How cancer has changed my approach to the medical system
I’ve been reflecting lately on how my cancer experience has changed the way I approach medical conditions. In some ways this is a good thing, in others not so much.
I am much more comfortable with the idea of getting a second opinion and seeking out treatment options. I look back on how I approached my cataract issues (pre-cancer). I searched for a doctor that came recommended, booked appointments, and had the surgeries. I didn’t even consider getting a second opinion. At the time, I felt the urgency in it. I was going blind quickly, unable to drive at night or see in bright sunlight, and living in between Ontario and California. I was still approaching the problem as a Canadian and a naive patient. I was surprised that I could self-refer to an ophthalmologist in the US. In the case of my cataracts, I listened to the doctors and did what they recommended. I didn’t really question things. I had full trust in their abilities.
When cancer happened I suddenly got thrust into a healthcare crisis. I learned a lot about the healthcare system and developed a lot of new skills and literacies around how to manage my healthcare. I learned to advocate for myself, which was difficult at times. But with this self-confidence and self-advocacy came a lower sense of trust and much more awareness of medical errors. I have always seen my doctors as humans, with all flaws that humans have. It is just that now I see them as even more human, and I see them as making even more mistakes. Of course, cancer is also very complicated and not always that well understood. The doctors make their best guesses, but cannot be certain that what they are recommending will work. It is an environment where you want to put your trust in them, but also you are aware that they could be wrong. If you have a good doctor, they will admit it when they are making their best guesses – at least if you are patient like me who asks a lot of questions and does a lot of research.
So, now I’m dealing with a new issue – back pain. Actually it isn’t new, just that now I know what is causing it. The injection that I had a couple weeks ago only provided a little relief. Enough to help me get moving again, but not enough for it to be gone. After my not so great experience with the local surgery center, I really do not have confidence in getting any future care there. I remember telling myself at the time that I was not going to do any more procedures at that center. But also, the injection didn’t really work. It provided some very temporary relief and took the edge off the pain, but it didn’t fix it.
As an empowered patient, I found myself looking into where I could get better care. I always start with Stanford because I’m already in their system. Unfortunately, they don’t seem to have great care in that area. Plus, when I initially reached out I spent forever on the phone, and they never called me back. It didn’t give me any sense that I could get good care there. It is interesting that I do have an association between customer service and level of quality of healthcare.
My internet search, plus a friend’s experience, tells me that UCSF offers a lot more options. I hate the idea of driving up to the city, but in theory I should not need to do it that frequently. I called, the nice person on the phone tried to look me up in the system, but couldn’t get my records from Stanford and PAMF (unfortunately). I needed a referral and to have my records faxed over to them, so they could figure out which doctor was the best one for my particular case.
I found myself nervous about asking the physiatrist who did my injection for my records – not just the details they provide patients, but also the progress notes they keep in their system, so that the doctors at UCSF know what the doctors here think. When I last talked to him, his suggestion was that the next step was a referral to surgery. I really didn’t want to contemplate spinal surgery with there. Fortunately, I have a great primary care physician (PCP) in the same system. I emailed her (using the secure MyHealth system) and asked her to send the referral with all relevant notes over to UCSF. Within a day, I had the referral.
I wonder, had I not had cancer, would I have even considered seeking out better treatment for my back pain? Would I have just accepted the treatment that I’ve currently received which has had limited success? At what point would learned helplessness have kicked in, and would I have just accepted it and not tried to find another solution? I haven’t found a solution yet – so who knows – maybe the time I’m spending trying to get information sent to another set of specialists is a wasted effort. I just know that I have to try.
If you are a cancer patient, has it changed the way you approach other health conditions?
Becky, once again your blogpost resonates so well with the work I’m doing. I wish I could figure out a way to convey the importance of having some preparation fort dealing with the healthcare system, BEFORE a cancer or other serious illness diagnosis. That is what I’m doing in my book. Motivating people to act on it before they need it is the key. Would love to discuss with you!