Many times in my earlier blogs, and while I was practicing pharmacy, I have urged people to be "their own best patient advocate." While this may sound easy, or even intuitive, it is fairly difficult. When one is faced with a serious health condition, especially a cancer diagnosis, emotions are all over the place. Decisions have to be made - quickly, in some cases. It is difficult to get one's mind wrapped around the fact of having cancer, say, much less to make treatment and care choices.
It is helpful to have a trusted person accompany you when you have doctor's appointments. Usually there is a lot of information given out, and it is good to have someone else listening along with you. One person can sometimes hear something important that the other person misses. I remember when I met with the radiologist concerning my thyroid cancer type and the treatment that the doctor recommended. My husband was with me, thankfully, because I will admit that my mind wandered a bit when the radiologist was going over the specifics of my case, and why he had chosen the amount of the I-131 that I would be receiving. It sounds strange, but I almost looked behind me. Surely, the doctor was talking about someone else! The thyroid cancer that I had was more serious and the dose of the I-131 was larger than I was expecting. Also worth noting, was the fact that I got a copy of the final pathology report. My radiologist went over this report with me, and highlighted the facts that warranted using a higher dose than I was expecting. I asked for, and received, a copy of this report.
If you have not done this, I highly recommend that you buy a three ring binder notebook, and keep copies of all tests, results, lab work, and anything else related to your thyroid cancer diagnosis and treatment. All those of you who are " tech savvy" may say, " Why should I do this?" " It is all documented in the computer, correct?" Let me give you one example of why you should keep hard copies of your paperwork. A few years ago, I had an office visit with my endocrinologist, and she mentioned that their office had gotten new computer systems. All of my test results, lab work, reports,etc. were supposed to be loaded into the new computer system. Well,they were NOT all loaded into the new computer system. The final pathology report was missing, and she needed to see that report before we made plans on my follow up testing and treatment. I had brought my notebook with me to that appointment, and had the report- she made a copy of the report and had someone enter it into the new computer system. Yes, my doctor probably could have tracked down the report, but that would have taken some time, and possibly affected my future visits and treatment. It is not too late to start keeping your records, by the way. I started from the first of my thyroid cancer journey, but you can request earlier records ( they DO belong to you, by the way) and add them to your reports going forward.
In making decisions about surgery, treatment, monitoring and so forth, I advise anyone to research, research, research. Go to reputable websites, read books, of course listen to the recommendations of doctors that you have SO CAREFULLY chosen. But in the end it is YOUR decision. Listen to your " gut feelings". While there certainly are standards of care in regards to cancer treatment, there is no one size fits all. Ask good questions. Ask tons of questions before you have treatment and procedures. In the end, it is YOU who will live with the decisions that are made, so make an informed decision, using all the tools available to you, and go with it. I try not to look back on my decisions. I made the best, informed decisions that I could make at the time. I did my research, I have and still do, keep copies of all of my records.
Be your own best patient advocate. It is difficult to tell a doctor or other health professional " NO", or " I want to do this another way" but it may be necessary when choosing the right option for you. To quote the famous Dr. Spock, and I know that he was talking about childcare decisions, but I think it applies to many other situations. Dr. Spock said " Trust yourself. You know more than you think." I would add to that, if something feels wrong, it probably is wrong for you. It is not easy to stand up for yourself, but if not you, then who? My best piece of advice is, and I will repeat it, " Be your own best patient advocate." Oh, and keep that notebook...
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