of Lung Cancer report from the American Lung Association found the five-year survival for people diagnosed with lung cancer had increased by 14% percent nationally over the past five years. In short, research is improving the odds of surviving cancer all the time.
Cancer is not just one disease. Research has shown “cancer” is actually a number of different diseases driven by different genomic mutations and other factors. The more specific you can be with your online search, the more relevant and useful your results will be. So, if you want to learn about ROS1+ cancer, use search terms like "ROS1 cancer."
Pay attention to the source. The ROS1ders favor information published by reliable sources like well-known academic research institutions, government agencies, and established patient support advocacy groups which usually review and vet information prior to posting. Sharpen your skills for evaluating online cancer information.
Don’t worry. Your ROS1+ cancer cannot be inherited.
A frequently asked question, especially among parents in the ROS1der community, is whether children and other relatives can inherit this cancer. The answer is no, ROS1+ cancer cannot be passed from parents to children. ROS1+ cancer is due to what is known as a "somatic" gene alteration--it is damage that occurred to genes in individual cells during a person's life. Somatic gene alterations like ROS1+ cancer appear only in the cancer cells, and cannot be passed from parent to child. The cause of somatic mutations is unknown -- it could be completely random or may result from exposure to carcinogens.
The biomarker testing that is conducted to reveal ROS1+ cancer is different from genetic testing that is used to find out if someone has inherited mutations that make them more likely to get cancer. Inherited mutations, also known as germline mutations, are those you are born with and are present in every cell of your body. They are passed on to you by your parents. Somatic gene alterations such as ROS1 are not germline mutations.
In other words, you have a lot to worry about right now, but you don’t have to worry about your children and family being diagnosed with what you have.
Don’t let the stigma get to you.
Cancer patients often struggle with the additional burden of stigma when others suggest they somehow caused their own cancer or contributed to its development. This can be baffling and stressful. We believe in fighting for cures for all ROS1ders because no one deserves cancer.
What to Expect from Your Healthcare Providers
ROS1+ cancer is so rare that oncologists can be forgiven for not knowing everything about it when they give you your diagnosis. Even very large cancer centers may have encountered only a few ROS1+ patients. That means that you may need to partner with your oncologist to stay on top of information about what’s needed and what’s new. To get you started, here are some best practices for ROS1+ cancer treatment.
Scans. You should expect regularly scheduled scans to monitor the status of your cancer. There is not a universal standard of care regarding the timing of scans. A lot depends on each patient’s individual situation, as well as their doctor’s preferred practices. That said, it is most common for ROS1+ patients in our group to receive CT or PET scans of the body (chest and torso for lung cancer patients) every 3-4 months. In the USA, MRI scans of the brain are done every 6-12 months unless the patient has known brain metastases, in which case scans will be done more frequently. However, some physicians only order brain MRIs if the patient shows neurological symptoms, and some countries do not offer brain MRIs at all.
Usually doctors prescribe CT scans to monitor cancer in the body. CT scans are effective in monitoring whether or not cancer progresses, and are easier and faster to administer, as well as less expensive and more readily covered by insurance than PETs. PET scans are typically used only at initial diagnosis and when progression is suspected based on other tests.
Blood tests. You should expect regular blood tests to monitor how you are responding to the treatments and to monitor how treatments are affecting your body and different organs.
Consultation with ROS1 Clinician-Researcher. Many oncologists have little or no experience treating ROS1+ patients. You might want to seek out a ROS1 Clinician. It is also reasonable to request that your care team be open to consulting with a ROS1 Clinician-Researcher--an oncologist who has a great deal of experience with and understanding of ROS1+ cancer. Depending on the circumstance, some ROS1ders have found it helpful to seek a second opinion from these clinician-researchers.
Managing symptoms, side effects and stress. Your healthcare team should help you cope with cancer symptoms and side effects of treatment. A healthy diet, exercise, and hydration may help your body respond well to treatment, but some patients still have difficult reactions to their targeted therapy drug. Treatment side effects are a common topic amongst ROS1ders in our private ROS1+ Cancer Facebook group. We have compiled ROS1ders' most commonly discussed side effects and helpful suggestions to address them on our Coping with Side Effects Page. Your care team can also help you manage the stress and anxiety that are very common for cancer patients. In addition, some providers may refer patients to palliative care to help manage symptoms, side effects, and stress. Please do not fear palliative care. Although hospice care, which comes at the end of life, falls under the umbrella of palliative care, palliative care and hospice are not synonymous. Palliative care strives to help patients improve their quality of life, even for patients in active treatment. Many ROS1ders have found palliative care to be an invaluable resource, even while their cancer is stable on a targeted therapy.
Getting Help and Support
The ROS1ders offer several ways to connect with our community. Please visit our Connect To Our Community page to find out more.
Looking for a Doctor Knowledgeable about ROS1+ Cancer?
Check out our list of ROS1 Physicians who have experience treating ROS1+ Cancer.
The costs of treatment for ROS1+ cancer can be quite high. Unfortunately, The ROS1ders, Inc. does not offer financial aid to patients. Due to the extreme variability in healthcare coverage around the world, it is impossible for us to advise patients how best to navigate and manage their expenses. That said, sometimes there are useful discussions among patients in our private Facebook group.