Thursday, December 17, 2020

Baby it's cold outside....especially if one does not have a thyroid!

 I am so very cold sensitive- especially this time of year. Why? I know that it has to do with my lack of a thyroid gland. Though I take medication for my " extreme hypothyroidism" as I call it, even the best medicine can not compete with a healthy, functioning thyroid gland. Before I discuss cold sensitivity that affects most thyroid cancer patients, I will provide a quick review of how the thyroid system works. And it is a system of different organs, so part of this concerns those of us  who do not have a thyroid gland.

The thyroid system starts in our brain. The hypothalamus, which is located at the base of the brain, secretes a hormone called thyrotropin releasing hormone. It's friends call it TRH, for short. Friendly TRH travels from the hypothalamus down to see the pituitary gland, which lives about a block away from the hypothalamus. TRH stimulates the pituitary gland to produce TSH. If you are lucky enough to still have a thyroid gland, the TSH enters the blood stream, travels to the thyroid gland and stimulates it to produce T4. Since we are thyroid-less, we still get the T4 ( the inactive form) converted to T3( the active form) thanks to an enzyme called 5-deiodinase. Lucky for us, this enzyme is found in many tissues of the body. Here is an important fact to remember: " By far, most of the T3 in the body is produced from the conversion of T4 to T3 that  takes place outside of the thyroid gland in the body's tissues." Our  T4 comes from our medication, so that the process can be completed. In addition to taking T4, some people also  take T3. It is interesting to note that T3 is approximately four times more active than T4. T3 is in fact, the physiologically active thyroid hormone. However, there is a delicate system of checks and balances. T4 is important because it provides a steady, constant supply of the T3. We need both, in other words. We can depend on our bodies ( thanks to 5-deiodinase) to metabolize our T4 to T3, or in some cases, we need additional supplementation with T3. This is an important subject for one to discuss with one's physician. In my humble opinion, thyroid medication choices should be individualized and no one size fits all.

I have  reviewed how our thyroid system works; remember it is a system so that even though we are thyroid-less we still get to play in the game. I will now  try to explain why the song " Baby it's cold outside" gives us the shivers, in more ways than one. In a study conducted by the Proceedings of the National Academy of Sciences ( PNAS) a previously unknown link was discovered between how thyroid hormone affects the blood vessels, and in turn, body temperature. Before this fact was discovered, and yes it involved mice, the cold sensitivity problem in hypothyroid patients was attributed only to the thyroid hormones overall effect on the metabolism in the cells. It is now known that thyroid hormones can influence how much dilation there is in blood vessels, resulting in how much heat is lost. So, cold sensitivity is a two-fer, involving cell metabolism and the amount of vascular dilation that occurs. 

What do we do with this information? While it was interesting to learn about why hypothyroid patients and patients without a thyroid are more sensitive to environmental temperature, what can we do about decreasing this cold sensitivity?

First, make sure that one is taking the proper medication. Does the dose of T4 ( levothyroxine, Synthroid, Levoxyl and others) need to be increased? Could adding T3 (cytomel) be helpful? There is also the choice of a naturally derived product that contains both T4 and T3. There have been some potency and supply problems with this medication ( Armour thyroid, and others), so please keep that in mind if you and your physician choose this option.  Your physician will do blood work to make sure that several tests are within range. TSH, free T4, T3 and others should be tested. Also, an important factor is how the patient feels. We are not just a set of numbers! How one feels on a certain dose or regiment affects one's quality of life. It is very important to choose a physician who understands this and is willing to " look beyond the numbers". 

Getting enough sleep is so very important, also. When we rest, our body gets a vacation, of sorts. Sometimes if our medication is off, we do not sleep enough and/or get good, restful sleep. According to a study conducted by the Harvard School of medicine, blue light- from computers and even energy efficient lighting, can throw one's circadian rhythm out of order. Sleep will suffer, and worse, excessive exposure to blue light, particularly in the evening( when our bodies should be resting or sleeping) could be a contributing factor in causing  cancer, diabetes, heart disease and obesity. Yikes! Exposure to blue light can suppress melatonin( a hormone that influences our circadian rhythms). I was unaware of this, but fluorescent lights as well as the popular LED lights produce more blue light than conventional lighting.  Even a night light can produce blue light. ( a fact that is particularly upsetting to me!).  Some ways that the Harvard study recommended to protect one from too much blue light include: using dim red lights for night lights(!); avoid looking at computer screens and cell phone screens approximately two to three hours before bedtime; expose yourself to lots of bright light during the day- which according to the study-boosts ones ability to sleep at night along with better mood and alertness during daylight hours; and finally, if one works the night shift, consider purchasing blue light blocking glasses. 

Eating well, taking warm baths, wearing warm clothes, especially when one goes outside, are simple steps that one can take to help with cold sensitivity. 

I have noticed that I am more sensitive to cold in the evenings. It may have something to do with the metabolism of my medications, perhaps that my pain threshold seems to be lower in the evenings, or something to do with my immune system. I am not sure exactly why this is the case, but in talking with other hypothyroid/thyroid cancer patients, several people feel more cold sensitive in the evenings as well. I could not find any studies on this, but there is probably one out there somewhere.

So, during this winter season, I hope that everyone, especially those of us without a thyroid, can stay as warm as possible. A friend of mine has recently switched to wearing all wool clothes this winter. She has wool dresses, leggings, sweaters, ponchos, even a pair of wool underwear. I think she may be on to something. I now have a wool hat and sweater. More to come, I hope...

Wednesday, October 14, 2020

Finding a new doctor...


   I have been seeing my endocrinologist for several years now. She has decided to retire, and I am happy for her, but- that brings up the unpleasant task of finding a new doctor to monitor my thyroid cancer,order blood work as needed, order yearly ultrasounds,etc And my doctor has set the bar very, very high as far as providing excellent care. She listened to me and made her decisions on my care  based on not only my lab results but how I was feeling. She respected my thoughts on my health care and I appreciated her expertise. She also was the one who did the biopsy that diagnosed my thyroid cancer. A previous doctor had said that the reason I was feeling so badly and the fact that my labs were a bit off was due to " stress". I know that stress is certainly bad for one's health, but sometimes I think a diagnosis of " stress" is just a stand in for a diagnosis of " I do not know what is wrong". My thyroid cancer was stage three when it was diagnosed. My thyroglobulins ( a marker for thyroid cancer after surgery) stayed elevated for over three years. My doctor  held off on ordering a second round of the Radioactive I -131, knowing that I had gotten a high dose the first time, and that there can be serious  side effects and consequences when using higher doses. Turns out she was right on waiting. The day my thyroglobulins became " undetectable" we both got a little teary eyed. She was my physician and I was her patient, but we also had mutual respect and admiration for each other. 

   So now, I have had to find a new doctor. I have an appointment with another endocrinologist  for a new patient visit along with blood work and an ultrasound. Like so many people, the Covid pandemic has put me behind on my checkup and tests. I have been a little nervous waiting longer than I should, even though the tests are stressful. I always advise people to be their own best patient advocate, and I will try my best to do that. I have researched endocrinologists within a reasonable driving distance from where I live. I will say here that some people prefer another kind of doctor, other than an endocrinologist,  for their thyroid care. That is fine- we are all different. Just make sure that the doctor that you choose has had a lot of experience treating thyroid cancer patients. I think another very important thing is that one's doctor LISTENS TO WHAT YOU SAY. Of course labs are important, but how a patient feels is extremely important. As an example, several times my lab work sort of "put me on the fence" as far as going up or down on my thyroid replacement medication. That is when my old doctor would ask me how I was feeling and would make the dosage change(or not) based on how I felt, not just the lab results. The wait time to see my old doctor was usually fairly long. But I never minded this because she was never in a hurry to rush me through my appointment.  

   My new endocrinologist is closer to where I live- two and a half hours away versus five hours. That is a plus, I guess. He treats all thyroid patients, as did my old physician, and  he does treat a lot of thyroid cancer patients, as well. His patient reviews were good, which is another thing that I research. One can go online and look for patient reviews, as well as see if a particular physician has had problems with the medical board. ( My new doctor  has not). Knowing a physician's educational background is helpful, too. I do not mind if those reading this think that I am picky. Yes, I am picky. This is my health and I need to do my part to take care of myself, which involves seeking out the best physician that I can. 

   I am also taking in a list of questions to ask my new doctor. It is a  good idea to make a written list of questions. It is easy to get distracted when one is in the doctor's office- especially a new one. I hate getting home and thinking of all of the questions that I wished I had asked at my appointment. A good doctor will take her/his time in answering a patient's questions. I do not mind waiting at my appointment providing I receive the same time and consideration that the previous patients have gotten.I want to feel like a person and not just patient number ( insert number here). 

   It is so difficult to switch doctors when you love the doctor that you already have/had. If I do not like my new doctor, then I will begin my search again. The surgeon who removed my cancerous thyroid, eleven lymph nodes and two cancerous parathyroid glands said that I had had thyroid cancer for quite a long time. It was not stress after all. I will continue to be my own best patient advocate and speak up when I am not feeling well or when  things seem off. 

   I hope that if anyone reading this is having to choose a new doctor, you may have gotten a few good tips. I wish us both good luck... 

Friday, August 28, 2020

Managing a second chronic medical condition along with hypothyroidism/thyroid cancer

 Many people have to deal with other chronic  health conditions, along with a cancer diagnosis. Sometimes this makes treatment for thyroid cancer patients  somewhat tricky. I will use myself, as usual, as an example. I have just been diagnosed with hypertension. It should not have come as a complete surprise, because both of my parents had hypertension. A doctor once told me, " Well, it is just a matter of time until you develop hypertension, since both of your parents had the disease." I was hoping that would not be the case. My diagnosis sort of came along at a bad time, though. My endocrinologist is " adjusting" my thyroid dose again ( those of you without a thyroid gland  know EXACTLY how that goes), so I am feeling a little off because of that. Add to that, trying different medications and dosages of anti-hypertensives to try to get my blood pressure under control. I am not having a good time right now- and I do not know if alternating two different doses of Levoxyl or the new blood pressure medications are making me feel poorly. 

On the positive side, I was able to stop one blood pressure medication, that actually caused some swelling. My physician added a diuretic type medication for my blood pressure and this seems to be working. I have lost seven pounds of (fluid?), I would assume. That is a definite plus in my book. I am fortunate that my husband can take my blood pressure a few times a day, so I can see if the anti- hypertensive medication is working. The first medication that I tried was a beta-blocker. At first, it seemed to help with my blood pressure, then stopped working. And there was that fluid retention problem. The second medication is a diuretic, as I said. This one is controlling my blood pressure, as well as reducing some fluid in my body. I do feel light headed and a little tired. I am trying to incorporate some potassium rich foods into my diet, as a diuretic is not picky- they kick out the good potassium with the bad sodium. 

I know from my work in health care, as well as my own personal experience, that it will take a few weeks or so to get everything sorted out. I am trying to be patient with myself, rest a little more and drink more fluids. Sounds counter-intuitive, but with a diuretic, one does not want to get dehydrated. I drink lots of water anyway, but I am trying to add more. That and some orange juice ( for potassium).

And there is the matter of when do I take my medications? My Levoxyl ( thyroid medication) comes first thing in the morning, as it has to be taken on an empty stomach, with no other medications.  Then I wait an hour, and take my blood pressure medication. I can not take the diuretic at night, for obvious reasons. This would be more difficult if I was still working. I am thankful that I am retired- for more than one reason! 

The dosage of thyroid medications are weight based, along with other factors. If I lose more weight, my endocrinologist may have to adjust my Levoxyl dose even further down. I am pretty sure, from what I read on many thyroid cancer websites, many others, besides myself, do NOT like to go down on our thyroid medication dosages. Along with the tiredness, a reduced dose can cause other hypothyroid symptoms- which are very unpleasant. My endocrinologist is very good about listening to how I am feeling as well as looking at my lab work. We talk about my dosage:  the numbers, how I am feeling, what I am comfortable with, what she is comfortable with and then come to an agreement on a  dose that  we both feel will work. I would recommend that thyroid cancer patients, or any thyroid patient- hypo or hyper, find a doctor that is open to discussion and compromise. I like to think that my doctor and I are working as a team to ensure my good health care.

When I was researching hypertension, I came across a very interesting supposition. Hypertension could be considered an autoimmune disorder! I had not heard of this theory before, although it makes perfect sense to me. In an article written by Steven Crowley, MD at Duke University, the author states: " some novel experiments illustrate that immune cells and inflammatory mediators can influence blood pressure precisely by impacting vascular function and renal sodium handling." This article is in the current posting of Kidney News Online, should anyone desire to read the entire article.This is exciting because it potentially opens the door for new treatment options for hypertension in patients with autoimmune diseases. 

I had hashimotos's disease ( an autoimmune thyroid disorder) before I was diagnosed with thyroid cancer. My parents both had hypertension, as I stated earlier, and my dad had thyroid disease. Is there a link? I certainly think so, but more research will have to be done before this is accepted by the medical community. 

There are other medical conditions that thyroid cancer/thyroid patients have to deal with simultaneously. This is a challenge, as many factors have to be considered. Being informed about your medications- how to take them, possible side effects, when to take them, and drug interactions, to name a few things, is extremely important.  Being your own best patient advocate and having a good relationship with your physician, pharmacist, as well as other health care providers is a big step in the right direction.  

Thursday, July 16, 2020

A look at three thyroid hormone replacement options after thyroid cancer or for the hypothyroid patient

One thing that I have learned about thyroid hormone replacement in thyroid cancer patients, or in those who are hypothyroid, is that there is no " one size fits all" when it comes to treating the individual. I am going to discuss three of the main line treatments for replacement of thyroid hormone, used by endocrinologists and other general physicians.

1.) Levothyroxine drugs only. These include brand name drugs like Synthroid, Levoxyl, and Tirosint. These drugs contain ONLY the T4 hormone. The T4 hormone is inactive. This means that the body has to convert the T4 into the active form of the thyroid hormone, or T3. A note about Tirosint. It differs from the other brand name drugs in that it does not contain some allergens, like gluten, lactose, sugars, dyes and talc- to name a few. The company says that people who have intestinal disorders, such as celiac disease,GI reflux,inflammatory bowel disease, and other GI disorders where absorption may be an issue, may benefit  from taking Tirosint. And by benefit, the company says that absorption may be better, leading to better thyroid hormone blood levels. I have not seen any studies personally, so take this with a grain of salt. Personally, I have heard some others who did like the Tirosint, and said that it did make them feel better. Again, no one size fits all, and thyroid hormone replacement is really a trial and error event.

Pros: Only one medication that the patient has to take. Tirosint MAY be helpful in people who have celiac disease, other GI disorders, or allergies to additives in the other T4 only drugs listed.

Cons: Tirosint is VERY EXPENSIVE, as are some other brand names. And most importantly of all, for some of us, our bodies do not convert T4 to the active T3 very well, and that means that hypothyroid symptoms will be present, i,e, our treatment will be less effective and we will not feel well. As for the generic levothyroxine medications, the potency can differ from one manufacturer to another,leading to inconsistent blood values and treatment failures. It is recommended that if a patient switches from one manufacturer to another, blood work should be done to insure that the patient has good T4 ,T3 and TSH levels.

2.) T3 ( triiodothyronine)  AND T4 ( Levothyroxine) given as a two drug regiment. If our bodies, for whatever reason, can not convert T4 to adequate amounts of T3, then  it makes sense to supplement with T3, right?  Not all endocrinologists and general family physicians will prescribe T3, and the reasons why will be listed in the "cons' section.

Pros: most patients report feeling better when a T3 drug ( Brand name : Cytomel, but generic is available, at a lower cost )  is added to their regiment. It is, after all, the energy portion of this combo- the gas that drives the car, one might say. In using this two drug approach, the physician can tweak the dosage, and is not locked into a fixed amount of T3- as will be discussed in the third option of treatment.

Cons: the patient has to take two different drugs for thyroid hormone replacement. The reason that not all endocrinologists or family physicians are comfortable prescribing a T3 medication, is that it can cause nervousness, headache, nausea, difficulty sleeping, and in rare cases when too much T3 is present- chest pain, irregular heartbeat, swelling of the ankles and/or feet, trouble breathing and unusual tiredness. This is where, I think, it is essential to have a physician who is comfortable with  and has experience in prescribing a T3 drug.

3.) Naturally sourced thyroid replacement drugs- ( NDT).  These are derived from natural sources, namely the desiccated ( dried) thyroid glands of pigs( usually, although there are some NDT from other countries that use desiccated cow thyroid glands). This medicine is measured in grains, not mcg as the traditional T4 and T3 drugs. Some  examples of this drug are Nature-Throid, WP Thyroid, and Armour. According to the information on the Nature-Throid website, each grain of Nature-Throid contains 38mcg of T4 and 9mcg of T3. WP thyroid brand has the same mcg of T4 and T3 as the Nature-Throid, while Armour thyroid brand has  slightly less.  The manufacturers of the Nature-throid suggest that due to its "higher bioactivity" physicians should probably choose a slightly lower dose for those patients who are converting from a synthetic hormone replacement drug to the NDT.

Pros: some people prefer a NDT type drug. Nature-throid does not contain any artificial colors or flavors, or any corn, peanut, rice, gluten, soy, yeast, egg, fish or shellfish( according to the manufacturers website). There is only one tablet to take, instead of two tablets  like option number two.

Cons: because it is a fixed ratio of T4 and T3, it is more difficult to dose if the patient needs less of one hormone or the other. In other words, dosing is not as flexible as it would be in option number two. Some physicians are concerned that a NDT type drug will not have consistent ingredients from tablet to tablet. This has not been proven, and may be an argument/marketing strategy coming from companies who manufacture synthetic T3 and T4 type medications. One problem that I have encountered  in my years of practicing pharmacy, is that these NDT tablets  smell really bad! If the drugs are stored in the refrigerator, it reduces the smell quite a bit. Another consideration is that people who have the Alpha-gal disease, can not take NDT drugs due to their  extreme allergy to red meat and pork products.

So, one size does not fit all when it comes to thyroid replacement hormone therapy! There are pros and cons to all of the above three regiments. Many factors must be considered when choosing what type of hormone replacement(s) is right for a patient. Careful discussion and a good doctor/patient  relationship  with an endocrinologist or family physician is key to success in treatment. Even so, there will be many dosage changes, and probably medication changes over the course of a patient's lifetime. Life situations change, patient health conditions change, sometimes there are changes in the manufacturing of a particular drug, or there is a shortage or back order of a medication- these are just a few instances where adjustments to medications would need to be made.

There are, however, a few tips that apply to all thyroid hormone replacement drugs. These drugs are heat sensitive. Store them away from heat, humidity, and direct sunlight. Mail order may not be the best option now, unless the company ships them with some type of cold pack. If possible, pick them up from a pharmacy. Thyroid medications work best when taken at the same time each day ( most people take theirs in the morning) - on an empty stomach with a full glass of water. Wait an hour before eating or drinking anything else for best absorption. If you are taking calcium supplements and/or vitamins containing iron, you will need to wait at least 4 hours before taking the them to ensure good absorption. When a patient switches from brand to generic, generic to brand, or even one generic to another generic manufacturer, it is recommended that the TSH and perhaps other thyroid tests  be checked in 6-8 weeks after the switch to make sure that the TSH,etc, are not affected. 

What about me, you may be wondering? Which treatment option did I choose? Believe it or not, I have tried all three! The one that seems to be working best for me now is option number two. I like the flexibility in dosing by having the T3 and T4 as separate medications. This could always change, as my body is changing, I am getting older (!) , and my health issues are changing. Like I said, there is NO ONE CHOICE THAT FITS ALL!

Wednesday, July 1, 2020

Adrenal Gland Fatigue- fact or fiction? And does it affect those of us who have had thyroid cancer?

Is there really a disease, or medical condition, known as " adrenal fatigue'? In researching this yesterday, I found several different opinions on this. First, I will give you the " Cliff Notes" version on the adrenal glands and their relationship with the thyroid.

When danger, real or perceived, is presented, this message goes to the amygdala( for most people this is the favorite part of the brain) which sends a message to the hypothalamus( another part of the brain that links the nervous system to the endocrine system). The hypothalamus then sends out an alarm to the pituitary gland (it is a pea sized gland that rents a small condo at the base of the hypothalamus). At this point,the pituitary gland sends out a message to the adrenal glands. The adrenal glands, which are endocrine glands, are located on the top of each kidney. When the 911 alarm system is activated, the adrenal glands secrete adrenaline and cortisol ( they like to make other hormones, but we will not talk about them here).

Lets say that a bear was after you. The adrenaline and cortisol secreted in this " fight or flight" situation would be very helpful in saving your life, potentially. The problem is when the adrenal glands keep getting the signal, " DANGER, DANGER", and there is no bear in the vicinity- only everyday stresses, that while are, well, stressful, put our bodies in a state of chronic stress. The hypothalamus and pituitary gland also regulate thyroid production hormones. In times of extreme stress, the thyroid gland slows the production of thyroid hormone as well as the conversion of T4 to T3. Remember that T4 is the inactive form of thyroid hormone, and is converted to T3- the actual fuel that drives the bus.

I think that everyone agrees that stress can cause many problems- lowered immunity, sleep issues, difficulty concentrating, irritability, anxiety, and the list goes on. The term " Adrenal Fatigue" was coined in 1998 by a chiropractor by the name of James Wilson. At this point, I would like to say that the Harvard Medical School, as well as the Endocrinology Society do NOT recognize the condition known as " Adrenal Fatigue". The official statement is this: " No scientific proof exists to support adrenal fatigue as a true medical condition."

That said, some practitioners of naturopathic medicine do believe that adrenal fatigue exists, and will do exams, tests and treatment for what they consider to be a medical condition. The test for adrenal fatigue usually, but not always, consists of either a urine, blood, or saliva sample test for cortisol levels. The saliva tests can also be obtained by the patient on line. The validity and accuracy of these tests is subject to debate. Those who believe in adrenal fatigue as a medical condition, as you would expect, believe that the tests are an accurate measure of adrenal fatigue. The established medical community- endocrinologists,many health care providers- do not support the belief that cortisol tests are an  accurate  predictor of  " adrenal fatigue".

Other treatments for adrenal fatigue can include lifestyle changes- better sleep, more sleep, dietary changes, exercise, meditation- you know, all of the things that everyone should be doing for better health. Sometimes herbal supplements are recommended. Remember that the supplements are "medications" and can have side effects just like traditional medicines. Herbal supplements can also interact with any prescription medications, so be sure to ask your pharmacist and physician before adding any supplements.

The symptoms that are associated with adrenal fatigue are symptoms that could be attributed to many other medical conditions. Difficulty sleeping, poor immunity, chronic fatigue, irritability, anxiety, depression, brain fog,etc. could be caused by thyroid, liver, kidney disease- just to name a few. Those of us who have had thyroid cancer, and our thyroid glands removed, are understandably  struggling with the above mentioned symptoms. Just the stress of having had cancer added to the adjustments in our thyroid replacement hormone medication(s) can take a toll on our everyday life. Could we also have adrenal fatigue? Does this even exist? I wish that I could give a definitive answer to these questions, but so far, there is no hard evidence to support the case for adrenal fatigue. I will encourage anyone who is not feeling well, especially in light of the Covid-19 pandemic, to seek medical attention. It may be necessary to explore all options with one's physician to rule out any other medical conditions.

In the meantime, practicing self care on a daily basis will help with just about anything. Sleeping well, eating a good diet- one that is sustainable, getting exercise that you enjoy( for me it is dancing and walking), reading a good book, and practicing gratitude are things that can help with stress relief. And we all sure do need that now...

Friday, June 5, 2020

My breast cancer checkup- or how Covid-19 makes a lab appointment and a doctor's visit even scarier

On Monday, June first, I had a lab appointment at my oncologist's office. I thought that my appointments would be in August, but I had  forgotten that I am ( was, actually) on the nine month checkup schedule. I received a phone call just a few days before my labs were to be drawn with the time and date I needed to be there. Now, keep in mind that I have not been ANYWHERE since March 24th. The idea of going to a doctor's office gave me the jitters. I will say that the procedures were handled in the best way that I could have imagined. When I arrived at the office, there was a sign on the sidewalk in front of the building where patients were to wait- 6 feet apart. There was a bottle of hand sanitizer at the front of the line. The check in person opened the doors when it was my turn to go inside. And by inside, I mean the space between the outside doors and the waiting room. A kiosk was set up there and the receptionist immediately took my temperature and asked how I was feeling. I said OK even though, as I have mentioned countless times, I could smell the hand sanitizing soap and, as usual, the scent immediately made me nauseous.

I was put in the " fast track" section of the ginormous waiting room and did not have to wait very long at all until the medical technician called my name. The technician took my blood pressure and got the blood sample, and just like that, I was on my way home! They are not kidding when they refer to this as the fast track. I wore a mask, by the way, and washed my hands and used hand sanitizer. I felt as safe as is possible now, I believe.

Part two of my appointment, the video visit, the virtual visit or whatever it is called, was conducted on Wednesday, June 3rd. As is the case when I actually was able to go inside the office, I spoke to a PA first. She told me that my blood work looked good. My calcium is low, but I reminded her that : 1) I only have two parathyroids. Two of the four were cancerous and had to be removed. As my surgeon told me at the time of my operation, he "chopped the other two up a bit and threw them back in." He said that he was not sure if they would wake up or not.  Those were his exact words. I got IV calcium in the hospital after my TT and took a huge dose of calcium carbonate and calcitrol for 6 weeks or so afterwards. I am happy to say that they obviously did wake up, they just take a vacation every now and then because they must be working very, very hard.
2) I did attempt to supplement with calcium tablets a few years ago. But I ended up with a kidney stone that had to be surgically removed. My urologist assured me that if I should ever have another kidney stone, it would have to be surgically removed, too. No way am I taking any more calcium tablets!

After the PA and I  chatted a little more, I was told to hold on for the oncologist. I will say here that I got all " dolled up" for this visit. And by that, I mean I put on a little makeup, washed my hair, and put on a clean shirt. It really was not necessary, though, because it was a grainy picture with delayed, echoing audio. I think that my oncologist was having a bad day, or maybe he hates these " virtual visits" because he seemed grumpy and I only talked to him, maybe 5 minutes, tops. He asked me about the neuropathy in my toes and I told him that my toes were still numb. He said, " Oh, well, it is water under the bridge, now." No offense to my doctor, because I really do like him, but I think that a troll lives under that bridge. The very best thing that he said was that instead of every 9 months, I can now go to the once yearly schedule. Yippee!

My big thyroid cancer check up is in October. I have an ultrasound, blood work, and  an office visit scheduled. My endocrinologist is a 5 hour drive from where I live. It is too early to tell how everything will go. I will have to go into the office for the ultrasound and blood work. And I imagine that the appointment with my endocrinologist will be in person. I will probably still wear a mask while I am in the waiting room, lab and ultrasound room. Of course, it is still early as I said, so who knows how things will be in October.

All kidding aside, these are strange times now. Trips to the doctor's office, no matter how well things are done, procedure wise, are frightening. My heart goes out to those people who are getting chemotherapy now. When I was getting ready to leave the oncologist's office after my lab visit, there was a woman in the alcove,checking in. She had on a head scarf like the ones I used to wear. I knew that she was there for chemotherapy, and had no other choice but to be there. She defined the word" brave", in my opinion. I waited for her to get finished and head the other way into the waiting room before I walked past her. She was wearing a mask, she looked rather frail, and I can not stop thinking about her. It was hard enough getting chemotherapy when that was the only " devil" one had to fear. I am wishing her well...

Monday, May 4, 2020

Cancerversaries in the time of Covid-19- and I have two cancerversaries this month

The month of May is sort of like New Years Eve for me. I will celebrate two cancerversaries this month. I will be a ten year thyroid/parathyroid survivor on May 19th, and a five year breast cancer survivor on May 22nd. So in the month of May, I reflect upon the year that I had, all that I have to be thankful for, and what changes that I may  need to make ( perhaps  like New Years resolutions, I suppose.) One thing that I am always thankful for is the love and support that I have received and continue to receive  from my family and friends. I am a stronger person now than I could ever have imagined I would be ten years ago. I fully recognize the fact that I would not have been able to get through the diagnoses and treatments without my family and friends beside me.

Just hearing the words " You have cancer" is something very hard to explain. I suppose the first thought going on in one's head, is " Oh, no, there must be some terrible mistake!".  Denial, anger, disbelief are just some of the emotions that I personally felt during the first few days after my diagnoses. But after a few days of feeling sorry for myself, I researched my cancers, and tried to come up with a plan of action. Some people feel better not knowing too much about their health. I am in the category of people who research, try to get all the facts that I can gather, then come up with a course of action. I want to be in control of my health and information is a powerful tool, in my opinion.

A person who is facing  serious health issues has to become their own best patient advocate. I will give you two examples. First, when I realized that something was very wrong concerning my thyroid ( extreme fatigue being the most worrisome symptom) I changed doctors. My "old" doctor just kept telling me that it was stress and he did not order any additional tests. It took me a while, but I found a wonderful doctor who DID believe me, order tests, and well, the rest is history. I hate to think what may have happened had I not stood up for myself.

The second example, and one that I think about a lot, actually, came during my treatment for breast cancer. Two different radiologists, one who did the mammogram and resulting ultrasound, and the other radiologist who did my first biopsy, remarked that in addition to my tumors,  another area in my breast tissue looked " suspicious". They did not recommend doing anything further, and I accepted that. Thank God that the third radiologist, the one who was preparing me for surgery ( a lumpectomy) looked at my X-ray  and said, " Wait a minute! This area looks very suspicious. I would like to cancel the lumpectomy and do a core biopsy instead." The surgeon was pacing, the OR was calling- several times in fact- for me to be sent up for surgery. I had a few seconds to make a decision. Even though I had just met this radiologist, I trusted her completely. She told me that she treats her patients like family, and she had to do what she thought was  best for her patients. She said that she had to be able to  sleep at night. I cancelled the surgery and had the core biopsy. The second area was indeed a separate cancer, and a few days later, I ended up back in the surgeon's office discussing my new plan of attack- which was changed to bilateral mastectomies and chemotherapy. I am still so very grateful to this radiologist. I talked to her later and  expressed my gratitude and appreciation.

I am taking extra precautions during this time of the Covid-19 pandemic. Some of the reason is that I know that I have a lowered immune system due to the two cancers that I have had. But another reason for my cautious behavior is the fact that I realize that life is so very precious. I know what it is like to be seriously ill and to  feel helpless. The fact is that we all need to do our part to keep our family, friends and ourselves safe during this time. It is difficult for everyone. I miss my grandchildren and children so very much. My husband and I are fortunate that our son and his family live close enough that we can have " yard visits". We talk, watch the grandchildren play, but we do not get closer than the recommended six feet. Unfortunately, my daughter and her family live over 4 hours away, so we can only have " virtual visits". I really appreciate this technology, but I will be overjoyed when the day comes when I can really visit my children and grandchildren and get much needed hugs and kisses.

So, my cancerversaries this May come with added challenges. Even though I have some PTSD when I go for my checkups, those checkups have been postponed until later this year. That does give me pause- but I will just have to wait until it is safe to be in a doctor's office. Of course, if I were having any symptoms that made me feel concerned, I would go in for those checkups sooner. So far, so good.

This May, I will count my many blessings. I am grateful for another year that I get to spend, even virtually, with my family and friends. I appreciate good doctors and good health. I have certain challenges, but I am thankful to still be here. Thank you to those who read this blog. I hope that I have been able, and will be able, to provide good information for people who might be going through some health issues similar to mine. I do like helping people through health education and shared experiences.  Writing this blog has also been therapeutic for me. Putting my thoughts down on "paper" helps me deal with my cancers.

And since my cancerverseries are so close together, I always  have one big celebration. This year, it will be a little quieter. Just my husband and I will celebrate. But there will be cake! Always cake- and chocolate cake at that. I hope that everyone will be safe and well during this time.

Sunday, April 19, 2020

Rescheduling doctors appointments and self care during the pandemic

I have written blogs in the past about the anxiety that I felt when I had to go to my cancer checkup appointments. On May 19th, I will be a ten year thyroid/parathyroid cancer survivor. On May 22nd, I will be a five year breast cancer survivor. I had an appointment scheduled this month for my " big thyroid cancer" checkup. My endocrinologist was going to do blood work, an ultrasound of my neck bed and throat, as well as an office visit. I have not had an ultrasound in a year- my endocrinologist was ordering these every six months, due to the aggressive nature of my thyroid cancer. However, while I still was seeing my doctor every six months for blood work and an office visit, at my last office visit, she moved the ultrasounds out to once a year. I called my endocrinologist's office, and have rescheduled the appointments for October ( hopefully). I will have to admit, that while I had quite a bit of anxiety before my checkups, I did appreciate the excellent care that I have been receiving from my doctor.

I have also been seeing my oncologist, who follows my breast cancer, once yearly, for blood work and an office visit . Last year, I saw him in early August. I have not heard from his office so far. I am not really a fan of how his office schedules appointments- they just send their  patients a letter, about two weeks before the appointment, with the appointment date. So, I am not really sure about when I will be getting a follow up appointment for my breast cancer checkup. My oncologist's office is huge. There is a massive waiting room, rooms for office visits, two labs for blood work, and a large room with a nurses station for chemotherapy treatments. I had my chemotherapy treatments in this office complex. It seems like yesterday, and not almost five years ago ( I finished my chemotherapy in August, 2015), that I was waiting in the office for my treatments. In fact, and I have mentioned this before,that the smell of the bacterial hand soap they use  in the office still makes me nauseous. The thought of going into the office, surrounded by so many immunosuppressed patients makes me anxious. I do not worry about my safety as much as I worry about theirs. Right after I started my chemotherapy, my white blood cell count dropped dramatically. My oncologist prescribed an antibiotic for me, and told me to practice " social distancing". My heart goes out to those receiving chemotherapy now- one has enough to worry about with the cancer and the chemotherapy drugs, much less adding the Covid-19 to the list.

So now, I seem to be a bit anxious about NOT getting my checkups. I will admit that I am the type of person who " needs to know" versus the type of person who feels that " no news is good news." If I can just have the facts, I can make a plan of action, and that makes me feel better- more in control of the situation. I realize that one can only be in control of a disease just so much. And that brings me to the topic of self care. Self care is something that everyone can do. Paying attention to any unusual symptoms and getting in touch, by phone or computer, with one's doctor if there are unusual things happening in your body is an important first step. I for one, think that people can have a sixth sense, so to speak, when something is wrong. Go with " your gut" as the saying goes, and contact your doctor if things seem off.

There are several self care elements that bear repeating. Getting enough rest is key to feeling better- both mentally and physically. This has been hard for me, I will admit. I struggle with anxiety issues, and night time seems to be the worst. I have implemented a few rules for myself, which while far from perfect, seem to help a bit. For one thing, I cut off social media before supper time. Yes, I like to stay informed, but I have a saturation point when it comes to Covid-19 information. I do not want to hear about how many people died or were infected today, how young the persons were who died, etc. right before I go to sleep.I have always been an avid reader, so I have been reading even more now, and trying to limit my TV time in general. Getting outside for a walk really makes a big difference for me. I am very fortunate to live in the country, a very rural part, so social distancing for me means avoiding the deer, bear, coyotes, etc. Taking a walk outside, even a short one, has been good for my mental and physical health.

Eating good food is also important. Of course, getting fresh fruits and vegetables has been a bit of a challenge. My husband and I have to work up our courage to go out to the grocery store. We have been wearing masks and gloves for a little while now, and try to practice social distancing- this time with people, not with the animals mentioned above. One can also get a little vitamin D outside in the sunshine. I take a prescription vitamin D because my levels have been low for a while. As far as vitamin supplements go, I recommend that you ask your physician. While I personally feel that some vitamin supplementation would be helpful for some people, there is also the chance of overdoing this.Just because something says that it is " all natural" does not mean that in excess, it can not be harmful. This is a whole other blog, so I will get off of this soapbox for now.

I have been keeping a journal of everyday " happy" events that make me stop to think about and  appreciate my life now- even in isolation. Seeing the first butterfly, the first hummingbird, hearing the whip-poor-will sing for the first time this year, have been topics in my journal. I know that these happy events will be different for everyone, but it really does help one appreciate life- even though we face major changes. I hope that one day my children/grandchildren can look back on my journal and see that things were not all bad during his pandemic. Simple joys, simple acts of kindness still happened.

Self care is the primary thing that we can do for ourselves right now. Rechecks on our health may have to wait a while. And perhaps, I will be less anxious when I finally get to go back for my appointments.

Thursday, March 26, 2020

Isolation behavior after I-131 administration and Isolation during the Covid-19 pandemic

My husband and I have been in self imposed, you might say, isolation during the Covid-19 pandemic. During this isolation, my thoughts have returned to the time, about nine years ago, when I was in strict quarantine after I had my treatment dose of radioactive iodine ( RAI, or I-131) for thyroid cancer. Of course there are a lot of differences, such as my quarantine after the I-131 dose had a predetermined ending, unlike the pandemic we are all facing today. There are some things that are similar, though. I have found myself thinking about my quarantine after the I-131, which is something that I have not thought about too much until now. I would like to share some of the things that I did, and thought about during that time. I want to mention here that this experience is different for every thyroid cancer patient who receives a treatment dose of the I-131 after surgery. The guidelines as to dietary restrictions before and after the dose  are still pretty much the same, but quarantine time and protocol seem to have changed in the almost nine years since I got my orders. And just so you know, would I still have  gotten the I-131 dose knowing that I would have breast cancer five years later, and salivary gland stones/issues as an on ongoing issue following my  treatment? Well, the answer is yes. In my case, my doctors and I felt the RAI dose was warranted- considering the aggressive nature of my thyroid cancer. What I WOULD have done,had I  had access to a crystal ball, would have been to try to get the radiologist to administer a lower dose. From the studies that I have read currently, the chance of complications from the I-131 seem to occur when the dose goes over 150 millicurries. My dose was 155 millicuries.

My radiologist told me to start my low iodine diet two weeks before my I-131 treatment. I was also to stay on the diet for 48 hours after the administration of the RAI. Due to multiple food allergies, caused by my cancer ( according to the information that I received from my allergist) I was used to being on a limited diet. I have read that some people " cheat" or are tempted to, while on the diet. The diet is very restricted, and I purchased a very good book, " The Low Iodine Cookbook" by Norene Gilletz, to help me with food choices. I should also add that one can go to the website for information and recipes.I was way too scared to cheat! I felt that I would be cheating myself ( what if the cancer returned?) and whatever food I was lusting about would just not be worth it in the long run.

I will list some of the things that I did prior to isolation, and I was fortunate that we live in a two story house so that I could occupy the top floor, while my husband stayed on the ground floor. I purchased disposable eating utensils, a plastic mattress cover for the bed upstairs, along with sheets, towels, and even an outfit or two of clothes that would all be discarded after my isolation time was over. I had a small refrigerator upstairs that I stocked with sour lemonade and water. I had disposable gloves that I wore when I came downstairs( when my husband was away at work) and plastic bags that I used to cover the couch or chair that I used. I purchased trial size shampoo, toothpaste,etc. items that could be thrown away. I made a large batch of LID granola and blueberry muffins ( so good that I use the same recipe today!). Luckily, my husband is a very good cook. He prepared our supper, put mine on the bottom of the steps and ran like hell while I retrieved the food. Actually, my husband sat in the dining room, and I sat at the top of the stairs so that we could " dine together."

I had to drive myself over to the hospital ( an hour away) get my I-131 dose. My husband was not allowed to be in the car with me, because the radiologist said that I had about an hour before I was technically " radioactive" and a danger to others.  When I got to the hospital, I was placed in a small room and given a bottle of water. The radiology technician came into the room, dressed in full Hazmat gear- mask, gloves, suit- the works, and set a small lead lined container down on the table in front of me. She said to swallow the capsule( about the size of a tylenol gel cap) as fast as I could. I was not to let it linger in my mouth before swallowing it. She said to wait until she had left the room before I opened the box. Wow. The medicine was in a small vial in the middle of the lead lined container. I left the hospital and made my way home as quickly as possible ( remember, I only had an hour before I "lit up".)  I had to make it quickly up the stairs to my isolation room. My radiologist also told me not to go outside for two days. I joked and said, " What, will the birds fall dead out of the trees?" He did not laugh. Either my joke was not funny or it was true...

Another challenge for me was the fact that I had to return to the hospital in two days to get a blood test for thyroglobulins. I was told to ask the medical technician who would be drawing my blood if she was pregnant. I was also told to stay AT LEAST six feet away from anyone else in the hospital. ( Does this  sound familiar?). I met a person from housekeeping in the long winding hall to the lab. I backed up near the wall, not too near as I feared I would leave a radioactive trail. But  by the expression on the face of  the man from housekeeping, he must have thought that I was an escapee from the locked psychiatric ward. I made it to the lab, and I was hoping for an older person or a man who would be drawing my blood sample. The medical technician was a young woman of childbearing age. Before I sat down I blurted out : " ARE YOU PREGNANT??" She subconsciously smoothed down her scrub top and said, " Well, no. I have a four year old and have not lost my pregnancy weight yet." Great job, I thought. You have just pissed off a person coming at you  with a very large needle. I quickly explained that I had been told to ask that question for her safety, and since I thought she was certainly young enough to be of childbearing age, I had to ask the question. I am not sure who was more relieved to hear that explanation, but she ended up thanking me for being concerned for her safety.

The first day of my isolation was the most difficult. I was sick from the I-131- nausea, throat soreness, both of my arms turned red and hot for a few days ( not sure about that weird side effect) but I was lonely and scared most of all. Fear of the unknown. Wanting a hug from my husband, but knowing that it would not be possible. Not being able to see my children. Not being able to be around my dog or cat. My pets certainly did not understand the reason for that, but I followed the instructions that the radiologist gave me. By the end of the two weeks, I had adjusted somewhat. I could take a walk outside after the two days were up ( the birds were safe,ha)- just not with my husband or my dog. But as I said, my isolation had an end. And there was a celebration afterwards- dinner with my family, and lots of hugs all around.

This time, there is no set end to social distancing, self isolation, quarantine- whatever method one is having to follow. I am extremely lucky to have my husband with me. I have my dogs for walks and hugs. I think that the people I feel most sorry for are the people who are in isolation alone. Loneliness is probably the worst, followed by fear that perhaps a loved one or you yourself may contract the Covid-19. Let me mention here that we as thyroid cancer patients probably have a weaker immune system ( just my opinion) and should be extra careful about exposure.This virus has changed the way we live now, and probably will greatly impact how we do things going forward. I have practiced gratitude in my life since I have had cancer. I try not to take anything for granted. I appreciate loved ones, and I take solace in nature. Please stay safe and well everyone.

Saturday, February 22, 2020

Change of plans... AKA, the sialendoscopy that did not happen.

As I said in my last blog, I was scheduled for a sialendoscopy on February 20th. About a week before this procedure was to occur, the salivary stone passed and my submandibular gland , while still enlarged, returned to almost normal. Let me say that I really like my ENT cancer head and neck surgeon. He has wonderful reviews/credentials, and if I ever have to have salivary gland surgery, he would be my choice- hands down. However, the sialendoscopy is not without risks, even though the risks are small. Possible damage to my facial nerve being probably the most serious, in my opinion. Of course, sometimes the procedure is more beneficial than the risks. Dr. Hackman told me that I could have the procedure done, if I chose to,  and it should clear out the stone and perhaps help with the moderate scarring that I have in my salivary glands. This scarring was caused by the RAI, as I pointed out in my last blog. I did not know, until Dr. Hackman informed me, that the salivary gland tissues also gobble up RAI. Breast tissue also takes up a little radioactive Iodine, as well. Of course, the main consumer of the RAI is thyroid/thyroid cancer cells and that is desirable- one wants them dead!

I talked with Dr. Hackman's nurse, and the doctor wants me to come back for a follow up in a year. I feel so relieved that he did not see any cysts or tumors on the ultrasound that he did in the office last month. The RAI can cause cancerous tumors in the salivary glands. That is not the only cause of the cancer, but doses over 150 milicuries, seem to cause more problems. My dose was 155 milicuries.(!)

I will continue with my self care, which includes drinking sour lemonade almost every day, and using warm compresses, massage and finally ibuprofen ( when the pain gets intense) when the stone(s) develop. Salivary gland cancers, or other oral cancers, are serious business. I appreciate good health care and am so thankful to have found an amazing physician. Be proactive- take care of yourself, and watch for early signs of salivary disorders. The first time that I passed a stone, and I have passed many over the past 9 years, I did not know what was happening to me! No one had prepared me for what to be looking for or what might happen.

I will recount my first salivary stone, in the hopes of perhaps preparing others for what might occur. I was at work ( of course). I had been noticing that my upper jaw/ face area had been a little sore that day. Some people that I worked with told me that my jaw was swollen. I actually had a lump or knot on the side of my face.  I was hoping that it was a dental problem. I went to see my dentist first thing on Monday ( of course this happened on a weekend!) and after an exam and x-ray, he said that it was not a dental issue, but that he thought it might be a parotid stone. My dentist referred me to another ENT ( not Dr. Hackman) who confirmed the diagnosis. This ENT told me about the sour lemonade, warm compresses,etc, that I still do today when I have a stone form. He forgot to tell me what passing the stone would be like.

There are three types of salivary glands: Parotid, Submandibular, and Sublingual. The submandibular glands are located at the floor of the mouth. The majority of stones are of this type. The Parotid glands are on the inside of the cheeks, and the sublingual glands are under the tongue.  The parotid and submandibular  stones that I had sort of burst, and my mouth filled up with what seemed like very salty water.(YUCK). The  sublingual  stones that I have passed look like a grain of rice, and passed under my tongue with gentle pressure on the gland. (BIG YUCK). Relief, when the stone passes, is instantaneous. Compared to a kidney stone( I have had one of those,too), salivary stones are somewhat  painful but not nearly as painful as a kidney stone. Sometimes one needs help passing a stone. That is where the sialendoscopy procedure comes in. This procedure can help remove a larger stone, as well as helping to clear out some scar tissue which may be present in the salivary glands. So far, I have not needed to have this procedure done, but I might at some point. I have been having extreme dry mouth, and Dr. Hackman said that the sialendoscopy might help with that. It is very, very important to drink lots and lots of water if one has salivary stone issues.

I hope that the information, as it applies to me, is of some help to others who may be struggling with salivary stones. And for the record, in my case- stage 3, aggressive follicular variant and papillary thyroid cancer, I would have the RAI treatment after surgery again. The only thing that I would try to do differently,  would be to  discuss the dose with the radiologist . I would have liked to stay around 100 milicuries, if possible. Hindsight is always 20/20 though...

Thursday, January 23, 2020

Radioactive I-131 treatment for thyroid cancer and the salivary glands

For the past, almost nine years, I have struggled with dry mouth, swollen ( what I thought were lymph nodes until recently) submandibular salivary glands, pain upon eating certain foods, and some changes in how food tastes.These symptoms started about 7 months after I received a large dose of RAI( radioactive I-131) for my thyroid cancer. Each person is different, but the recommendation for most thyroid cancer patients is to receive a dose of RAI after surgery. The reason for this is that in papillary and/or follicular thyroid cancer, RAI can " seek out and kill" any remaining thyroid cancer cells that have managed to escape the surgeon's knife. According to the information that I received from my doctor, the only two types of cells that take up RAI,  are thyroid cells( both cancerous and non-cancerous) and salivary gland cells. According to an article in the American Thyroid Association, " Clinical Thyroidology for the Public, volume 11, issue 5, from May, 2018" while salivary cells will pick up the I-131, they will not store it in the cells like thyroid(cancer) cells will. So the plan is for the RAI to kill any rogue thyroid cancer cells, while leaving the salivary gland cells alone. For some people, like me unfortunately, that was  not quite the case.

In this above stated article,  dosing RAI patients with selenium (an antioxidant, that can provide some help with side effects from radiation in other cancers) may have promise in protecting the salivary glands from the harmful effects of RAI. Of course, the article goes on to say that more studies need to be conducted before selenium can be proven to be of help in protecting the salivary glands. The article did not state the dosage of selenium that is supposed to be effective. I was not aware of this fact back in 2010, when I received my huge RAI dose. And certainly anyone who is considering using selenium should discuss this with their doctor.

Speaking of huge doses of RAI, in the same publication, Volume 6, issue 5, pages 8 through 9, the American Thyroid Association states that  a study of 213 thyroid cancer patients receiving various doses of RAI was conducted. Salivary gland issues seem to be dependent on the dose of the RAI given. Of those patients who received 100 mCi ( millicurie) of the RAI only about 7.8% experienced salivary gland issues. At 150 mCi , that percentage jumped to almost 18%. For the record, my RAI dose was 155 mCi.

Those are some facts. Now what? RAI is a necessary tool for most patients to kill off the rogue thyroid cancer cells, as I stated above. This is an important decision that must be carefully considered by thyroid cancer patients and their doctor. Does one want a recurrence of the thyroid cancer? Of course not. But I think the key here is to use a dose of the RAI that will be effective, and cause as few side effects ( especially salivary gland issues) as possible.

I had an appointment with a ENT head and neck/cancer surgeon this week. This doctor was recommended to me by a person in a salivary gland group. I first went to see my family doctor, and he agreed with me that my neck was swollen ( he thought that it was a lymph gland issue,too). I also have a " lump" in my jaw area. In the past, I have had salivary stones and they have gone away with the self care that I was taught to use. In case you would like to know what I used in the past, it was : warm compresses, drinking sour lemonade as well as lots of water, and when this did not seem to work, I would take some ibuprofen. This time though, the swelling and lump did not go away. For a few months, I have worried that 1) the thyroid cancer had returned in my neck area or 2) I had some sort of salivary gland cancer or 3) I had some other type of cancer. Since I am a two time cancer survivor ( papillary with follicular variant in 2010 and invasive lobular breast cancer in 2015) it was not such a stretch to imagine that I might have something else going on.

The ENT head and neck surgeon did an ultrasound and did not see any " suspicious" looking tumors or whatever but did see " moderate" damage to my submandibular salivary glands. He suggested, and I agreed, that I have a sialendoscopy procedure done to look at the damage, and hopefully clear up some of the blockage. I really, really like this doctor. He is only one of two doctors in my state that do the sialendoscopy without general anesthesia. He will be using lidocaine to numb the areas as he goes along. I will be able to describe the procedure in more detail after I have it done at the end of next month.

As you might guess, it is of the UPMOST importance to choose an ENT/head and neck surgeon who has done this procedure successfully many times. Check, check and recheck reviews of the surgeon whom you want to do this procedure. And I think that it is important that a patient feel comfortable with the surgeon- that he/she will answer any questions that the patient might have. My surgeon told me that as far as " how much this would hurt" this is on the dental procedure pain level. That brings up another issue. My surgeon told me to be sure that I was up to date with my dental cleanings and checkups. Unfortunately, RAI can damage the teeth, due to dry mouth and salivary gland issues.

I am very thankful that, unless something turns up during the sialendoscopy procedure, I do not have a salivary gland tumor. Am I looking forward to the procedure? NO. But I do have confidence in my surgeon, and I am hoping that I will get some relief from my symptoms. According to what I have read, in my case ( RAI induced salivary gland damage), there is anywhere from a 65 to 85% chance of success with this procedure.  Results blog next month...

Thursday, November 14, 2019

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...

Sunday, October 20, 2019

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.

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.

Wednesday, September 11, 2019

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...