Wednesday, March 22, 2017

Lymphedema : what is it? what to watch for, and how to treat it.

 when i had my thyroid surgery, specifically, a total thyroidectomy to remove a 2 centimeter tumor on the right lobe, a 0.2 centimeter tumor  on the left lobe, two parathyroid glands which were also cancer, and eleven lymph nodes, i was not that familiar with lymphedema. five years after this surgery, almost to the day, i had bilateral mastectomies along with 3 more lymph nodes removed. i had no idea that my lymph node system was compromised. why does that matter? well, i will explain...

the lymph node system in our bodies filter the fluid running through them, trapping bacteria, viruses, etc. so that our  hungry little lymphocytes( a type of white blood cell) can gobble them up. my physical therapist explained it this way: pretend your body is a ten lane highway full of busy cars. all of a sudden, these ten lanes become two lanes and things get backed up. ( probably road rage occurs, also). because of this lane closure, or blockage, you have swelling in your arms and/or legs. along with surgery to remove lymph nodes, radiation, injury or even the medication tamoxifen can cause lymphedema. i am focusing on cancer treatment/surgery for this discussion. lymphedema can also occur on it's own, but i am not going to discuss this.

swelling is of course a symptom of lymphedema. i will be using myself , as usual, for an example. i noticed that my left arm was slightly bigger than my right arm. i did not recognize this fact until a few months after chemotherapy. lymphedema can occur months or even years after chemotherapy or surgery. it is important to recognize the symptoms, and get adequate treatment just as soon as possible. there is no cure for lymphedema, but the condition can be managed and the patient can be more comfortable. along with swelling, you may notice a feeling of fullness in the arms or legs, and less flexibility in wrists, hands and ankles.

back to me. when i noticed the swelling in my left arm, i contacted my physician and asked for a physical therapist referral. the physical therapist, and this is important, in my opinion, i chose is a CLT which stands for "Certified Lymphedema Therapist". a CLT has advanced training in manual lymph node drainage on top of the required  physical therapist degree. the first thing that my CLT did was to take several measurements of both arms- from my wrists to my shoulders. she verified the diagnosis of lymphedema, and my treatment began. for several weeks, twice weekly, i learned certain exercises to do, along with receiving the manual lymph drainage massage. does this sound painful? well, it was not! in fact, it felt wonderful, and i am convinced that i felt better afterward. it was interesting that the massage did not just include my affected arm. she also did massage on my abdomen- we have lymph nodes literally everywhere in our bodies. what she was doing was re-directing the fluid from my arm into my abdomen. just think of it as a detour- the ten lanes of angry traffic now have another route to travel.

another important part of lymphedema treatment is to get measured for a compression garment. and of course you have to wear it ( i am trying to be better about this, i will admit). if you are planning on taking an airplane trip, you will definitely want to wear your compression garment. i got a few garments  so that i could wash one while having one to wear. i am  not sure about every one's insurance, but my insurance plan  paid for these. i was very surprised, but i recommend asking your physician to write an order for the compression garment ( and it has to be fairly specific- right or left arm,diagnosis,etc). i went to a store that had board certified fitters who were able to bill to the  insurance companies. this is important because these garments are sort of pricey- but well worth it in my opinion.

a few other things to note: if you have lymphedema, you should not have blood pressure taken or blood drawn from  that particular arm. gentle exercise ( i recommend seeing a CLT for help with this) and  elevation of the involved limb may also help with the lymphedema. you also need to be careful of cuts or insect bites on the affected arm or leg. it is important to also wear sunscreen( which is a great idea for everyone) to prevent sunburn on the area. some people also wear lymphedema alert bracelets.

so, lymphedema is a condition that can not be cured, but can be managed. the sooner the detection and treatment, as in most things, the better the outcome. let's keep those cars moving down the highway!

Friday, March 17, 2017

After thyroid cancer- long term monitoring, testing and aftercare. i could not think of a song for this, but perhaps " the long and winding road" by the beatles would have been a good choice...

i have seen so many different "after thyroid cancer surgery" plans, that i am sure the only thing that most people can agree on is that nearly every one's plan is different. however, there are some basic tests and monitoring schedules that should be used, i think. before i discuss these, let me say that the tests and monitoring schedules,as well as the dosing of thyroid hormone replacement medication,   depend somewhat on the stage and risk level that have been used to diagnose the patient. i was diagnosed as stage III, moderate risk. if you go to the thyca website, you can see just what the staging and risk factors mean. your doctor should have told you the stage and risk factor of your thyroid cancer at some point in your treatment. while i detest the words "thyroid cancer is the good cancer ", it usually has a good prognosis  when there is early detection and treatment.

after your treatment for thyroid cancer, which usually includes  surgery, RAI ingestion, external radiation( in some cases), and sometimes traditional chemotherapy( worse case scenario- and i do not personally know of anyone who has had to have this, thankfully), you will be placed on thyroid hormone medication. this is the most important part of the aftercare, in my opinion. not only does the dose of thyroid hormone affect the quality of life in people who have had thyroid cancer, but as i have said before, thyroid cancer patients must be monitored for their lifetimes. a recurrence can happen anytime - even years after diagnosis.

so, let's talk about thyroid medication dosing. there are several reasons that this is important. it is extremely important to keep the TSH at a level to suppress the possible stimulation of thyroglobulin. just as a reminder, only thyroid cells produce thyroglobulin. if you do not have a thyroid gland in your body, and you test positive for the presence of thyroglobulin( this should be part of your blood work test), that means that you have, most likely, thyroid cancer cells somewhere else in your body. unfortunately, there is also another factor that adds to the excitement, and that is that some people ( me included) produce thyroglobulin antibodies. this makes the test for thyroglobulin rather difficult to interpret. in my case, i tested positive for the thyroglobulin( TG) the first year, as well as the antibodies. for the next two and a half years, i tested positive for just the antibodies. my physician could not explain the " why" to me, and it was very stressful. after a little over three years, my TG levels went down to what is considered normal, and my antibodies went away. my physician told me that sometimes it just takes a while for the RAI to work. maybe my immune system got it under control on it's own? during this time, my physician kept my TSH essentially zero. the purpose is that by keeping the TSH zero, you are not stimulating those thyroid cancer cells to create mayhem somewhere else in your body.

i have had my TSH at near zero for almost 7 years now. this could be considered aggressive treatment, i guess you could say, but both my doctor and i agreed- given my stage and risk - that it was the best thing for me . this is where the individual plan comes in. i feel less anxious with an extremely low TSH, but it might not be ideal for someone with , say stage I or II with a low risk factor. having a low TSH is not without risks. a patient could develop heart arrhythmia's, or osteoporosis. i have had several bone density tests to check for osteoporosis, and to this date, i do not have that. i also do not have any arrhythmia's. but these are two conditions that i am monitored for fairly frequently.

TSH is only one blood test to be concerned about. thyroid cancer patients should have T3 and T4 , TG and if appropriate, TG antibodies tests done as well. a physical neck check to check for lymph node enlargement is important. neck ultrasound checks for any disease in the neck, i call it checking for "goblins". there is a wildly variance in the timing of these ultrasounds. my physician has ordered it for me twice yearly for the past almost 7 years. some patients get it once yearly, and some not at all (!). again, this will depend on what the patient and her/his physician  decide on. i am comfortable with twice yearly ultrasounds. they are painless, do not involve harmful radiation, and frankly give me peace of mind. since it has been almost 7 years, my physician and i are considering reducing my ultrasounds to once yearly. i am not quite ready for that, though.

it is important that a patient has a good relationship with her/his doctor. compromise is essential. i am very fortunate to have a wonderful physician who listens to how i am feeling, and does not just go by my blood work numbers. at my last visit, for example, i talked with my doctor about wanting to try some naturally derived thyroid hormone. i had been on some synthetic T4 and synthetic T3 for some time, and i was not feeling well. i was having a lot of  tiredness- especially in the late afternoon, and other hypo symptoms. she agreed and switched me to Nature-throid, which is a naturally derived, hypoallergenic thyroid hormone. it contains both T4 and T3. i feel substantially better on this. i called her office last week, and asked her if we could go up on the dose. while, i was feeling better overall, i was still not feeling quite the way i wanted to. now this was after being on the dose for 3 months. it takes approximately 2 weeks for a new drug/dose to make a difference. at least this has been the case for me. some people notice a difference after just a few days. that is where the "individual plan" comes in again.

so to wrap things up, monitoring is as follows ( this is according to the thyca website- your plan may differ, of course)

1. physical neck check: every three to six months for the first two years, and at least once a year thereafter.

2. blood tests- thyca did not give a rule of thumb for this. i have blood work done anywhere from two to four times a year. this includes the above mentioned tests ( TSH, TG, TGA,T3,T4,etc). i have blood work done and an office visit, along with ultrasound twice yearly. i have additional blood work done when i change medications or dose. you might also get additional blood work done if your overall health changes. my advice is to find a good phlebotomist -you  are certainly going to need one!

3. ultrasound tests- thyca also did not give a recommended schedule for this. like i said, i have one twice yearly, when i have my office visit and blood work tests done. i may go to just yearly on this, but so far twice yearly is working out for me. as i mentioned, it does not expose the patient to radiation, is not painful, and is just another way to monitor a possible recurrence.

4. RAI whole body scans. i had one immediately after my surgery, and one about a year later. i have not had to repeat this test. thyca does not make any recommendations about the frequency of this test. but i imagine that if there is a recurrence, this would be mandatory. again, this is something that the patient and their physician will discuss.

5. chest x-ray- i had one of these after my surgery, and before my RAI treatment. the radiologist who ordered the test said that thyroid cancer, when it spreads, goes to the lungs and bones. my lungs were clear, and i have not had to repeat this test. again, this would be up to the patient and their care plan.

6. CT scans- while i had one of these with contrast dye about four months after my breast cancer, it is not regularly used in thyroid cancer, but can be. if you have this, you will not get the contrast dye because it is high in iodine, and should you have cancer, it could delay the RAI treatment.

7. MRI and PET scans are sometimes done. i probably was a candidate for one. but upon talking to my physician, we both agreed that it was not the best option for me, even though my TG and TGA were elevated. it turns out, that was a good decision. sometimes you just have to make your best guess and go with it. i should say your informed best guess. 

testing is stressful! but in my opinion it is important. my surgeon told me that my thyroid cancer had been there for" quite some time". it would have been nice to have caught it earlier, but of course i am thankful that i was not in stage IV or that i had a more aggressive type of thyroid cancer. coming up with a treatment and monitoring plan for each individual patient is important. this should be a plan that is acceptable to the patient and their physician. compromise and informed decisions can make all the difference in prognosis and quality of life.

i hope that my blog provided some useful information. but i know that it was certainly a dry blog, so because of that, and in honor of st. Patrick's day, and not to forget the fact that i love corny jokes, here are a few for you...

" What do you get when you cross poison ivy with a four leaf clover?  A rash of good luck."

" Why can't you borrow money from a leprechaun? Because they are always a little short."

" I went out drinking on St. Patricks day, so i took a bus home. this may not be a big deal to you, but i had never driven a bus before."

" Why don't you iron a 4 leaf clover? because you do not want to press you luck."

i will end this blog on that thought...

Sunday, March 12, 2017

"get up stand up. stand up for your rights; get up, stand up. life is your right, don't give up the fight." from get up stand up, by bob marley

lately, i have been reading comments thyroid cancer patients have been posting about inadequate care, during or after thyroid cancer treatment. my first thoughts were that there should be a "national protocol of treatment" for thyroid cancer patients. after careful consideration, i realize now that this is not exactly possible. one reason is that  there are different types of thyroid cancer ( papillary, follicular, papillary or follicular variants, medullary, and anaplastic) so there is not really a one size fits all treatment. also, every age group- from small children to adults can have thyroid cancer. so this would influence treatment and after care.

what really disturbs me, is that too many people do not realize that with thyroid cancer you will require life long monitoring. the percentage of recurrence with thyroid cancer is about 30%. it is very important that if there is a recurrence, that the cancer is found quickly and treated. i have read that although more people are being diagnosed with thyroid cancer, it is projected that more patients will die of thyroid cancer in 2017 compared to 2016.

this is where the statement that i am always preaching comes in: " you need to be your own best patient advocate."it is good to search the internet, but please go to reputable sites. "Thyca: thyroid cancer survivors association" offers excellent advice about diagnosis, treatment, testing, long term monitoring,etc. i think that this is the gold standard for every thyroid cancer patient. if you have not been to this website, do so now! there are excellent books on thyroid cancer- two of my favorites are by Mary Shomon, and one by M. Sara Rosenthal. ( you can purchase them from amazon if they are not stocked in your local book store). an informed patient is one that will live a better, and longer in my opinion, life.

so, you have obtained your information from Thyca, and possibly some books, so where to now? the next step is to find a good physician. and by "good" i am talking about a physician that has experience treating thyroid cancer patients, is good at her/his job, and most importantly, in my opinion, is willing to listen to patient concerns and adjust the treatment accordingly.

i will use myself as an example. i have an excellent endocrinologist, i think. some people choose not to go to an endocrinologist, and that is entirely up to the patient. but just remember that an endocrinologist treats ONLY patients with thyroid disorders or diabetes. i have just had a medication change from levoxyl ( a synthetic t4 only drug) plus cytomel ( a synthetic t3 only drug) to Nature-throid, which is a naturally derived t4 and t3 combo drug. i have been feeling better on the Nature-throid, but was still having some "hypo" symptoms. added to this, my blood work had changed from the time before. my tsh was up, my t4  and t3 were down. my endocrinologist felt that my blood work numbers looked acceptable, but i was not comfortable with them. i asked her to increase the dose of my Nature-throid and told her that i would stop taking the cytomel( it was causing nausea). she agreed to this, and has ordered more blood work to be done in may.

i am highly respectful of my doctor, but i appreciate the fact that she takes into account how i feel, and does not just rely on the lab values. if i tell her that i am not feeling well, she will make adjustments until we come up with something that satisfies us both. a good doctor/patient relationship is crucial to success in treating any disease. since thyroid cancer requires life long monitoring, i think that it is especially important that thyroid cancer patients find a good physician that is willing to listen and compromise. it took me a few years to find a physician that was a good fit for me. don't give up!

in my next blog i will discuss after care, long term monitoring, and follow up testing. another tip for you- it really helps to have a notebook in  which you can file all of your test results, blood work results, office visit summaries, and perhaps articles that you find helpful about thyroid cancer. i bought a 3 ring notebook and have found this to be invaluable so many times over the years. having my test results at my fingertips not only helps me, but actually my doctor has found it useful a time or two, also. even if you did not start the notebook at the beginning of your thyroid journey, you can still start one now. it is part of being your own best patient advocate.

Saturday, March 4, 2017

" you were such a strong swimmer, and you taught me how to never fear those tall waves, and you stayed in those deep waters, always inviting, to a bed on the bottom. and that current took you away, and it made you pay and pay..." Strong swimmer, by Shelby Earl

my husband and i were listening to NPR this morning, while he had his coffee and i had my cup of tea, when we heard this song- " strong swimmer" by shelby earl. i was not familiar with the artist, nor had either of us heard the song, but it struck a chord with me.( no pun intended ). we listened to the song, and an interview with the artist. ms. earl said that she thought of her step-mother when she performed this song. her step- mother had a health crisis a few years ago , and ms. earl had come  home to help take care of her. she said that her step mother worked so hard to get better, but it was a daily challenge.  while it is a song that might bring tears, it is meant to be inspiring and uplifting as well.

listening to the song, it made me remember my own "health crisis" that i had  when i was in the middle of my chemotherapy for breast cancer. it was at a time when the nausea/vomiting was at it's worst, and i was at my weakest. not only had one of the chemotherapy drugs caused some neuropathy in a few of my toes( they are still numb to this day , by the way), but the needle slipped out of my vein a little, and the medicine infiltrated into the skin on my left forearm. i had a bright purple streak- from just below my elbow to nearly my wrist and it was painful. it has since faded to light pink ( appropriately enough), but i think it will remain with me as a reminder of this time- as if i need a visual was during this very difficult time for me, that i told my husband  i simply could not continue with the  chemotherapy. the new chemotherapy medicine that the physician was now having to add on had even more nausea and vomiting as a side effect. my white blood cell count was dangerously low, as was my will to fight the cancer.

what made it possible for me to continue the chemotherapy, and complete my treatment was some really deep soul searching. yes i had my faith. yes i had wonderful support from family and friends. but when you are a patient going through this awful treatment, you and you alone are the one who is sitting in that infusion room with that poison cursing through your veins. my parents passed away a few years before i got sick, and in some ways that was a blessing. but they both instilled in me the desire to fight- to be a strong swimmer. i needed to find a way to get through this difficult time so that i could hopefully be there for my family when they needed me. i will admit that i DID fear those tall waves, but i kept swimming until i found my way to the shore. safe at last.

i think that we all have to be strong swimmers. whether we are battling cancer, struggling with thyroid disease, or any other health crisis, we need to do our best to get better. i am proud of the fact that i really wanted to quit my chemotherapy, but i did not. i finished it. and every six month test that i have is challenging to me, but i fight through that as well. some people have said that i am brave. i do not feel brave at all, but i do feel like a strong swimmer. and when it comes down to it , that is really all that you can do- keep your head above water and swim hard for the shore.