In this article, we discuss the available sources of information for cancer patients and families, and how to go about obtaining the best information for cancer treatment.
Cancer care requires complex decision-making. This is ideally made with the complete involvement of a well-informed patient and their family. Best treatment outcomes are obtained with knowledgeable patients who understand and actively participate in the treatment process. Access to good quality information is therefore especially important in the oncology setting.
A sensible approach is to get the best out of each of the following sources and filter out irrelevant or harmful information.
- Primary treating doctor/oncologist: Your doctor is the professional medical expert, and there is no substitute for their knowledge and experience. The doctor provides crucial information about the diagnosis, prognosis (chances of cure, prospects of recovery), treatment options, pros and cons of each option, and financial costs of treatment. They are also responsible for developing a comprehensive treatment plan in joint consultation with the patient and family.
The doctor, however, may not be able to fill in all the gaps in the patient’s understanding. Interaction with the doctor is formal and is limited to the clinic/hospital setting. Since a lot of information is shared in a short time, many people find it difficult to understand and retain all that is being conveyed (especially if the doctor tends to use a lot of medical jargon!). It may take multiple consultations to grasp the complete picture – but there should be no hesitation on the part of the patient to ask as many questions as required for a thorough understanding. The doctor can also help guide you to suitable support groups, or suggest trusted internet resources.
Sometimes a second opinion from another expert in the same field can help fill in gaps in understanding, and provide a clearer viewpoint.
- Family and friends: They can be an excellent source of mental and emotional support. They can also be in a better position to understand the discussion with the doctor and help convey the required information to the patient. They could also be active in seeking a second opinion or do other forms of research on behalf of the patient. They are highly motivated in seeking the best for their loved ones and can spend a lot of time with them.
It is extremely important to remember that despite the best of intentions, family and friends are not medical experts, and their role is not to supplant or unduly influence clinical decision-making.
- Other patients: Cancer Survivors are in a unique position of having first-hand knowledge of the challenges in overcoming this disease. They can be a great source of motivation and inspiration, being living examples of winners in the fight against cancer. They can also offer useful personal tips from their experience, especially for non-medical issues such as tailored recipes, local shopping resources (custom garments, prostheses, wigs, etc), introduction to self-help groups, and the like.
Again, keep in mind that they are NOT medical experts. While their personal experiences can help guide another person, there are several factors that determine the treatment and the disease course of each cancer patient. Each individual patient is different, and every cancer can behave differently. If a cancer survivor is like an experienced airline passenger who can offer tips and tricks for a pleasant journey, the doctor is the pilot delivering you to the destination!
- Groups and communities (offline and online): Self-help groups formed by cancer survivors help newly diagnosed and recovering patients understand and come to terms with their cancer. Treatment costs in different centers can be compared, and feedback regarding overall care can be shared. Some groups leverage their numbers to get bulk discounts for products useful to cancer patients and source donations for helping the underserved. Discussion forums can be a good place to listen to others’ experiences, and get a sense of what to expect in their own journey.
Before getting involved, it is important to verify the authenticity of any group. There can be unscrupulous elements out to take advantage of vulnerable cancer patients. Be especially skeptical about claims of “miracle cures” or “treatment without side effects” – families in mental and emotional turmoil easily fall prey to false hopes. If possible, ask your doctor to recommend groups in the region you are in.
- Internet: The internet is a vast source of information. Used well, it provides useful, accurate and up-to-date information, which can be accessed at one’s convenience. Websites, blogs (like this one!), pictures, interviews, podcasts, videos – the choice is endless and each person can choose the medium they are most comfortable with.
A search on Google’s search engine for “cancer treatment” yielded 81,10,00,000 results! There is no restriction and no regulation to posting on the internet. The challenge is to identify genuine sources of information. One should learn how to filter out misleading(but popular) information, as well as advertisements.
My next post is a compilation of a few useful and trustworthy internet resources for cancer patients – https://drsurajmanjunath.com/top-five-cancer-treatment-resources-on-the-internet/
To summarize, knowledge is key to a successful outcome in cancer care. Each individual should be able to access the best available information from trusted and genuine sources.