Cancer Diagnosis - What to Do?
You've Got Questions
You've been diagnosed with cancer... now what?
There are practical issues that need to be addressed. You'll find some practical advice here that will help you lessen the stress and improve your medical treatment, as well as recommended reading below.
Disclaimer: I'm not a doctor or health care professional. If you're seeking medical advice, please consult your physician.
You Are Your Own Best Advocate
Receiving a cancer diagnosis comes as an utterly gut-wrenching shock. It disrupts your life, the lives of your loved ones, and is one of the most stressful things that will ever happen to you. As you fight this terrible disease, it's easy to become so focused on how you feel or what's going to happen next that you forget important things that need to be addressed. Here's some advice on what you (or your caregiver) should do to avoid frustration and more stress.
BE HONEST AND PRECISE Physicians can't read your mind, and now is not the time to be stoic. Symptoms and sensations you're experiencing or concerns you may have might be a signal to your doctor that something is wrong, or your medication needs adjustment. When the doctor asks, "How are you feeling today?" - tell him or her. Be honest. If you have things you want to bring up during the appointment, write them down in advance, and take the list with you to the doctor's office.
During and after treatment, make a record of any out-of-the-ordinary events like fainting, dizziness, seizure, problems with your vision, etc. Record the date, time, treatment (like an ER visit), who treated you, recommendations or follow-up visits, and be sure to bring this up with your primary oncologist or doctor. If you're able, keep a daily updated journal and jot down any symptoms you experience when they happen, that way you won't forget. Be precise. For example, if you feel feverish, take your temperature and make a record of it. If you're experiencing pain, make a record using a scale from 1 - 10 (with 10 being the worst pain you've ever felt) - this is a useful diagnostic tool.
Don't rely on your memory, and don't assume your doctors are up-to-date. They probably aren't, so it's up to you to ensure they have the most recent facts about your case.. If you can, bring someone with you to the appointment to take notes, or take along a digital recorder so you have a record of what was discussed.
While undergoing treatment, you'll be seeing a number of people like doctors, oncologists, specialists, therapists, social workers, nurses and physical therapists, and you might be going to different places like doctor's or oncologist's offices, hospitals, specialist cancer treatment centers, emergency rooms, clinics and cancer wards. Your full up-to-date medical records will likely not be available to every doctor or medical worker you see. You will need to bring your records with you to every appointment. Organize a three-ring binder with:
Treatment schedule and doctor's appointments. Be sure you put a calendar into your binder and write down every appointment you've got scheduled. Don't rely on your memory. Write it down. Include the doctor's (or hospital's) telephone and fax numbers in case you need to cancel or reschedule, so the information will be at your fingertips.
Include your personal medical details like height, weight (especially important, you may want to keep a chart), blood pressure, temperature, pulse and blood type. Track any changes in bowel movements, vision, blood pressure, pulse, temperature, weight and stamina. Record changes to your mental or emotional state like mood swings or periods of depression.
Make a list of all important contact information (telephone number, address, fax) for your doctors, oncologists, hospital and treatment centers (include admitting, cancer ward, ER, accounting, patient services like counseling), health insurance company, family members, friends and supporters, and drugstores where you'll be getting prescriptions filled. Don't forget emergency contact info for yourself - in the event you suffer an emergency and are unconscious or unable to use the phone, somebody needs to know who has to be immediately contacted on your behalf and why.
Keep copies of all medical tests including blood tests, biopsies, X-rays, MRI and CAT scans, nuclear scans, PET scans, PT scans, etc. Include all pertinent information like dates the tests were done, who performed the test, the test results, recommendations and follow-ups. Make record of surgery, transfusions, hospital visits; the reason you received treatment, who performed the treatment, follow up visits and results.
If you have a problem obtaining your medical records, check the laws in your state to find out what your rights are. Contact the hospital or clinic's Records Department or Patient Services to learn their policies. Many hospitals and clinics require written authorization or filling out a form. Find out what you need to do. Be aware the HIPAA Privacy Act of 1996, the Federal Freedom of Information Act and the Federal Privacy Act of 1974 gives you the right to a copy of your own medical records unless specific criteria is met for denial. If your request is refused, ask for a written letter of denial, then contact a patient advocacy group, state medical board or an attorney. Also be aware that some hospitals and clinics keep patient records for a limited time. Don't procrastinate.
Make a list of all current medications, including such information as who prescribed the medication, the dosage, when you began taking it, what time of day you take it, and any special instructions. Have several copies of the list handy to pass out to the hospital, clinic, doctor or anyone else who needs to know. Keep it up-to-date. Your doctor may increase or decrease the dosage on a medicine, or switch you to a different medicine. Be aware of your medications instructions. For example, "twice a day" means every 12 hours. Keep a chart of when you need to take your medications as well as the proper dosage. If you end up taking a lot of medication, you may want to invest in a seven-day pillbox.
Don't miss more tips below!
Take Control of Your Own Health
TAKE CARE OF YOURSELF
Cancer treatment often leaves patients with a compromised immune system. Carry anti-bacterial wipes or a travel-sized bottle of anti-bacterial hand gel with you when you go out, and use them often. Wearing a medical mask will generally only protect you for a couple of hours, less if it becomes wet through perspiration, high humidity or rain. Wear sunscreen and a hat, and be aware some medications and treatments (like radiation) may leave skin more sensitive to UV rays. Avoid crowds if possible - lots of people equals lots of germs and viruses. Tell potential visitors not to come if they have a cold or other illness.
Do not take any over-the-counter medications, herbal supplements, natural supplements or vitamins without talking to your doctor first. Some ingredients may not mix with your medications, causing them to be less effective, or even worsening your condition by an adverse reaction. If you receive permission, make sure you include the information on your supplements in your medical records binder. Don't make the mistake of thinking "natural" automatically means safe. Get professional medical advice first.
Everyone around you hopes you'll get better, and so do you, but the unexpected can happen. While nobody likes to talk about death, some issues do need to be discussed in the event the worst happens. There's no need to be morbid, just be practical. It's better to have a plan in place and not need it.
Sit down with your family and discuss these issues as they pertain to you: medical power of attorney, living will, hospital or clinic DNR (do not resuscitate) order, obituary, funeral arrangements, last will and testament, disposition and division of personal effects and personal property, and an emergency plan to cover the death of your caregiver. Keep copies of documents like power of attorney, DNR and living will in your binder in case there are any questions and you're unable to make your wishes known.
If you aren't sure what medical documents you might need, ask the hospital or a cancer support person. They will help you.
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