At the BCC annual conference yesterday, one of the speakers, Dr. David Spiegel, mentioned that patients have much less anxiety if they take time at the beginning to make informed treatment decisions. One of the challenges that we run into when we are told we have cancer is the desire / fear / need to do something about it quickly. IMHO, the early detection rhetoric helps increase this need to do something about it quickly. The message we receive is that if you cancer you need to rush into treatment. However, this is not always the best course of action.
Note, that I’m not an oncologist or cancer doctor. There are some cases where that rush is indicated, but in many cases, the cancer does not grow so fast that waiting a week or two will have a dramatic impact. Often you end up waiting that week or two anyways – while you wait for detailed pathology results, various scan results, maybe even genetic test results, and insurance approvals (yes that too is part of the process).
There is a time in that window where patients could do some kind of educational intervention that helps them learn to make more informed decisions, and make decision based upon their personal values, rather than being forced into decision that doctors make for the patient – doctors who often just met the patient and are making decision based upon disease characteristics alone, rather than a combination of disease characteristics and patients longer term life and health goals.
This got me thinking – wouldn’t it be nice to have some form of cancer boot camp – where once you are told you have cancer, while you wait for appointments and test results, that you could do some of that important identity and values work, as well as gain some knowledge about the disease itself, that would help you make better treatment decisions – better decisions that will help you with longer term happiness?
When I talk to other survivors about things they wished they knew and understood, I often here things like – I wish I understood that I had choices. I wish I understood that I didn’t need to urgent jump to treatment, that I had even a little bit of time to think through things. I wish I understood some of the true long term impacts of the decisions I was making. I wish I understood some of the side effects better. I wish I understood that sometimes choosing a doctor is about figuring out who you have chemistry with, not necessary who is ‘best rated’.
There are so many different aspects that are address a little in support groups, but a lot that is not. And support groups are often short duration – 90-minutes once a week or once a month. Wouldn’t it be nice if in that crazy time before you have a solid treatment plan, that there was some kind of experience – a mix of educational, emotional, and spiritual – to help you better deal with the diagnosis and make better decisions? Wouldn’t think help you live better with those decisions?
I found myself thinking that this is the type of work I’d like to be doing. I’d like to be helping coach women through that process. One of the challenges is that women rarely make it to support organizations, like BCC, when they are in that state. They usually do exactly what they are told by the first doctor they see because of fear – because the rhetoric says that early detection (and therefore quick treatment) saves lives. They end up in support groups after all that has already happened – after critical decisions have already been made – and after they find themselves struggling to live with those decisions or find themselves wishing they were given more options. But in order to get that education (or boot camp) to happen sooner in the process, the diagnosing physicians need to buy into the need for it. They need to be willing to address the fact that they, the diagnosing physicians, are not necessarily the best person to be making these life altering decisions (their job is to outline options, and provide recommendations, but not make the decisions – they are not the ones who need to live with the decisions). In the new world of medicine, where patients have access to information but also to each other through support groups and social media platforms, physicians need to learn ways to ceed control, and support providing patients with the right tools to help the patient make the right decision for the patient – the decision that will lead to longer term acceptance of the situation.
What do you think of the idea of a breast cancer bootcamp for newly diagnosed? Would it be something that could work in an online format? What type of information and what type of reflection activities would you think would be of value? If you have breast cancer, what did you wish you knew before you began treatment?