I had to wait a while for my thyroid cancer checkup this year. It was supposed to happen last month, but my physician had to reschedule my appointment. I think that I used up all of my " worry" for my breast cancer check up, and the resulting breast cancer index test from last month.
My endocrinologist had to lower the dose of my Levoxyl ( T4) hormone dose a bit, due to my very low TSH. My doctor has been keeping my TSH essentially zero, so that if I had any residual thyroid cancer cells lurking about, they would not be stimulated into action. The slippery slope here is that if the TSH is essentially zero, which mine is, then there is a benefit in possibly preventing a recurrence of the thyroid cancer. BUT a low TSH can also cause problems- including possible heart arrhythmia, and osteoporosis, just to name a couple more serious ones. My heart function is fine, but I had a bone density test at this last thyroid cancer checkup, and while I am still considered to have osteopenia, I am closer to being diagnosed with osteoporosis. Added to the mix, is the fact that the Letrozole that I have to take to prevent breast cancer recurrence, can also cause osteoporosis ( by blocking estrogen).
I have the most bone loss in my hips, which is of course very troublesome due to possible hip fractures. So, I have two things working against me ( and the bones in my hips). My endocrinologist is lowering my Levoxyl dose, which I am not happy about because I was feeling good on my previous dose. My oncologist has recommended that I take the Letrozole until August- which will be five years since I had breast cancer. Can my bones hang on for ten more months or so? Will lowering my Levoxyl dose a bit help out?
I take a prescription dose of vitamin D, which certainly helps. I can not take calcium supplements, because I had a kidney stone which was caused by oral calcium supplements. I sure do not want to go there again! I am walking and riding my exercise bike, as weight bearing exercises can help strengthen the bones. I have not added lifting weights yet. My left knee was replaced six months ago, and I am still recovering from that. I am planning to add some light weights, think 5 pound ones, in some exercises. I have lymphedema in my left arm, so there's that. No one can ever say that I make things easy!
I will see my endocrinologist again in six months. She is keeping me on the every six months checkup schedule because my thyroid cancer was aggressive and had " spilled out" into my neck and lymphatic area. I also was stage three. I was disheartened to read that, according to ThyCa news and the American Cancer Society, while diagnoses for thyroid cancer are down for 2019, DEATHS ARE UP. According to ThyCa executive director, Gary Bloom, "..we are concerned about the continuing rise in the thyroid cancer death rate- this contrasts with most other cancers, for which death rates have steadily declined. This trend signals a need for additional research, continued exploration of more treatment options, and more patient and public education and support." Quote from ThyCa News, 01/20/19.
At my next thyroid cancer checkup, which will be in April 2020, I will get an ultrasound, blood work and an office visit. I will not get another bone density test until 2021. ( insurance issue- they will only pay for one every two years). I am now faced with some big decisions. I have decreased my dose- I take a half tablet for two days per week and a whole tablet for five days per week. I will be tired. I will sleep a lot, and I probably be grouchy.
I am going to call my oncologist and see if I can stop the Letrozole early, since my BCI test was so good, and my bone density test is a little worse. It will be four and a half years on the Letrozole instead of five. Will that be enough? Who knows. What I do know is that quality of life matters to me ( I have other side effects from the Letrozole that I have not mentioned ) , and I do not want to fracture my hip. I am being my own best patient advocate here. I am weighing all of the test results, information and recommendations from my physicians, and then making a decision based on these things plus what I feel would be the best option for me. Wish me luck.
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