I'm in a lot of support groups online. This has been an amazing source of support and information and "hacks" since I was diagnosed with stage IV metastatic breast cancer in mid-2017. There's just more practical information to be gleaned from the people going through something similar than the doctors could ever impart because, most often, they haven't gone through it themselves. At first, I joined or attempted to join every group that appeared applicable to me. I allowed myself to be added to groups (I understand Facebook has stopped this from occurring) and I attempted to gather information from everything I could access.
Metastatic breast cancer
I've tried to cull through the groups and find the one that is the most beneficial to me and my specific circumstances. Let's face it, while cancer, and particularly metastatic cancer, is the great equalizer in terms of affecting all kinds of people of all ages from all kinds of backgrounds, we're all unique and not all of the information available is helpful.
Approaches to cancer treatment
I did start to notice that most of the groups fell into two disparate categories: 1) Traditional or Western Medicine; and 2) Alternative or Complementary or Eastern Medicine. The thing about each group is that most of the people in each believed that their path, their way, their choices were the best choice, to the exclusion of all others. I can't describe the number of times I've observed people being attacked in the traditional groups for doing anything "alternative" or people being attacked in the alternative groups for doing anything traditional. I'm not talking about expressing genuine concern for overlooking something important, but personal attacks and name-calling.
Those are the groups I've left.
Let me be clear, I'm not a doctor and I don't pretend to know or understand everything. I have approached all of my providers as advisors with superior knowledge to myself who can offer guidance and information. That's it. I've never thought that any doctor or medical provider knows everything or is always right. I do my own research, I talk to as many people as I can and I apply my own knowledge of myself to anything I'm told.
I've followed my doctor's recommendations when it comes to chemotherapy and radiation and surgeries and much of the medication. Why? Because they work. I don't believe for a second that someone is hiding the cure for cancer somewhere. I do believe that pharmaceutical companies make a ridiculous amount of money and that that is the primary motivator for them. If something isn't likely to be profitable, then that idea gets the back burner. Additionally, I do believe that everyone's bodies are both the same and different. No person can make the claim that any remedy is going to affect every single body the same way. That just doesn't happen. Doctors use statistics and odds and trials to generalize. That's great but that simply isn't the whole picture.
In addition to following what my medical doctors recommend (most of the time), I've also pursued the addition of complementary medicine that includes the concept of boosting my body's own processes and immune responses to work better. I happen to believe that God created all of the complex processes in our bodies to work perfectly together. I also happen to believe that while I'm still pretty pissed off at the cells in my body that went haywire, my body is still functioning in many ways as it is supposed to. When I support my body's natural functioning, I feel better. When I take vitamins and supplements in safe quantities and under the supervision of my doctors, the medicine I'm taking is absorbed better and simply works better.
Let me just pause and say that I'm extremely skeptical of all miracle cures. I'm extremely skeptical of any claims that don't involve rigorous testing and scientific evidence. While I don't believe that the FDA is perfect, I do believe that the function of the FDA is to protect the consumer from being led astray. And so many are led astray. I get information sent to me from a variety of sources daily peddling some "cure." I get that desperate person can get pulled into very dangerous circumstances by unscrupulous people. That upsets me.
Bottom line, no one person or organization has all of the answers. There is no mystical cure for cancer out there that anyone is hiding from the rest of the population. There is no one size fits all answer for this extremely complex disease. What there are out there, is a large group of bright and dedicated people who are looking at a variety of ways to attack the problem of cancer.
Working together to treat metastatic breast cancer
Patients are not helpless. We are not victims. We have a voice, we have a lot more power than we realize. If we can speak up together, to pursue and share information with each other, and seek out remedies and help from a variety of sources, that elusive quality of life label could be more within reach.
For now, I'll keep my doctors informed, keep attending all my appointments and keep taking all of my medication, traditional and otherwise, to beat those rogue cells into submission and empower the rest of my body to do its job.
Do you have an MBC mentor/mentee?