I sometimes think how afraid and isolated my great grandmother must have felt as colon cancer took her life, or how frightening it was for my grandmother to have only her doctor’s experience and knowledge of her condition to guide her during her treatment for uterine cancer. I wonder how alone my mother must have felt or how maddening it must have been to not have information easily obtained about her diagnosis and treatment for ovarian cancer in the 70’s. It must have been hard for my dad to cope with lung cancer in the early 90’s having no one to talk to who was experiencing the same horrible disease that killed him. Without access to social media to educate, guide and comfort me, I am certain my experience with cancer would be far different and far more challenging.
Today people can connect with others all over the world experiencing similar health situations. It helps people find someone of which to share a “me too” moment. On-line support groups give members the ability to ask questions about side effects from treatments or find help in making treatment decisions. People can vent easily about their insurance plans being inadequate, or share that a pharmaceutical company has agreed to help them with the costs associated with their life-saving drug(s). Questions about pathology or scan reports that have unfamiliar medical terms can be easily understood by finding someone who can clarify the meaning or by simply typing the word into a web browser. How wonderful it is to read about the newest research, clinical trials and new drug information shared by a Facebook group member or by someone you follow on Twitter. There is a freedom and emotional release in being able to blog about the resentment and frustration you might have about an oncologist that does not want to order an MRI to look for brain metastases because you have no symptoms and saying if something was found it would complicate your current treatment plan. (It is as if she said, “If there are any mets to your brain, we will just let them grow willy-nilly. Why worry until we have to—ugh.)
Also, you never know what you might find simply lurking and learning from reading the posts and comments of others. Sometimes I participate in discussions, other times I lurk. On one particular lurking day I came across a discussion on Inspire 's Advanced Breast Cancer Group. An active member, Best Bird, wrote about Cyberknife and lung metastases giving me a treatment to consider if my lung mets ever grew. Well, my remaining one did. My asking if the progressing nodule could be zapped by Cyberknife completely changed my life, presently NED--no evidence of disease. My oncologist had not given any thought to radiating that nodule. If not for the happenstance of my reading Best Bird’s words, I would have never known about it. I would have moved on to the next standard course of treatment, and who knows if I would be alive today--thanks Best Bird!.
Recently an article from Healthline called The 2017 The State of Cancer Report: The Impact of Digital Information and Patient Support Networks by Ann Pietrangelo and Whitney Akers came to my attention. It reported the results of their survey of 1500 people. The participants were either living with cancers (not just breast), considered a survivor or were caregivers. The questions were designed to determine each individual’s engagement in social media and the reasons for their use of it.The participants were grouped generationally to see if age was a factor in social media activity. Among those surveyed there were 500 Milennials also called Generation Y (approx. ages 18-36), 500 Gen Xers (ages 37 to 52), and 500 Baby Boomers (ages 53-71). The article provides percentages of the number of participants who used social media to make decisions about their doctors, treatments, hospitals and if the internet was used to find information about new drugs, therapies, and clinical trials. Using social media for emotional support was also evaluated. It includes statistics on which generational group was most active. In my own search to find people my age (53) with the same condition (Her2 neu breast cancer), I found out quickly my generation, Baby Boomer, isn’t quite as involved as Millenials. The possible reasons for this are mentioned in the article. It is a lengthy read, but if you can get to the end, you will probably see your reasons for using the internet described within it. Be prepared though to feel a bit left out of the conversation if you are stage IV like me. The article focuses on people during and after cancer. There is no after cancer with stage IV.
I think the most important trend that has developed over recent years in healthcare is the practice of a more patient-centered approach to care allowing patients to be part of the decision making process. The article points out that 62% of Boomers and Gen xers who participated in the survey prefer shared decision-making about their treatments. I think this change is a win for patients everywhere.
Please visit my new page on the bar above to find some social networks that might be able to help you during a time of need.
*Note: Please check with your doctor about any advice offered about treatments in these social groups. I do not want you to take supplements that may impair how your conventional therapy works or encourages you to waste your money on a hope for a cure that has not been proven to affect your specific type of cancer.