On February 13th, I will be having my big six month thyroid cancer check up. I know that I do not have to tell a thyroid cancer survivor how stressful " testing time" can be. The fact that most people, those who have not had thyroid cancer, do not realize, is that thyroid cancer testing is a life long adventure, so to speak. There is no " five years and done" happy dance. There can be a recurrence of thyroid cancer many years down the road from the initial diagnosis.
In my last blog, I talked about TSH suppression- the pros and cons. As I pointed out in that blog, as far as how long to keep the TSH suppressed is a slippery slope. Many factors come into play- the type and staging of the thyroid cancer, how aggressive the cancer is, and what other health issues the patient might have( examples: heart disease and osteoporosis, being the main concerns). My TSH has been suppressed for about 8 and 1/2 years. My thyroglobulins were elevated for about 4 years. My cancer, papillary with follicular variant, was rather aggressive, and stage three. My endocrinologist talked with me during our last visit and stated that it was probably time to let my TSH return to a perhaps, low normal number.
That discussion with my endocrinologist sent me into a tail spin for a while. It sort of made me feel like a tight rope walker who has always used a safety net, but now will be making that trip across the wire WITHOUT the net. My head knows this is the correct thing to do at this point in my cancer journey. While I do not have any heart issues, thankfully, I do have osteopenia, and could develop osteoporosis. Reading several articles on TSH suppression, and how the treatment guidelines have changed over the past few years, has made me feel a little more comfortable in letting my TSH return to a low normal value. I trust my endocrinologist, and know that she will monitor me closely, and if there are signs of a recurrence, my doctor will act accordingly. That is what my head is telling me. This is what my heart is saying...
I am fearful that I might have a recurrence of the thyroid cancer. I had breast cancer in 2015, and had bilateral mastectomies, as well as three months of chemotherapy. If I could have cancer two times, why not three? In the studies that I have read on TSH suppression, they point out that unless the patient has on-going thyroid cancer, not well controlled with surgery or one that does not respond to the I-131 treatment, keeping a patient's TSH suppressed indefinitely can cause more harm than good. The studies that I read also said that the outcomes were actually better in the patients who had their TSH returned to low normal. ( again, I am NOT talking about patients with anaplastic thyroid cancer, or those who have persistent thyroid cancer).
Testing time for me, if it is for my breast cancer or thyroid cancer, has always been stressful. This time, it seems more so. I have to make a big decision and there are no guarantees either way. I know that my endocrinologist wants me to let my TSH return to low normal. To accomplish this, my doctor will have to cut back on my thyroid hormone replacement dose. My body will have to yet again, adjust to another dosage change- one that will bring side effects that all thyroid cancer patients are familiar with. Even without the TSH situation to consider, a dosage change in thyroid hormone medication sometimes has unpleasant consequences. Fatigue, changes in mood, hair loss, cold intolerance, weight gain- just to name a few fun things.
I try to stay busy during the " waiting time" for my big checkups. I try to make time for exercise, visits with friends, short trips, a little " retail therapy", reading- anything to take my mind off of things. This very cold weather makes it difficult to go outside right now. Nature revitalizes me, but I am pretty cold intolerant, so this is a little challenging. I wish that I had the magic cure for pre- test anxiety, but I do not. I would suggest that if you are waiting for a cancer checkup, be good to yourself. Do things that you enjoy, and surround yourself with people who you love and and who will love you back.
I will of course blog about my results from my check up. Hopefully, I will be prepared to walk that wire without a net. The Pollyanna side of me says to " go for it!"- that I am making the right decision, and that everything will be fine. The " Debbie Downer" side of me, admittedly smaller, but still present, is saying : " holy sh**t!". Results coming in soon...
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