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.