Top 5 sites I used when trying to obtain clarity and make an informed decision.
In 2017 I was diagnosed with Stage IV Triple Negative Breast Cancer. At the time the only standard of care for the type of MTNBC that I had was chemotherapy. A lot has changed since then. Having an understanding of my particular treatment goal was key, when I began my search for information to help achieve this feat. When it came to obtaining information (regarding what my options were) I did a tremendous amount of research. Yes, I tracked down research oncologist and had in depth conversations about what I had read, but where id I start? How did I find some of the research that led me to oncologist, testing, genomic testing and eventual a life extending clinical trial? Well, I looked at a whole lot of stuff. That time spent digging, more than likely saved and extended my life. Below is short list of my favorite go to sites when I was desperately searching for leads and answers. Information is power and when it comes to self advocacy, it is one of the key components.
Inspire.com - An online support group for patients and caregivers. What most struck me about hanging out in this chat room was the amount of support and information one could receive. I was pleasantly surprised at some of the knowledge my peers in the Advanced Breast Cancer group had. Subjects such as symptoms, insurance, clinical trials and research were widely discussed. Users also had the option to download a resource “The Insiders Guide To Metastatic Breast Cancer” by contributor. Patients and caregivers are given the opportunities to participate in focus groups, and webinars for free.
Cancer Commmons.org- When I was in search of articles about patients and their methods in entering a clinical trial Cancer Commons was one of my go to sites. Why? First it was important to get “on the ground” patient stories of what it was actually like to plan, execute and obtain entry into a clinical trial. The added caveat was the ability to get 1:1 attention and consulting for free from a board certified oncologist. I took advantage of chatting online with a oncologist regarding my specific needs just as I was about to start the clinical trial. I was given solid advice on questions (provided by the oncologist) to ask the trial investigator in regards to safety and monitoring, because I would be participating in a Phase !b trial (that contained two immunotherapy drugs, one of which was experimental). As I advanced in the trial, my Cancer Commons oncologist continued to ask for feedback and monitored my progress as I moved along in the trial. Cancer Commons has continued to innovate since I’ve last used them. Cancer Commons has added additional services for patients and caregivers, which is a huge indicator that the administrative team is keeping a watchful eye on patient needs and figuring out ways to support the patient centered vision.
Clinical Trials.gov - Now I know this choice as a favorite will probably go over as “Say What Now?”, but Clinical Trials. gov served a very important purpose. Although the site can be very confusing for the average person to use, when trying to get a clear indication of what trials are available, Clinical Trials.gov showcased something that was even more important to me and that was the exclusionary criteria. In simple terms exclusionary criteria are the list of things and circumstances that will keep a patient out (no access) to a particular clinical trial. In my case it was not just about finding the trial, but having a very clear understanding early on the value of exclusionary criteria and making sure that I did not do anything moving forward (at the time) to keep me from being excluded from a clinical trial. For example in 2017, for several of the clinical trials I was looking at, it clearly stated that if a patient had more than two or three lines of treatment (chemo, radiation) or had already been treated with pd1 inhibitor (immunotherapy) that the patient would be excluded from the trial. This information was key on how I decided to move when searching for a clinical trial (I knew that for my case I had to enter a trial quicker, because If I did not, their was a strong possibility that I would be put on chemo, and not be able enter the trial). There are plenty of sites that have popped up since then, that help patients click thru trial choices easier, but being fully informed about the exclusionary criteria is key and Clinical Trials.gov includes that.
Cure Today.com - When I was looking for the latest research articles on metastatic triple negative breast cancer, links to advocacy groups, videos and patient perspective articles, Cure Today was and is one of the places I check into.
AASCO Post.com - Now I know, some folks reading this would be like “Really Karen?”, but I have to be authentic. The American Society of Clinical Oncology can be a great place to get information. The research papers, updates, webinars and education that come straight from the oncologist. Sure, I know, most of the information can be pretty complex, but if your up for it take a look at their site. AASCO also has a “family” of sites that anyone can take a look at and for patients and caregivers that site is Cancer.net. Clicking on the the Cancer.net menu bar one can choose from a number of useful pages under the “Coping With Cancer Tab”. Topics like managing emotions, talking with family and friends, finding social support and information are just a few of the issues that are addressed.
So now that I’ve covered some of the sites I used to gain education and information, I will update my site with a few of the useful online resources that I would recommend for different scenarios. Since 2017 a lot of savvy and smart individuals have put together sites that are very useful when looking for an assortment of things (diet, financial support, genomic testing, clinical trial navigation). I’ll put together a list and give you my opinion on how user friendly these sites are. Until then..
Karen