TriangleWhat to do first after a cancer diagnosis
What should I do first after a cancer diagnosis?
In the first week after a cancer diagnosis, the useful work is getting organized before the big decisions. NCI suggests having the name and stage of the cancer written down, starting a plan for keeping your records from the very beginning, and telling your care team about any cost worries. It also says a second opinion is very common and most doctors welcome one. The checklist below shows each step and its source. Pulling my own copies was the first useful thing I did, and federal law is on your side when you ask.
| Step | What it involves | Source |
|---|---|---|
| The name and stage in writing | Your doctor or nurse writes down the type and stage of the cancer, so you can read about it and follow the treatment choices | NCI |
| Copies of your records | Test results, imaging, medicines and visit notes from each place you were seen; HIPAA gives you the right to see and get copies | HHS, ONC |
| A records plan from day one | One place for treatment plans, results, visit dates, side effects and medicines | NCI |
| A second opinion decision | Another specialist reviews your materials before treatment starts; many insurers pay for one | NCI |
| A care team contact | The name and number of someone on staff to call with follow-up questions | NCI |
| An insurance call | Which tests, treatments, drugs and specialists the plan covers, and your co-pays, deductible and coinsurance | NCI, HealthCare.gov |
| A look at work and leave | Whether FMLA job-protected leave or ADA accommodations, such as a modified schedule, apply to you | DOL, EEOC |
This is not clinical evidence and not medical advice. It does not replace your care team. Discuss anything here with your clinician before you act on it. Product questions are on the FAQ.
Made by Triangle.
The first week after a cancer diagnosis is mostly about getting organized: copies of your records, the name and stage of the cancer in writing, a decision about a second opinion, a contact on your care team, and a look at what your insurance and your job allow. The checklist under the first question shows each step and the public source behind it.
How much time do I have before I need to decide on treatment?
It depends on the cancer, and only your care team can say how soon treatment needs to start. NCI's list of questions for your doctor includes "When will I need to start treatment?", and NCI says you can let your doctor know if you need more time to think before you choose a treatment. NCI also notes that it may take time to work through and accept all the changes, and that counselors and other professionals can help.
Which records are worth requesting in the first week?
The ones that show how the diagnosis was made. NCI notes that a doctor giving a second opinion will need your medical records, such as test results and x-rays, so those make a sensible first request. HHS says HIPAA gives you the right to see and get copies, usually within 30 days and often sooner, and that you cannot be denied access for an unpaid bill. ONC adds that each provider may have its own process, which is the hard part when your care is spread across places. The forms, fees and timelines are covered in How to get copies of your medical records.
Is it worth getting a second opinion after a cancer diagnosis?
Many people do. NCI calls a second opinion very common, says most doctors welcome one, and notes that many health insurance companies pay for it or even require it. Because the first doctor has to make your records available to the second, NCI says it is best to involve your doctor from the start, and its question list includes asking whether your doctor will help you find someone. What to bring, and how to ask, is in the cancer second opinion checklist.
Who is on a cancer care team, and who do I call with questions?
Usually an oncologist, and depending on the cancer, other specialists such as hematologists, radiation oncologists and surgeons, NCI says. To find an oncologist, NCI points to your primary care doctor, your local hospital's list of oncologists, or the nearest NCI-designated cancer center. NCI also suggests getting the name and number of someone on staff you can call with follow-up questions, and telling the team which family members or friends they can share information with. Keeping several doctors on the same page is covered in How to coordinate care with several doctors.
What should I check with my insurance in the first week?
Coverage and costs before the bills arrive. NCI suggests calling your insurer and talking with a benefits coordinator about which tests, treatments and drugs are covered, whether specialists your doctor might refer you to are covered, and what your co-pays, deductible and coinsurance are. Your choice of cancer center may be limited to those in your plan, so you can ask whether a facility is approved. HealthCare.gov says every individual and job-based plan has to give you a short, plain-language Summary of Benefits and Coverage, and that Marketplace plans cannot reject you or charge you more for a pre-existing condition. NCI also points to the hospital billing office or a financial counselor for payment options, and to hospital social workers for programs beyond insurance.
Can I take time off work after a cancer diagnosis?
Often, yes, though the rules depend on your job. Under the FMLA, DOL says eligible employees of covered employers can take up to 12 workweeks of unpaid, job-protected leave in a 12-month period for a serious health condition, with group health benefits continued, and the leave can be taken in pieces or on a reduced schedule when medically necessary. Eligibility generally means at least 12 months with the employer, 1,250 hours worked in the past year, and 50 employees within 75 miles. The ADA covers employers with 15 or more employees, and EEOC says people with cancer should easily be found to have a disability under it. Accommodations can include leave for appointments or treatment, rest breaks, or a modified schedule. EEOC says there are no magic words for asking, and an employer may ask only for documentation sufficient to show the cancer and why the change is needed. NCI suggests your human resources department as a contact for insurance questions too.
How do I keep track of everything from the start?
With one place for it, started now rather than later. NCI suggests getting a plan in place for organizing information about your care from the very beginning of treatment: copies of treatment plans and results, dates of visits, tests and treatments, side effects, and medicines. It also suggests a single sheet with your care team's names and numbers, the type and stage of the cancer, and your treatment plan, kept where you and the people helping you can find it.
Where does Triangle fit in the first week after a diagnosis?
In the records step. Triangle requests your records from participating providers through national networks, takes uploads of the PDFs and scans you already hold, and reads them with you in plain language, so results from different offices end up together in one place. Networks return only what participating providers hold, so a report from a smaller lab may still need a direct request. Triangle does not diagnose or choose treatment. Your care team does.
Your records from every doctor, in one place →
Sources
- NCI: Talking with Your Health Care TeamNCI suggests asking your doctor or nurse to write down the name and stage of your cancer, since knowing them helps you find out more and helps your doctor decide which treatment choices you have.
- NCI: Talking with Your Health Care TeamNCI says to let your doctor know if you need more time to think before you choose a treatment, to write questions down and ask the most important first, and to get the name and number of someone on staff to call with follow-up questions.
- NCI: Talking with Your Health Care TeamNCI says it is very important to let your health care team know which family members or friends they can share information with and when, and that HIPAA gives you the right to receive and review your medical records.
- NCI: Questions to Ask about Cancer TreatmentNCI lists questions to ask before deciding on treatment, including "When will I need to start treatment?", "Will you help me find a doctor for a second opinion on the best treatment plan for me?" and "Will I be able to work?"
- NCI: Emotions and CancerNCI says it may take time to work through and accept all the changes that are taking place, and that people can ask for help from counselors or other professionals.
- NCI: Finding Cancer CareNCI says getting a second opinion is very common, that most doctors welcome one, that many health insurance companies pay for a second opinion or even require them, and that it is best to involve your doctor because they will need to make your medical records, such as test results and x-rays, available to the second doctor.
- NCI: Finding Cancer CareNCI says that to find an oncologist you can ask your primary care doctor, ask your local hospital for a list of oncologists who practice there, or contact the nearest NCI-designated cancer center, and that specialists who treat cancer include hematologists, radiation oncologists and surgeons as well as oncologists.
- NCI: Finding Cancer CareNCI says your choice of cancer centers or hospitals may be limited to those that take part in your health insurance plan, and that you can ask your insurance company whether a facility is approved by your plan.
- NCI: Managing Cancer Costs and Medical InformationNCI suggests calling your health insurance company and talking with a benefits coordinator, reviewing which tests, treatments and drugs are covered, asking whether the plan covers specialists your doctor might refer you to, and asking about co-pays, deductibles and coinsurance.
- NCI: Managing Cancer Costs and Medical InformationNCI suggests talking with the hospital billing office or a financial counselor about payment options, asking hospital social workers about programs beyond insurance, and contacting your human resources department if you work at a company or organization.
- NCI: Managing Cancer Costs and Medical InformationNCI says it may be helpful to get a plan in place for organizing information about your care from the very beginning of treatment: copies of treatment plans and results, dates of visits, tests, treatments, side effects and medicines, and a sheet with your care team contacts, diagnosis type and stage, and treatment plan.
- HHS: Get it. Check it. Use it. (HIPAA right of access)HHS says HIPAA gives you the right to see and get copies of your health information, that your doctor normally has up to 30 days to provide a copy but often can provide it much sooner, and that you cannot be denied access for not paying your medical bill.
- ONC: The Guide to Getting & Using Your Health RecordsONC says a health record includes medications, treatments, tests, immunizations and notes from provider visits, and that getting your record can be a real challenge if you have seen providers in different places because each one may require a different process.
- HealthCare.gov: Summary of Benefits and CoverageHealthCare.gov says insurance companies and job-based health plans must provide a short, plain-language Summary of Benefits and Coverage, and that you can get one for all individual and job-based plans.
- HealthCare.gov: Coverage for pre-existing conditionsHealthCare.gov says all Marketplace plans must cover treatment for pre-existing medical conditions, and that no insurance plan can reject you, charge you more, or refuse to pay for essential health benefits for any condition you had before your coverage started.
- U.S. Department of Labor: Family and Medical Leave ActDOL says the FMLA entitles eligible employees of covered employers to up to 12 workweeks of unpaid, job-protected leave in a 12-month period for a serious health condition that makes them unable to perform their job, with group health benefits continued, and that leave can be taken intermittently or on a reduced schedule when medically necessary.
- U.S. Department of Labor: Family and Medical Leave ActDOL says employees are eligible if they have worked for a covered employer for at least 12 months, have at least 1,250 hours of service in the 12 months before leave, and work at a location where the employer has at least 50 employees within 75 miles; to request FMLA leave, employees must communicate with their employer.
- EEOC: Cancer in the Workplace and the ADAEEOC says Title I of the ADA covers private employers with 15 or more employees and state and local government employers, and that people who currently have cancer, or cancer in remission, should easily be found to have a disability under the ADA.
- EEOC: Cancer in the Workplace and the ADAEEOC says employees with cancer may need accommodations such as leave for doctors' appointments or treatment, periodic breaks or a private area to rest, or a modified work schedule, that there are no magic words for asking, and that an employer may ask only for documentation sufficient to establish the cancer and why an accommodation is needed.