Cancer sure does have a lot of baggage

 Yes, cancer has a lot of baggage. While I am so very thankful and grateful for the current advances in the treatment of my cancers- especially my breast cancer- it sort of comes with a price. PTSD episodes, anxiety before scans or follow up, increased tiredness, hair thinning or loss, changes in hair and/or skin, etc, ..the list goes on. I have never regretted the decisions that I made regarding my treatments or surgeries for my cancers, but I can not say that I was fully prepared for the medical problems that I have encountered after treatment. For one example, and again I will use myself as an example, I had heard about lymphedema- mostly from other patients further along in their breast cancer treatment. I developed lymphedema after my bilateral mastectomies. My physician did not discuss this with me.  I was diagnosed by a physical therapist that I was seeing for another issue. I wear my compression garments and do some other self care, but lymphedema is not curable and is something that has to be managed for life.

One very important condition that was also not discussed with me is : Intercostobrachial neuralgia. I am going to abbreviate this as IN for short ( it is a mouthful as well as difficult to type ). So, what is IN and who gets this? IN is a nerve pain issue, that involves the nerves running through the upper chest wall. Breast cancer patients who have had mastectomies can have this due to nerve damage after surgery. It is estimated that from 25 to 60% of patients surviving breast cancer surgery can have IN.  There are other causes, most involve surgeries in the upper thoracic spine, armpit, upper inner arm, and upper chest wall.  Also,  radiation therapy in the lung area and upper chest wall can also cause IN. While women are more likely to have this, due to breast cancer surgery/treatment, it is also possible for men to have this condition. And even though IN pain can occur in different areas, the majority of patients experience pain in the rib cage area. IN pain can be described as:

* stabbing

*sharp

*tender

*aching

*gnawing

*burning

*spasms

IN episodes can be sporadic, and can be intensified with certain activities such as lifting heavy objects. One must be aware that pain in the chest could also indicate heart issues, so this may require immediate medical attention. It is very important to discuss any chest wall pain with one's medical provider, and in a timely fashion. Again, using myself as an example, I am not sure if I have IN, but I have had stabbing, knife like pains in my chest, occurring from time to time, since my mastectomies. I have discussed this with my surgeon who only said that I have a large amount of scar tissue in my chest. I had twice yearly appointments with this provider until just recently- when he said that we could reduce them ( It has been nine years since my mastectomies, for reference) to once yearly. I have had a couple of EKG's to monitor my heart function, and they were normal. The EKG's were done because I received a chemotherapy drug ( Adriamycin, AKA, the red devil) that can cause heart damage. So, perhaps I can assume that my chest pains are not heart related, but possibly IN.

The recommended treatments for IN include:

* NSAIDS( Motrin, Advil, meloxicam, etc. )

* antidepressants

* capsaicin cream 

* radiofrequency ablation

* intercostal nerve blocks

What I have done to help with my chest wall  pain is to take some occasional ibuprofen . I also wear a compression bra, which has also helped me. This compression garment  seems to have reduced the frequency of my pain, but it is not listed as a treatment in the literature on IN. It is just something that has worked well for me. Again, I am urging those with chest wall pain to seek treatment  immediately if one suspects a heart issue. Or, if this could be IN, please speak with your medical provider about this issue. In the article that I read on IN ( " Neural Blockage for Persistent Pain after Breast Cancer Surgery", Wijjayasinghe, Andersen and Kehlet,) the intercostal nerve blocks are excellent for short, but NOT long term pain relief. The radiofrequency ablation seems to have more lasting effects and is non-invasive and safe. I would recommend that if one thinks their pain may be IN, contact a provider who is familiar with IN or who specializes in the diagnosis and treatment of IN. As I said earlier, breast cancer and resulting treatments can cause lasting medical conditions. It is important for patients to recognize and address these potential issues so that we can achieve a better quality of life. 

May: my month of cancerversaries

As many of you who read my blog know, my blog is a "two-fer". I am both a thyroid cancer survivor as well as a breast cancer survivor. Celebrating a cancerversary ( or not) is a very personal thing. Some people celebrate different times or stages in their cancer journey. I happen to celebrate the day of my surgeries. I feel like this is a day that my surgeons and I kicked my cancer to the curb, for the most part. I mean, I had treatment ( RAI, chemotherapy, etc. ) as well as the surgeries, but the days that I had the cancers removed from my body is the day I like to celebrate. And just for the record, May 19th is my 14 year thyroid cancerversary and May 22nd is my 9 year breast cancerversary. 

I try my best to practice gratitude every day. I am thankful for big things- being in remission, my family and friends, great surgeons and other health care providers who have helped me get this far. But I am also thankful for the small things in life and try to find at least one thing each day that I am thankful for. Nature has been a big healer for me, as well. We live out in the country, and I am fortunate to have clean air to breathe and clean water to drink, as well as beautiful plants all around me. My husband works tirelessly on our home landscape to provide beautiful flowers, shrubs and trees and I am very thankful for that. 

One thing I have been noticing, as I have been reading  several of the  posts from patients on the thyroid/breast cancer websites that I follow, is the fear of recurrence. I am such a worrier. Both of the types of cancer that I had have a fairly large percentage of recurrence. Does it help to worry? No, of course not! Logically, I know that I have made the best decisions about treatment that I possibly could. I feel good about the choices that I have made, yet the fear of recurrence still lurks somewhere in the background. Everyone is different- and there is no one treatment plan that is best, or suits, everyone. Sometimes when I read posts from patients who had the same type of cancer (s) that I had, I wonder if I should have done something different in my cancer(s) treatment. Second guessing is never good, and this practice just leads to more worry. 

People who have had cancer celebrate their cancerversary ( or cancerversaries) differently. Some patients choose not to celebrate at all, which is fine by the way. Some people take trips, go out to dinner, do something nice with family or friends, have a self care day, etc. Every year has been a little different for me. Mostly, my cancerversaries have been rather low key. This weekend, my children and grandchildren spent the weekend with my husband and me. We had an early birthday party for one of my granddaughters who turns 5 years old at the end of this month. Having all of my family at my house for the weekend is my favorite thing in the world. I love to see everyone having a good time, I love to cook for them ( my love language, as the saying goes, is baking for family and friends)  and of course, I love just seeing and talking to everyone. My thyroid cancerversary happened to fall on the last day that they were here. I felt like I had celebrated all weekend, though the party was for my granddaughter. 

On May 22nd, I am throwing an end of the year  party for the first grade class that I have been volunteering with all year. I have helped them with mostly reading and AR tests, but they have helped me far more than I have helped them! Every Wednesday, which has become my favorite day of the week, I have spent a couple of hours with the students. I am very thankful for the teacher and assistant teacher who allow me to come into their classroom and spend some quality time with their students. This particular teacher and assistant have a nurturing, creative classroom and I really enjoy all of the interesting things that go on there. I get lots of hugs and some beautiful pictures, so being around these children has made me very happy. "Happy" is good medicine. I hope that all cancer patients, in recovery or active treatment, can have lots of "happy" in their lives. 

To my fellow pink sisters/thyroid cancer sisters who have a May cancerversary( cancerversaries) I would like to send you my love and best wishes. However you celebrate, I wish you a great day and lots of happiness. Try to kick worry to the curb and have a wonderful day. Every day we are here on earth is a great day to be thankful and happy. 

The link between thyroid cancer and breast cancer

 Before I quote my two sources to back up the title of this blog, I would like to repeat the definitions of having a recurrence versus having a second primary cancer. A recurrence is when one has cancer after treatment is completed. But it is the SAME type of cancer. Having a second primary cancer is a cancer survivor developing a new unrelated ( or different) type of cancer. 

According to the American Cancer Society, " People who have or had thyroid cancer can get any type of cancer, but they have an increased risk of developing:

*Breast cancer

* Prostate cancer

*Kidney cancer

*Adrenal cancer- which is especially high in people who had the medullary type of thyroid cancer.

Patients treated with radioactive iodine also have an increased risk of acute lymphocytic leukemia ( ALL), stomach cancer and salivary gland cancer."

The second quote is from the article "The Breast-Thyroid Cancer Link: A Systematic Review and Meta-Analysis" This study is published in the Cancer Epidemiol Biomarkers Prev, 2016 Feb: 25(2): 231-238 and can be accessed from HHS Public Access. The study is authored by Sarah Nielsen, Michael White, et.al.

" Rates of thyroid cancer in women with a history of breast cancer are higher than expected. Similarly, rates of breast cancer in those with a history of thyroid cancer are increased. Explanations for these associations include detection bias, shared hormonal risk factors, treatment effect, and genetic susceptibility. With increasing numbers of breast and thyroid cancer survivors, clinicians should be particularly cognizant of this association. "

I had papillary with follicular variant thyroid cancer in 2010, then invasive lobular breast cancer in 2015. I have been interested in the relationship between these two cancers ( I think that this fact has now been established) for some time now. When I woke up from the anesthesia after my bilateral mastectomies for breast cancer, one of the first questions I asked was " were there any thyroid cancer cells present in my breast cancer tissue?" The answer to that was no, of course. At the time I did not know about the difference between having a recurrence and having a second primary cancer. I did suspect that there was some connection, I just had not been able to find one in the literature- until recently. 

I am relaying this information, not to scare anyone, but to emphasize what women with breast cancer or thyroid cancer may want to do. First, make sure that your physician is aware of the link between breast and thyroid cancer. Breast and/or thyroid cancer patients should:

* Get regular checkups and mammograms ( if this applies- in other words, if the woman has not had bilateral mastectomies)

* Eat a well balanced diet and stay at a healthy weight

* Exercise regularly

* Get plenty of sleep

* Limit alcohol consumption

* Stop smoking, and limit exposure to places where tobacco smoke is present

It is important to let your physician know of any unusual symptoms that one is having. Additional testing ( other than scheduled screening exams- colonoscopies, mammograms ( if appropriate),etc) is not recommended if patients do not present with symptoms that could indicate illness. This is a subject that patients feel differently about. On the one hand, a test that MIGHT show an early stage cancer or spread of a previous cancer would seem like a good idea. But testing anxiety, possible over-exposure to radiation from unnecessary imaging are two things that need to be considered before testing. It is important for the patient to have regular follow up by their physician(s) though. Early detection is, of course, important in the successful treatment of any cancer. 

I have seen different percentages in several articles that I have read about the thyroid-breast cancer link. The most startling one is in an article called: A Linkage Between Thyroid and Breast Cancer: A Common Etiology? This article is in Cancer Epidemiol Biomarkers Prev ( 2019) 28(4) 643-649, by Eric Bolf, Brian Sprague and Frances Carr. According to their study: 

" Women with breast cancer are 2-fold more likely to develop future thyroid cancer and women with thyroid cancer have a 67% greater chance of developing breast cancer than the general population. The etiology of these cancers and possible causative factors are at an infancy stage and just beginning to be studied. Further investigation into the genomics and epigenetics underlying both breast and thyroid cancer can yield clues...as to who are at greatest risk. "

The take away from my blog, and my own personal advice here- what I consider important and what pertains to my situation ( we are all different)  is to get regular mammograms and neck checks. And if I was able to do anything over, it would be to get 3D mammograms AND ultrasounds once or twice yearly. It might have taken me a little while to talk my physician into ordering this, and yes, I may have had to pay for some or all of the tests, but to me, it would have been worth it. I had dense breast tissue with calcifications.  I was diagnosed as having stage 2B invasive lobular breast cancer. I had bilateral mastectomies and 3 months of chemotherapy, which I feel saved my life. I would have liked to have been diagnosed  earlier, though. I was unfortunately not aware of the connection between these two cancers or I would have been a better patient advocate for myself. Please do not skip your yearly or bi-yearly mammograms! And please have your physician do a neck check, and even an ultrasound to check for nodules- especially if thyroid disorders or thyroid cancer are common in your family. This is the advice that I give to my daughter and this is the advice that I give to you. 

Total thyroidectomy versus Partial thyroidectomy- some pros and cons

 The debate between getting a total thyroidectomy (TT) and a partial thyroidectomy ( PT) is usually a heated one. Reading posts over the years, from thyroid cancer patients on various thyroid cancer websites, it seems to me that people feel strongly one way or the other ( TT or PT). I believe that this is not a " one solution fits all" but there are several things to consider with both surgeries. I have tried my best to present the arguments for both groups in a non-biased manner, but I need to make a disclosure. For my thyroid cancer ( stage III, papillary with follicular variant) my surgeon and I decided it was best to go with a TT. Before the surgery, I did ask the surgeon for a PT and he said " No way! I have been doing this surgery for many years now, and I have seen too many people who had PTs have to come back to have the other side removed." Well, at the time I was a little upset at his remarks, but as it turned out, I did indeed have a cancerous tumor in the other side ( unknown until final biopsy ) that would have had to be removed with a second surgery. In my case, I was fortunate that my surgeon " recommended" a TT over a PT. In spite of my experience, I will present the pros and cons of both. And as I said, hopefully, in a non-biased manner.

My information for this blog comes from an article that I read on the Thyca.org website. ( wonderful website- every thyroid cancer patient can benefit from frequent visits to this site) The article is titled: ATA Thyroid nodule/DTC guidelines, by Haugen ET AL. This is a long and rather complex article, but with time and a little patience, I think it is worth the read. 

I think that a lot of us, including myself, have had a biopsy or two that came back as inconclusive ( the article refers to this as being a nodule that is " cytologically indeterminate ". ) There are two recommendations for this situation. One suggested recommendation would be a PT. Another recommendation would be the TT. The reasons given for the TT are that the nodule looked suspicious upon further analysis, the nodule looked suspicious when an ultrasound was performed, the nodule was large ( here the author defined this as greater than 4 centimeters) , the BRAF gene was present, there was a family history of thyroid cancer, or the patient had a history of radiation exposure. I really had not heard of the BRAF gene until recently. For those of you who, like me, were not familiar with this gene here is a simple definition: the BRAF gene, when mutated, can cause normal cells to become cancerous. This gene is most common in melanoma, but can also play a role in other types of cancer. 

When there are more than one nodule, every nodule ( this study recommends biopsy on nodules 1 centimeter or greater ) should be biopsied. The risk of cancer is the same as with patients who have only one nodule. The follow up with patients with multiple nodules can be: 1) wait and see- repeat FNA as prescribed by the physician 2) PT or 3) TT. 

The risks of doing a PT are fairly obvious. There may be malignancy in the other lobe that has not been detected or presents with a false negative after FNA. If there is a malignancy in the other lobe, then the patient will have to undergo a second surgery. There could also be spread of the thyroid cancer if cancerous nodes are not detected and removed. 

Now for the pros.  Having a PT, when appropriate, has less impact on the voice ( vocal cord damage). Also, the remaining thyroid lobe may produce enough thyroid hormone that supplementing with thyroid hormone will not be necessary.  When having a PT, there is less chance that the parathyroid glands will be damaged. ( there are four parathyroids; they are near proximity to the thyroid and while do not participate in thyroid hormone production, produce parathyroid hormone (PTH) which regulates the amounts of calcium, phosphorus, and magnesium in bones and blood. A person can get by with only one parathyroid, but may need calcium supplementation. If all four are removed, a person will need calcium supplementation for life.) 

After a TT, thyroid hormone replacement is mandatory. A patient cannot survive without hormone therapy. This means frequent trips to get blood work done so that TSH, free T4, T3 and other blood values remain in the correct range. I think that people who have not had to have their thyroid removed or those that are hypothyroid for other reasons, do not realize that it is not a " one and done" kind of thing. There are changes in the body (ex: weight changes, dietary changes, other medications added) as well as how one takes their medication, drug manufacturer practices - potency and consistency in strength and dosage of the thyroid hormone drugs. Many factors contribute to the necessity of consistent blood work so that thyroid patient's bodies are working correctly and the patients are feeling well. It is also very important that before a TT, a patient needs to be sure that the surgeon has experience in doing this surgery. As stated above, it is extremely important to keep as many parathyroids as possible. To explain why a skilled surgeon is vital, the parathyroid gland is the size of a grain of rice! It is also important for the surgeon to take care with the vocal cords, which are in close proximity to the thyroid gland. 

For the pros of having a TT: well, the cancerous nodules are gone, unless they have spread into the lymph nodes or vascular tissues. A patient may decide, along with their physician, that a TT will prevent a possible second surgery. One can not discount peace of mind, when TT is appropriate. 

In conclusion, having a PT versus a TT should be based on tests ( FNA, ultrasounds, etc) recommendations from a patient's endocrinologist, physician and/or surgeon, and most importantly, what a patient prefers and feels is right for them.  This is a personal decision and there is no one choice that is right for everyone. 

Peripheral Neuropathy caused by chemotherapy medications and possible new treatment / preventative options

 When I was diagnosed with stage II-b invasive lobular breast cancer, my oncologist decided on chemotherapy after my bilateral mastectomies. I had chemotherapy treatments for three months following my surgery. Along with the five pre-treatment IV medications, I started out with Cytoxan and Taxotere ( docetaxal) as prescribed by my oncologist. Taxotere is a much used, and effective, chemotherapy drug used in treating breast, lung, stomach, prostate, head and neck cancers, among other types of cancers. Of course, as we all know, even the best medications have side effects. When I was practicing pharmacy, before I retired, I always said that it is a balancing act when starting any new  medication. One must look at the benefits versus the side effects of the drug, and decide on the appropriate action. I knew that Taxotere had some pretty bad side effects, but I felt that it was worth the risk of the possible side effects in order to kill the cancer cells. 

After my second treatment, though, I developed peripheral neuropathy in my toes, left foot, and some of my fingers. For those of you who wonder what peripheral neuropathy feels like, I think that it is somewhat different for each person. Some of my fingers were numb and tingling, and when I was barefoot, I felt that I was walking on carpet or cotton balls. In other words, my feet and toes were numb. I also experienced " pins and needles" feelings in my toes and feet at times.  My oncologist immediately stopped the Taxotere, and switched me to a regiment of Adriamycin ( doxorubicin) and Cytoxan. Adriamycin is " lovingly" referred to as the " Red Devil" by patients - probably due to it's high percentage of causing nausea and vomiting and the blood red color of the drug after it is reconstituted. It also can be very toxic to the heart, but peripheral neuropathy is not as common as it is with Taxotere.

I would love to say that my peripheral neuropathy went away, but it did not. Well, not in all locations. My fingers returned to normal, my right foot and affected toes still tingle sometimes, but not as badly. My left foot and toes are pretty much forever numb, and I still experience the "pins and needles" feeling at times.  This affects the type of shoes that I wear, among other things. I understood the risks of taking Taxotere, and for me it was at least, worth a try. I do not want a recurrence of my breast cancer or the risk of spread somewhere else, and there is the fact that the taxanes ( Taxotere is one of a class of these drugs) are very effective in killing cancer cells.

So, if cancer patients taking one these drugs develop peripheral neuropathy is there a treatment for this? The answer is no, not as yet. A more effective way is using  one or more treatments before the neuropathy starts. There are some studies that are trying to determine what type of patient might be more apt to develop neuropathy. Some possible red flags include patients who previously have had peripheral neuropathy, perhaps diabetics and older patients who might already have some nerve damage. Also, the neuropathy might be due to the number of chemotherapy cycles received. 

Some treatments that are being studied include the following: exercise, acupuncture, and cryotherapy ( or cold therapy). Exercise: a study involving aerobic exercise at home for a small group of patients for a period of six months reported significant improvement in their neuropathy. ( published in JAMA, August 1, 2023) There are no specific treatment guidelines for this in treating peripheral neuropathy. I think everyone would agree that exercise has many benefits, though. 

Acupuncture: there was a 2019 study in "Current Oncology "evaluating acupuncture in a small group of patients. The results were mixed- some benefited and some did not. This study concluded with the statement that more research is needed to determine the possible benefits of acupuncture and possible improvement of  neuropathy. There was an even smaller study conducted by researchers at Sloan Kettering Cancer Center in New York ( Jama Network Open, March 11, 2020) that concluded that after eight weeks of acupuncture, patients experienced less pain with their neuropathy. Acupuncture techniques vary, and clearly more studies are needed to determine the effectiveness of this treatment for neuropathy. 

Cryotherapy: where exercise and acupuncture are more treatments, cryotherapy is more of a preventative measure. I think a lot of people know about the " cold caps" that help prevent hair loss on the head 

 during chemotherapy. This is a similar technique, but instead of a cap, this involves frozen gloves and booties for the hands and feet. Again, more studies are needed to determine if this is an effective treatment to prevent peripheral neuropathy. 

I think an important take away from this and my personal story, is that patients need to be sure to tell their oncologists about ANY unusual symptoms that they may be experiencing during chemotherapy. Establishing a good relationship between patient and their oncologist is key in getting good treatment and having a good outcome. Quality of life after chemotherapy treatment is extremely important for the patient as well as the patient's family. 

Here are a few things that everyone needs to know about skin cancer.

 Everyone who reads by blogs, thank you- by the way!- knows that I am a thyroid cancer survivor as well as a breast cancer survivor. What I have not talked about is that I also am a skin cancer survivor. I had thyroid cancer in 2010, and breast cancer in 2015. In between those two cancers, I had squamous cell carcinoma on my leg, and basal cell carcinoma on my face. The treatment for both cancers was surgery; no other treatment was required, because they were detected early and had not spread to any of my lymph nodes. Early detection and treatment is KEY so I decided to provide some skin cancer facts, as well as suggested ways to prevent skin cancer. 

First of all, skin cancer is the MOST common cancer in the United States, according to the American Academy of Dermatology ( AAD). Listed below are some more facts about skin cancer from the AAD:

* It is estimated that one out of five Americans will develop skin cancer in their lifetimes.

*Approximately 9,500 people EVERY DAY in the U.S. are diagnosed with skin cancer.

*Non-melanoma skin cancers ( basal and squamous cell) affect more than 3 million Americans per year.

* Women have a greater increase of having basal and squamous cell cancer compared to men.

* Melanoma ( the most serious and deadly type of skin cancer) is said to be the fifth most commonly diagnosed cancer in men and women.

*Melanoma rates in the U.S. have doubled over the past 30 years.

* The good news is that melanoma incidence has begun to decline in adolescents and adults 30 years of age and younger.

* Skin cancer can affect anyone- regardless of skin color.

* Skin cancer rates are higher in women than in men before age 50, but are higher in men after age 50.

* It is estimated than melanoma will affect 1 in 27 men and 1 in 40 women during their lifetimes.

* Basal cell and squamous cell carcinomas, which are the two most common types of skin cancers, are highly treatable if detected early and treated appropriately.

The AAD encourages everyone to use sunscreen, wear protective clothing ( long sleeve shirts, pants, and a wide brimmed hat) as well as avoiding indoor tanning beds. The best, most protective outdoor clothing has ultraviolet protection factor ( UPF) on the label. Severe sunburns as a child increase the likelihood of skin cancer as an adult, so children need to be protected appropriately. 

* Risk factors for ALL types of skin cancer include people with skin that burns easily; blonde or red hair ( I have red hair!); a history of excessive sun exposure; frequent sunburns- especially as a child; tanning bed use; a weakened immune system; and a history of skin cancer.

I could not find, in the articles that I read, a consensus on how often a person should see a dermatologist for a skin check. Just from personal experience, I would recommend sooner rather than later, especially for cancer patients who have weakened immune systems. It is important to self check one's skin and pay attention to any moles or spots that change, darken or bleed, as well as irregularly shaped places that may be crusty and red in color. 

Personally, I go once a year to see my dermatologist ( I went more often right after my basal and squamous cell carcinomas were diagnosed) for a full body skin check. I can go more often if I need something checked out. Right before Christmas, I had a pre-cancerous lesion removed from my scalp. First, my dermatologist did a biopsy ( we cancer patients sure are familiar with THOSE) and in the abundance of caution, the lesion was removed. I had had this " spot" for quite some time, and my dermatologist felt that it was wise to remove it before it became cancerous. Yes, I had stitches in my head for Christmas...I did get two cute hats, though!

Seriously, skin cancer is , as the AAD said, the most common cancer in the United States. Survival rates for basal and squamous are very good if detected and treated early. Even with melanoma, according to AAD statistics, the five year survival rate for people whose melanoma is detected early with no spread to lymph nodes is 99%. That is compared to 68% if the melanoma has spread to the lymph nodes and 30% if the melanoma has spread to distant lymph nodes and other organs in the body. 

The take away from my blog would be this: use sun protection regularly, avoid tanning beds at all costs,  and get a full body skin check once a year or as often as your dermatologist recommends. The National Institutes of Health describes our skin as " the largest organ in the body, and covers the body's entire external surface." If we take care of our skin, it will take care of us. 

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.