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.
Sunday, October 20, 2019
Friday, October 4, 2019
After almost eight weeks, I have the results from my Breast Cancer Index Test...
This is another example of what I always say about the importance of being your " own best patient advocate". I have been on pins and needles, sort of, while I have been waiting for the results of my Breast Cancer Index Test.( BCI). My oncologist told me that it would take about six weeks to get the test results back to his office. I asked for a copy of the report, and my physician said that was fine, but that he would call me when my test results came back. Six weeks came and went. I decided to wait a week or so more, perhaps he was on vacation? before I called the office. Finally, after almost eight weeks and no call from my doctor's office, I called and left a message on the nurses voicemail. I waited a couple more days and called again. Finally, yesterday, the oncology nurse called me. The nurse told me that they had had to " run my results down". I guess the test result must have been a fast runner. I am not sure when the race to get my test result would have begun had I not called my oncologist. I have been in health care for over 40 years. I know that things get lost, despite our best efforts. I was not angry, just glad that I called and took action.
Before I spill the beans, I will expound a little on the BCI test. It is a test that analyzes the activity of seven genes; unlike the seven dwarfs, I do not know the names of these genes. However, by looking at these genes, one can predict the risk of lymph node negative, hormone receptor positive breast cancers coming back ( recurring) in 5 to 10 years after an initial diagnosis. This test can be a huge factor in helping a woman and her physician decide if it would be beneficial to continue the estrogen blocking drugs for ten years total, instead of five. I have also read that the BCI test may be useful in determining if chemotherapy is appropriate. The BCI was not available to me when my oncologist and I had to discuss my chemotherapy. My oncologist recommended that I have the chemotherapy, due to the number of tumors that I had, their size, the fact that I had two distinct areas of breast cancer, and the unfortunate fact that the invasive lobular breast cancer that I had been diagnosed with can spread without lymph node involvement. I should mention here, that unless something has changed, this test is not yet approved by the U.S. FDA. That does not mean that it is not a reliable test, or that oncologists are not using it, it just means that the BCI test just needs more research- which I am sure is being done.
One interesting thing to me about the BCI test is that it is performed on the frozen tissue that was removed either during biopsy or surgery. That means no additional sticking or prodding the patient. That is pretty important to any cancer patient- we have to get a lot of testing and blood work done, so one less invasive procedure is important.
Why would one want to discontinue the estrogen blocking drugs after five years and not ten? Well, if you are like me, the side effects (bone and joint pain, difficulty sleeping, nausea, fatigue, dizziness, dry skin, cough, and the list goes on and on) need to be weighed against a good quality of life. If it would seem from the test that there is no benefit from an additional five years, then I am on the " stop the medicine" train.
There is a range of scores, as determined by the study of the activity of those seven little genes, and it goes like this: a score of 0 to 5, means the cancer is classified as having a LOW risk of a late recurrence( meaning returning within 5 to 10 years of initial diagnosis) and a score of 5.1 to 10 means that there is a HIGH risk of a late recurrence of the cancer. If one gets a 5.1 score or above, then it would be beneficial to continue the estrogen blocking drug for the 10 years. Estrogen blocking drugs are very effective- preventing recurrence from 95 to 97% of the time. But they come with a lot of side effects, as I noted. And one must consider the quality of life, as I also noted.
Drum roll please! My score was 2.7. The oncology nurse said that my doctor felt pretty confident that I would be able to stop my Letrozole( estrogen blocking drug- sometimes classified as chemotherapy) in August of 2020. I can tolerate the side effects of this drug knowing that the end is in sight, ha! I will be receiving a written copy of my test in the mail soon. Of course, if I do not receive it in a reasonable amount of time, I will call my oncologist's office. They can always " run it down" again.
Before I spill the beans, I will expound a little on the BCI test. It is a test that analyzes the activity of seven genes; unlike the seven dwarfs, I do not know the names of these genes. However, by looking at these genes, one can predict the risk of lymph node negative, hormone receptor positive breast cancers coming back ( recurring) in 5 to 10 years after an initial diagnosis. This test can be a huge factor in helping a woman and her physician decide if it would be beneficial to continue the estrogen blocking drugs for ten years total, instead of five. I have also read that the BCI test may be useful in determining if chemotherapy is appropriate. The BCI was not available to me when my oncologist and I had to discuss my chemotherapy. My oncologist recommended that I have the chemotherapy, due to the number of tumors that I had, their size, the fact that I had two distinct areas of breast cancer, and the unfortunate fact that the invasive lobular breast cancer that I had been diagnosed with can spread without lymph node involvement. I should mention here, that unless something has changed, this test is not yet approved by the U.S. FDA. That does not mean that it is not a reliable test, or that oncologists are not using it, it just means that the BCI test just needs more research- which I am sure is being done.
One interesting thing to me about the BCI test is that it is performed on the frozen tissue that was removed either during biopsy or surgery. That means no additional sticking or prodding the patient. That is pretty important to any cancer patient- we have to get a lot of testing and blood work done, so one less invasive procedure is important.
Why would one want to discontinue the estrogen blocking drugs after five years and not ten? Well, if you are like me, the side effects (bone and joint pain, difficulty sleeping, nausea, fatigue, dizziness, dry skin, cough, and the list goes on and on) need to be weighed against a good quality of life. If it would seem from the test that there is no benefit from an additional five years, then I am on the " stop the medicine" train.
There is a range of scores, as determined by the study of the activity of those seven little genes, and it goes like this: a score of 0 to 5, means the cancer is classified as having a LOW risk of a late recurrence( meaning returning within 5 to 10 years of initial diagnosis) and a score of 5.1 to 10 means that there is a HIGH risk of a late recurrence of the cancer. If one gets a 5.1 score or above, then it would be beneficial to continue the estrogen blocking drug for the 10 years. Estrogen blocking drugs are very effective- preventing recurrence from 95 to 97% of the time. But they come with a lot of side effects, as I noted. And one must consider the quality of life, as I also noted.
Drum roll please! My score was 2.7. The oncology nurse said that my doctor felt pretty confident that I would be able to stop my Letrozole( estrogen blocking drug- sometimes classified as chemotherapy) in August of 2020. I can tolerate the side effects of this drug knowing that the end is in sight, ha! I will be receiving a written copy of my test in the mail soon. Of course, if I do not receive it in a reasonable amount of time, I will call my oncologist's office. They can always " run it down" again.
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