Sunday, June 6, 2021

We ( thyroid cancer patients) are more than just a set of numbers; or taking my own advice: be your own best patient advocate

Sometimes doctors treat thyroid cancer patients like we are just a set of  numbers. We are more than just TSH, T3, T4,  etc,  though! I had been seeing a really good endocrinologist for twenty years or so, and while I understand completely, I was saddened that she chose to retire this year. She is the one who diagnosed my thyroid cancer, after a previous endocrinologist told me I was just " stressed." I knew that there was a problem, and while stress can certainly make one feel badly, I instinctively knew that there was something very wrong with my thyroid. My, now retired, endocrinologist listened to me- how I was feeling, my symptoms, and did not just treat me like a set of numbers. She spent time with me and did not rush me through my office visits. 

I thought that I had found an endocrinologist to replace her, but I was wrong. I picked out a physician who seemed to have good reviews, but he rushed through my visits ( I saw him twice) and did not do some of the bloodwork that my old endocrinologist did. On top of that, he told me that since I have been in remission for ten years, he thought that I did not need further follow up appointments(!). I have read and do believe that thyroid cancer patients need follow up for life. This is a cancer that can return later on- there is no magic " five year" mark. I do not think that once yearly visits, once a patient has been in remission for a while, is excessive. Until just recently, in fact, I had twice yearly visits with my endocrinologist. To review, my cancer was stage three papillary with follicular variant. I also had two cancerous parathyroid glands that had to be removed. After my total thyroidectomy, I had a pretty large dose of RAI ( 155 milicuries). So, everyone's situation is different, but monitoring is important for every thyroid cancer patient- in my opinion. 

So, I am on the hunt again for an endocrinologist who treats me like a person, listens to me, does all necessary bloodwork, and is willing to monitor my thyroid cancer once a year. It is not easy leaving a practice and hunting down another doctor! I read several reviews of various endocrinologists and have finally chosen a new one whom I hope will be a good fit for me. I could not get an appointment until the end of July ( I was supposed to go back for a recheck in May) but I think that will be fine. I had to be my own best patient advocate again. Really, we should all take the responsibility for our health care. There needs to be a level of trust in our physician, and the understanding of our treatment/monitoring. But if something in our body seems off, we need to feel comfortable talking to our physician and coming up with a plan of action. 

I realize that things have not been easy during this time of Covid. Office visits have been so different, as far as how they are conducted, visit procedures, masks, just to name a few challenges. Thankfully, things are getting a little closer to normal for us all. There are some things that are different- masks are very necessary of course, in a doctor's office or hospital, but masks do make personal connection difficult. I do wonder if we will ever be able to fully return to how things were pre-Covid. 

I will of course report on my upcoming  visit to my new endocrinologist. And I hope to post a little more frequently now that my physical therapy for my knee replacement is wrapping up. The best advice that I have ever given to any thyroid cancer patient ( or any cancer patient) is to be your own best patient advocate. Sometimes I have to take my own advice...and I did. 

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