I will like to list some tips for Cancer Patient. The following are some tips i found while searching through internet.
1. Breathe
Being diagnosed with a dread disease is a serious, life-changing event. You have every right to worry, but just remember that you are still alive. You can’t change your diagnosis, but you can make the best of your situation and potentially change your prognosis.
2. Decide for yourself how engaged you would like to be with your doctors and in treatment decisions.
If you’re a person who’d rather have full faith in your medical team, who would not deal well knowing all the “warts” of treatment, who would become overly disturbed upon discovering the array of errors too often committed in hospitals, or who’d get too angry learning that treatments are often dictated by immediate costs rather than long-term cost-effectiveness, social costs, and patient well-being, then the approach outlined below is probably not for you. Keeping your stress levels down during treatment is hard enough, and knowing “too much” about the reality of your situation may or may not make it worse; you can decide that for yourself. On the other hand, if you think you can stomach some pretty unpleasant details about cancer treatments and the way medicine is sometimes practiced, do read on. Read these tips if you want to become active in decisions about your treatment.
3. Respect your doctors
They are intelligent, skilled, experienced, and caring, and they truly want the best for you.
But understand they are often constrained by "the system." Many doctors are stuck in a cost-conscious and tradition-bound medical system that discourages accommodating individual needs by deviating from standard methods of diagnosis and treatment. It is a very hierarchical profession; status counts, and the patient is usually near the bottom rung of the status ladder. In addition, most medical institutions and insurance companies are reluctant to pay for costlier new or “unproven” treatments or additional tests that don’t fall within the boundaries of commonly used protocols, even if there are good medical reasons to expect that these innovative measures could improve their patients’ chances.
4. Realize that your worries about the costs of this "medicine by the book" are justified
While it is clear that medical professionals must adhere to well-defined, standardized rules and ethical procedures, mainly to ensure the well-being of their patients, some discrepancies exist between performing medicine by the book and doing what is best for the patient. The danger in this is threefold: 1) Poor tests and testing methods may fail to show that a patient is in danger, as would’ve been the case with me had it not been for the three blood tests; 2) Faulty cost-benefit analyses can deny patients needed drugs, which can lead to many risks, including additional health problems, missed time at work, etc.; and 3) These flaws in “the system” may cost medical institutions far more than the cost of the drug or the extra test(s), and when multiplied by thousands of patients, could cause long-term financial hemorrhage.
5. Also understand that there are things only you can know about your body
In most situations, the doctor does know best, but sometimes the patient knows better, at least about how the patient feels and what the patient needs. To best exploit your knowledge of your body and your doctors’ knowledge of your disease, you must form a strong partnership. In a full partnership, you and your doctor should discuss all present and future treatment options and decide on a course of action for the immediate and long term.
6. Get an advocate to help you in expressing to your doctors how you feel and what you need and working with them to find the right treatment solution.
Your advocate can be a professional or a family member or friend – it’s your choice. In selecting an advocate, you should decide what level of interaction with medical personnel fits your personality, knowledge base, and medical situation. Find someone who can intercede at the level you want and help you think ahead about questions you should ask and requests you should make. Of course, your advocate should be someone you trust with very personal information and feel comfortable interacting with, so friends and family members are often ideal.
8. Together, you and your advocate should consider the following topics:
8a. Does the test tell you what you need to know?
There are countless examples in oncology and nearly all other fields of medicine of tests not being given, even if they might give doctors and patients more and better information. In addition, many tests are avoided until “absolutely necessary,” at which point it is possible that less effective – and in the long run, perhaps more expensive – means of detection and treatment will have to be pursued. On a more optimistic note, there are many instances in which the “right” tests are performed as part of standard procedure. The difficulty any patient or his/her advocate will have is in distinguishing between tests that tell them what they need to know and tests that don’t tell them enough. Medicine is constantly improving, but it is still necessary to be diligent, consider what is being done and what it will—or won’t—tell you. Don’t be afraid to ask the doctor why he/she is ordering certain tests and not ordering others.
8b. Subjective probability analysis
Subjective probabilistic analysis, or “Bayesian updating” – named after Thomas Bayes (1702-1761), a clergyman who invented this method for assessing so-called conditional probabilities – is an important decision-making tool. “Subjective,” in this context, means being based on knowledge, experience, intuitive judgment, and/or expertise, and not on preexisting hard data, as too little exists in most situations in which subjective analysis is most useful. This method of decision analysis involves forming an assumption, called a prior probability, and modifying it based on new data to form what is called a “revised prior” – what the Bayesian statisticians call an “a posteori” probability (simply an updated probability based on new information)., in the real world, as topics of inquiry become increasingly complex and involve questions about the future, scientists do not always enjoy the luxury of extensive, comprehensive and reliable frequency data (like clinical trials data) when they need them. Such situations are ripe for the use of subjective probabilistic analysis.
8c. Distinguishing frequency data from process knowledge
In dealing with your dread disease, you or an advocate will learn quickly to distinguish between frequency data and “process knowledge,” which is just what it sounds like: knowledge about what treatments do and how the body reacts. In treating dread diseases, doctors have come to rely on frequency data, which basically consist of large sets of historical results from clinical trials that were conducted on hundreds, or even thousands, of patients, some who got the medicine, device, or procedure being tested, others who got placebos. Such data allow for statistical analysis and observations on what course of action is best for the “average” patient. You may also hear frequency data being called statistical, objective, empirical, or clinical trial data. However, if such data don’t exist for your disease or you are far from being an “average” patient, you may need to rely more on process knowledge and the use of subjective probabilistic analysis.
8d. Thinking ahead
Simply thinking ahead may very well give you a leg up in fighting your dread disease. Make a point of always prepping before appointments so that you come prepared with a list of questions and suggestions.
8e. Prognosis
The news may be better now. The internet is home to a huge amount of data on clinical trials and new treatments, but the information is not centralized or completely up-to-date—and most of it is written in medical shorthard that the average person is not trained to follow. Most sites containing clinical trials databases are months behind in listing new clinical trials, and none include all the trials currently underway. Even the National Cancer Institute’s Web site (http://www.cancer.gov) fails to list some private clinical trials sponsored by pharmaceutical and other companies. To compound the problem, some cancer Web sites give information that just isn’t true or has never been tested. The good news is that the treatments for your cancer may be improved and your prognosis may be better than the Web would lead you to believe. Your doctor should know how to sort bogus data points from credible ones and could very well have information on clinical trials and improved treatments that are so new that they cannot yet be found on the Web. Your doctor may have learned of new treatments from trials that he/she or another doctor in the same hospital or medical facility was conducting, from outside trials, or from attending a medical conference where not-yet-published results were presented. The U.S. National Institutes of Health (NIH) has produced detailed requirements regarding the dissemination of clinical trial data, and one of them states that the institution sponsoring the study should distribute data on the study’s findings to all relevant health care professionals, either prior to or concurrent with the public dissemination of the data. In many cases, your doctor will receive these data well before the majority of the public and well before they are published in medical journals. In choosing a doctor, you will want one who seeks out such information, not one who is too busy to keep up with the literature or learn new techniques, or who sticks to old-fashioned or familiar protocols.
8f. Informed consent
Stay as well-informed as possible about your disease and the pros and cons of various treatments. Read up on the side-effects of different drugs and how they generally affect people of your age. It is up to you and your advocate to decide whether the benefits of treatments outweigh the costs.
8g. What do you really want to know in advance?
Is there a balance between knowing what is most important and not knowing so much as to invoke a power of suggestion (i.e., the “reverse placebo effect”)? Each patient and his/her advocate will have to grapple with this issue and make the decision that is right for them based on the patient’s preferences. It is easier for many of us to accept hardship when we understand the benefits, but that approach might not work for everyone. Decide with your advocate what level of knowledge works for you.
8h. Asking for answers and attention
A single word of advice for patients and advocates: persevere. When you or someone you know has a dread disease, you deserve to have your questions answered and your fears addressed, but it might take some work. Once you have received your diagnosis, and perhaps a prognosis, begin by researching your disease and jotting down a list of questions and concerns you have about your condition and treatment, and make note of any related apprehension that has surfaced. As time passes, you may add to or subtract from the list as necessary –an example of Bayesian updating. If there comes a point at which you have questions you would like answered by your doctors, mull it over or discuss it with your advocate to decide on the best course of action, and then approach your medical team with your request. Remember that your doctors are merely mortals, albeit busy ones, and your concerns should be theirs. It is possible to approach them in a polite-yet-firm manner, and I imagine you’ll be surprised at your own courage under fire. When your life is on the line, there’s no room for backing down or settling for second best.
9. Fight or flight?
In dealing with a dread disease, it is impossible for a patient or his/her advocate to fight every single battle over treatment, but there is a way to decide when to fight and when to take flight. First and foremost, if something comes up that could dramatically impact your outcome, it is well worth a fight. Don’t be afraid to ask to have a protocol overridden or if alternate solutions are available. If such a problem seems to have many solutions, great, but if not, don’t give up; it may still be worth pursuing, as your advocate and medical team may have ideas. When problems arise that most likely won’t affect your long-term health, you must pick and choose your battles.
10. Coulda, shoulda
To avoid having too many regrets about your own treatment, do all the research you can about your disease. Any information on new and successful treatment protocols or new machinery will likely be helpful. If you’re fighting for some treatment option that you think could significantly improve your long-term health, don’t back down! It’s possible that your doctors, who are highly intelligent but sometimes get stuck in routines dictated by protocols, will come to see things your way, or they may give you good arguments why you are wrong. Then, either outcome will be positive and will at least give you peace of mind.
11. A dose of common sense
Sometimes, common sense may be the best medicine. Your doctors do want what’s best for you, but as you might’ve guessed by now, you can’t assume their systems are flawless. If something doesn’t make sense to you or your advocate, ask about it.
12. Just say yes
In the hospital, the street rules about “just saying no” to drugs don’t apply. Sometimes, more drugs can improve the quality of your life, especially if you are able to find a solution that allows you to be coherent when you want or need to be. Once your pain is out of control, it can be very hard to bring it back under control, so don’t feel like you’re a junkie when you just say yes. Your body and mind will thank you.
13. A patient's best allies
Nurses – the primary caregivers, night watch people, sympathizers, and listeners – are a patient’s best allies during treatment. Befriend your nurses and appreciate their continuous care and desire to accommodate you in every way.
14. A left brain vacation
You have a right to mourn, and you should, in order to let your right brain – the more emotional side of the brain – to recover from your dread disease. Don’t be afraid to let your emotion flow. Let the anger and the hurt and the ‘How could this happen to me?’ come out. It is all part of the recovery process.
15. You can mourn, but don't "borrow trouble."
There is only so much you can do in fighting a dread disease. If you and your doctors have agreed on and are pursuing what appears to be the best course of action, there’s nothing else you can do. Stay alert, but don’t “borrow trouble.”
16. The importance of feeling human
During outpatient treatments, if you’re feeling up to it and your doctor permits it, don’t be afraid to allow yourself a taste of the “real world.” Seeing friends, going out to dinner, and even doing some work may be satisfying and make you feel more like a human than a victim. You’re not just a cancer patient, but a human being, and you owe it to yourself to keep your body active and your mind engaged. Just don’t overdo it. Let your advocate and your doctors help you figure out how to strike a healthy balance.
17. A silver lining in the cancer cloud?
Appreciate the positive aspects of your experience with a dread disease, especially if they are aspects that might not have occurred otherwise. For Schneider, it was understanding the extent of the love his friends and family had for him, discovering that his work as a climate scientist had touched people around the world, and realizing that his doctors had gone out of their way to form a partnership with him that led to many positive outcomes. Enjoy the silver lining – it will help you to get through some difficult times.
Dont forget to leave your comments. I will continue my reseach and come up with some new tips next time.
