Friday, January 11, 2019

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.


Wednesday, December 12, 2018

When life gives you lemons,.... throw yourself a lemonade party.

I am a firm believer in the power of positive thinking.  Being a two time cancer survivor, I guess you could say that I have had lemons twice in my life. I will admit that at first, when I received my diagnosis-eight years ago for  my thyroid cancer, and then five years later, my breast cancer diagnosis, I was not interested in making lemonade. I was angry, depressed, sad, confused- among other things. I took a little time  to feel sorry for myself- to grieve for the changes and losses that my body would be suffering.

I think that when there is a diagnosis of cancer,  most everyone sort of goes into a state of " auto pilot". There are doctors appointments ( of which I still have a plethora of), critical decisions concerning  surgery and treatment, and what I like to call the mechanics of cancer. During this phase,  the focus of one's life is mainly on what needs to be done to get rid of the cancer and hopefully make the body healthy again. A cancer patient must make a treatment plan in association with  medical professionals to hopefully procure the best outcome. This is phase one, I think. In some ways, I think it is the easiest part of dealing with cancer. Sure, this is a critical phase. But just like when you take your car in to be serviced, you are trusting the professionals to do their job. One should research the doctors, other health professionals, the hospitals, and so forth. But at some point, the patient has to step aside, so to speak, and let the process of dealing with the physical side of cancer take it's course.

Phase two just might be the most difficult part- it has been for me. In this phase, the medical decisions have been made. Hopefully they have been good decisions, and the process of healing the body is well on its way. Now the cancer patient must deal with the many after effects of treatment-  life changes in the  body and mind. Cancer patients are changed forever. There is no going back to what our life was like before cancer. Friends and family would like for us to put our cancer(s) behind us and behave like nothing has happened. I am not one to dwell on the negative aspects of cancer, but I feel like sometimes cancer patients get the least amount of support after the diagnosis and medical treatment phase is over.

What I have had to do now, so that I can function in life, basically,  has been to make positive life choices, I like to call them. Sure, I have tests and doctors appointments to deal with. There is tremendous stress with " testing anxiety" and the thoughts of recurrence. I mean, having had cancer once or twice, what is to say that it can not happen again? I really try not to dwell on this line of thinking. Yes, of course, it is natural to worry about your health, and how it has impacted yourself, your family, your friends- your loved ones. But everyone should have a life strategy going forward.

It is a proven fact that how a person thinks affects their mood and their  quality of life. Given the fact that I am, for the most part, a " Pollyanna" sort of person, I have chosen to be as positive as I can be about my life going forward. I have made several choices on how I choose to live my life now. I think that this also puts cancer patients in the drivers seat for a change. So much of our lives, in phase one, have been out of our control. It is nice to be able to be in charge of what we do, and really how we feel, going forward. I will give you some examples of what I am doing differently now. This really varies from person to person, and what is right for me is not necessarily right for anyone else. But, here are a few things that I decided to do FOR ME.

 Change number one: I retired earlier than I had planned. It was only a couple of years earlier, but I now have quality time with my husband, children and grandchildren. I am able to attend events that often I could not due to conflicts with my work schedule. I have also been able to do some crafts that I actually love to do, along with other hobbies that I previously did not have time for.

Change number two: I am taking better care of myself. I have changed my diet, and managed to lose eighteen pounds, which makes it easier for me to do the things that make me happy- which include playing with my grandchildren, walking, and just feeling better about my appearance. When a person goes through major surgeries, your body image can change. It can be devastating to have something like bilateral mastectomies to deal with. Anything that you can do to improve your overall body image will affect your outlook on life- believe me. It is not vanity, it is survival, in my opinion.

Change number three: this is probably the most important change that I have made . It  is the practice of  gratitude. Being grateful every single day for one's  life. I never take life  for granted anymore. I appreciate all of the time that I have with my family and friends. I am grateful for many things, and just this acknowledgment, has made me a happier person. I have found that by thinking happy, I am happy. Not to say that I do not have any depressed days, but the practice of showing gratitude has tipped the scales in my life to having a happier, more productive, more enjoyable life.

There are no guarantees in life. Who gets lemons and who does not is not something that I concern myself with. I wish happy days for everyone. But if you do happen to get a bunch of lemons, throw yourself a lemonade party. And be sure to invite me- I will help you celebrate!

Friday, November 23, 2018

Hungry to feel better, or is there a gluten sensitivity and hypothyroid disease link?

 For a few years now, I have heard the buzz about the possible connection between having celiac disease and being hypothyroid- specifically, having autoimmune thyroid disease( Hasimotos). The facts about celiac's disease and thyroid disease are as follows: there is a genetic link between many autoimmune diseases; celiac disease and hasimotos are both autoimmune diseases, and a person may have both.

 Lately, I have heard that there might be a possible connection between hypothyroidism and being gluten sensitive. One who is gluten sensitive, perhaps, does not test positive for celiac's disease, yet that person may exhibit some of the same symptoms as a person with confirmed celiac's disease. There are no standard tests for gluten sensitivity as yet. One possible way to suspect that one is gluten sensitive  is to eliminate gluten from the diet ( for at least a week or so ) and note how one is feeling. Some of the common symptoms of non-celiac gluten sensitivity are:

*bloating, gas, abdominal pain
*diarrhea or constipation
*brain fog
*joint pain

An article that I read on gluten sensitivity suggested that after the process of eliminating gluten foods, and noting how one feels, one might then add gluten back to the diet and see if any previous symptoms return. The article, as well as I , urge anyone who tries to eliminate gluten from their diet to do so in conjunction with the advice of their physician. GI diseases and symptoms can be tricky, and you want to make sure that you are dealing with the correct disorder/problem. 

A disorder that goes along with gluten sensitivity is called " leaky gut", and has to do with how our small intestines react to a substance found in gluten. Normally, our intestines become permeable so that nutrients may be exchanged. Ideally, the permeability will be temporary. Gluten containing foods may cause this permeability to be extended- toxins, microbes and other substances are then " leaked"- thus the name leaky gut, into the bloodstream. From this leakage, the immune system is stimulated to work overtime. Chronic inflammation may occur as well as the development of autoimmune diseases. Leaky gut can also be caused by yeast overgrowth ( think over use of antibiotics, for one thing), steroid use, birth control pills, as well as stress. ( what chronic disease is NOT influenced by the amount of stress people have in their lives?!). Here is a newsflash though, new research shows that using Roundup weed killer ( Glyphosate) on the wheat is also a major factor in having leaky gut and gluten sensitivity.

Now that I have explained a little about gluten sensitivity and leaky gut, I will now tell you why it matters to me. After months of speculation, and a few doctors appointments to rule out other disorders, I decided to eliminate gluten products from my diet for two weeks to see if anything improved. Guess what- IT DID! The symptoms that I have listed above either went away, or were greatly improved. I sure wish I could say that my brain fog disappeared, but I still blame that on my chemotherapy. Besides feeling better, I have lost 13 pounds, and hope to lose a few more. I wish that I could say that I will never eat gluten again, but that is not the case. Were I to have celiac's disease, I would certainly have to completely eliminate gluten because there are serious consequences if one does otherwise. But being gluten sensitive, I will try hard to eliminate most of the gluten. There will be times- now especially, during the holidays, when I will have some gluten containing foods. I am just going to be mindful of what I will be eating, as well as the consequences concerning how I will be feeling.

One side note: I did read a statement published on the "Gluten Intolerance Group" website that stated that "....being on the gluten free diet allows the small intestine to heal, and thyroid medication may be better absorbed." This is just a theory, and is not, as yet, backed up by any scientific studies, but is interesting to note.

The concept of being gluten sensitive and having  thyroid disorders may be a difficult one to address during the holidays! But I feel that it is an important subject to consider. After all, cancer patient or not, everyone hungers to feel better. 

Tuesday, November 6, 2018

Is there a connection between my sulfite allergy, and the development of my thyroid and breast cancer?

This is a question that I have been pondering over for quite some time. I have researched this topic- the possible connection between having certain  allergies and having some type of cancer- but I can not find a definitive study that will answer this question. When I was first diagnosed with sulfite allergy, in about 2004, it really took some rather intense  sleuthing to discover what was making me have anaphylactic  reactions several times a week. I was fortunate to find an excellent allergist, and the process involved  eliminating and adding foods and using a food diary to come to a conclusion. There is no real treatment for this. I just have to practice avoidance of any foods that might contain sulfite preservatives. And believe me, the list is much shorter if I chose to write down all foods that do NOT contain sulfite preservatives. Another consideration is medications( there are more than 1,000 medications that contain sulfites) along with some  topical creams and ointments, and cosmetics. In addition to "plain" sulfites, these preservatives are also listed as bisulfites, metabisulfites, and sulfur dioxide. If one is allergic, or just sensitive to sulfites, be sure to check all of the ways sulfites may be listed on a product. And, a manufacturer is only required to list any sulfite preservatives if they are in excess of 10 parts per million. For a complete list of foods, and how much sulfite preservatives that they contain ( in parts per million) you can go to VeryWell Health, and look under " Sulfite allergy Overview and foods to avoid."

In one of my theories, and this is merely my opinion,  perhaps my immune system was so compromised trying to fight off my thyroid cancer that I developed an usually intense reaction to sulfite preservatives, and sulfite containing food and products. My surgeon said that I had had thyroid cancer for  a long time before it was diagnosed. My allergist told me, about six months before my thyroid cancer was diagnosed, that she felt that I had cancer in my body somewhere. Imagine being told that! But she was correct; as I said, about six months later my thyroid cancer was diagnosed and the rest is history, I guess you could say. I asked my allergist, right after my thyroid cancer surgery and treatment, if my anaphylactic reactions to sulfites would go away and she said unfortunately, no. Once those allergy pathways have been established, they are usually permanent.

Of course, if a person has seasonal allergies, or allergic to cats or whatever, this does not mean that this person has cancer! But if a person is having anaphylactic reactions on a fairly regular basis, it would be a good idea to have a general check up, to make sure that there is nothing else going on. And I am speaking mostly about adults here- not children, who may  sometimes have serious allergies to foods, but may outgrow them later on in life.

An interesting fact that I read in an article on PLOS ONE, published online on October 18, 2017, Bok-Luel Lee, Editor, in association with the University of Hawaii Maui College, Kahului, Hawaii, stated that " Sulfites inhibit the growth of four species of beneficial gut bacteria at concentrations regarded as safe for food." The conclusion the researchers came to by their experiments with sulfite preservatives on gut bacteria is as follows: " ...these preservatives may be altering the gut and/or mouth microbiome. Therefore, it would be worth further examination as a possible contributor to diseases related to a dysbiotic human microbiota." To translate, ha, this means a microbial imbalance.
Or to explain further, in a compelling theory proposed by Michael Pollan and Ruth Reichl, " It is very possible that the master key to unlocking chronic disease will turn out to be the health and composition of the microbiota in your gut."  I think that this is a plausible theory, and one that warrants further research.

As for me, I do think there is some kind of connection between my sulfite allergy and the development of my cancers. Which came first- the allergy or the cancer, and  what that connection was may not be discovered for some time. Personally, I would like to know so that I could pass it along, and ideally help others have better health. Until then, I can only say, " Greek yogurt, anyone?" Or perhaps adding an oral probiotic would not hurt.

Tuesday, October 9, 2018

My thoughts on having had breast cancer.... it is more than just pink.

I usually write about thyroid cancer, but as I have said before, this is a "2 fer" blog, so today, I will write about breast cancer. I decided to write a blog on this  because this is national breast cancer month and also because it helps me to write about my feelings, and hopefully, what I have to say will help others,too. Let me say that while I appreciate all of the " pink" and well wishes from others, there is so much more to breast cancer than anyone other than a breast cancer survivor could imagine.

I am a three year breast cancer " survivor." I use that word loosely, because frankly my life has changed forever. Most people think that after a person who has had breast cancer has survived a year or two, we should be able to put this behind us and move on. While I am grateful beyond measure for the love and support that I have received from my family and friends- especially during my surgery and chemotherapy- this " thing that happened to me" is forever a part of me. I now deal with issues, both large and small, on a daily basis. Will this shirt fit ? ( translation: will it have a gap in the top), will I ever be able to find a bra that fits and is comfortable? ( after three years, I finally have found one) and the uncomfortable and worrisome thought of getting hit in the chest by someone, accidentally of course, or perhaps getting burned or having frost bite on my chest( I am numb most places on  my chest, and my plastic surgeon warned me about heating pads causing burns and ice packs causing frost bite). It is sort of humorous, but cooking and leaning over a hot burner gives me pause.

Of course, the bigger issue that every person who has had breast cancer worries about ( or people who have had  other cancers for that matter) is the fear of recurrence. I have my twice yearly  breast cancer check up next month and while I dread it, I also realize that afterwards, if everything turns out well, I can relax for a while. I have mentioned in previous blogs that the smell of the hand soap in the oncologists office makes me nauseous. It is the spark that lights the fire of flashbacks for me, I suppose.

One of the most traumatic memories for me, one that is seared in my brain for eternity, to be dramatic, is when my plastic surgeon made his final visit in the hospital before my surgery. I was sitting on the edge of the hospital bed, IV in place," beautiful "hospital gown on, and my husband had just stepped out of the room. My plastic surgeon came in and asked me to take my hospital gown down. He had a black sharpie in his hand, and proceeded to mark all over my chest- around both of my breasts. After weeks of preparation for this day- all of the tests, the doctor visits, talks with my family, reading up on the surgery and discussions with my breast cancer friends, it all  came down to this. The act of marking on my chest made it suddenly all too real. Yes, this is happening to me. Yes, I am losing my breasts. Some well meaning people told me " Oh, they are just breasts! You will get new ones, perky ones!" A word of advice to others, please, please do not say that to a breast cancer patient! My breasts were more than just mounds of tissue and blood vessels. My breasts lovingly nourished both of my children when they were babies. They were a big part of making me feel like a woman. Heck, they made it possible for some of my favorite shirts to fit nicely.

After my breasts were gone, I looked in the mirror and wondered " Who is that person looking back at me?" " Where do I go from here, what do I do now?" To be honest, I am still working on answering those questions. The 3D nipple and areola  tattoos that I had done by Vinnie Myers ( a saint in my book) have helped me tremendously. I really understand when I read about other women getting even more ornate tattoos to cover their mastectomy scars.  We have all lost something irreplaceable. But having the power to put something that we pick out, we control, back on our chests balances the scales a little.

I could never wear pink very well- it clashed with my red hair. But I do appreciate all of  the people that do so in support and honor of all of the people who have had or have breast cancer. But there is more to the story than just pink. And I am still working out the chapters.

Sunday, October 7, 2018

The HYPOthyroid and anxiety connection...

I think that most everyone knows about the connection between being HYPERthyroid and having anxiety. What seems to be not as well known, in the medical community especially, is the connection between having anxiety and being hypothyroid. I have been interested in this from a personal stand point, I will admit. I have had thyroid issues for years. For a long time, I went undiagnosed and untreated for thyroid disease, specifically, Hashimotos thyroiditis, which is an autoimmune condition. In Hashimotos , the thyroid gland is slowly attacked by the immune system, resulting in hypothyroid disease. What I did not know at the time of onset of my Hashimotos, was that my body was most likely experiencing surges of thyroid hormones that could cause a temporary hyperthyroid state. These surges of thyroid hormones can produce anxiety and depression. A patient can have one or both of these mood disorders. To be honest, I have never had true depression ( depression lasting days or not caused by a traumatic life event) but I have really struggled with anxiety issues.

Many doctors are pretty quick to prescribe antidepressants, and other medications for anxiety and/or depression. I am not going to discuss depression, except to say that if one has depression, it would be prudent to have a physician check TSH, T3, T4 and reverse T3 at least, in order to rule out thyroid disease that may be causing the depression. It may be that thyroid hormone supplementation could be enough to treat the depression. Or perhaps, treating the thyroid disorder with thyroid hormone could enable the prescriber to use a smaller dose of an antidepressant. There should be no stigma with having mental health issues, but if these disorders are caused by a thyroid function problem, it makes perfect sense to treat that first. Then if other medications are needed, those can be discussed a little later. I will mention that other therapies- talk therapy, exercise, meditation,etc. have been shown to improve depression and anxiety, so I think these are valuable options that should be explored before prescribing medications.

Back to anxiety. My endocrinologist, whom I really like, by the way, does not buy into the hypothyroid and anxiety connection. I have searched for medical articles on this subject, as well as talking to others who are hypothyroid and are having to deal with anxiety. The best article that I have found so far, is an article in the Indian Journal of Endocrinology and Metabolism, 2016, Jul-Aug; 468-474. This was a very small study, and the authors freely admit that because of the size of the study( 100 patients), their results could not be considered conclusive. Still, this study has given me some insight and I think some hope. This study also cited that females who were hypothyroid experienced anxiety more than males in the study. One thing is certain: thyroid hormone and thyroid  function affects the central nervous system throughout a patient's entire life. I will not get too technical here, but thyroid hormone affects the development and action of neurons, the release of serotonin,as well as activity in the brain. Exactly how  thyroid hormone affects brain activity is not yet understood. The fact that thyroid hormone does indeed affect brain activity seems to explain the problems in mood in hypo and hyper thyroid patients. One finding of this study hit a nerve with me. And it reads as follows: " Moreover, an early recognition of an endocrine condition will help minimize psychiatric morbidity and hence improve health ." The important words in this sentence, to me anyway, are EARLY RECOGNITION.

In my opinion, or if you watch public television, IN MY HUMBLE OPINION( IMHO), now that the connection between anxiety and being hypothyroid has been established, how is anxiety treated? Well, there are several medications that can be used. Remember, we are talking about anxiety here, not depression. For those people who have both, using an antidepressant medication along with proper thyroid replacement therapy and hopefully more holistic methods( as mentioned above) may be the answer. If a patient is having anxiety only, there are medications that may offer some help, but they come with several side effects. These are the benzodiazepines ( Valium, Xanax, Ativan,etc), and  beta blockers, to name a few. Holistic treatments mentioned above  may also help with anxiety. I think that knowing what may trigger an anxiety attack and taking action quickly to resolve the feeling of anxiety may be helpful. I did not say it would be easy, just that it  may be helpful.

If one has anxiety, I think that the take away from my blog is that thyroid function testing is a very necessary place to start. Early detection and treatment is  the key to better health. Be your own best patient advocate. If you feel that you have a thyroid problem and your physician will not do the necessary tests, seek another opinion. Keep your test records- they belong to you and you have a right to have copies of them. Keeping records enables you to see for yourself the changes in thyroid hormone levels from one year to the next. There is indeed a hypothyroid/ anxiety connection. Seek treatment and know that you are not alone. 

Wednesday, September 5, 2018

What are some of the possible causes of thyroid cancer? Is thyroid cancer being over-diagnosed and over-treated?

Thyroid cancer cases are on the rise. The National Cancer Institute estimates that there will be around 54,000 new  cases diagnosed in 2018. While this is not the largest  number of cases of a type of cancer, the rate at which thyroid cancer has increased since 1975 has tripled. Most sources agree that thyroid cancer is growing at the fastest rate of all types of cancer. Why? Who gets thyroid cancer? How is the best way to treat thyroid cancer?

Why  some people get thyroid cancer is not certain. While there are some heredity types of thyroid cancer, most thyroid cancer patients do not have a family history of the disease. That said, having a first degree relative ( parent, brother, sister or child ) who has had  thyroid cancer increases the risk of one having thyroid cancer.  In a percentage of patients with medullary thyroid cancer, an inherited abnormal gene is to blame. It might  be prudent if one has a family history of medullary thyroid cancer to have gene testing, although having the gene does not necessarily mean that this will definitely lead to the development of thyroid cancer. The following statements are  purely my thoughts on this, and it is just speculation on my part, but  I believe that even if one has the gene for thyroid cancer development, there has to be something in the person's environment to turn it on- to flip the switch for the development of thyroid cancer, so to speak. Whether this is exposure to a toxin in our environment,  too much radiation exposure as a child, or something else not yet discovered. There is much more that can be said about gene involvement in thyroid cancer. I am going to stop here, but the American Cancer Society has much  more information on this, if anyone is interested.

So what about the connection of radiation exposure as a child, and the development of thyroid cancer as an adult? A recent article in the publication, Clinical Thyroidology, discusses the results of twelve studies of people under the age of 20 who were  exposed to radiation. A significant number of these patients developed thyroid cancer. The average age of the exposure to radiation was 5 years old, and the average age of getting a thyroid cancer diagnosis was 41 years old. The following statistics give me pause: the increased risk of getting thyroid cancer after radiation exposure could occur in as few as 5 to 10 years after exposure.  BUT for some patients, the risk may persist for 50 years!

You may be wondering what types of radiation these children were exposed to, and why. Besides dental x-rays with no protective shielding of the thyroid gland, in the '50s, and '60s, children were sometimes treated with radiation for certain skin conditions or enlarged tonsils or adenoids. There were also certain  shoe stores that routinely used x-rays to measure a child's foot to get the proper sized shoe. Also, as you might expect, there are higher rates of thyroid cancer in adults who were exposed to radioactivity ( as children)  from the  Chernobyl accident. In the western parts of the United States, where nuclear weapons were tested in the '50s, there may be higher rates of thyroid cancer , but there are no definitive studies to cite as yet. Just something to consider...

Now for the " Who" in the equation of who is more likely to get thyroid cancer. Women, for reasons unknown, are three times more likely to have thyroid cancer than men. The risk factor for women having thyroid cancer peaks at the ages of 40 to 50, while in men, the age is 60 to 70. Anyone, at any age, can have thyroid cancer, though.

I recently read an article in the magazine, Cure, which asked the question " Is thyroid cancer being over diagnosed and over treated? I will quickly give you the 411 on the author's thoughts on this, and then I will tell you how I feel. Not everyone who has thyroid cancer opts for surgery. If the cancer is encapsulated, and the tumor is less than one centimeter, some people- with the advice and care of their physician- opt for " active surveillance". Active surveillance includes frequent ultrasounds, blood work and office visits. The ultrasounds usually occur every six months, on average. If it is found, by ultrasound, that the tumor(s) are growing, then the patient would have a partial or full thyroidectomy.

In full disclosure, I will tell you now that my tumors, plural, were unencapsulated, and had emptied out into my neck bed. ( for those who like medical terminology, like I do, one tumor was 2 centimeters in size, lymphatic/vascular invasion present,unencapsulated tumors, diffusely infiltrative). For those who do not like medical terminology, I was up sh**t creek, basically. After my total thyroidectomy, the final biopsy showed that two of my parathyroids were also cancerous, and were removed.

My surgeon told me that I had had thyroid cancer for a long time. Over the years, my blood work would look  a little wonky, but was mostly considered acceptable. I had been seeing this one  physician for five years, and he never did an ultrasound or a biopsy. He told me that the reason  I felt so bad was probably due to stress.  I knew that I needed to get a second opinion, and that something was wrong. I found a new physician, and she found my thyroid cancer with an ultrasound led biopsy. FYI: for those of you getting a thyroid cancer biopsy, PLEASE make sure that it is done with an ultrasound technician in the room helping the physician as she/he takes the samples. Otherwise, I think, it is a little like looking for a needle in a haystack. A little haystack, but still.

For the above stated reasons, I would be very nervous about doing the whole " active surveillance" thing. It might work for some people, but when I found out that I had thyroid cancer, I wanted that monster out right away. If someone chooses active surveillance of their thyroid cancer, I would make sure that all appointments are kept, and that any unusual symptoms are reported ASAP to the physician.

So, in my opinion, is thyroid cancer over- diagnosed? No. Is thyroid cancer being over-treated( meaning surgery, I assume). No, again. The causes are mostly speculative, but some are fairly easy to connect the dots to. As i said, this is just my opinion. One thing that everyone should agree on is that a thyroid cancer patient needs to do their homework. Find out the type of thyroid cancer that they have, devise a treatment plan with their doctor that would work best for them, and keep a notebook of all medical records- procedures and tests.

Thursday, August 16, 2018

Here are the detailed results of my six month thyroid cancer check-up or details of a mixed bag type doctor's appointment...

first of all, the good news! i have been on a every six month thyroid cancer checkup schedule for the past EIGHT years. just to refresh any one's memory who  has not been following my blog, i had stage three papillary thyroid cancer, with an aggressive section of follicular thyroid cancer. two of my parathyroids were also cancerous, and had to be removed. the surgeon also removed eleven lymph nodes. the good news is that now i have graduated to once yearly ultrasounds. i still have to come back in six months for blood work and an office visit. read on for the reasons...

first, my blood work was a bit askew you might say. my t4 was 2.12 ( this labs range is 0.82 to 1.77)  and my t3 was 4.0( range of this lab is 2.0 to 4.4) my tsh was LESS THAN  0.006.( range of this lab is 0.450 to 4.5) . to quote a friend of mine, who summed up the feeling you have when your thyroid meds are too high, i felt like " a squirrel in traffic." what really got my attention though, was when my endocrinologist checked my heart. she said, " well, your heart is skipping a beat or two." she then reviewed my blood levels with me, and here is just one reason why i love my doctor. she looked at me and said; " what do you think we should do about this?" i know she knew, but she wanted to make sure that i was in agreement. i said, " well, i think we should reduce the Levoxyl that i take ( pure t4) from 137mcg to 125mcg. since i get very tired in the late afternoon, perhaps we could add 5mcg or so of Cytomel ( pure t3). just to review, our bodies metabolize the t4 into the t3- which is the energy that our bodies run on. synthetic thyroid hormone, like Synthroid, or the Levoxyl that i take, only consist of t4. sometimes, on a cellular level, our bodies do not, for whatever reason, make all of the t3 that we need. that is where the Cytomel(t3) comes in. now, if you are taking a naturally sourced thyroid hormone, like Armour thyroid or Naturethroid, the t4 AND the t3 are in one tablet. there is no one size fits all in the world of thyroid hormone replacement medications. here  is a pet peeve of mine: what works best for one, may not be the best choice for another. it is just part of the roller coaster ride one takes when trying to find the best type and dose of thyroid replacement hormone for them. and this changes, it seems, all of the time! we lose or gain weight, we get older, we are sick with other illnesses, are just some of the reasons that one requires a dosage adjustment.  whatever medication works for you, Hallelujah! i am certainly not going to suggest that you change to what works best for me. and please, vice versa.

moving on, my last blog discussed bone density, along with some other topics. my bone density test this time showed that my T scores are getting worse. to refresh, a normal T score is 1.0 or above.  osteopenia is defined by a T score of between -1.0 and - 2.5. and osteoporosis is defined as a T score of - 2.5 and below. my T score before had been 0.3, which put me in the mild osteopenia range. i went from 0.3 to - 1.2. still osteopenia, but creeping towards osteoporosis. what can one do for this? weight bearing exercise and  calcium and vitamin D supplements might help. i am already taking a prescription vitamin D. i had to stop my beloved Zumba classes due to a bad knee, and the fact that i had to have some time off  during my breast cancer surgery and chemotherapy. i have recently started Tai Chi classes, but that qualifies  more for balance and stress relief rather than any type of weight bearing exercise. i am still " studying on this" as my grandmother used to say. i do not have any answers to possibly improving, or sustaining, an acceptable T score.

so, my next blood work and office visit with my endocrinologist will be in february. i know this is a 2fer blog, and although i usually write about thyroid cancer related material, my next breast cancer check up will be coming up in november of this year. i will be relaying how that appointment went at the appropriate time. along with getting  a good breast cancer check up,  i am hoping for two more things to happen. first, that with the dosage adjustment in my thyroid replacement hormone, i will feel less like a " squirrel in traffic". secondly, that somehow my bone density will either stay the same, or better yet, improve.

Wednesday, August 8, 2018

Parathyroid function, hypoparathyroidism,osteoporosis- just another day in thyroid cancer world

Everyone has four parathyroid glands. These tiny glands- usually the size of a grain of rice- have a big function. That function is calcium and phosphorus  regulation in our bodies. That is their sole purpose in life- nothing else matters to them. The parathyroid glands are located behind the thyroid gland. Even though they share part of their name with the thyroid gland, they have no connection as far as what they do for a living. The thyroid gland regulates our metabolism, while the parathyroid glands, as stated, regulate calcium and phosphorus  levels. Why is calcium regulation so important? Calcium is the element that regulates the normal conduction of electrical currents along nerves. Calcium also causes muscles to contract. In fact, this is so important that the parathyroid glands are the only glands in the body that have the sole purpose in life just to regulate the correct amount of calcium and phosphorous in our bodies. The so called normal range of calcium is from 9 to about 10. We humans do not feel well if that level drops to below 9 or rises to above 10. Phosphorus regulation is important in that too much of this can hurt our kidneys. The parathyroids  can help the kidney eliminate excess phosphorus.

The parathyroid glands regulate calcium and phosphorous levels  by producing a hormone called parathyroid hormone, or PTH as it is known by its friends. If our calcium level drops, the parathyroid glands recognize this fact, and make PTH. This PTH goes to our bones and takes out some calcium, which then goes to our bloodstream. Our bones contain the majority of calcium for our bodies. There is also some calcium  in certain cells and some in blood and extracellular fluid.  When the parathyroids feel that the calcium level in the blood is correct, they take a break and stop making PTH.  A person can get by with one parathyroid gland, but we all need at least one. There are a few causes of hypoparathyroidism, but the major cause of this, and the only one that I will discuss, is hypoparathyroidism caused by thyroid cancer surgery, which results in removal of all of our parathyroid glands.  Some symptoms of hypoparathyroidism include: 
* tingling or burning in fingertips, toes and lips
* muscles aches or cramps in feet, face, abdomen
* twitching or spasms in muscles around the mouth or in the hands, arms and throat
*fatigue, weakness
* hair loss
*dry skin
*depression or anxiety
* in severe cases, there could be seizures or difficulty breathing. 

How is hypoparathyroidism treated? The doctor monitors the blood level of calcium, phosphorus ( too much phosphorus released by the bones can cause organ damage) and PTH. Low production of PTH in hypoparathyroidism, causes abnormally low calcium  levels in the blood and bones, and increased levels of phosphorus in the blood stream. 

Along with calcium supplements, a drug , Calcitrol, can be prescribed to treat hypoparathyroidism. Calcitrol is the active metabolite of vitamin D. The ways that  it works are by increasing the calcium that is released by the gut into the bloodstream, increasing the amount of calcium that is reabsorbed by the kidneys, and probably by increasing the amount of calcium that is released into the blood stream  by the bones.

Hypoparathyroidism is treatable, but it is a life long condition and can have serious complications. This is one example of why it is so important to have an experienced surgeon  doing thyroid cancer surgery. Please, please find out how many thyroid cancer surgeries that your potential surgeon has done, read reviews, and do your homework on the surgeon's technique, including how many patients he/she has had with hypoparathyroidism after surgery. 

A condition that is related to the above mentioned material, is osteoporosis. Osteoporosis can be  caused by several factors. Increasing age, a sedentary lifestyle, low estrogen in women, low testosterone in men, a deficiency of calcium and vitamin D, and high levels of thyroid hormone, just to name a few. How is osteoporosis diagnosed? By a bone density test, which measures how many grams of calcium and other bone materials are present in a section of bone. The bones most commonly tested are the hip and spine. Dense bones are good bones! Dense bones are less likely to break. Who wants a broken hip?

A bone density test is not painful. It is a fairly fast test- completed in about 10 to 15 minutes. It is best to wear loose clothing and avoid belts, zippers, and metal objects in pockets, etc. One thing that I was not aware of, is that it is best to avoid taking calcium supplements for at least 24 hours before the test. The amount of radiation that one is exposed to is very small. Much less than a chest x-ray, and I read on one site that a central DXA machine, which is the preferred test if your insurance will pay for it, has 10-15 times less radiation than a person receives on a round trip flight from New York to San Francisco! It is also recommended to use the same site/machine for subsequent bone density tests. This provides the doctor with a more accurate comparison of the results.

And how are the results expressed? The most commonly used test result is called a T-score. It is the bone density compared to the bone density of a healthy young adult of your sex. The following is a breakdown of the T-scores:

*  T-Score of  -1 and above :    Your bone density is considered normal

*  T-score of between -1 and -2.5 :  your score is considered osteopenia, ( below normal,) 
*  T-score of  -2.5 and below : considered to be osteoporosis

It is interesting to note that having low bone density or osteopenia does not mean that you will automatically have osteoporosis. If you lose bone in the future, or if your physician determines that you have what is called " fracture risk, or the estimate of the chance of a person breaking a bone" it may be determined that you need treatment for osteoporosis. It is not easy to determine if a person with osteopenia, or mild osteoporosis needs to take a treatment medication. These treatment medications have quite a few side effects, but certainly have their place in the hopes of preventing broken bones. 

In conclusion, the  parathyroid glands are extremely important to our bodies. It is an unfortunate consequence in some cases of thyroid cancer surgery, that one loses all of the parathyroids. Regardless of how many parathyroid glands that one does or does not have, it is important to have blood calcium tested and monitored by one's physician. And furthermore , along with the standard thyroid blood tests and calcium level tests, it would be prudent to have a bone density test every year or two. Know your numbers, keep a record of your tests, and most importantly, be your own best patient advocate.    

Wednesday, July 25, 2018

TSH( thyroid stimulating hormone) suppression in thyroid cancer treatment

TSH suppression has been the gold standard in the treatment of thyroid cancer patients. just to review, TSH is produced by the pituitary gland in the brain, and tells your thyroid gland to make and release thyroid hormones into your bloodstream. so, if you are a person, like me, and have had your thyroid removed due to thyroid cancer, why would you need to have your TSH suppressed? i have shared this quote from my endocrinologist many times in previous blogs, but here it is again. " even the most brilliant surgeon can not possibly get all of the bits of thyroid cancer cells that may have escaped from a cancerous thyroid gland." i also have called these rogue thyroid cancer cells, " Sarah Palin" cells. if you have had your cancerous thyroid gland removed, and even had the RAI treatment dose, there still may be some thyroid cancer cells " hiding out" in your body somewhere. the ONLY cells that would respond to the TSH produced by the pituitary gland would be thyroid cancer cells, since the thyroid gland itself has been removed. you do NOT want to wake up these rogue thyroid cancer cells by a high TSH.

a normal TSH range can be  slightly different, according to what lab does your blood analysis, and also varies a little from physician to physician. one value for a normal TSH range is : 0.4 to 5 milli-international units per liter ( mIU/L). if you have a high TSH value  you are considered hypothyroid. if you have a low TSH, you may be considered hyperthyroid. this is somewhat confusing. but consider it this way. if you have a high TSH, your pituitary gland is sending out more TSH because your thyroid gland is not working properly. the pituitary just keeps on cranking it out, so to speak, trying to get the thyroid gland to make and produce thyroid hormones.

getting back to suppression values of TSH in the treatment of thyroid cancer. these are  the " official" guidelines determined by the american thyroid association ( ATA) in 2009. they are as follows:

for INITIAL TSH suppression, for high and intermediate risk patients, the guidelines recommend that the initial TSH be below 0.1 mU/L. for low risk patients, that value should be slightly below the lower limit of normal, or 0.1-0.5mU/L.

for LONG TERM MANAGEMENT, the guidelines are as follows:( all numbers are expressed in mU/L)

* in patients with persistent disease, the serum TSH should be maintained below 0.1 indefinitely in the absence of specific contraindications ( i will talk about these later)
* in patients who are clinically and biochemically free of disease, but who presented with high risk disease, the recommendation is made to maintain TSH suppression therapy of 0.1-0.5 for five to ten years.
* in patients free of disease, and at low risk for recurrence, the TSH may be kept within the low normal range of 0.3-2.
* in patients who have not undergone ablation, who are clinically free of disease, and have undetectable suppressed serum Tg and normal neck ultrasound, the serum TSH may be allowed to rise to the low normal range of 0.3 to 2.

it is interesting to note, that according to the ATA, " about 85% of post op patients are considered low risk, according to guidelines." i am not going into the guidelines here, but if anyone is interested, this information on low, intermediate and high risk of persistent or recurrent disease is explained on the website. this is a wonderful website, full of very interesting and informative information. if you are a thyroid cancer patient, i urge you to check this out if you have not already.

the question of do you keep your TSH suppressed or not, and at what value, is an important one. this is where a really good physician who has lots of experience dealing with thyroid cancer patients is essential. i see an endocrinologist, but there are some excellent physicians out there who have a lot of experience dealing with thyroid cancer patients who are not endocrinologists. do your homework. read other patient reviews as well as professional reviews. do not be afraid to switch doctors or get a second opinion. i will tell you a secret now. i went to FOUR different endocrinologists before i was able to find one that i felt confident would be able to help me. i have been seeing this doctor for the past 10 years or so. i drive four hours to see her, and i would not see anyone else. try not to get discouraged when you are trying to find a good physician who can successfully treat thyroid cancer. one reason that it is very important that you do find someone who is very knowledgeable about the treatment of thyroid cancer is  because of the risks associated with a very low TSH.

in a paper by David S. Cooper, " an overview of long-term clinical consequences" from the division of endocrinology and metabolism at the John Hopkins University School of Medicine, written in 2010, states several risk factors of a suppressed TSH. Mr.Cooper does agree that TSH should be maintained at levels less than 0.1 in high risk patients ( stage III and IV). he states that lower risk patients should be allowed to have their TSH levels rise to normal levels after residual disease has been ruled out. where it gets complicated, is when the patient is older ( say, over 60) and has osteoporosis, cardiovascular disease, or diabetes and is at high risk.

about 10% of patients with differentiated thyroid cancer( remember, this refers to papillary and follicular, as well as their variants) will have a recurrence. in  a small number of these patients, the outcome will be fatal. so which patients will require a full suppression of their TSH, and which patients will not? this study states that about 80% of all thyroid cancer patients are low risk and will not benefit from maintaining full suppression of their TSH.  increasing age and  other health conditions- especially heart issues, makes the decision about suppressing TSH a complicated one. a low or suppressed TSH value can cause heart arrhythmias (ex. atrial fibrillation) in an older person, or a person with existing heart issues or diabetes. there is also the risk associated with osteoporosis and a low or suppressed  TSH.

complicating matters, is that in the John Hopkins paper, the author listed two studies where a very low or suppressed TSH was linked with a higher survival rate. this relates to those in the higher stages group( stage III and IV). so, the difficult question is, how does one treat the older patient with a higher stage thyroid cancer who has heart disease or osteoporosis? there is no definitive answer to this question. it is an individualized treatment plan made by an experienced physician with input and consideration of each patient.

thyroid cancer requires life long monitoring and treatment. i had thyroid cancer eight years ago and I still see my endocrinologist every six months, and receive ultrasounds of my neck and blood work. i get a bone density test every year. all these tests are coming up for me in august. my TSH has been suppressed since i had my surgery for thyroid cancer. my endocrinologist and i have discussed letting my TSH rise a little, but i had stage III thyroid cancer, so this is a somewhat risky decision for me. i plan on showing my endocrinologist the information from about keeping the TSH suppressed for 5-10 years for high risk ( high stage) patients. i think i would feel better if my physician would agree to keep my TSH suppressed for a couple more years. this depends somewhat on the results of  my bone density test. my heart function, thankfully, is fine- at least for now.

this is a complicated issue for just about everyone who is a thyroid cancer patient. just one more reason thyroid cancer is not the " good cancer." i hope that i have not muddied the water, so to speak. the bottom line is this: find an excellent physician who has experience in treatment  and monitoring of thyroid cancer patients. and make sure that you are able to talk freely and ask questions about your treatment, and have input  with your doctor.

Wednesday, July 11, 2018

Radioactive Iodine treatment dose( RAI)- friend or foe?

there seems to be a lot of discussion going on about the use of  RAI, and at what dose. when i received my treatment dose of RAI for thyroid cancer, back in 2010, i received a large dose- 155 millicuries. that was 55 millicuries above the, i guess you could say, " average" dose of 100 millicuries. it was not so hot of a topic- excuse the pun- back in 2010 when i received my dose. yes, i knew i was getting a larger than average dose of the RAI. my endocrinologist thought that i would be receiving 100 millicuries. the radiologist who was treating me with RAI after my surgery recommended upping the dose to 155 millicuries. he based this on the facts that: although i did not have a positive lymph node, i had had several tumors which had burst open and spilled out into my lymphatic system.  i had an aggressive area of follicular thyroid cancer in addition to papillary thyroid  cancer. and finally, i also had two parathyroid glands that were cancerous as well. i might add here that to have thyroid cancer spread to the parathyroid glands is rare. sometimes the parathyroid glands are damaged in the surgery and have to be removed, but rarely are they themselves cancerous.

at the time of my surgery and subsequent treatment with the RAI, it was considered a " no brainer" decision. my endocrinologist told me that " even the most brilliant surgeon could not possibly remove all of the thyroid cancer cells." i knew a little about the risks- especially the highly debated possible connection between RAI use and breast cancer. this link has still not been proven. i will disclose here that in 2015 i did in fact have breast cancer. do i feel that the RAI was a contributing factor? i am not sure. there is no hard evidence that a treatment dose of  RAI can cause breast cancer. the general consensus  has been that one should  treat the cancer that one has, namely the thyroid cancer. just be sure to have regular mammograms, which i continued to have on a yearly basis.

one thing that i do know for sure is that RAI can cause salivary stones. about 7 months after my treatment dose, i developed salivary stones. i used the sour candy and sour lemonade as instructed when i received my RAI. i drank lots of water. when i got my first salivary stone, i went to my dentist first- hoping it was a dental issue. he told me he thought that it was a salivary stone, and made an appointment for me with an ENT ( ear, nose and throat) physician. the ENT confirmed the diagnosis and prescribed warm compresses, a little massage, sour lemonade or candy, drinking lots of water, and he told me that i could take ibuprofen occasionally for the pain and inflammation. i have had trouble with salivary stones over the past 8 years. it is not a constant issue, and when the salivary stones   occur, i use the self care issues stated above, and they usually resolve. lately, though, i have had some trouble with a little  swelling in my neck under my chin. i have the name of a very good ENT surgeon that i will probably  make an appointment with if this continues.

in some of my previous blogs, i have shared the statistic that if you have had thyroid cancer, you have about a 33% increase in risk of having another second primary  cancer. and there is an increased risk of having breast cancer if one has  had thyroid cancer. interestingly enough, if one has  had breast cancer first, the risk of having thyroid cancer is also higher . some  cancers that have been POSSIBLY associated with larger doses of RAI include leukemia, lymphoma, colon or bladder cancer.

there are so many factors to consider, when it comes to making a decision to have or not have an  RAI treatment dose. one must consider the severity of thyroid cancer, for one thing. it is not the" good cancer" that some people, even health professionals, like to say.  thyroid cancer changes your life forever. constant monitoring, searching for the perfect, ha, thyroid hormone replacement medication(s), dealing with the physical symptoms of being hypothyroid in the extreme, just to name a few issues. and people can possibly  die from thyroid cancer. there is a very  good chance of survival ( a good prognosis)   if treatment is successful and  there is an early diagnosis. the type of thyroid cancer, yes there are  more than one kind- there are about five to be precise, also plays an important part in survival. thankfully, the most deadly forms of thyroid cancer, especially anaplastic, are very rare.( only 1 to 2 % of all thyroid cancers are anaplastic )

treatment of thyroid cancer, including the RAI treatment dose, is an individual decision. i used myself as an example, but the treatment i chose might not work for anyone else. there needs to be a good relationship between a thyroid cancer patient and the radiologist, or oncologist, concerning the question of is RAI necessary, and if so, what dose ? every patient should do all of the research possible, from reputable websites and books, and along with a physician they trust, come to a decision regarding treatment.

i have been asked several times if i would have done anything different regarding the RAI. my answer is somewhat mixed. i can honestly say that i WOULD have the RAI treatment again. my thyroglobulin and thyroglobulin antibodies remained high for three and a half years after my surgery and treatment with the RAI. i honestly believe that i might have had a recurrence  had i  not chosen to have  the RAI as recommended by my radiologist and endocrinologist. what i might have done, perhaps, was to lobby  for a lower dose- a little closer to the 100 millicuries. it might  have been enough for me, but i try not to dwell on this. everyone makes their best informed decision, and then you just have to move on, so to speak.

Saturday, June 30, 2018

" i recall when i was young, my papa said, " don't cry, life is full of ups and downs like a roller coaster ride. there'll be times you'll get so scared rollin' down these hills. but you hold on tight with all your might... you go up, down, all around on a cycle that is never ending." rollercoaster, by blood, sweat, and tears.

there are times when song lyrics sum up just the way one is feeling. this happens to be the case for me. i feel like i have been on a roller coaster ride  for eight long years. oh sure, there have been plenty of wonderful times over the past few years.  but just when i think that i have made it to the crest of the hill, my coaster
 car seems to plummet over the edge again.

i remember riding the ultimate, at the time, roller coaster. that scream machine was called " space mountain" and it was at disney. my husband and i took a short trip to disney about a year after we were married. after much trepidation, i got into the coaster  car with my husband. he assured me that it would not be that bad! there were no seat belts, and the only lights were little twinkling lights that looked like stars. i can almost still hear the grinding of metal on metal as we went on our journey upward on the roller coaster track. at the top, the car stopped for a few seconds that felt like hours, then went hurling over the edge into a dimly lit abyss. i thought i was going to die. or at least get thrown out of the car. i promised God, that if i lived to get out of that coaster, i would never be foolish enough to try it again.

the image of my one time space mountain ride, a promise is a promise after all, is how i feel about having had cancer twice. it also pretty much sums up every six month checkup that i have to endure. the anxiety, the ups and downs, the feeling of being out of control. and speaking of, what has conjured up the roller coaster again, is the fact that i will be having a skin biopsy in a couple of weeks. now, i have had skin cancer twice- squamous and basal, but i do not even count those on my cancer scoreboard. no disrespect to anyone who has had to deal with aggressive squamous, basal, or heaven forbid, melanoma. there is no good cancer!

when i left the dermatologist's office yesterday, the nurse told me to try not to worry. unfortunately, when it comes to me, that would do about  as much good as telling a sailor to not worry about the weather when a hurricane is brewing nearby. i am a worrier by nature, and having had  cancer sure has played into those feelings. i feel like i am on that roller coaster again, and it is getting ready to go off of the edge. of course, everything will probably turn out o.k. i am a Pollyanna person at heart. but my track record may beg to differ with that assumption.

so many people have difficult issues to deal with. i saw that when i was working in the pharmacy. just when i thought i would feel sorry for myself, here comes this really sweet, or cranky, person who had it WAY worse than i did. that has been very helpful to me- working with people and realizing that just because someone looks fine, does not mean that they actually are doing well. one time, i was talking to another pharmacist on the phone ( we were trading prescriptions) and she asked me how i was doing. i said the usual stuff along the lines of "oh, i am doing fine,etc, how are you?" then she said, i know you have had cancer, so how are you REALLY feeling? my coworkers knew of my health issues, but i generally did not discuss it with customers or others, so it sort of caught me off guard. i also would feel  emotionally drained whenever i discussed something that i was trying, if just for a few hours, to forget. but i appreciated the other pharmacists concern, and i told her that, really- i was fine.

we never know what issues, health or other , that people are dealing with. it is very important, especially in today's world, to be kind to everyone. have a little patience with someone who is driving 20 miles below the speed limit. hold the door open for someone who is entering a store as you are exiting. say " hello in there" to quote john prine. these things do not cost any money, and can make someone's day. who knows when one might be on the roller coaster going down instead of up. as for me, i am just getting ready to" hold on tight with all my might."

Saturday, June 23, 2018

the thyroid cancer, and developing another primary cancer link.....

so, as many of you know who read my blog, i had thyroid/parathyroid cancer in 2010, and breast cancer in 2015. when i had thyroid cancer, i was vaguely aware of a possible link between having thyroid cancer and having breast cancer OR vice versa. i was interested in this subject, so i began to do some research. 

i will add here, that i did read that some people felt that there was a link between RAI treatment and the possibility of developing breast cancer. my" go to" thyroid cancer book, thyroid cancer, by m. sara rosenthal said that there was no proof that RAI treatment would cause breast cancer.  the author, a thyroid cancer survivor herself, felt that it was better to treat the thyroid cancer that you have, and be diligent about having regular mammograms. that is the path that i took- to treat my thyroid cancer aggressively, and to be completely honest, i would have the RAI again. my thyroid/parathyroid cancer was stage 3 and i had an aggressive area of follicular variant in addition to papillary thyroid cancer. i have since heard people argue back and forth on this possible link, but there is no evidence that i have found yet, anyway, that would definitively answer this question. my best advice, which is good advice for any woman if you have had thyroid cancer or not , is to have regular mammograms and do monthly  self breast checks. 

it was when i was undergoing chemotherapy for breast cancer, that i found this statistic: according to the american cancer society, cancer survivors can have a recurrence of their original cancer, but also are at risk ( the general consensus is 30%) of developing a new, unrelated cancer. this cancer is called a second primary cancer. to quote the american cancer society, " no matter what type of cancer you have had, it is still possible to get another new cancer, even after surviving the first." if you are a thyroid cancer survivor, it is possible to get any type of a second primary cancer, but these cancers have an increased risk for thyroid cancer survivors. they include:

* breast cancer- in women

* prostate cancer

* kidney cancer

* adrenal cancer

there is also an increased risk of stomach cancer, acute lymphocytic leukemia, and salivary gland cancer if you have been treated with RAI. since i have had a history of salivary stones after my RAI dose, i am paying particular attention to my salivary glands. i have had some swelling in my parotid salivary glands that i will be getting checked out. and yes, i would still have had the RAI treatment. it is an individual decision, made by each patient and their physician, but i still feel  that it was the best choice for me. 

i have had some people ask me where i read about  the 30% increased risk  of having thyroid cancer and then a second primary cancer. once source that cites this statistic  is an article in cancer epidemiology, biomarkers and prevention. i have seen higher percentages and lower percentages, but 30% seems to be the most common percentage that i have seen, at least so far.  this article in cancer epidemiology, biomarkers and prevention, goes on to say that a breast cancer survivor was 1.55 times more likely to develop thyroid cancer than a person with no history of breast cancer. the article also states that a woman who had had thyroid cancer was 1.18 times more likely to develop breast cancer than one with no history of thyroid cancer. 

WHY??  the article mentioned above stated that there are several possible explanations. for one thing, a cancer patient is more likely to go for check ups, thus other cancers could  possibly be detected earlier than in a person who has not had cancer. there could also be a common hormonal risk factor for both diseases- and those hormones  are  estrogen and thyroid stimulating hormones. this article states that use of RAI may have a very small impact on the development of other cancers, but the risk remains unclear. i was hoping for a definitive answer on this, but there does not seem to be one. again, when making  the decision to have RAI or not,  it is best to discuss the patient's best treatment based on staging, if the thyroid cancer has spread, how aggressive ( type) the cancer is, among other things. one needs to have a strong relationship with one's physician in order to come to the best decision as far as treatment and possible outcome.

my blog today is not intended to spread fear and mayhem. it is purely to inform others of the importance of regular screening tests, especially mammograms, if one is a thyroid cancer survivor. and thyroid screening tests if one is a breast cancer survivor.  i have always thought that knowledge is power. how we use that knowledge is not only beneficial to our physical  health, but helps our state of mind. knowing that we, as thyroid or breast cancer survivors, have made the best decisions that we can for ourselves should make us all sleep better at night. a cancer patient should be their own best patient advocate. read articles. be informed, keep copies of your tests and doctor visits. be informed. you be the boss of cancer, do not let cancer be the boss of you. 

Tuesday, June 19, 2018

"... i can't stand her doing what she did before, living like a gypsy queen in a fairy tale...well, i did not think the girl could be so cruel and i'm never going back to my old school." my old school, by steely dan

after you have had cancer treatment, surgery , chemotherapy or whatever, people tend to expect you to go back to the person that you were before your tango with the big "C". can you return to your former self? the short answer is " NO". but that is not always a bad thing. i do not like using the term " my new normal." but that pretty much sums things up.

cancer carries a lot of baggage with it, as i have said before. there is PTSD, for one thing. i have flash backs of my surgery and immediately afterwards. especially my first day in the shower after the mastectomies. nothing can prepare you for that. people have told me, trying to be encouraging, well,"they are only breasts, and besides, you will have perky ones now!". just to fill anyone in who thinks this, what i got was not a " boob job". my plastic surgeon said these exact words to me :" honey, you ain't getting no boob job." and believe it or not, i appreciated him saying  that. breast reconstruction was a long, and rather painful process.  my so called " perky breasts"  are rock hard , numb , and  my chest  hurts fairly often.  thanks to my 3D nipple and areola tattoos, i do  feel better when i catch a glimpse of myself in the mirror. i highly recommend the tattoos. i never thought i would try to persuade anyone to get a tattoo, but Vinnie Myers, who does only breast  3D tattoos, is a hero of mine.

another accessory that comes with thyroid and breast cancer, and any cancer really, is the fear of recurrence. test anxiety is fairly common, and hard to explain unless you are a cancer patient. to this day, and it has been nearly three years since my last chemotherapy treatment, i get sick to my stomach when i smell the hand sanitizer in my oncologist's office. i turn green. and no matter if i shower off when i get home or not , the smell remains with me for the rest of the day. i used to get sick when i pulled into the parking lot, but i am a little bit better about that now.

there are other health conditions that i have now thanks to the cancers that i had. lymphedema can occur in anyone who has had lymph nodes removed. it is not a condition limited to the arms or legs. you can actually have this in your head or neck, if you have had  lymph nodes removed as you would if you have had thyroid cancer. it is important to see a special CLT ( a  physical therapist who has had extra training on  how to do lymphatic massage).  i wear active massage arm  compression garments, as that is where i have lymphedema. i also do the manual massage at home, as well as some other self care techniques.

for my thyroid cancer, i had a large dose of radioactive iodine, aka, RAI. while this gets rid of any rogue ( i have referred to them as Sarah Palin cells in the past) thyroid cancer cells that are trying to go to other places in your body,  there are a few  side effects to this treatment. would i have  the RAI  again? YES.  but i did have salivary stones about 7 months after my treatment. this has been an on and off thing. i am now having trouble with my parotid salivary glands. is it a stone or a cyst? i am not sure, but i am going to be checking on this- first with my doctor, and then with an ENT surgeon, if my physician  thinks it is necessary.

now for the positive side of cancer- there is one, believe it or not. here is some of what i learned :  i know what is important in life. i know who my true, real friends are. i appreciate my family more, especially time spent  with them. i do not let the little  annoyances in life  bother me as much. i would like to say, i do not let little stuff bother me at all, but i am trying to be honest here. i have found out that i am stronger than i thought. i am taking better care of myself- eating better, getting more sleep. and i try to find some quiet time each day- porch sitting, just to look around and be grateful. i tried learning to meditate, but my porch sitting time is as close as i could get. being out in nature is soothing to me. i think  when we connect with  nature, we feel that we are  a part of the world. i somehow feel less sick, less of a patient, and more just like someone who belongs. 

oh, and the song lyrics title? it has really nothing to do with this blog. it is just my favorite steely dan song.

Monday, June 11, 2018

" i almost cut my hair; it happened just the other day; it was getting kinda long, i could have said it was in my way. but it didn't, and i wonder why. i feel like letting my freak flag fly..." almost cut my hair, by crosby, stills, nash and young

hair is an issue that is near and dear to all of us- female and male alike. when we start to see our hair circling the shower drain, or populating our brushes, the subject of hair takes on an urgent quest for answers and treatment. there are many causes of hair loss- from medications we take, stress( we like to blame this for numerous problems), heredity, and certain health conditions. i am going to discuss hair loss associated with thyroid disorders, specifically, hypothyroidism. i will add that hair loss can also result from being HYPERthyroid, too. and as a side note, if you are taking the drug, anastrazole- a chemotherapy drug taken daily by breast cancer patients to block estrogen production, you may have thinning hair. there are other drugs that can  potentially cause hair loss or thinning. i am not mentioning them here, as i am trying to stay on topic. the list is long, and if you are really interested, you may check Webmd  for the full list.

if you have had thyroid cancer and had  surgery to remove your  thyroid, as i did, then you are the very definition of being hypothyroid. folks, it just does not get any more "hypo" than this. thyroid cancer patients have to depend utterly and completely on the dosage of thyroid medication that we take to feel good as well as to keep  our bodies functioning properly.  as the thyroid gland controls almost everything in our bodies, including our hair, it is very important to find the correct dose and type of hormone ( synthetic or naturally derived ) for each of us. this is not a one size fits all type of thing. and it can be a slippery slope- with lots of dosage adjustments, that, frankly, can be frustrating. i can not tell you how many times that my thyroid dosage has been changed- increased or decreased. i have tried naturally derived, synthetic, and i have also tried that wonder drug that some physicians will not prescribe, cytomel ( pure t3).

as i stated above, the thyroid gland controls almost everything in our bodies. and that includes our hair follicles. an imbalance in the T3 and T4 production in our bodies affects the development of the hair at the root. the hair will fall out and may not be replaced until the hormone ( T3 and T4) is back in sync. so, hair thinning or loss could be a result of poor levels of thyroid hormones. this could be a sign that a dosage adjustment is in order. in my opinion, it does not hurt to supplement with some vitamins or minerals to help our hair follicles.

low ferritin ( iron) levels in the body can also cause hair thinning or loss. iron is important for hair growth. if the ferritin level is low, the body- ever resourceful- will take the ferritin from the follicles and give it to more important organs, such as the heart.  you need to get tested and monitored for ferritin levels, though. taking too much is harmful for the body. i think that it is something to discuss with your physician and be monitored closely for.

another helpful supplement, though not everyone benefits from this, is biotin. another name for biotin is vitamin B-7. natural sources of this vitamin are found in small amounts in eggs, milk, and bananas. the B vitamins are water soluble vitamins that are beneficial for  skin, nails, and hair. some people have reported acne when using biotin. i think that if you try this, try the smallest dose first. i have seen OTC strengths from 1,000mcg all the way up to 10,000 mcg. probably the most important thing to remember about biotin, that even though it may be  working for you as far as hair growth goes, it can significantly affect many lab tests, including thyroid lab tests! it can give false highs as well as false lows. if you are taking this supplement, it would be wise to stop a good while before your blood work. also, i think it would be wise to let your physician know that you are taking this supplement. this is rather new information, so many physicians may not be aware of this as yet. there is an article that was published in the  january, 2016 issue of  Endocrine News about biotin use and interference with lab results. this might be helpful information to have when having this discussion with your physician.

some common sense ideas about being good to your hair include using a gentle shampoo, taking it easy on blow dryer and hot iron use, limiting or eliminating the use of hair bands for a tight ponytail style, and my favorite, using a silk pillow case. the silk, or polyester " silk" allows the hair to move over the pillow case without pulling the hair out. as a bonus,  it is so nice to sleep on. 

when i had chemotherapy for breast cancer ( it will be three years ago this august), i lost all of my hair- everywhere on my body. to be honest, i am rather obsessed with my hair.losing  it was pretty traumatic for me. i learned to tie  a head scarf really well, and wore a soft cotton sleep cap. i was pretty excited when my hair grew back! it took a while, and it was different- weird color and extremely curly, but i was happy to see it. i told my husband that i was going to let it grow to the floor, lol. of course, that did not happen. being hypothyroid has caused some thinning, and the chemo left me with a permanent little bald spot that you have to look for, but i am very conscious of. i have delved into trying to find out what supplements i can take , as well as other things i can do to make my hair more healthy and full. as with almost everything else, it is not a one size fits all kind of solution. but trying to keep my T4 and T3 levels within the good range seems to be one of the most important solutions. really, we are a hair obsessed nation, as a whole. this will be an on-going project for me, as it probably will be for everyone else facing hair loss. and after  having no hair, i will never, ever say that my hair was " kinda in my way."