Lymphedema: diagnosis, treatment and self care

 As those of you who read by blog know, I am both a thyroid cancer and a breast cancer survivor. I try to write about subjects that can affect people who have/ have had one or both of these cancers. Lymphedema is a condition that can affect anyone who has had cancer. While there is no cure for lymphedema, there are several ways to manage lymphedema, thus achieving a better quality of life. When I was looking for articles on lymphedema, I came across a wonderful quote by a physician who works for MD Anderson. Dr. Jan S. Lewin is a professor in the head and neck surgery department and section chief of speech pathology and audiology. She said :" There's such a focus on cancer that patients don't see past the diagnosis and treatment to understand the outcomes they will face and the quality of life challenges that lie ahead. " I think that Dr. Lewin hit the nail on the head with this statement! 

Using myself as an example, for the hundredth or so time, after my diagnosis and treatments for my cancers, it was over ( except for routine checkups and blood work) as far as my doctors were concerned. I appreciate the amazing work they had done to get rid of the cancers, but what do I do now? How do I manage the aftercare and challenges that being a cancer survivor brings? How do I improve upon my quality of life? 

Lymphedema is a condition that affects many cancer patients after surgery, radiation and chemotherapy. Lymphedema is defined as the swelling of tissues caused by the accumulation of lymphatic fluid. A healthy lymphatic system will carry extra fluid to the blood vessels near the heart. Lymph nodes filter viruses, dying cells, foreign matter, and bacteria. This is part of a healthy immune system, when the lymphatic system is working properly. One estimate I saw states that there are between 500-600 lymph nodes in the body! The groin, arm pits and neck seem to have more lymph nodes than other places in the body, but lymph nodes are scattered throughout the entire body. 

Lymphedema usually happens 2 to 6 months after treatment, but it can also occur YEARS after treatment. Since there is no actual cure for lymphedema, it is prudent to get  a diagnosis as soon as lymphedema is  suspected and start on treatment and care. What are the symptoms of lymphedema? They include swelling ( both internal and external) near the surgical/treated place, a feeling of tightness in the area affected, restricted movement, recurring infections, and sometimes  thickening of the skin. 

When one thinks of lymphedema, one thinks of the arm ( as in breast cancer patients ) or leg being involved. It can occur anywhere in the body because of all of the lymph nodes that we have. If it does occur in the head or neck ( in a thyroid cancer patient for instance) it can involve the oral cavity, tongue, larynx, airway and throat. These places would be considered internal lymphedema sites. External lymphedema sites ( in head and neck cancers) can occur in the neck and face and can also occur in the lips, nose, eyelids and ears. One can have internal, external or both. 

The more lymph nodes a person has had removed, the greater the chance of that person having lymphedema. Diagnosis is often made by a patient's signs and symptoms, but can also be diagnosed by MRI scan, CT scan, ultrasound, and a test using a radioactive dye and scan. 

In my case, I noticed a change in my left arm. I had had three sentinel lymph  nodes removed during my bilateral mastectomies. It was several months before I noticed a difference ( size and swelling) between my left and right upper arm. I made an appointment with my family care physician, who referred me to a special physical therapist ( a CLT-LANA ). This is important! These physical therapists have hundreds of hours of training to learn how to treat lymphedema. They learn how to do the special massage to help move the excess fluid from the site. The massage is a light, circular massage- not deep tissue massage. Our lymph nodes are located close to the surface of the skin, so only light pressure is needed. CLTs also can do measurements to check any progress made, as well as measuring for compression garments. They can also teach patients how to do the massage at home. The CLT that I saw taught my husband how do to the massage for me. It really helps with the swelling. 

Treatment for lymphedema can also include light exercises to move the fluid, compression bandages, and sequential pneumatic compression- which is a pump system that moves the fluid. Having lymphedema also increases the risk of skin infection. This is called cellulitis, and can be caused by cuts, bug bites, and other injuries to the affected limb. Cellulitis requires the use of antibiotics quickly to prevent sepsis. Some signs of cellulitis include redness, rash and the skin may feel hot to the touch. If one thinks one may have cellulitis, a trip to the urgent care or ER is warranted. 

On the subject of compression garments, there are a few options. After a CLT-LANA measures the arm or leg for example, one can determine the size needed for a compression garment. There are prescription compression garments- some but not all -insurance companies will pay for them. They are tight and require a special "sack" to slide the garment onto the leg or arm. I tried these at first, and although some people like these and get good results, they just did not work well for me. There is another choice and it is called Active massage, by Solidea. In my opinion, the garments are more comfortable, while providing light to moderate compression with a wave type system. They are available for the arm, leg, abdomen, hand ,feet and perhaps other sites. This is my personal choice, but everyone is different of course. I think the company is working on getting insurance coverage,  but so far I have not gotten my insurance to pay for my garments. Since they are comfortable and easier to put on than the traditional prescription garments, they are a good fit for me and I do wear them almost every day. 

There are other ways to provide good self care if one has lymphedema. Wearing compression garments is one way, of course. Learning how to prevent injury ( so as not to get cellulitis),  moisturizing the skin, avoiding tight clothing- especially in the area affected, getting enough sleep, eating a good diet ( lots of veggies and fruit), reducing stress ( good luck with that one!) and including exercise, even a walk, daily are some ways to take good care of oneself. It is also helpful to get support from lymphedema groups if available to you. Talking to others with lymphedema can provide emotional support as well as finding out other ways to practice good self care. I follow a very good blog, " My Lymphedema Life" by Sue Callison, who is a breast cancer survivor herself. She provides some very good info on techniques to manage lymphedema. In the spirit of full disclosure, Sue recommends Solidea active wear garments, which I wear and prefer over the traditional prescription garments. As I stated above, everyone is different, and a traditional garment might be best for you. I do not receive any compensation for mentioning this site, but I do suggest that if one has lymphedema, it would be good to check Sue's blog out. 

So in summary, lymphedema is a chronic condition with no cure. There are new surgical techniques that may be helpful, but are not widely available. I did not include them in this blog, but if one is interested, one can check on the Mayo Clinic microsurgery website. The success rate for the surgery is 0 to 42%., according to their studies. I would like the "takeaway" from this blog to be that while lymphedema is not curable as yet, it can be managed so that there is improvement in a patient's quality of life. Lymphedema can occur anywhere lymph nodes or lymph glands are removed or damaged-  arms, legs, head, neck, etc. I think that everyone has to be their own  best patient advocate- especially concerning lymphedema. Know the signs and seek the appropriate help and treatment. 

A thyroid and breast cancer survivor's cautionary tale about having shingles...

 Back in June of 2022, I was awakened to some nasty symptoms. My scalp was burning- sort of like I had a sunburn, and there were the beginnings of red welts on my forehead, temple, and most disconcertingly,  around my left eye. Since I had been practicing pharmacy for over forty years and have talked with patients who had shingles, I had a pretty good idea of what was happening to me. One of the most important things that one can do if they suspect shingles, is to go see a doctor ASAP. The sooner one gets started on an anti-viral medication, the better the outcome. The doctor that I saw at Urgent Care also referred me to an ophthalmologist ( eye doctor) . That was because the shingles was so close to one of my eyes. Sure enough, the ophthalmologist confirmed that I did have shingles in my left eye. He upped my dose of the anti-viral that the doctor at Urgent care had prescribed, and added a steroid eye drop. I made several visits to the ophthalmologist that summer. And I took the anti -viral medication for about six weeks. The good news is that the shingles finally cleared up and I did not lose vision in that eye. 

Fast forward to September, 2023. Sadly enough, I have shingles again. I have them on the same places as before except that while they are close to my left eye again, they are not in my eye. This was confirmed yesterday by my ophthalmologist. You might be wondering, why did I not get my shingles vaccination after round one with shingles? I had read that one needs to wait until one has fully recovered from a shingles outbreak to get the vaccination. This could be anywhere from three to six months. Since it has been over a year from my first tango with shingles, I really have no excuse. Big mistake on my part, not getting the shingles vaccine before now. I am not an anti-vaxer person. I have received all of my covid vaccines as scheduled, but for some reason I just did not think that I would get shingles again. I was certainly wrong about that!

If a person has had cancer ( or two kinds, like me) or is currently in treatment for cancer, that person could be  immunocompromised. A big word that means the disease and treatment ( especially chemotherapy) has affected our white blood cells. It has been proven that a person needs a certain number of these white blood cells to successfully fight off any offenders, such as viruses, bacteria, fungi or parasites. While chemotherapy is busy killing off the cancer cells, some healthy white blood cells ( call it "friendly fire") get killed off also. Our bodies are trying to kill off the cancer cells, too, so that lowers our immunity to some of the other offenders listed above. 

The current shingles vaccine ( Shingrix) is a two shot deal. After I fully recover from shingles, I will get the first vaccine. Then, it is recommended in two to six months after the first shot, to get the second one. No vaccine provides 100% immunity from illness, but this newer vaccine provides anywhere from 68% to 97% effectiveness in the prevention of shingles. Trust me on this, YOU DO NOT WANT TO GET SHINGLES!!  

The CDC has recommended that adults 50 years and older get the two dose Shingrix vaccine. Adults 19 years of age and older who are immunocompromised due to disease and/or treatment are also encouraged to get the vaccine. The down side is, as it usually is, the cost of the vaccine. If one has medicare, the cost is covered at no charge. For adults too young for medicare, the cost is fairly expensive. A call to one's insurance company in this case would be necessary to find out how much this would cost. 

So why worry about getting shingles? Well, there is the pain- sometimes unbearable, depending on the site and how fast one gets treatment. The pain has been described as aching, burning, stabbing or shock-like. These symptoms can occur several days before the rash appears. When the rash does appear, it can progress to blisters that crust over. The rash usually lasts 7-10 days, and will heal in 2-4 weeks. Other possible symptoms of shingles include: fever, headache, light intolerance, and just a feeling of being unwell. I had all of those symptoms except for the fever. Shingles follow a nerve pathway, and can appear on the torso, arms, thighs, or head( including the eyes or nose) A serious consequence is that the pain can be LONG TERM and severe, and remain long after the rash clears. 

I am writing this blog with the hope that people, especially those who have had or currently have cancer, will talk to their physician about getting the shingles vaccine. I would not wish shingles on anyone! I hope that maybe this blog will encourage those people who have been putting off getting the vaccine ( unfortunately like I did) to get their shingles vaccine ASAP. 

How to store one's thyroid medication while on vacation- or how I did it, anyway.

 I am back! My husband and I were gone for a two month long trek across the country. We took our trusty little camper and a 90 pound German Shepherd dog along with us. We traveled almost 11,000 miles and while we had a few misadventures, it was an overall wonderful  vacation. We camped in mostly state and national parks. Most of the parks had electricity, but some did not. We have a little mini-fridge in our camper, which made keeping heat sensitive medication easier, but I had to take enough medication for two months. Levoxyl or any brand of levothyroxine is heat intolerant. That means it will lose potency and break down if stored in a heated or damp location. The somewhat " official" temperature that this medication needs to be stored at or under, is 77 degrees Fahrenheit, or 25 degrees Celsius( for those that use the metric system.)

So, I stored my stock supplies  of medications in our fridge, but I needed to take along my daily medication reminder pack with me in our truck. When we started our trip, it was cold most places that we were visiting/camping. In fact, there was lots of snow at Crater Lake, for example. My husband and I wore coats, sweaters, etc. during the first part of our trip. I felt fine taking my weekly medication container in my purse, as it was with me when we traveled and hiked. As we moved along the country, the weather warmed up and storage was a bit of an issue. I began to be concerned about the medication in my purse. Although we turned on the air conditioner when needed, the sun still heated up the car a bit. I had brought a small cooler for our lunches, so sometimes, depending on the temperatures, I put my daily reminder container in the cooler. 

Another concern was when I would take my medication. It is best if one takes their Levoxyl or other brand of levothyroxine at the same time each day. We stayed at a few campgrounds for two or three days at a time, but mostly we only spent one day. I did my best to take my medicine at the same time each day, but it was a challenge! We have a little bathroom in our camper, but it is damp in there so I could not put my daily reminder container in there. As stated above, the manufacturers recommend not storing medications in a bathroom. The dampness, and possible heat, could greatly affect the potency of thyroid medication. I could not leave it out on the counter because our dog, who is technically still a puppy ( a very large, long haired puppy who thinks everything is a toy) would have certainly chewed my container up along with my medication. Out of sight, out of mind as the saying goes. I can say that I missed only one dose of my Levoxyl, but as far as the time(s) that I took it were varied I am afraid. I did manage to always take it on an empty stomach, and wait the hour before eating. 

As it worked out, I had a doctor's appointment scheduled the week after I returned from our big trip. My T4 level was up a little (However  I am still in the suppressed range, which is what my endocrinologist wants, since I had both papillary and fairly aggressive  follicular thyroid cancer) My T3 was almost in the low range- just barely in the normal range. I have been very tired lately, and since T3 is our body's  "fuel" that may explain my fatigue. Hopefully, now that I am back home and have returned to a somewhat more normal schedule, my T3 will eventually go up a bit.

Proper storing one's thyroid hormone medication, either at home or on vacation, is very important. If our medication gets hot or damp, it will not work as well and that leaves us feeling badly. If a person is on a suppression dose, taking medication that is not potent could possibly  make that person more prone to a recurrence. So, in summary, how one stores thyroid hormone medication, and when and how it is taken is important to our health and well being. This is obviously more difficult if on vacation, especially a long one, but there are things we can do to insure a good outcome. So take that trip! Have fun but remember to store your thyroid medication correctly, and take it as close to the same time each day as possible. 

What is Phantom Breast Pain?

As I said a few years ago, I merged my thyroid cancer blog with my breast cancer blog to make sort of a " two-fer" blog. I devote most of my blogs to issues dealing with thyroid cancer, however. Mostly because I feel like there are fewer thyroid cancer blogs than breast cancer blogs. So I feel that there is a greater need for information about thyroid cancer. 

I have been experiencing some phantom breast pain for some time now. I did not know it was a "actual  thing" until recently. Any chest pain after breast cancer surgery/reconstruction should be immediately addressed with a patient's physician or surgeon, of course. When other possible causes have been ruled out, then perhaps the pain, itching, pressure, etc, can be attributed to phantom breast pain. I think that most people have heard about phantom limb pain or sensory perception in a missing limb, but as I said, I had never heard about phantom breast pain until recently. So what is it and how is it treated?

I have read that anywhere from 10% to 60% of women have phantom breast syndrome after mastectomy. Phantom breast syndrome means that a woman has the sensation of a breast ( or breasts in my case) being present after removal. This can be temporary, but up to 50 % of women have chronic breast pain after surgery for breast cancer. This pain could be a symptom of phantom breast syndrome or  nerve cell damage after surgery. 

Other phantom breast syndrome symptoms, besides pain, include the following:

* itching ( usually deep inside of the chest wall, and not relieved by itching)

*tingling

* pressure or a heavy feeling in the chest area

* a burning or stabbing sensation

* throbbing

* an electric shock type sensation

What can cause phantom breast pain or some or all of the symptoms mentioned above? The central nervous system ( the brain and spinal cord) may receive incorrect messages or signals from the damaged nerves caused by mastectomy. One study found that this syndrome may be more common in younger women and/or women who are more educated. The only reason that I can imagine that would explain why younger or more educated women may have more phantom breast pain, is that perhaps women in these groups see their doctors more often and possibly feel more comfortable discussing their symptoms to their physicians. 

Sadly, I did not have any after care, other than checkups from my surgeon and oncologist, after my breast cancer surgery and treatment. It was shocking and confusing to me to go from such structured treatments and surgery to being " on my own". What was I to do now? I have a very supportive family and group of friends, but no one understands what a breast cancer patient is feeling better than another breast cancer patient. I was not offered counseling or physical therapy of any kind after my medical treatment was completed. I felt, and still feel ( I fear that my phantom breast syndrome is chronic at this point) sensations of pain and intense itching that come and go, but have not completely resolved. The treatment options for chronic phantom breast syndrome (CPBS- my abbreviation, because I am tired of typing in the whole thing) are not any that I found suitable for me. This is not a one size fits all, so these options may work for others. They include:

* opioids in severe cases ( not ideal, as addiction is a real concern)

* anti-seizure drugs ( well known, and loved by some, include Neurontin( or gabapentin)

* antidepressants ( too many to list)

* Mexitil ( which is a medicine for abnormal hearth rhythms) not sure how this is supposed to work...

* the miscellaneous category, which include clonidine ( usually used for blood pressure) and others

There are also topical medications which have the advantage of fewer side effects; these include:

* topical lidocaine patches - please use caution here! These can affect the heart ( arrhythmias for example) and should only be used after talking to one's physician.

* Capsaicin patches( 8%)- these have FDA approval for treatment of chronic pain. As a reminder though, while they may be useful, patients should be mindful of the fact that this drug is derived from hot peppers and will bind to the skin making it difficult to wash off should the effect become too intense. 

* CBD oil- with or without the presence of THC. In some states, the topical preparation with THC is legal and in other states it is not. In my state of North Carolina, the CBD oil with THC is not legal. I am using a CBD salve without any THC. It does contain eucalyptus, lavender and beeswax and is all organic. Personally, this works fairly well for me. Of course, the action of massaging the salve into my skin may be helpful as well. 

Which brings up another important component of obtaining a better quality of life after breast cancer. Counseling- for the physical discomfort as well as for the emotional pain that breast cancer patients have to deal with. Counseling was never suggested to me. I just assumed that I needed to deal with the after effects of breast cancer on my own- in the best ways that I could. I feel very strongly that EVERY woman dealing with breast cancer should at least have the option of counseling. I have read that counseling after treatment/surgery for breast cancer may in fact increase the survival rate of some patients. 

Even though I feel that traditional medicine is the first line treatment for breast cancer, and other serious health disorders, complementary alternative therapies can be an important part of the treatment. These could include the following:

* acupuncture

*massage

*yoga

*qigong

*meditation

*music therapy

*art therapy

* pet therapy ( who does not love to pet a dog or cat? Studies have shown that petting a dog for just 15 minutes can lower blood pressure by 10% and can even lower cortisol ( which is a stress hormone) in the body. 

The above listed items are adjunct therapies- to be used along with but not in place of  traditional medical treatments. They are pleasant parts in our treatment plans to help breast cancer patients, perhaps those dealing with CPBS, obtain better quality of life and outcomes. 

Another important treatment, that may improve CPBS, as well as promote a better quality of life, is Physical therapy. This was not offered to me after my surgery for breast cancer. Some doctors feel that this is an important part of rehabilitation after breast cancer. I would have to agree with this. I would urge breast cancer patients, those with CPBS or not, to discuss a referral from their physician to a physical therapist who has experience helping breast cancer patients. 

The takeaway from this blog about Phantom breast pain is that little is known about the prevention or  treatment of this disorder. Even though I am late to the game, and have been dealing with CPBS for some time now, I am being my best own patient advocate and seeking out some effective ( or so I hope) treatment for the CPBS. I hope that by talking about this disorder, women who have been experiencing the symptoms of CPBS will seek out the appropriate help. Even better, I hope that newly diagnosed breast cancer patients will be able to recognize problems early and address their issues. 

Some reasons why thyroid cancer is NOT the " good cancer"

There are few statements that can light a fire under me as much as someone telling me that " Oh, you have  ( or had) thyroid cancer! That's the good cancer, right? Aren't you lucky? It is so easily treatable and the prognosis is great! " I had thyroid cancer in 2010, and have dealt with these comments for years. It was not too long before I put my Southern manners aside, and tried to educate others on thyroid cancer- specifically why it is not the " good cancer". 

First the obvious. the words "Cancer " and "good " usually do not belong in the same sentence! Who in the world thinks having ANY type of  cancer is a good thing? And I do not put too much faith in statistics, either. I have been told that 95% of thyroid nodules are benign. I guess that puts me in the unlucky 5%, then. 

Before discussing the types of thyroid cancer, it is important to note that the thyroid gland has two main types of cells. Follicular cells get iodine from our blood and make thyroid hormones that regulate metabolism. The other cells are called C-cells or parafollicular cells, and these make calcitonin which helps with how our bodies use calcium.

It matters what type of thyroid cancer one has insofar as diagnosis and treatment.  That is another eye opener for some people. There are at least five types of thyroid cancer ( Papillary, Follicular, Medullary, Hurthle, and Anaplastic). A person can have one or more of these types. I had both Papillary and Follicular thyroid cancer. Papillary cancer accounts for about 80% of diagnosed thyroid cancer. Follicular comes in at about 10%, while Hurthle accounts for around 3%, Medullary around 2-4% of thyroid cancer cases, and lastly, the rarest of all- Anaplastic thyroid cancer- accounts for about 2% of all cases. 

Papillary and Follicular are classified as differentiated thyroid cancer. Simply put, this means that the thyroid cancer cells retain important features of normal thyroid cells. ( before malignancy). These two types are the easiest to treat of the above five mentioned,  with Follicular being a little more challenging than Papillary. Papillary, Follicular and Hurthle thyroid cancer develop from thyroid follicular cells. Medullary thyroid cancer develops from the C-cells. Anaplastic thyroid cancer is called undifferentiated thyroid cancer. It is rare, difficult to treat, and the cancer cells do not look anything like normal thyroid gland cells. The scary thing to me is that sometimes Anaplastic thyroid cancer develops from existing papillary or follicular cancer. Maybe because this is such a rare cancer, but  there is not a lot of information about this type of thyroid cancer. I am hoping that more research will be conducted on this type. 

Treatment for differentiated thyroid cancer can include surgical removal of the thyroid gland- full or partial- possibly  along with treatment with the radioactive I-131. To simplify, these follicular  cells are involved with iodine uptake. So when one gets the I-131 after surgical removal of the thyroid gland, the only thyroid gland cells remaining will be the cancerous ones. The rogue ones, as I like to say. They gobble up the radioactive  iodine, after being deprived from the patient being on an iodine free diet, and the remaining cancer cells die. Medullary comes from the C-cells, so the I-131 is not an effective treatment for this type. Anaplastic is undifferentiated, so treatment is also challenging. 

Thyroid cancer is not a " one size fits all" kind of cancer- either in type or treatment options. After surgical removal of the cancerous thyroid, full or partial removal, thyroid supplement is necessary for the patient to feel " more normal". Herein lies the problem! Many factors influence the type of thyroid hormone that works best for the individual patient. This means many dosage adjustments as well as perhaps  types of thyroid hormone. Synthetic or naturally sourced? Does a patient need T3 supplement or not? We thyroid patients are used to rolling up our sleeves constantly for blood work, as well as enduring at least yearly ultrasounds and exams. Recurrence is always a possibility- albeit not an extremely common occurrence.

 Also, after having thyroid cancer, the American Cancer Society states that thyroid cancer patients have a slightly increased risk for having a SECOND PRIMARY cancer. These are not recurrences of the thyroid cancer, but are new, unrelated cancers. The types the ACS says that thyroid cancer patients are somewhat more at risk for are: Breast cancer ( in women), Prostate cancer, Kidney cancer and Adrenal cancer. The risk of adrenal cancer is higher in those who had medullary thyroid cancer. As a side note, I had breast cancer in 2015. I had stage 2B invasive lobular breast cancer. I had bilateral mastectomies and three months of chemotherapy. I am in remission now, thankfully. 

As I said at the first of this blog: there is no cancer that qualifies as the good cancer. There are certainly some that are more easily treatable and have a better survival rate. Personally, I am hoping for a time when all cancers can be survivable and easily treated. 

Self Care for thyroid cancer patients

 As thyroid cancer patients, we have all certainly been through a lot! Surgeries, radioactive treatments, biopsies- in fact we still go through a lot trying to maintain our health. Constant dosage adjustments with our thyroid medications so that we can feel somewhat " normal", blood work to monitor thyroglobulins ( a predictor of  possible thyroid cancer recurrence) , ultrasounds to check for thyroid cancer spread ( I call them goblins), and for me, at least, the search for a physician who will listen to how I am feeling and is willing to work with me cooperatively to maintain good health. And this is just a partial list, but certainly does help explain why thyroid cancer is NOT the good cancer!

I think that a balance of self care along with medical care is essential to good health. As we enter into a new year, it is a good idea to think about what things that we might do to improve our health and well being. The following is a list of some basic self care therapies, as well as an abbreviated explanation of how these therapies might work. While these therapies would work well for anyone,  I think that since the thyroid gland (  ours now gone missing!) controls so many of our bodily functions, self care is even more essential for those of us who have/have had thyroid cancer. 

1) Sleep. Adults are supposed to get 7 to 9 hours of good quality sleep per night. Some of the benefits of this are: better memory ( even more important as we age), better performance, lower weight gain risk( the postulated reason for this is that sleep deprivation is associated with an increase in the hormone that causes us to be hungry), reduced salt retention, reduced fatigue, better control of blood pressure by the body, and a stronger immune system. 

2) Strengthening our immune system is very important. Over 70% of our immunity is in our gut. Getting enough sleep allows our gut to get maximum nutrient absorption. Also, our gut houses the largest number of immune cells in the body. Limiting caffeine intake or large meals near bedtime allows our gut to rest and process the nutrients in the food that we eat. Which leads us to #3...

3) Eat a healthy diet! I think most people know what a healthy diet entails. But to summarize, more chicken and fish, less red meat, more fruits and vegetables, less sugar and caffeine, etc., As I mentioned above, I think the time of day that we eat is important, also. Eating an early supper lets our intestines rest, as well as having a positive effect on sleep. Win-win.

4) Exercise. Well, this is difficult to do sometimes. But exercise can reduce stress and anxiety as well as promote weight loss. Even if it is just a nice walk outside, it is very beneficial to schedule some exercise on a regular basis. Since fluctuations in thyroid medications can cause mood swings ( I know this personally!) exercise can become a non-medicated way of helping us feel better. 

5) Increase water consumption. This is so very important, folks. Adequate water intake can: help us maintain our electrolyte balance and good blood pressure, lubricate our joints, regulate our body temperature, help us keep our cells healthy,  help our brain function, aid our food digestion, improve blood oxygen circulation, help prevent kidney stones and urinary tract infections, keep our skin hydrated and may promote collagen production, and ( my personal favorite) help create saliva ! ( water is the main component of saliva) One way that is helpful to me is to use my water canteen and refill it as much as I can during the day. I carry it around the house with me and also put it on my bedside table at night. Also, I drink water with each meal. 

6) Learn to say no! Everyone deserves a little "me" time. Take a warm bath, read a book ( my personal favorite), go see a good movie, etc., Also good for one's mental health. 

7) Make friendships. I just saw a report on this and how long term friendships promote happiness. It does take time and work, but definitely worth the payoff. 

8) Go outside. Nature is the best healer. Take a walk, take deep breaths, On your walk outside you could also...

9) Take a pet with you. Studies have shown that dogs can cause humans to release oxytocin- the happiness and love hormone. So having a pet, especially a dog, is good for your health. 

10) Organize your home and work space ( as much as you can). I know that I feel much more relaxed and happy when my home is organized. Of course, small children and pets put some limits on this(!), but do what you can.

11) Cooking meals at home- even once a week- is not only good family time, but a thoughtful and healthy  meal at home is better than a" McMeal" any day. 

12) Practice deep breathing. This can help reduce stress, lower blood pressure, lessen PTSD symptoms, increase lung function- thereby enabling the lungs to clear out toxins and deliver oxygen into the blood stream more efficiently. There are videos out there that can help one learn deep breathing techniques. I have been working on this for a while now. When I had my knee revision surgery, I had been practicing deep breathing a few months before the surgery so that my body could clear out the anesthesia more effectively. And it worked for me. Deep breathing also helps to calm me during stressful situations. This sounds so simple, but it really works, if done properly and consistently. 

Of course, there are many more things one could do for good self care. What I have listed here are just a few that interest me. I hope that by practicing these or other positive techniques, we thyroid cancer patients ( and others) can live better, healthier, and happier lives. 

September is Thyroid Cancer Awareness month. Here are a few things that I have learned over the past twelve years...

In 2010, I was diagnosed with stage three Papillary with Follicular variant thyroid cancer. I had a total thyroidectomy, with eleven lymph nodes and two cancerous parathyroid glands removed. A couple of months after my surgery, I had a quite large dose of the I-131 so that this would hopefully kill any remaining cancerous "rogue" thyroid cancer cells. I am happy to say that I am still in remission, thanks in great part to a wonderful endocrinologist. Here are some things that I have learned over the past twelve years. Everyone's experience is different, but I hope that by sharing what I have learned, I might help someone else on their journey.

1) No, this is not the " good cancer"!! Yes, it is usually very treatable, and survival rates are good- especially for the differentiated thyroid cancers ( DTC), which include Papillary and Follicular. The reason this is not the " good cancer" is, well, it is cancer! No cancers can be described as good. With thyroid cancer there is constant monitoring and testing , constant dosage changes, various symptoms that can  happen to a person without a thyroid ( remember- the thyroid gland controls EVERYTHING) and the worry of recurrence. One might say that thyroid cancer has a lot of baggage. Anyone, at any age can have thyroid cancer. It does not discriminate, and most of the time it is difficult, if not impossible, to pinpoint the cause(s) of thyroid cancer. I have an idea of  how I might have been predisposed to thyroid cancer, but for the most part, I try not to dwell on this. My main focus is trying to take care of myself and keeping up with my tests,etc. which leads to #2...

2) Keeping a copy of all blood work, tests, surgeries, treatments, etc,. has been invaluable to me. I have a notebook set aside for my records. Remember, these are YOUR records. In the past, I asked my doctors' offices for copies. Now, with patient portals, I can view and print my test results. This makes it easier for everyone, I think. As an example, a few years ago my endocrinologist was changing computer systems. There was an important test that my doctor wanted to look at, but it was missing from my chart. I had a copy of the test ( sometimes I carried my notebook with me and this was one of those times) and was able to pass it along to my doctor. 

3) If one feels like something is wrong, it probably is. Five years before my thyroid cancer diagnosis, I was seeing a different endocrinologist. I told him that I was extremely tired and had no energy. He told me that it was "stress" and he did not order any additional tests to check things out. I did not feel good about this and sought a second opinion.  I was lucky enough to find my endocrinologist who was my doctor for 20 plus years. When I told her how I was feeling, she ordered blood work and then did a biopsy- the rest is history, of course. In other words, do not hesitate to speak up for yourself and/or seek another opinion if you feel that something is "off".

4) There is a link between thyroid cancer and breast cancer. I was diagnosed with invasive lobular breast cancer in 2015. I am currently in remission, and hopefully will stay there. I am not relating this to scare anyone, I would just like to remind everyone who has had thyroid cancer to be sure to get a mammogram as scheduled. Of course, it works both ways. If one has had breast cancer first, one should get a neck check and report any unusual symptoms to the doctor. Early detection for both cancers is the key.

5) I would say that anyone who has had cancer has a somewhat  compromised immune system. It is important to get all recommended vaccines, as we are probably more susceptible to getting sick. I can not say enough about how important getting enough sleep and eating good food is. Our bodies repair themselves at night, and we also need good food to nourish ourselves. Sounds simple, but sometimes hard to accomplish. 

6) I have found " my people" online, in cancer support groups. No one knows how it feels to have had cancer like another cancer patient. Talking to others, albeit online or in person, helps relieve stress and improve our mental health . Our families and friends  can be a great source of support and love, too. I do not think being stoic and not asking for help is productive. Do not be afraid to reach out to others. Your experiences may just help others as well.

7) The most important thing that I have learned from thyroid ( and breast) cancer is to be YOUR OWN BEST  PATIENT ADVOCATE!  I have said this many times, but do not be afraid to ask questions, voice any concerns, and  get a second ( or third or fourth) opinion if necessary. It is hard sometimes- this spoken by a person who had to try FOUR times, after my previous endocrinologist retired, to get an endocrinologist who was a good fit for me. What was important for me ( and I made a list of pros and cons) was that the doctor was open to hearing how I was feeling  and would take my concerns seriously. While I realize the importance of blood work values,  I am not just a set of numbers! I need to be able to discuss results and treatment plans with my doctor. I did not want a doctor to "dumb it down" or make decisions without my input. I have been dealing with thyroid cancer for twelve years, and I know a few things about having it! Having finally found a doctor who is a good fit for me, I can feel confident in his treatment plan for me. 

I am sure that I left something out in my list of the important things that I have learned about having thyroid cancer. But for those people reading my blog, just remember that #7 is the most important advice that I could give anyone. Best wishes and good health to all thyroid and breast cancer patients out there. You are not alone- we are in this together. May we all be able to help others, and may we all have continued good health. 

This is a good news- bad news post, or one could call it a " cautionary tale".

It has been a while since I posted a blog! Summer has been a busy, but unusual one for me. I have had the pleasure of taking care of our grandchildren, two of them while their parents took a vacation, and at times, all four! This has been enjoyable, but let's just say that I am not as young as I used to be. I certainly was ready for a rest after they returned home. I was and still am dealing with some health issues... but first the good news. 

After several tries, I have finally found an endocrinologist who will listen to me. When I write " be your own best patient advocate" I truly mean it. It took me four tries to find someone who had a similar way of practicing- as compared to my long time endocrinologist who recently retired. I had almost given up on finding someone that would be a good fit for me. But I persevered, as the saying goes. My new endocrinologist actually listened to what I had to say- how I am feeling and my expectations for treatment going forward. He upped my dose on the thyroid hormone I am taking, and I feel much better. I can actually get through the day without taking a nap- which has been useful this summer especially. ( Not all of my grandchildren nap)  This is the good news I wanted to write about. Now, for the bad news...

Some of us who have had thyroid cancer, or possibly, have a thyroid condition  ( Hashimoto's, etc) can be somewhat immunocompromised. That is to say that our immune systems do not function as well as they do in a healthy person. I feel very fortunate that I have not had, so far at least , Covid. I have had all vaccines and booster shots and have worn a KN-95 mask when I go shopping. I have been as careful as I can be, but I feel like a little luck may be involved at this point.

What I unfortunately have had, and still have, is shingles. The main reason that I wrote this blog is to strongly encourage thyroid cancer patients 50 years and older to get the shingles vaccine. Shingles has been very painful for me and if by sharing this information I can prevent even one person from getting shingles, I will be happy. Shingles generally lasts from 3 to 5 weeks, although it can last for months. I have had shingles for 3 weeks now, and I am not over this yet. I have it on my scalp, eyebrow, forehead, and here is the tricky part- in one of  my eyes. I have been going to the ophthalmologist once or twice a week since my diagnosis. I first went to urgent care, and then was instructed to go immediately to my ophthalmologist if my eye became itchy, red or painful. Luckily, I got an early diagnosis, and was able to start on the anti-viral tablets and an eye ointment to help a little with the itching. 

The old shingles vaccine was only from 30 to 50 % effective. The new vaccine, called Shingrix, is over 90 % effective. It is a two shot vaccine, the second vaccine is administered six months after the first one. Since it is possible for me to have shingles again in the future, I am going to get the vaccine just as soon as I recover from  having shingles. From what I have read, I should be able to get the vaccine in 4 to 6 months from now. It is also possible to go into your neighborhood pharmacy to get your shingles vaccine. One does not need to go to the doctor to get this vaccine unless one wants to do that.

While it is extremely important to get our Covid vaccines and boosters, I think, it is just as important to get other vaccines as scheduled. It is also important to get our recommended  screening tests such as mammograms and colonoscopies. We all want to be as healthy as possible. Getting our vaccines and screening tests are like maintenance for our bodies. 

Please learn from my mistake! As my new endocrinologist said, "Health professionals are sometimes the worst patients. They take care of their patients but neglect to take care of themselves." So if you qualify for the shingles vaccine, please get it as soon as you can. If one has had chicken pox as a child, one has the virus in the body. Stress usually causes the virus to become active and the resulting cause could be a case of shingles. We all have a lot of stress to deal with. Be smart- get your shingles vaccine.

The link between high cholesterol and TSH levels in patients after total thyroidectomy

 I have long suspected a link between my TSH levels and my cholesterol levels. WebMD states that " If you have thyroid disease, you're more prone to have high cholesterol levels. In fact, as many as 13% of people who have hypothyroidism will also have high levels of " bad" LDL cholesterol. Hypothyroidism is also linked with too high levels of triglycerides( blood fats that are associated with cholesterol). Both of these issues increase your risk for heart disease and stroke."

OK, here  is my proof! Well, part of it. I was curious about cancer patients, like me, who had a total thyroidectomy and had to depend on thyroid hormone replacement. How do our TSH levels affect our cholesterol? I found a ground breaking study ( well, to me, anyway) about differentiated thyroid cancer ( this includes papillary and follicular and is abbreviated, DTC) and the association between TSH ( thyroid stimulating hormone) and high cholesterol levels. The name of the study is " Association between Thyroid Stimulating Hormone level after Total Thyroidectomy and Hypercholesterolemia in Female Patients with Differentiated Thyroid Cancer: A Retrospective Study." This study was published in the Journal of Clinical Medicine on 2019 Aug: 8(8): 1106 and is authored by: Young Ki Lee, Hokyou Lee, and others. The information that I will provide in this blog is from this study. 

At first, physicians kept thyroid cancer patients' TSH completely suppressed- which means essentially zero. This was done so that hopefully no rogue thyroid cancer cells could be "awakened" and lead to spread- either in the neck bed or other places in the body. In patients where concerns over recurrence were fairly low, the general treatment protocols changed. Instead of keeping the TSH at near zero, it was decided ( who decides these things?) that it would be best to let the patient's TSH creep back up to within the normal range. This study found that these patients who achieved normal TSH levels after thyroidectomy, also had high cholesterol values. Fun fact: thyroid hormones help the liver process the cholesterol in the blood stream. If thyroid hormone levels are low, the blood is processed less efficiently, so the cholesterol can increase. If there is anyone out there who does not know this already, high cholesterol can cause heart disease and stroke for starters. 

One of the biggest take aways ( at least for me)  from the article cited above was that " normal " TSH levels could lead to high cholesterol due to insufficient replacement of thyroid medication. In other words, normal TSH levels are not an indicator by themselves as to what would be  a correct thyroid replacement dose. It is important to look at serum cholesterol levels as an additional marker in the determination of a proper thyroid hormone dose.  The study also mentioned the fact that a patient with "normal" TSH values could actually be hypothyroid due to T3 deficiency. More on this fact at the exciting conclusion of this blog!

So, we have learned that the higher the TSH, the more likely the patient is to have higher total cholesterol or LDL cholesterol. At this point, you may be wondering about exact blood values for TSH. What is considered " normal", high, low, or optimal. When one has blood work done, there are slight variations in the level- from lab to lab. I am citing the values that were used in this study. Obviously, there will be some variation, but this is a pretty tight range. 

TSH values from 0.3-2.0 mIU/L were associated with 1.86 to 5.08 times higher odds for having high cholesterol. This was considered a moderate or normal level in this study.

TSH values from 2.0-5.0 mIU/L were associated with 2.85 to 6.95 times higher odds for having high cholesterol. This was considered a high TSH in this study.

TSH levels of less than 0.02mIU/L in patients were  associated with higher cardiovascular mortality values. This was considered a low TSH in this study.

Basically, too low is potentially harmful as is too high when looking at TSH values. Where is the sweet spot? According to this study it is, drum roll please:

A mildly suppressed TSH level of 0.03-0.3 mIU/L may be the optimal value ( aka, sweet spot)  to have to minimize cardiovascular events and keep that darn cholesterol down where it should be!

I am seeing a new endocrinologist next week. ( Side note: yes, I am still searching for that special endocrinologist who is a good fit for me. I have yet to find a physician like my old endocrinologist who retired a few years ago ) .I am going to take this study with me and talk with my new physician about it. My previous endocrinologist ( not my retired one)  lowered the dose of my levoxyl and I do not feel well! My T3 is down, while my T4 is within normal range. My TSH , measured a month or so ago, was 0.8. I feel that it is higher now as I am having hypothyroid symptoms. I do not need to explain what these are to any thyroid cancer patient! 

After reading this study, I would like for my lab results to be in the above mentioned " sweet spot" range. I  have not had my cholesterol checked in a while, but I do know that in the not so distant past, my cholesterol was creeping up. It was higher than it had been before I had my thyroidectomy. The  hypothyroid  symptoms that I have been experiencing are impacting the quality of my life. And I certainly do not want my cholesterol to get out of control!  Hopefully, studies like this may help more physicians to realize that there is a optimal range or sweet spot for TSH so as to prevent  recurrence, being able to keep  cholesterol at a healthy level, and enabling the patient to feel  as " normal" as possible. I am hoping that there  will be some juggling  or dose adjustments of my thyroid dose coming up. There will probably  be more blood work, but I am willing to undertake this. I just need to find an endocrinologist who is willing to take that journey with me. 

The Thyroid and liver connection- especially regarding liver function test results

 I have long wondered about a possible connection between thyroid disorders and liver function tests. The following  is anecdotal evidence, primarily involving myself and another family member ( who shall remain nameless). When all was well in thyroid test/function land, our liver enzymes were in the normal range. However, when I or this other unnamed individual had a dosage change or were feeling poorly, i.e, in the very  hypothyroid range, our liver enzymes were elevated. I have also read comments on other thyroid cancer websites expressing the same concern- or, " my thyroid function tests are indicating a very hypo condition, and my liver enzymes tests are elevated. Is there a connection?"

It was difficult for me to find credible, emphasis on the word credible, sources on the relationship between the thyroid and the liver. This is the best quote that I found concerning thyroid and liver function: " A complex relationship exists between thyroid and liver in health and disease. Liver plays an essential physiological role in thyroid hormone activation and inactivation, transport and metabolism. Conversely, thyroid hormones affect activities of hepatocytes and hepatic metabolism. " This quote is from an article published in Endocrinol Invest. 2020 July; 43(7): 885-899 by E. Piantanida, S. Ippolito, D. Gallo and others. In other words, if one has trouble with the thyroid gland, there may be some problems with the liver and vice-visa.

So as not to alarm anyone,  I did find an article specific to the relationship of liver function tests and thyroid function tests. This article came to the conclusion that both hypothyroidism and hyperthyroidism can affect liver function tests. The objective of this study was to try to determine if there is a correlation between the  effect of thyroid dysfunction on liver function tests. So, basically, both liver function tests and thyroid function tests can be affected by the other. Abnormal readings may indicate disease in either organ, or it may not. At the end of one of the papers I read there was a blanket statement that " more studies are needed, and so on..." I always assume that more studies are needed on just about everything! Our thyroid glands affect every single organ in the body. That little butterfly shaped organ sure can cause a lot of trouble for those of us who have had thyroid cancer or have thyroid disease of any type. 

I, along with my family member, have long noted the relationship between how well we are doing with our thyroid function and the results from liver function tests. For me personally, I try to pay extra  close attention to my liver function tests due to the fact that I do not have a thyroid gland. I depend solely on my thyroid hormone  medication to keep my body functioning properly. When my last ( latest) endocrinologist reduced my thyroid hormone dosage, I worried about how it would affect my liver enzymes. I am having blood work this week ( for another reason) , but I  will ask my family physician to please check my liver enzymes as well as my thyroid function tests. 

I do not see my new endocrinologist until the middle of next month. I am not sure what she will do as far as adjusting my thyroid hormone dose, as this will be the first time that I have seen this endocrinologist. I am hoping that this physician will discuss my treatment plan  with me and listen to my concerns. I have a list of objectives to discuss with this physician- on what I would like done in regards to my treatment. I understand that this endocrinologist is the expert- but like with  my endocrinologist who recently retired- I want to be able to discuss how I am feeling and treatment options before any medication changes are made. In my opinion, the doctor patient relationship should be a partnership. I really appreciate a physician who listens to how I am feeling, and takes that under consideration along with the lab result numbers. As I have often said, we thyroid cancer patients are not just a set of numbers. We have feelings and ideas about our treatments and what works best for us. 

To recap, it has been my experience, and from other anecdotal reports, that being hypothyroid can indeed manifest in somewhat higher than normal liver function tests. Of course, one must consult with one's physician to rule out any liver disease or thyroid disease. Living without a thyroid is sort of a "tightrope walking" experience. The slightest changes in thyroid hormone dose can impact how a patient feels. I think the majority of thyroid cancer patients have had several dose changes over the course of our disease. It does take a period of time to adjust to these changes, but sometimes another dosage change or even changing the type of thyroid hormone drug prescribed, is necessary for us to feel well.  

Getting a second, third or maybe even a fourth opinion

People who have been reading my blogs lately, and thank you if this includes you!, may have noticed that I am still  searching for an endocrinologist that is a good fit for me. My endocrinologist of over 20 years retired recently, and I have been searching for, to be honest, someone just like her. She was intelligent, kind, sensible, explained the reasons for treatments, and was  easy to talk to. She did not sit behind a big desk and lecture on what she was going to do. She sat beside me and we discussed my blood work, and there was a little give and take. She respected my opinion, and while the final decision was hers, she was willing to compromise if I felt strongly about matters concerning my treatment. Is this too much to ask of a physician? I am beginning to think that it might be. Of course, another gold star for her was that while another endocrinologist just dismissed my concerns as " stress", she actually believed me when I told her something was not right. My " near saintly" endocrinologist did a biopsy and found my thyroid cancer. I was already stage three, and had I not found out when I did, things could have been a whole lot worse for me. 

What I find works best for me is having my blood work done the week ahead of my office visit. Then, my endocrinologist and I can discuss the results from my blood work and  she can make any changes on my dose/treatment  based on the blood test results and how I am feeling. This is yet another gold star- that my previous physician made decisions not only on the blood work, but how I was actually feeling. I have often said that thyroid patients are not just a bunch of numbers. It is important to do blood tests, of course, but how we are feeling is very important also.

The endocrinologist that I am seeing now ( for the present time, anyway) called in a lower dose of my thyroid medication. She did not talk to me about lowering the dose, and I was surprised when I picked up my prescription. I did contact her about this, and she provided a reasonable explanation of why she went down on my dose. I would have liked to have had some type of discussion before I found out when I went to pick up my refill. I think most of us do not like to go down on our dosage. It takes a few weeks for our bodies to adjust to a lower dose. If you think about it, unlike those who are hypothyroid and have at least half of their thyroid gland, those of us who do not have a thyroid depend 100% on our thyroid medication to survive. Changes in our dosages really can impact our quality of life- to be dramatic. 

So, I have another appointment to see another  new endocrinologist next month. This endocrinologist specializes in thyroid cancer treatment. I have read good patient reviews about her, and am hopeful this will be a better choice for me. It is NOT easy to get second, third, fourth, etc. opinions. It is necessary to have a good doctor-patient relationship, however. While I am  not actually expecting to find a physician that is exactly like my former endocrinologist, I feel that it is important to see someone who meets my expectations. I know what kind of endocrinologist that I would like, I just have to locate her/him. I feel that I owe it to myself, as well as my family, to find someone who can give me the care that I need to thrive, not just survive. 

I will of course write another blog about my experience after my appointment. I am planning on taking a list of questions, and my expectations with me to my appointment. I think that it is important, and really only fair, that the physician knows what I am looking for. Also, hopefully the new endocrinologist will understand that I want to have an active role in my treatment.  I am so hoping that this time will be the charm! 

Can there be PTSD in Cancer patients? If so, what is it and how can it be diagnosed?

 When one hears the term, PTSD or Posttraumatic Stress Disorder, one immediately thinks of a person who has suffered a traumatic injury in combat. Lately there has been interest from the medical profession in PTSD among patients who have/had cancer. Sometimes this is referred to as CR-PTSD ( Cancer related posttraumatic stress disorder). 

No one wants to have the "Big C." A cancer diagnosis can cause fear, physical and emotional suffering, a strain on financial stability, as well as alienation from family and friends. When the word "Cancer" is used, chemotherapy, hair loss, nausea and vomiting, grueling treatments, physical impairment as well as other scary thoughts come to mind. Sometimes there is even a stigma associated with cancer- perhaps the location of the cancer or making the incorrect assumption that the patient was a smoker, a heavy alcohol user, etc. 

With thyroid cancer, as many if not all of us know, we have to deal with hearing that our cancer is "the Good cancer". This marginalizes our cancer, as well as our feelings about having the disease, treatment and outcomes. Personally, I used to sort of agree and go on when someone said this to me. Now, I do not suffer fools, one might say. I am not impolite, but I will point out  that  while thyroid cancer is generally easily treated, and outcomes are generally good, THERE IS NO GOOD CANCER! Outcomes and treatment for thyroid cancer depend on the type(s) of thyroid cancer one has. Unless you have/had thyroid cancer, a person probably has no idea that there are several types, around 5 I think. 

According to the American Cancer Society, thyroid cancer patients have about a 33% increased risk of developing a second primary cancer. ( In my case, this was breast cancer). While this is an anxiety creating statistic, early detection is key to good outcomes. The best way to deal with this is to have all recommended screening tests ( mammogram, colonoscopy, etc. ) on a regular basis. 

CR-PTSD, like PTSD, is basically caused by the failure to recover from a traumatic event. Some symptoms of CR-PTSD are as follows: nightmares, reliving the event over and over, heart palpitations, shortness of breath, pain in a mastectomy scar ( or other location), chemotherapy related nausea and or vomiting. Patients suffering from CR-PTSD can experience anxiety, fear, irritability, and the feeling of being emotionally numb- or detached from the situation. This detachment  can cause isolation and disengagement. 

Patients with CR-PTSD or PTSD, react to certain cues or triggers, which may be non-life threatening ones, but somehow related to the cancer experience. To sum this up simply, the amygdala part of the brain is in a state of hyper-arousal, and can not tell the difference between dangerous and non-dangerous events. I will use myself as an example. When I was receiving chemotherapy for breast cancer, I usually went to the restroom after checking in. The anti-bacterial hand soap had a strong fragrance that was very unpleasant to me. That triggered the "chemotherapy nausea/vomiting" cue that still remains- six years after my chemotherapy was completed. Even when I am returning for a checkup and blood work, just getting the slightest whiff of the hand soap  triggers my nausea ( and occasionally vomiting). 

According to a report in the Canadian Oncology Nursing Journal, 2019 Spring issue, "PTSD symptoms are considered pathological when they persist for more than one month post-trauma". The article also stated that " PTSD is often misdiagnosed as anxiety or depression. This makes treating the PTSD challenging to recognize and treat."

According to the above mentioned journal article, CR-PTSD can negatively impact patients health, treatment and quality of life. Someone with PTSD could purposely  miss doctor's appointments, fail to complete treatments, avoid routine health screening tests, avoid social interaction with friends- so the person does not have to talk about the cancer. These behaviors can actually affect overall survival of the patient. 

A good take-away statement from this article is as follows: " Cancer related PTSD is often missed by a patient's clinical team, and can impact treatment outcomes, recovery, and quality of life post-treatment. The prevalence of PTSD is greater post-cancer compared to the general population." 

The authors of this study recommended that patients with CR-PTSD be referred to a specialist who is trained in treating patients with PTSD. In researching this subject, I found that the statistics concerning how many patients have  CR-PTSD to be wildly different. For that reason, I have not included any specific percentages, just the above mentioned prevalence of PTSD in cancer patients. 

Personally, my CR-PTSD is fairly mild and seems to be improving a bit. I have a tendency to be anxious- even before I had two cancer diagnoses. I am sleeping better overall, but there is one thing I can not abide. That would be the anti-bacterial hand  soap in my Oncologist's office! 

Seriously, if one suspects CR-PTSD, please discuss this with your Oncologist, PCP or other health care specialist. This is a real disorder, brought on by cancer induced trauma. There is no shame in having CR-PTSD. Treatment is key- please seek treatment for a better quality of life.

Changing seasons brings challenges for thyroid cancer patients...ho,ho,ho.

 First off, I have not written a blog in quite some time! This is partially  due to the demands of the holiday season. I love having my family visit, but there is quite a bit of preparation required when one has family members and friends over to visit . It is wonderful being able to have some " safe" family and friend  time again, but it does require some work and planning. This involves the first challenge that I am going to talk about: fatigue.

It is difficult for anyone with  a thyroid to imagine how much fatigue a thyroid cancer patient can be dealing with. No matter how good a thyroid replacement drug may be, medication  can never completely duplicate the hormones made by a fully functioning ( or present) thyroid gland. Before thyroid cancer, I could push through being tired to accomplish whatever tasks that needed to be done; and we do have extra tasks during the holidays. We may enjoy them, they may be joyful, but they also may be over the top energy wise. I will  hit a wall, so to speak, at times. I just can not make myself go past a certain point. My family understands this, for the most part, but no one understands like another thyroid cancer patient! I wish that I had the "magic remedy" for this, but sadly, I do not. One thing that needs to be considered, of course, is your thyroid blood work. Is your TSH, T4, T3, etc., levels within normal ranges? You need to have this discussion with your physician of course. Also,  trying to get more rest (!) and enlisting help from friends and family are about the best things that one can do. And please remember to be patient with yourself.  All one can do is one's best. 

I am dealing with a new endocrinologist now, and trying to decide if this is a good fit for me. I have not made up my mind as yet. I have been searching for a while, and though I know that I will most likely  never be able to replace my former endocrinologist, who every day  is becoming more and more of  a "saint", I would like to find one that I can work with. I want a doctor who listens to how I am feeling, does not only look at the numbers on my lab reports, and is willing to spend a little time with me during office visits. I am taking my own advice about being my best patient advocate, but finding a good physician is definitely more challenging now. More doctors have retired, increasing the work load on physicians who are still working. The endocrinologist that I am seeing now has reduced the dose of my thyroid replacement hormone. Yes, the dreaded " going down on  the dose" syndrome. Almost every thyroid cancer patient knows the fatigue that one has when our doctor changes our dose. My TSH was too low, so she reduced the dose without discussion. We have communicated via email, which helped, but I would like to have had the opportunity to discuss this change of dose in person. I have an earlier blog on TSH- suppressed or not- during treatment for thyroid cancer if anyone cares to look back through my blogs for more information. While reducing the dose of my thyroid hormone replacement medication may be the best thing for me overall, it is adding quite a bit of extra fatigue to my holidays.

A second challenge brought on by the winter season is dry, itchy skin. When the regulatory hormones produced by the thyroid decrease ( as in hypothyroidism) or disappear ( due to thyroid loss) one problem is dry, itchy skin. What can one do? There are several ideas to help our skin during this cold, winter season. Along with low or missing thyroid regulatory hormones, we are having to use heat- which also dries out our skin. Here is a list of some ideas that may help our dry, itchy skin:

* Find a good skin moisturizer. Creams in a tub are a better choice than those with a pump. I was not aware of this until lately, but those that are dispensed by a pump contain alcohol and other additives which are used to get the cream to flow through the pump. The alcohol and other additives may dry out the skin even more. Creams with ammonium lactate or urea (keratolytic agents) help remove the dead , flaky layer of the skin. These allow for the moisturizing agents in the cream to get deeper into the skin layers. Another choice is coconut oil- a natural oil. I have tried the coconut oil, and use it occasionally, but it is a little messy for me. If you use this, apply after bathing when skin is a little warm, allow to dry a little, then remove excess with a towel. It is effective, just requires a little more effort. I do not recommend petroleum based products, as I feel they are not good for the environment and may be somewhat harmful in the long run. This is just my opinion, though. 

* Use  very mild, fragrance free cleansers/soap that contain emollients. Soaps can be very drying and can contain alcohol and other chemicals that may dry out or irritate the skin. For reference, I use a natural soap that contains goat's milk, shea butter, argan oil and dead sea minerals. It is very lightly scented with natural lavender oil, but it does not bother my sensitive skin. In fact, I find this soap very soothing.  I also like organic soaps- as long as they do not contain strong fragrance. 

* Keep bathing/shower time as short as possible and use warm, not hot water. This one is extremely hard for me, as I like longer showers with water leaning towards the hotter side! Just do your best with this one...

* Use a humidifier to add moisture back into the air. Good idea, but one must keep the humidifier clean to prevent mold, so there is a small price to pay. 

* probably one of the most important things to do: DRINK LOTS OF WATER! I do not have a problem with this one. I have found that using a thermos, and carrying it around with me during the day at home, taking it in the car, and leaving it beside my bedside table at night is a great way to easily have water available all throughout the day. What happens on the inside of our bodies is reflected on the outside, I think. 

And finally, if all else fails, and the itching becomes unbearable, or a rash develops, see a dermatologist. There are prescription creams available that might help. This is a wonderful time of the year! Try to enjoy the changing of the season and get as much rest as possible. Good skin care is so very important, too. Happy Holidays to everyone- which ever holiday one celebrates. And here's to a better and healthier New Year.

A " pink" blog for October

I am a thyroid cancer survivor, and a breast cancer survivor. Those who read my blog will know this already. When I started my thyroid cancer blog, eleven years ago, I had no idea that I would be diagnosed with breast cancer 5 years later. After my breast cancer diagnosis,  I tried writing a second blog- a breast cancer blog- but decided that it was just too much to juggle. My solution has been to write a sort of " twofer" blog and incorporate information on both thyroid cancer  and breast cancer. I do focus primarily on thyroid cancer, as there are already a lot of breast cancer blogs. I also feel like perhaps there is more information out there on breast cancer as compared to thyroid cancer. But in honor of October being National Breast Cancer Awareness month, I am going to provide a little more information on breast cancer .

The American Cancer Society, as well as other publications, have noted a link between developing breast cancer and thyroid cancer. I have just read an intriguing article on this link, which I would like to share. The source is from the AACR ( American Association for Cancer Research) which publishes a magazine called: Cancer Epidemiology Biomarkers and Prevention. This is from an article called: " A linkage between thyroid and breast cancer: A common etiology?" The authors of this study are Bolf, Sprague, and Carr. The article was published in April of 2019. I checked for updates, and the article is still current with no changes noted. These are the key takeaways that I got from this article:

* there is an increased risk in having both breast and thyroid cancer

* there are probably some genetic variants that link these two cancers

* hormonal signaling from the thyroid gland and from estrogen may play a role in these cancers

* lifestyle and environmental factors also may play a role in development of both cancers

* there is a " critical need" for more studies to aid in the diagnosis and clinical management of both diseases

*women with breast cancer are 2-fold more likely to develop future thyroid cancer

* women with thyroid cancer have a 67% greater chance of developing breast cancer than the general population.

* estrogen is implicated in the development of thyroid cancer and may explain why women develop the disease roughly four times the rate that men do.

* the etiology of these cancers and possible causative factors are at an "infancy" stage and are just beginning to be studied. Further studies are needed.

* we need to determine which tumorigenic pathways are common to both breast and thyroid cancer.

* we need studies that use public databases to explore extensive cross comparisons. 

Just from my own personal experience, and from reading posts in several other thyroid cancer sites, I have come to the conclusion that yes, there is a connection between developing both thyroid and breast cancer. The conclusion to the article above was that more studies need to be conducted to determine common causes and preventative measures. I did not have this information after I was diagnosed with thyroid cancer. I am writing this not to scare anyone, but to heartily encourage regular mammograms and thyroid neck checks. I have always had regular mammograms. I am positive that I am still here because I had my mammograms. As far as the thyroid cancer goes, my physician was monitoring my thyroid nodules, and did a biopsy when they began to enlarge. Had I known at the time  my thyroid cancer was diagnosed, that I was at increased risk( 67%) of developing breast cancer, I would have insisted on mammograms and ultrasounds every six months instead of yearly. My outcome would probably have been the same, but perhaps I would have had a lower stage breast cancer. Again, this is not information to alarm, but rather to encourage regular mammograms and self check- of breasts and the neck. 

Wearing pink is good, but ladies, please check your necks! And do not hesitate to see your physician if you feel a lump in your neck or your breast. Knowledge is empowering and lifesaving. Regular mammograms and self checking of the breasts and neck area are our best tools against cancer. Early detection is key to a positive outcome. 

September is Thyroid Cancer survivor month... here's a few things that I have learned over the past eleven years.

This blog sort of expands on the topic of my last blog," aftercare after thyroid cancer, aka, what now?" Up until very recently, thyroid cancer was the most rapidly increasing cancer in the United States. This was possibly due to increased detection, namely  MRI and CT scans. When testing for other conditions, sometimes a small thyroid cancer nodule would be detected at the same time, for instance. When I read this statistic from the American Cancer Society, of course, me being me, I had to find out what the fastest growing cancer in the United States is now. Well, it is primary liver cancer- in both men and women. ( with thyroid cancer, women are three times more likely to have thyroid cancer as compared to men.) 

Here are a few statistics from the American Cancer Society concerning thyroid cancer:

* in 2021, there have been around 44,280 new cases of thyroid cancer ( 12,150 in men, and 32,130 in women)

* there have been around 2,200 deaths from thyroid cancer.( in 2021)

*the death rate from thyroid cancer has increased slightly, from 2009 to 2018; up about 0.6% per year.

* thyroid cancer is commonly diagnosed at a younger age than most other adult cancers. 

From reader comments in other thyroid cancer websites, I have seen some confusion about recurrence of thyroid cancer, and the development of a second cancer. By definition, recurrence is thyroid cancer that returns after the completion of treatment. In contrast, a new unrelated cancer that is detected after one has thyroid cancer is called a second cancer. 

People who have had thyroid cancer may have an increased risk of developing these second cancers:

* breast cancer ( in women)

*prostate cancer

*kidney cancer

*adrenal cancer ( side note: for patients who have had medullary thyroid cancer, you might be at an even higher risk of developing this cancer)

Patients treated with RAI ( I-131) for thyroid cancer, usually after surgery, also have an increased risk of developing these secondary cancers:

* acute lymphocytic leukemia ( ALL)

*stomach cancer

*salivary gland cancer

Follow up appointments are key!! Since most thyroid cancers are slow growing, there is a risk of recurrence even 10 to 20 years after initial treatment. Let that statistic sink in! 

In my case, I had papillary with follicular variant, stage 3, thyroid cancer. For three and a half years, my thyroglobulin level  stayed elevated. I had a high dose of the RAI ( 155 milicuries of I-131) along with complete removal of my thyroid gland and eleven lymph nodes. While no cancer was detected in my lymph nodes, two of my parathyroid glands were cancerous and had to be removed. Also, the tumors had burst open and spilled out into the lymphatic system in my neck bed. My endocrinologist has been amazing over the years. I have had bi-annual ultrasounds, blood work and office visits. While this has been stressful ( test anxiety) I appreciate the good care that I have received. My wonderful endocrinologist has recently retired, and I am presently searching for a new physician who will monitor me, at least annually, and take my concerns seriously. 

Five years after my thyroid cancer, I developed a second cancer. Breast cancer- namely,  invasive lobular, stage 2B. I had bilateral mastectomies and 3 months of chemotherapy, and am in remission from this cancer as well. I have always had my yearly mammograms; so very thankful that the breast cancer was detected fairly early on. I am writing about this not to scare anyone, just to urge women to PLEASE get yearly mammograms and other tests that might be appropriate. Early detection is key to best outcomes.

So here is a list of the things that I consider most important for good care/management of any cancer:

* Keep records of all tests, office visits, procedures, etc. I have found this to be so beneficial over the years- both to myself and other physicians that I have seen. I have a special notebook for these records.

* Be informed! Do  your research on the type of cancer that you have been diagnosed with. Read reviews of physicians and surgeons before you make any decisions on what care would be best for you. Ask as many questions as you can. Take the list of questions with you  when visiting the doctor.  There are some excellent books out there providing good information on thyroid cancer, as well as good websites- ThyCa, and  the American Cancer Society- just to name two. 

* Be  your own best patient advocate! This is hard to do sometimes, but if something does not feel right, it probably is not. 

* If one does not have a good support system, there are some excellent support  groups online ( maybe not so much in person now with the pandemic- but hopefully this will change soon.)

* Keep up with your regularly scheduled tests and procedures. No need to panic, but this is just providing good care for oneself. If a problem is detected early, as I said, it is much easier treated and probably will have  a better outcome.

* Embrace your feelings. I try to keep a positive attitude, but if I am having a " down day" I tell myself that is OK, too. Of course, if these down days seem to be every day, then talk to a physician or therapist for some good mental health care. Having had cancer is a big deal! Hearing the words " You have cancer" is a life changing event. I think people deal with a cancer diagnosis in different ways. There is no right way, I believe. 

* While I did not feel that I returned to " normal", whatever that is, I have regained my life by taking better care of myself- both physically and mentally. I am trying to have a healthier lifestyle- by exercising, working on new hobbies, eating better ( most of the time, ha!), and just enjoying life in general. For me, being outside is very conducive to feeling better. Nature is the great healer, I truly believe. 

* I am a " worrier" and I am working on controlling my anxiety. I had this issue before I was diagnosed with thyroid cancer, and as you can imagine, it is worse now. This is a work in progress for me. I am far from perfect, but I am trying. 

In conclusion, happy Thyroid Cancer awareness month to all of my butterfly-less friends and thyroid cancer  warriors out there! I would like to especially give  a shout out to those women, like me, who get to celebrate Breast Cancer Awareness next month. The good news is that I am alive. I have survived two cancers, and am living the best life that I can. I sincerely wish the same for all those reading this blog...