And now, for the rest of the story...

In my last blog, I wrote about calling my oncologist about stopping the drug Letrozole early. My endocrinologist had done a bone density test last month, and my scores were somewhat lower than in the previous test from a year ago. My osteopenia could be from being suppressed ( my TSH is essentially zero). The reason for this is that in my case, aggressive thyroid cancer and TGs elevated for over three years, my endocrinologist wanted to keep my TSH at zero so that there would hopefully not be any " call to action" of any thyroid cancer cells that I may have lurking around in my body. The standard of treatment now, it seems, is to allow the TSH to return to " low normal"- more around 0.5 or so. Of course every case is different, and there are cases that I am sure where  the doctor feels like keeping the TSH at zero is more beneficial to the patient, as far as recurrence goes. That said, my endocrinologist feels like since it has been about 9 years since I had  thyroid cancer, and about 6 years since my TGs were considered normal ( less than 1), my doctor feels like it is time to let my TSH get to low normal. I have also lost about twenty pounds since my last visit, so since thyroid hormone dosing is weight related, my endocrinologist lowered my dose of Levoxyl. I was taking 112mcg ( In the past,  I had been taking up as high as 150mcg) but this time, she lowered my dose to 100mcg. There has been some adjustments , on my part, from  lowering the dose. I was feeling fine on the 112mcg, but considering the osteopenia maybe turning into osteoporosis issue, I am trying my best to adjust to the new dose.

Speaking of dose adjustments, people who are thyroid cancer patients or those without a thyroid gland for other reasons,  know how much just a tiny change in dose can affect your body! I am dealing with lower energy levels, being sleepy in the afternoons, even more cold sensitivity, as well as a little more brain fog. ( as if I needed more of THAT). I am not whining, I just wish more people understood the challenges of being thyroid-less. That little gland, a little monster in my case, controls the entire body- in some way or the other. I am thankful for thyroid hormone replacement drugs, but it certainly is not an exact science when it comes to dosing for optimum health benefits while minimizing side effects.

On a related issue, I did hear back from my oncologist concerning stopping my Letrozole a little early. My endocrinologist sent my oncologist  a copy of my latest bone density test. With that information, along with the knowledge that I have a good BCI ( breast cancer index test- it measures the possibility of recurrence of breast cancer) score, my oncologist  told me that I could stop the Letrozole!! Yippee! Quality of life is an important issue- and I am already feeling a little bit better. Some of the side effects from the Letrozole are slowly going away. It takes a long time for this drug to leave the body. And some of the side effects may be troublesome for some time. I am still very happy overall, and I hope that my bone density test in two years will be a bit better.

At my next big thyroid cancer checkup, which is in April, I will be getting the usual blood work and office visit, but I am also scheduled for an ultrasound of my neck area. Just writing about this makes me anxious! Test anxiety is tough, as any thyroid cancer patient is well aware of. But I am thankful that my endocrinologist takes such good care of me.

On another related issue, I will be seeing an ENT specialist soon. I had trouble with salivary stones after the large dose of RAI that I received after my thyroid and two parathyroids were removed. It was most intense a few months after the RAI, but I have continued to have issues on and off since then. A few months ago, I noticed a lump in my parotid salivary gland on one side of my jaw. The lymph nodes under this area are also a little enlarged. When this has happened in the past, it has gone away after I did some self care- warm compresses, sour candy, sour lemonade, massage and ibuprofen for pain. The lump and swollen lymph glands have not gone away this time. I had a visit with my PCP and he recommended that I see an ENT to try to see what is going on. This requires a referral, and a little red tape it seems. I will keep everyone updated on what happens. If there is anyone out there who is struggling with this issue, too, I hope that you will see your doctor. I have been told that 85% of parotid " tumors" are benign, but most have to be removed because they can affect the facial nerves. RAI- the gift that keeps on giving...

Results from my thyroid cancer check up

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.

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.

Tom Petty was correct... waiting IS the hardest part.

In my last blog, I wrote about the BCI ( breast cancer index) test, and how that it takes six weeks to complete and come back to the doctor's office. I have one more week before the test is back. Then, my oncologist has to find the time to look at the test results. The nurse said that the office would mail a copy of the test results out to me, but that my doctor would also call me so that he could explain the results. I have tried to think about other things, but of course, my thoughts keep returning to the test and what it might mean for me.

 I should also mention here, that one of my blog readers reminded me that the BCI test is also used to determine if chemotherapy may be appropriate for patients with breast cancer. Of course, this is just one " tool in the arsenal ". The course of treatment that  our physicians recommend, breast cancer staging, and the patient's opinion are some other factors in the decision to have chemotherapy or not. The BCI test was not available to me 4 years ago,when I had to make the decision to have chemotherapy or not. I decided, at my oncologist's urging, to have the chemotherapy. And while it was perhaps one of the harder things that I have had to go through, I do not regret that decision. I am fighting this with everything that I possibly can, you might say.

And since this is a " 2Fer blog" I will also mention the fact that I did not have my thyroid cancer check up on September 5th. My endocrinologist was out of the office, and has rescheduled my appointment for October 17th. I will also have a bone density test then as well. There are at least two factors that put me at risk for osteoporosis. One, is the Letrozole that I take for breast cancer recurrence. This drug, while almost 98% effective in preventing recurrence, has some pretty troublesome side effects- one being that it can cause osteoporosis. I will not get into the mechanism of action of the drug, except to say that this is a product of estrogen blocking. The other factor is the fact that my endocrinologist has been keeping my TSH basically at zero. While this is useful in preventing a recurrence of the thyroid cancer, this too can cause osteoporosis.

Before I started taking the Letrozole, and even when my TSH was essentially zero, my bone density scores were great. Now, after 4 years on the Letrozole, and 9 years after having my TSH at zero, I have osteopenia- which is just a fancy way of saying that osteoporosis is just around the corner. I feel that if I am able to stop the Letrozole, my bone density tests would improve. But would I have a recurrence of the breast cancer? That is where the BCI test will (possibly) help my oncologist and I make an informed decision of how long that I would benefit from being on the Letrozole. Let me add here that quality of life is also an issue. I will not go into details, but there are many side effects from the Letrozole- and I have several of them. I would feel better if I were to stop taking the Letrozole. I would probably have less joint and muscle pain, better sleep, I have occasional low grade fevers- which I believe is caused by this drug, less fatigue( which is even more important when you do not have a thyroid), less hair loss, better skin texture, less swelling of my hands, feet, ankles and lower legs, and the list goes on...

As with any medication that one takes on a long term basis, one needs to compare the benefits versus the side effects. This is not an easy decision. Yes, the side effects are affecting my quality of life. BUT, I certainly do not want a recurrence of the breast cancer. My husband, for whatever reason, seems to think that my BCI score will come back somewhere in the middle. That it will not be a clear cut and dry result, you might say. If this does indeed happen, I will probably go with the quality of life decision. I am not an elderly person, but I am not a young person, either. I want to be able to enjoy my life as much as possible, and feeling better would certainly help.

So, I am waiting.... waiting on the BCI test, waiting on my thyroid cancer checkup, waiting on the bone density test. I know that every cancer patient, or every patient with a serious medical condition, is familiar with the waiting game. I have found that the best way to deal with the stress of waiting, is with distraction. I enjoy spending time with my grandchildren. I am thankful that I am retired and am free to go to their school and sporting events. I love doing my crafts- making my beeswax candles and doing a little stained glass work. I enjoy getting together with my friends and family. I like to be outdoors- walking or doing some light gardening. I try to practice gratitude in all that I do, and in every day of my life.

Thank you to all who take the time to read my blog. I like to provide information that might help others. And honestly, it helps me work out my feelings and make my decisions when I take the time to write things down. So, now I wait...

BCI ( breast cancer index) test- why it is important to me, and why it may be important to other breast cancer survivors

In this blog, I combine two topics: thyroid cancer and breast cancer. I am a " survivor" of both types of cancer, but I usually write many more blogs relating to thyroid cancer than breast cancer. The reason for this, is that I feel that  thyroid cancer is still under- reported, you might say, especially in comparison to breast cancer.

During my nine month check up for breast cancer this year, my oncologist brought up the subject of: "So, how long do you want to take your Letrozole?" For the blissfully uninformed, Letrozole is classified as a aromatase inhibitor type drug, which is used in postmenopausal women who had the hormone receptor positive type of breast cancer. It can be given to premenopausal women who have taken a few years of Tamoxifen, or prescribed as a first line of therapy for postmenopausal women. These types of drugs, Anastrozole and Letrozole, ( aromatase inhibitors) as well as Tamoxifen, are estrogen blocking drugs. They are given to lessen the chance of a recurrence of breast cancer. Sounds great, right? As with any medication given, the benefits versus the side effects for the patient  need to be taken into consideration.

The benefit of Letrozole is that it is very effective( 98.9% in a study cited by the British Journal of Cancer )  in preventing a DR ( distant recurrence- in other words, cancer in another part of the body). When I looked up the drug profile for Letrozole, I found that there are THREE pages of side effects! Sure, some of them are  "minor", and when I was working as a pharmacist, I always told people that in the side effects profile sheet  that now accompanies each drug dispensed, the drug companies have to list every side effect- from major to extremely minor( or rare ,statistically.) I have personally experienced a lot of side effects from this drug. My doctor first prescribed Anastrozole, which I had to stop due to extreme muscle and bone pain. He switched to the Letrozole. Although both drugs are in the same class of drugs, some people have less side effects with one or the other. I do indeed have less bone and muscle pain with the Letrozole. It is still bothersome, but I can tolerate it.

The side effect that is troubling me, is the fact that the aromatase inhibitor drugs, in lowering the amount of estrogen in the body, cause  a negative effect on bone cells. This  can lead to osteoporosis and broken bones. Before I started taking the estrogen blocking drugs, my bone density was great. Now, however, I am considered to have osteopenia, which is just a step behind osteoporosis. I am seeing my endocrinologist in a couple of weeks for my big thyroid cancer check up. She has scheduled a bone density test so that we can see if I am still in the osteopenia stage, or have moved up to full blown osteoporosis. I am doing all that I can myself to try to prevent osteoporosis. I can not take calcium supplements ( I had a kidney stone caused by calcium supplements, and I sure do not want to go there again!) I do take a prescription strength of Vitamin D, once or twice weekly- depending on how much sunlight I am getting. I also try to eat calcium rich foods. I read an interesting study on kidney stones, which I will not report in depth here, but the gist of the study said that the calcium that one gets in foods does not seem to cause kidney stones. Also, I try to walk every day. Weight bearing exercises are good for the bones- think lifting 5-10 pound weights a few times a week.

At my last visit with my oncologist, when he asked me how long I wanted to be on the Letrozole, I honestly did not know what to say. I am four years out from breast cancer. At my next 9 month visit, I will be almost 5 years out and need to make a decision. Quality of life is important. And I am not just talking possible osteoporosis here. I will not mention all of the side effects that I have from this drug, but they are significant to me and do affect the quality of my life. My oncologist suggested a test that may help us determine how long that I could  benefit from being on the estrogen blocking drug. The test is called the BCI( breast cancer index) test and will be performed on a sample of my cancerous breast(s) tissue. I like to think that I am well informed, but I did not know that I had frozen cancerous tissue in a lab somewhere. I am thankful for this, just unaware until now. The test results will take six weeks to get back to the doctor. I asked the nurse for a copy of my report, and she said that it will be mailed out to me. However, the nurse said that my oncologist would also call me on the phone to talk to me about the results. There is a numerical scale that predicts one's chances of DR ( distant recurrence). Tumor size, staging of the cancer  as well as other factors also should factor in on the decision to continue taking an estrogen blocking drug for more than five years, or stop after five years.

The BCI test is fairly new, but has been studied and reported in various well known and prestigious professional journals.( one example is the " Journal of Clinical Oncology 36, abstract," published June 1st, 2018.)  I wanted to write this blog to make others aware of this test. I was not aware of the test until this month. I think that it is good information to have when making a decision concerning how long a person should be on the estrogen blocking drugs. One must work closely with their physician, of course, but ultimately, the decision rests on the cancer patient. Having a test like the BCI can help the patient make a more informed decision. I hate the side effects of the Letrozole, but i certainly do not want a recurrence of my cancer. I had two areas of cancer- three tumors were "stacked" on each other in one area, and there was another area of cancerous cells not related to those tumors. My staging was IIb, according to my oncologist. My oncologist did not recommend radiation, but I had three months of aggressive chemotherapy.  I will consider these factors when I make my decision, as well as my results from the BCI test. I urge breast cancer patients to inquire about this test, if you have not already. It can be another weapon in our arsenal in fighting breast cancer. 

" Well, I won't back down, no I won't back down. You can stand me up at the gates of Hell, but I won't back down.....Hey, baby. There ain't no easy way out. I will stand my ground, and I won't back down" lyrics from Tom Petty's, " I Won't Back Down."

I am afraid that this year, I hit the jackpot of doctor's visits. A couple of weeks ago, I had my yearly pap,etc. test- which was fine.( good results)  Then I had my yearly dermatology ( skin cancer check) because in the past,  I have had a basal cell carcinoma removed from my face, and a squamous cell carcinoma removed from my leg. I used to have to go every six months, but I have "graduated" to yearly visits now. ( also fine- just a few keratoses frozen off).

Tomorrow, I have the dreaded colonoscopy test. Well, I dread it anyway. There is a history of colon cancer in my family, so I have to get a colonoscopy  every five years instead of ten. I honestly and seriously considered skipping this test. But a good friend of my sister's died this year from colon cancer. That gave me pause.... While I am not having any " problems", I also thought about a colleague of mine who went in for a screening colonoscopy at age 50, was not having any symptoms of colon cancer, but in fact did have colon cancer. She had to have surgery and chemotherapy, and is doing fine now, partly because the cancer was diagnosed early. Early diagnosis and treatment is essential to having a good outcome in just about every type of cancer, I think. So, I started fasting yesterday afternoon, and am on clear liquids today. Later this afternoon, I start the dreaded prep- which is probably the worst part of this whole process. My physician will administer Propofol to me during the test, so I will be out for the actual procedure. Interestingly enough, I have had two previous colonoscopies, from a different physician, using the " conscious sedation" method. Remember when Katie Couric  had  her colonoscopy  done live on national TV? I can say that it did not hurt- the doctor gives you a couple of things to relax you, but I was able to watch as the doctor did the procedure on the big screen TV. The main problem with this, and why my current physician will not use the  conscious sedation technique, is that if the patient coughs or sneezes, the intestines can be perforated, and will have to have surgery. No thank you.

On Thursday, yes, this Thursday, I have my big checkup and blood work for my breast cancer. This is the test that makes me panic. I can still  recall the smell of the antiseptic soap as I entered the waiting room and almost get physically sick. I had a tremendous amount of nausea and vomiting during the three months, and a month or two beyond, that I had to have chemotherapy. Strong smells made me so nauseous, and for some reason, the smell of the hand soap in the office was a real trigger for me. I think perhaps it was nausea by association, or whatever, but four years later, I still get sick just thinking about it. I have to take a type of chemotherapy drug to prevent a breast cancer recurrence. This drug has a lot of side effects, and I am not sure if I will get to stop this drug in five years, or if the oncologist will want me to continue it for ten years. The last time that I had my check up, the oncologist said that he would let me know " later" as to how long that I would have to be on this medication. I suppose that I will hear his recommendation on Thursday? I will have to say, that I may decide on my own that five years will be enough( It has been four years so far). One has to consider the quality of life versus the possible benefits. Yes, I listen to my oncologist and his recommendations. But he listens to my side of the story, too.I know that he has a lot of experience and knowledge in this field ( or I would not be a patient of his), but there is, like I mentioned, the " quality of life" issue that must be considered,too.

If I am still around after Thursday, hahahahaha, I have my big thyroid cancer check up on September 5th. I still have these thyroid check ups every six months because, as I have said in previous blogs, I had papillary thyroid cancer with follicular variant, stage 3, two of my parathyroids were cancerous and had to be removed, and although there were no lymph nodes involved per se, both of my main tumors were unencapsulated and diffusely infiltrative. That just means that the tumors had ruptured, and the cancerous contents had spilled out in my neck bed area. Yuck.

I generally do not mind this checkup. I really like my endocrinologist, and she really listens to how I am feeling, and does not just look at the lab work numbers. For three and a half years, my thyroglobulin was elevated, which meant that there was thyroid cancer present in my body somewhere. I got a really big dose of the radioactive I-131 ( 155 milicuries) and my doctor said that sometimes it just took a while for the thyroglobulins to go away. I am very thankful that I did not have to get a second dose of the I-131, because, surprise, it has some pretty nasty side effects, too.

When I was looking over my calendar of events, so to speak, I became rather anxious. I decided that I needed to take these tests one test at a time. I could not think about them all at the same time- it was just too much. Yes, I am thankful for good medical care. I am appreciative of all of the skill and concern that my doctors have so that I can be healthy, and well, just be HERE  for my family and friends. I do practice gratitude on a daily basis. However, sometimes, the testing  feels overwhelming to me. Sometimes it takes every bit of courage and energy that I have just to walk into the doctor's office. ( Any of my doctors' offices. Just pick one..). But as Tom Petty so eloquently put it, " You can stand me up at the gates of Hell, and I won't back down." I have a new granddaughter who was  born at the end of May. I am now a Mimi to four wonderful grandchildren. I love all of my family and I want to be here for them. I need to take care of myself by having these tests done and trying to have a good lifestyle. But as Tom Petty also said, " there ain't no easy way out." I will summon my courage, and have these tests done- for my family as well as for  myself.

Fatigue is not my friend...can anything help?

 Before I had thyroid cancer/ surgery/the  I-131 treatment, I thought  I knew what it was to be tired. Working full time and raising two children, two very active children, was wonderful, but exhausting. My husband has always been a" hands on dad", now he is a " hands on granddad", but there are still some things that only Mimi can do.  There is nothing quite like being " hypothyroid tired", though.

That is what all of us who have had thyroid cancer, and our thyroid glands removed, are now: hypothyroid to the extreme. Even a thyroid gland that is not functioning quite properly, still usually produces a little thyroid hormone. And even with the best thyroid hormone medication supplementation, this is not comparable to a fully functioning thyroid gland. I know that I am preaching to the choir  here, so this is not new information. Can we, as thyroid cancer survivors, do anything to help ourselves be less tired, and more able to enjoy our lives?

There are a few things that could help us get our groove back. Some involve lifestyle changes, and some may involve medication changes. Of course, if you are like me, medication dosage changes are just a way of life now. Unfortunately, it is not a " one pill and you are done" kind of thing. Constant blood tests and monitoring are lifelong events for us now. It is very important to see a physician who understands the dynamics of thyroid hormone dosing for thyroid cancer patients. Our overall health, weight, lifestyle, and other changes affect the way our thyroid medication works and how effective our dose is.

Five years after my thyroid cancer, I had breast cancer. I went through bilateral mastectomies and three months of chemotherapy. I lost twenty plus pounds due to the chemotherapy drugs. As you can imagine, my thyroid levels were all over the place. My doctor reduced my thyroid hormone dosage, but I still needed an adequate dose so that I could power through everything that was happening in my life. I am at the age now when osteoporosis is a concern. I have osteopenia- which means that I may develop osteoporosis at some point. Two factors come into play here. One is the chemotherapy drug that I take every day to prevent a breast cancer recurrence can cause bone loss. Added to this is the drug, Cytomel( T3),which  may also cause bone loss. I take a very small dose of Cytomel once a week. The reason for this is that my endocrinologist has reduced my Levoxyl ( T4) dose to one-half tablet once weekly ( six days a week, I take a whole tablet). T3 is the energy part of the thyroid hormone formula. Our bodies are SUPPOSED to convert T4 into T3. If this process is flawed in any way, a person may  feel extremely fatigued. T3 supplementation can really help boost our energy , but it does come with a cost- especially as we get older.

The take away from this information is this. If you discover, from blood work testing, that your T3 is low, you may want to talk to your physician about supplementing your T3. There are a couple of ways to do this. You and your doctor may decide that you can stay on your T4 only drug ( Levoxyl, Synthroid, generic levothyroxine,etc) and add some Cytomel ( T3) OR you may decide to try a naturally derived medication like Armour thyroid, which contains both T3 and T4 in one tablet. Besides possible osteoporosis, too much T3 can possibly  cause or  worsen  heart arrhythmias. Because of this, not everyone can take supplemental T3. As I mentioned, it is something that needs to be discussed with your doctor before you decide that it is safe/effective for you.

There are other things that everyone can do to help boost our low energy levels. One is to make sure that our thyroid medication, whatever type you use, stays cool. Heat will break down thyroid medication, making it less effective. With the heat wave sweeping our country right now, make sure to keep your medication in a cool place. It seems to be especially true for the naturally sourced drugs. When I was practicing pharmacy, I always recommended that people keep their natural thyroid medications in the refrigerator ( you do not want to push the bottle to the back of the fridge, though. it might freeze!) Refrigeration also helps keep down the smell of naturally derived thyroid medications. If you are traveling this summer, keep your medications in the air conditioning ( your purse, for example) or in a cooler if that is not possible. And for those that mail order their  medications, I would request that the company send your medications out with a refrigerated ice pack. Also, do not let these drugs sit in a hot mailbox! I know someone who mail ordered her thyroid medication and it sat in a hot mailing room as well as the mailbox. Her TSH skyrocketed ! When she figured out what had happened, she made sure to keep her medication from getting too hot.

It is easy to say, but getting extra, or at least adequate sleep is very important. Another thing is move! Exercise sometimes seems like the last thing that a thyroid cancer patient would be able to do, but exercise can actually boost your energy levels. A brisk walk is great- only do it early in the morning or in an air conditioned place. Since we are missing our thyroids, we are especially sensitive to heat (as well as cold. )

Before I had thyroid cancer, if I was very tired but needed to do something, I could push myself to accomplish whatever task I needed to do. That is not true for me anymore. If I am truly tired, I find that I can not " push through". I just hit a wall, and can not make myself go forward. This is something that I think is very hard for those who have a thyroid to understand. I have had to accept the fact that there are times my body is telling me, yelling at me, to rest, and I have to do that. I have to prioritize my activities and I do have limits now.

Some people take vitamins and supplements to help boost energy. I am not sure that these work, but if they seem to work for you, go for it. The only thing that I would never, ever recommend is an energy drink/product. These are very harmful and high doses of caffeine and can be extremely dangerous for certain people. Besides, what goes up, must come down, and usually it involves a crash.

I wish that I had the magic cure for fatigue. I still struggle with this despite my best efforts. Eating well, getting enough sleep, exercising, finding joy in life and expressing gratitude have helped me. I do not always follow my own good advice, but I am trying. One other tip- it is just fine to take a nap!

What it means to be " your own best patient advocate", and why it is so important...

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...

Thyroid cancer: Total thyroidectomy or Lobectomy? here are the pros and cons....

One topic of discussion that I have seen come up on several thyroid cancer websites lately, is the question of "Which is better? Thyroidectomy( removal of all of the thyroid gland)  or lobectomy ( removal of about half of the thyroid gland)?" As with anything else, we are all individuals, and there is no one size fits all per se. I will briefly discuss the different surgeries, pros and cons, and then I will tell you what I had done and how I made my decision.

Probably one of the most important things to do at the first signs of thyroid trouble, ( nodules that are growing or " cold", rapid thyroid gland enlargement,etc) is to schedule an ultrasound led biopsy which is done by a person who has experience in doing thyroid biopsies. Sometimes, though, despite someone's best efforts, the biopsy will come back as " inconclusive". I will mention that it took three biopsies, over the course of a few years, to get one that actually showed my thyroid cancer. The last one that I had, the one that was positive for cancer, was ultrasound led ( otherwise, it would have been like sticking a needle in a haystack and expecting good results). Also, the biopsy was done by my endocrinologist. This was my FOURTH endocrinologist. Yes, it took me that long to find a doctor who not only was skilled in thyroid disorders, but one who also listened to me, as far as how I was feeling and what treatment sounded good to me. Do not hesitate to switch doctors, or get a second opinion, if you feel like your needs are not being met. This is your life, and you need to be your own best patient advocate.

Another very important thing to do, is to find a very good surgeon. A surgeon  who specializes in thyroid cancer surgeries and does a LOT of them. Thyroid surgery, full or partial, is not easy. There are several things to consider, such as, your vocal cords. You may not want to be a contestant on " The Voice", but you need to be able to talk! An inexperienced surgeon can damage the vocal cords, your esophagus, nerves in the neck, and probably most importantly, the parathyroids.

 Just a word about the parathyroid glands. We are ( usually) born with four parathyroid glands. Although the parathyroid glands are near to the thyroid and share the same blood supply, they do not perform the same function as the thyroid. Our thyroid gland controls our metabolism, and affects every cell and organ in our bodies. The parathyroids regulate calcium levels ( so that our nervous systems will work) but do NOT affect our metabolism. Calcium also is the primary element involved in muscle contraction. A person can function fairly well  with just one parathyroid, amazingly enough. But if the surgeon accidentally removes all four parathyroid glands, then the patient has hypoparathyroidism for life. There are calcium supplements, prescription ones, that a patient can take, but acceptable calcium levels are difficult to maintain. The optimum level of calcium in our bodies should be roughly 9 to 10mg/dl. Two of my parathyroid glands were also cancerous. My surgeon had to remove them, but that still left me with two functioning parathyroid glands. I did receive IV calcium in the hospital, and had to take a prescription calcium plus an OTC one for about 6 weeks or so after the surgery. My surgeon was afraid that my parathyroid glands would not " wake up". They are pesky little things ( only about the size of a grain of rice) and do not like to be messed with.

In a total thyroidectomy, the entire thyroid gland is removed, perhaps with some lymph nodes if they look suspicious. The reasons for having a total thyroidectomy can be due to a large papillary thyroid cancer, a follicular thyroid cancer ( with or without spread), hurthle cell cancer, medullary thyroid cancer, a cancer that is unencapsulated ( appears to have spread beyond the gland, but not to distant sites), a cancer that HAS spread to the lymph nodes or other sites in the body, just to name a few reasons. A patient can also request that the surgeon remove the whole gland. This may be a good idea if it may be probable   that the thyroid cancer could return in  the other side. This would prevent a second surgery and may be the best option for the patient. Here is where it is important to have a good relationship with the surgeon. She/He can inform the patient of other patients' surgeries, total or partial, and relate the outcomes.

With a total thyroidectomy, the patient must be on thyroid supplement medications for life. There should be monitoring of the dose, as well as other tests, to insure that the patient is feeling well and in remission. With a total removal of the thyroid, RAI can be used. This is another weapon in the doctor's arsenal that can be used to fight thyroid cancer. I will not go into the pros and cons of RAI, but I have discussed it in earlier blogs. Again, the patient should discuss the benefits versus potential side effects of using the RAI for treatment,  and make the best decision for them.

Lobectomy, or partial removal of the thyroid gland, can be performed if the thyroid cancer is small.  There should be no lymph node involvement, as determined by ultrasound or CT scan. Of course, there is always the chance that the thyroid cancer can return, or be present and not detected, in the side that is not removed. This would result in another surgery. RAI is not used for treatment after surgery because it would damage the remaining part of the thyroid gland. The amount of thyroid hormone medication after surgery  is either small or non-existent. A patient having a partial removal of the thyroid, can not depend on thyroglobulin levels to predict the existence of thyroid cancer. That is because the healthy cells of the thyroid gland produce the thyroglobulin, too. There is also the added benefit that the potential damage to the vocal cords as well as the parathyroid glands, is not as likely compared to a full thyroidectomy.

The decision to have a total removal or partial removal of a cancerous thyroid gland  requires a good relationship between the  patient , a very experienced surgeon, and a doctor familiar with thyroid disease. Every person is different as far as what type of thyroid cancer is present, the stage of disease, what other organs or lymph nodes are affected, the age of the patient, just to name a few variants. I will now recount my story. I had papillary, with follicular variant, stage three, thyroid cancer. Two of my parathyroid glands were cancerous, as I stated above, and were also removed- along with eleven lymph nodes. Both of my main tumors were unencapsulated and diffusely infilitrative. While none of my lymph nodes tested positive, the tumors had burst open and spilled into the vascular tissues around my thyroid gland. Here is the surprise: I had initially wanted to  have the surgeon just  remove one side of my thyroid- a lobectomy. He said no, because in his experience, this would involve a second surgery at some point. I am glad that I let him do a total thyroidectomy because I had undetected thyroid cancer in the other side.( Detected in an after surgery biopsy)

I decided to get the RAI after the surgery, as recommended by my endocrinologist and the radiologist. I had a large dose, 155 milicuries, and still continue to be monitored by my endocrinologist, and will be for life. After almost  nine years of being on a dose of levothyroxine that has suppressed my TSH to essentially zero, my endocrinologist is letting my TSH rise into the low normal range. I still have office visits and ultrasound exams every six months. I do have " scan anxiety" as do many others, but I feel that it is worth a little testing anxiety to make sure that the cancer has not returned.

To wrap things up, there is no one  correct answer for the question "Is it best to get a lobectomy or a total thyroidectomy?" Do your homework. Find out as much as you can from reputable books and websites about the type of thyroid cancer that you have, what factors may be affecting your treatment plan, keep copies of tests, biopsies, ultrasounds( they belong to you, after all), and find doctors that are knowledgeable and that will work with you. Again, be your own best patient advocate. I have said this many times to others, but that really is the best treatment  plan that you can have.

the link between wound healing and hypothyroidism

I have not been blogging for a while- for a good reason. I had  total left knee replacement surgery on March 8th. I postponed the surgery for as long as I possibly could because I knew that, even though I would love the outcome,  it would be difficult, especially the physical therapy part. I thought that I was very well prepared about the surgery and the physical therapy afterward. As it turns out, I was not as well prepared as I thought. I had the worst bruising and swelling in the operated knee that my physical therapist has ever seen! I followed all of the instructions that were given to me by my physician. I did all of my physical therapy- both at home and twice weekly in an  outpatient setting. I had such bruising and pain in my leg, that I was sent to the hospital to get an ultrasound to make sure that I did not have a blood clot. Thankfully, that was not the case. But why all of the swelling and bruising? And why am I making such slow, or sometimes no, progress? I know that every person is different, but my physician, my physical therapist, and even myself, had all expected a different outcome for me.

I have put a lot of thought into what factors  may have caused such slow healing, swelling, and to be honest- pain. I have researched this, and I did find some possible answers from a few medical abstracts. Here is what I found out.

First, and my physical therapist talked to me about this, I have lymphedema on my left side from breast cancer surgery that I had done in 2015. Lymphedema is a chronic condition and is defined by an article in " Wound Care Advisor", written by Erin Fazzari, MPT, CLT, CWS, DWC, as: " a condition of localized fluid retention and tissue swelling characterized by high-protein edema caused by a compromised lymphatic system. All exterior regions of the body ( for example, face, neck, torso,  extremities and genitals) can be affected. "

I will translate that a bit, and put it in my own words. Our lymphatic system is like our internal vacuum cleaner. Everyone has " trash"in our bloodstream from our bodily functions that needs to be removed. We all have hundreds of lymph nodes that are connected by lymph glands. Within the glands, there is a fluid that passes through the nodes and picks up, sort of like a vacuum cleaner, all of the waste products from cell destruction, bacteria, and  viruses, among other things. This " trash" is filtered by the lymphatic system before the fluid is dumped back into the bloodstream. Our lymphatic system is a very important part of our immune system.

When I had breast cancer surgery, I had a few lymph nodes removed. I also had eleven lymph nodes removed when I had thyroid cancer surgery. My lymphatic system is now a little challenged, to say the least. This fact probably accounts for some of the excess swelling and bruising that I had after my knee replacement surgery. But I wondered, could there also be something else going on? How about my hypothyroidism? Even though I am on thyroid replacement hormones, I do not have a thyroid gland, and my thoughts are even if one has the best combination of thyroid replacement medications, and one's dose is correct, this still does not make up for a healthy, functioning thyroid gland!

I was able to find one study on the possible link between delayed healing and hypothyroidism. It is from the journal PLOS/ONE, and is titled: " Impaired Hair Growth and Wound Healing in Mice Lacking Thyroid Hormone Receptors.", published, September 25, 2014. Author, Constanza Contreras -Jurado, et. al. Keep in mind this was a study on mice, but I learned some very fascinating things. I already know that the thyroid gland affects every organ and cell in the body. But here are some very interesting facts from the study.

First, the skin is a target organ for thyroid hormones, and changes in thyroidal status can lead to skin alterations. Secondly, having thyroid receptor deficiencies can affect the regulation of collagen deposition during wound healing. Thirdly, the data from this study showed that cutaneous wounds heal more slowly and show reduced collagen deposition in the mice lacking thyroid hormone receptors. The author concluded that thyroid hormone administration accelerates wound healing in mice.

I have saved the best for last. The author concluded that topical treatment with thyroid hormone accelerates wound healing in mice. In another study that I came across, there is an ongoing trial of topical T3 solution that has shown promise in wound healing( in mice at the present time.) This is exciting news to me! I am looking forward to the results of this study, and the possible positive impacts this may have on wound healing in humans.

So, I have had a bit of a rough go in the healing process with my knee surgery. I am starting to make a little progress in the four and one-half weeks since I had the surgery. It helps me  a bit to understand what may be impeding my progress and somehow this keeps me from being so discouraged. So, I am not the hare in the race, I am the turtle. But I will get there.

Results blog, part two... AKA, really unproductive office visit, but I got to see my daughter and her family, blog

I went in for my office visit with my endocrinologist's physician assistant. My doctor has been out with some surgery, and I needed to get my six months office visit in. I will cut to the chase- it was a big waste of time. I now am reminded of how much I like my endocrinologist, and what a good job that she does. And how she listens to what I have to say. And how we can compromise on a solution ( as in the  dose or type of medication,etc) that makes us both happy. This was not the case with her PA. He is a nice enough person, but he did not understand why my doctor is requiring an office visit, ultrasound, and blood work every six months. He did not understand why my doctor likes natural thyroid hormone drugs so much. Or why she prescribes cytomel to those of us who take synthetic T4, but need some T3 ( cytomel) in order to make it through the day. I saw  the " dark side" of how thyroid patients are treated. Of course, I have seen and experienced this before. I had to see FOUR different endocrinologists before I could find one that would help me. By then, according to the surgeon who removed by thyroid and two of my parathyroids, I had had thyroid/ parathyroid cancer for several years. Why is it so difficult to get someone to help us???  End of rant. The moral of  this story is to be your own best patient advocate. Keep all of your records. Do NOT be afraid to get a second opinion or a new physician, if you are not happy, i.e, feeling well, with the treatment you are receiving.

I suppose that I had gotten comfortable with the great level of care that I have been receiving from my endocrinologist. It is what I expect now- a physician that is knowledgeable, competent, and receptive to my ideas and suggestions. By receptive, I mean that we can discuss my concerns and my doctor will take them seriously. I value her opinions, but at the same time, she values mine. The PA that I saw tried to change the dose of my Levoxyl. I think he could see the fire in my eyes at this point, and decided to leave that for another day. My endocrinologist had already  reviewed my blood work results, and had made the necessary dosage changes that were satisfactory to us both. No way was I allowing him to screw things up!

I have a return visit scheduled for six months from now. The receptionist at checkout asked me who I would like to see- the PA or my endocrinologist. Even though I really enjoyed my visit with my daughter and her family, I am planning on seeing my endocrinologist next time, and the next time, and the time after that... 

The Results blog, part one...

Well, I had hoped to wrap things up for a little while with this" results" blog. But is seems there has been a little snafu. My appointment with my endocrinologist was for 9AM on February 13th, in Raleigh, NC which is about 4 and 1/2 hours from where I live. I do not mind the drive because my husband and I get to spend the night with our daughter and her family, so it is something to look forward to. Since my appointment was to be so early, we left the day before and spent the night with our daughter so that we did not have to get up in the dark, drive in rush hour traffic, etc. Turns out, my doctor was sick the day before and had to leave work. Her nurse called my home phone number and left a message for me saying that  I would have to reschedule my appointment. Why the nurse did not call my cell phone is a mystery, but we did enjoy our visit with our daughter and her family.

On the day of my " supposed " appointment", I went to my endocrinologist's office expecting an office visit, and boy were they surprised to see me! I did not get upset, but the receptionist looked a little uneasy when I was trying to check in. He called for backup- it seems he did not know exactly what to do. Long story short, I ended up making another appointment with my endocrinologist's PA, as my doctor's schedule was too full to squeeze me in any time soon. I did get to talk to her nurse, at my request, and I received a copy of my lab work. My TSH is still too low, and my T4 is too high. For some reason, they did not test my T3 which is unusual. My thyroglobulins are still low, so that is good. My doctor went ahead and lowered my dose of Levoxyl, from my blood work results, so I am trying to get used to that dosage change. My physician reduced my dosage down  from 125mcg to 112mcg. It does not sound like a lot does it? But for those of us with thyroid disease, especially those of us living without a thyroid, dosage changes are quite a challenge. Just a few micrograms difference can really take some getting used to. So, I am tired and a little cranky. I am having a little brain fog and I am not sure that this side effect is just the case with me, but I am more accident prone. Perhaps it is the brain fog, but we have  had to stock up on bandaids.

So, I see the endocrinologist's PA on March 1st for " my results, part two." Not sure what the PA is going to do, and I am a little nervous because this will be the first time that I have seen him. If he does not suggest this, I am going to ask for a blood work order so that I can see what my levels are in three months. By that time,  I should hopefully be adjusted to my new dose, feeling better- less brain fog and- I will not be requiring as many bandaids. Never a dull moment. But the good part is that I get to see my daughter and her family sooner than I had expected. Still Pollyanna...

Pre- testing stress...

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...

The Pros and Cons of TSH suppression in thyroid cancer patients; a case study... about me.

I have been concerned about total TSH suppression for a while now. There are pros and cons to be considered because every patient is different. Even if we have the same type of thyroid cancer ( there are at least five types) there are multiple stages, unique situations, there are a wide variety of physicians who have their own treatment plans for thyroid cancer , and of course, most importantly, we are individuals- and have our own personal story.

My personal story is as follows. I was diagnosed with papillary thyroid cancer, with follicular variant, stage three. My surgeon removed my entire thyroid, two parathyroid glands ( they were also cancerous, which is not common I was told), along with eleven lymph nodes. A few months after my surgery, I had a large dose( 155 milicuries)  of the radioactive Iodine, AKA, I-131 or RAI. I had elevated thyroglobulin levels  for almost four years. Thyroglobulin is sort of a thyroid cancer marker, you might say. Only thyroid cells make this, and if you do not have a thyroid gland, and have thyroglobulin present in your body, one can assume that you still have some thyroid cancer cells  lurking around somewhere. My endocrinologist chose not to order up another dose of the I-131 to try to get my thyroglobulins down. I am thankful for this decision, because the I-131 damaged my salivary glands somewhat. I had large salivary stones about a year after the I-131 dose. I still have soreness, and occasionally some swelling in my jaw area.  I have been able to control the symptoms, at least so far,  with sour lemonade, warm compresses and ibuprofen for the pain and inflammation.

What my endocrinologist decided to do, and I am still on this schedule for now, is to order ultrasounds, blood work and office visits every six months. In May of this year, I will be a nine year thyroid cancer survivor. So, my thyroglobulin levels are acceptably low now( less than 0.1ng/ml- for those of you who would like to know.) I have had my TSH completely suppressed now for nine years. Complete suppression of TSH has been the gold standard of practice for thyroid cancer patients with stage three or four thyroid cancer, or those with persistent, or  distant metastatic disease. My levels as of August, 2018 were as follows:  T4( free): 2.12 ( range = 0.82- 1.77 mg/dl) and TSH: < 0.006u Iu/ml ( range = 0.45 to 4.5)

According to the American Thyroid Association Guidelines( 2009) of TSH suppression, and I quote:

**Initial management of TSH:
*For high risk and intermediate risk patients, TSH  is recommended to be below 0.1
*For low risk patients, TSH is recommended to be slightly below the lower limit of normal- 0.1 to 0.5

** Long term management of TSH:
*For patients with persistent disease, the serum TSH should be maintained below 0.1 indefinitely in the absence of specific contraindications.
*In patients who are clinically and biochemically free of disease but who presented with high risk disease, consideration should be given to maintaining TSH levels of 0.1 to 0.5 for 5 to 10 years.
*In patients free of disease, especially those at low risk for recurrence, the serum TSH may be kept within the low normal range ( 0.3 to 2)

So that is basically the outline of the pros of TSH suppression. Suppress the TSH, and keep the thyroglobulin cells, if there are any remaining after surgery and treatment with the I-131, dormant. This suppression of TSH technically should prevent the  thyroid cancer from  recurring.

And, here, folks, are the very serious cons of total TSH suppression. In an article, " No advantage for Aggressive TSH Suppression for Thyroid Cancer, Medscape- November 3, 2014".There were some interesting facts from a study of around 5,000 thyroid cancer patients over a period of about six years. According to Dr.Aubrey Carhill( University of Texas MD Anderson Cancer Center, Houston) , "Aggressive TSH suppression confers no additional survival advantage as compared with moderate suppression in differentiated thyroid cancer- even when limiting the analysis to patients with distant metastatic disease, which remains particularly relevant given the risks associated with long-term thyrotoxicosis."

Let me break that mouth full of info down a little. Dr.Carhill went on to say that " aggressive TSH suppression leads to worse survival than moderate suppression." Why? The complications of keeping the TSH suppressed, especially for long periods of time, include osteoporosis and atrial fibrillation. Personally, I have not had any heart issues, that I am aware of, but my bone density test last time ( in August, 2018) went from a +0.3 to a-1.2. That means that I am not in full blown osteoporosis, but I now have osteopenia. Osteopenia is sort of half way between having healthy bones, and having osteoporosis. I am losing old bone faster than I am making new bone. My bones are weaker than they once were, but not brittle enough to break easily- as they could with osteoporosis.

This is off topic, but I know that some people are debating the issue of having the I-131 treatment after surgery. There is the possibility of salivary gland issues. There are some who think that I-131 may lead to other cancers. Dr. Cahill states that " RAI did continue to remain as an independent predictor of survival in stage three thyroid cancer patients. In stage four patients, thyroidectomy with RAI continued to show improvement in overall survival." As with any other treatment decision, the decision to have the RAI or not, depends on the patient, the treatment plan of the physician, and the particulars of the type and stage of the thyroid cancer.

Those of us who have had thyroid cancer take a thyroid replacement hormone drug so that we will not be hypothyroid, or have a recurrence of our thyroid cancer. The dose is the slippery slope in this equation. One needs a dose of thyroid replacement hormone ( T4 or T4 + T3)  large enough to suppress TSH or keep it in the low normal, or perhaps even in the normal range- depending on what type of thyroid cancer one had and the staging. The new treatment for thyroid cancer patients, with the possible exceptions of those who have persistent disease, is to not totally suppress the TSH- when talking about long term management of the disease. Long term TSH suppression can cause serious problems with our  bones and/or  heart function. Every thyroid cancer patient should be their own best patient advocate. Know your test numbers! At the very least, know your TSH, Free T4 and T3. Choose a physician who is experienced in working with thyroid cancer patients, and is willing to come up with a treatment plan that will be best for you.

And since this is a case study about me, I will tell you that I am now taking a reduced dose of my thyroid hormone. My next blood work and appointment with my endocrinologist is coming up mid- February.  I have been in remission for a few years now, after my thyroglobulin numbers came down to near normal. I have not had any cardiac issues, but I am trying to avoid full blown osteoporosis, which can be serious. Am I nervous about reducing my dose? ABSOLUTELY! But I know that my physician will continue to do blood work, and ultrasounds when needed, so if I should have a recurrence of my thyroid cancer, hopefully there  will be time to do something about it. I am doing my part,too, by keeping copies of my blood work and tests.

This is my case study. What is best for me, might not be best for others. Find a good physician, know your numbers, and do all of the research ( from reputable web sites or books)  that you can so that you might work with your physician to come up with your own best treatment plan.