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...

Tuesday, August 20, 2019

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

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

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

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

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

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

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

Monday, August 5, 2019

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

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

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

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

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

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

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

Saturday, July 20, 2019

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

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

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

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

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

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

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

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

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

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

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

Sunday, June 9, 2019

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

Many times in my earlier blogs, and while I was practicing pharmacy, I have urged people to be "their own best patient advocate." While this may sound easy, or even intuitive, it is fairly difficult. When one is faced with a serious health condition, especially a cancer diagnosis, emotions are all over the place. Decisions have to be made - quickly, in some cases. It is difficult to get one's mind wrapped around the fact of  having cancer, say, much less to make treatment and care choices.

 It is helpful to have a trusted person accompany you when you have doctor's appointments. Usually there is a lot of information given out, and it is good to have someone else listening along with you. One person can sometimes hear something important that the other person misses. I remember when I met with the radiologist concerning my thyroid cancer type and the treatment that the doctor recommended. My husband was with me, thankfully, because I will admit that my mind wandered a bit when the radiologist was going over the specifics of my case, and why he had chosen the amount of the I-131 that I would be receiving. It sounds strange, but I almost looked behind me. Surely, the doctor was talking about someone else! The thyroid cancer that I had was more serious and the dose of the I-131 was larger than I was expecting. Also worth noting, was the fact that I got a copy of the final pathology report. My radiologist went over this report with me, and highlighted the facts that warranted using a higher dose than I was expecting. I asked for, and received, a copy of this report.

If you have not done this, I highly recommend that you buy a three ring binder notebook, and keep copies of all tests, results, lab work, and anything else related to your thyroid cancer diagnosis and treatment. All those of you who are " tech savvy" may say, " Why should I do this?" " It is all documented in the computer, correct?" Let me give you one example of why you should keep hard copies of your paperwork. A few years ago, I had an office visit with my endocrinologist, and she mentioned that their office had gotten new computer systems. All of my test results, lab work, reports,etc. were  supposed to be loaded into the new computer system. Well,they were NOT all loaded into the new computer system. The final pathology report was missing, and she needed to see that report before we made plans on my follow up testing and treatment. I had brought my notebook with me to that appointment, and had the report- she made a copy of the report and had someone enter it into the new computer system. Yes, my doctor probably could have tracked down the report, but that would have taken some time, and possibly affected my future visits and treatment. It is not too late to start keeping your records, by the way. I started from the first of my thyroid cancer journey, but you can request earlier records ( they DO belong to you, by the way) and add them to your reports going forward.

In making decisions about surgery, treatment, monitoring and so forth, I advise anyone to research, research, research. Go to reputable websites, read books, of course listen to the recommendations of  doctors that you have SO CAREFULLY chosen. But in the end it is YOUR decision. Listen to your " gut feelings". While there certainly are standards of care in regards to cancer treatment, there is no one size fits all. Ask good questions. Ask tons of questions before you have treatment and procedures. In the end, it is YOU who will live with the decisions that are made, so make an informed decision, using all the tools available to you, and go with it. I try not to look back on my decisions. I made the best, informed decisions that I could make at the time. I did my research, I have and still do, keep copies of all of my records.

Be your own best patient advocate. It is difficult to tell a doctor or other health professional " NO", or " I want to do this another way"  but it may be necessary when choosing the right option for you. To quote the famous Dr. Spock, and I know that he was talking about childcare decisions, but I think it applies to many other situations. Dr. Spock said " Trust yourself. You know more than you think." I would add to that, if something feels wrong, it probably is wrong for you. It is not easy to stand up for yourself, but if not you, then who? My best piece of advice is, and I will repeat it, " Be your own best patient advocate." Oh, and keep that notebook...

Wednesday, May 1, 2019

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

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

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

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

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

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

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

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

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

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

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

Wednesday, April 10, 2019

the link between wound healing and hypothyroidism

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

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

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

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

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

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

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

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

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