Troubleshooting Symptoms - Pain
Disclaimer: I'm not a doctor or any sort of medical professional. All of my comments and suggestions in this post (or any other) are based on my own experiences or my own research. Please keep my comments in the right context and address your issues/concerns with your doctors!
Living with metastatic breast cancer
With that said, I know a lot about pain. I'm in pain, you see, 24/7. This is a brand new experience for me and learning to troubleshoot my pain has been one of the biggest learning curves I've had since I was diagnosed. I was in pain when I was diagnosed, but I didn't tell anyone and that delayed knowing that I was metastatic for about three (3) months. I've literally learned the hard way that it is vitally important to report all symptoms to your medical team!
Breast cancer metastasis to bone
I have bone-only metastases (mets) and, as I understand it, when breast cancer spreads to the bones, it literally consumes the bone and replaces it. This is why the lesions/tumors are contained within the bone itself and do not grow out of it like happens in other organs/soft tissue. I often tell people that breast cancer "eats" bones as this is a good visual. Whatever the actual mechanism, bone lesions in particular places can be excruciatingly painful, especially those bones needed for weight-bearing (e.g., pelvis, femurs, etc.), the bones needing to move (e.g., joints), and those bones that assist in keeping one upright (e.g., spine).
Side effects of breast cancer treatment
So, when a person has cancer, has bone mets or some other kind of mets, is taking cancer medication that can cause many side effects and is also aging, how can anyone know what is causing pain? From what I've observed for myself in my own care and heard from others, the process of troubleshooting the cause of pain is not unlike troubleshooting anything else - you start with the obvious, the known information, and then you work by process of elimination to determine what is the culprit. As with other types of troubleshooting, the answer is not always clear, but eliminating options and narrowing the field of possible issues is key.
Here is my list of how I attack my pain
1. I gather information
When my pain started, how long does it last, when does the pain occur (time of day, activity level, certain movements, etc.), and what helps. This information is invaluable to my medical team and I often am not able to gather this information by myself. Asking my caregivers and the people around me for instances when they've noticed I'm in pain is helpful. Once you have chronic pain, it's often hard to tease out specifics. As an aside, I hate the pain chart and wish I didn't have to use it. I have a high pain tolerance and attempting to quantify the pain with a number is often extremely difficult.
2. I let my medical team know
One of the first steps with any new symptom is ensuring that the pain isn't from a new or growing met. I have to say that this is the hardest step because frankly, I always think first that cancer has come back and sometimes I genuinely don't want to know for a bit. This avoidance strategy hasn't served me super well, but its usually my default.
When I complain about pain, the first thing my doctors think about is testing. Name the test and I've had a bunch of them. For instance, I get a lot of headaches and I've had at least a dozen brain MRIs. Each of them has confirmed I have a brain and it's operational, but no cancer. While I do get somewhat concerned about the radiation from the tests, the desire to know (once I've gotten past the avoidance stage) outweighs those concerns, usually.
An important note to think about when deciding who on the medical team is right to contact is that each doctor is going to give advice/input from their own specialty. For instance, my orthopedic doctor is mostly concerned about my bones; my physical medicine doctor is mostly concerned about my soft tissue, and my medical oncologist is mostly concerned about whether or not the cancer is behaving itself. Talking to the wrong doctor about pain symptoms can be frustrating. This is where I insist that my doctors talk to each other, brainstorm together, and then come up with a plan. While I shouldn't have to facilitate this brainstorming, I often need to.
3. I see my complimentary medical team
Most medical doctors follow the allopathic model (i.e., document symptoms, arrive at a diagnosis, prescribe medication), but I've found a great deal of valuable insight from my functional medicine doctors (functional medicine is focused on finding the root of the issue and treating the source). I know that complementary practitioners are often not covered by insurance and this can be challenging for many. I've found a great deal of flexibility in the functional medicine world--for instance, I have agreements to pay less than the "normal" rate at various offices. I play the "cancer card," whenever I can.
4. I apply general common sense
I suppose this isn't always fourth on the list, but can be at any point. If I've fallen, for instance, that's probably a good indicator that new pain came from that. If I've been more or less active than usual, that's usually a factor. If something else in my normal routine - for example, my boys (6 and 4) had winter break recently and that meant I was on my feet more during the day - is different, then that can affect my pain. If my mood hasn't been good and the holidays can be hard for anyone, but especially those of us living with a death sentence hanging over our heads, that can affect my pain. If the weather has changed recently, that can affect my pain. If the regular things I do to control my pain, like going to yoga, haven't happened as consistently, that can affect my pain.
5. I make sure I'm getting sufficient sleep
This last factor can seem odd, but I've noticed that so very many things are affected by a lack of sleep or a lack of restful sleep. Pain affects my sleep in that I can't lay on either side for very long and haven't been able to do so since the titanium rods were inserted into my femurs. Everything is heightened when I don't get sleep and my emotional capacity to handle any deviation in my routine is negatively affected. If I think I'm experiencing something new, I do wait to see if I can ensure that I'm getting a good sleep before I ring any alarm bells.
I'm sure there are other factors or troubleshooting ideas that I can't think of now--what is yours?
How well do your friends and family understand your diagnosis?