i have been interested in this question for some time now. well, for 3 years, anyway. i was diagnosed with stage three, papillary with follicular variant thyroid cancer in 2010. after surgery to remove my entire thyroid and two parathyroids, i received a high dose ( 155 millicuries) of RAI. in 2015, i was diagnosed with invasive lobular breast cancer, stage 2b. i have no history of breast cancer in my family, and i did not have any other risk factors associated with developing breast cancer. did the large dose of RAI have anything to do with my breast cancer, or was it something else?
when i was making the decision to have or not to have the RAI, i did read that some scientists thought that perhaps a high dose of RAI could be linked to developing breast cancer. my " gold standard" book on thyroid cancer is " thyroid cancer" by m. sara rosenthal. she is a thyroid cancer survivor herself, and her book presents the pros and cons of the disease and treatment in a way that is informative, but readable. her take on the RAI issue, was that perhaps the RAI might slightly increase the incidence of breast cancer, but getting the RAI- in her case- was worth the risk. she recommended that if the physician in charge of your thyroid cancer treatment thought the RAI was necessary, then it would be wise to get the RAI. but she also said that patients should have all diagnostic tests necessary, especially yearly mammograms.
adding to the confusion, is the fact that according to a study in taiwan, which covered the entire population, if a patient has had thyroid cancer, they have a 33% increased risk of developing a second primary cancer. i have read this statistic in other studies, as well. to make matters even more complicated, according to research published in " Cancer Epidemiology, biomarkers and prevention", thyroid and breast cancer survivors are at risk of having the other cancer. in a study conducted by dr. raymon h. grogan, an assistant professor of surgery and director of the endocrine surgery research program at the university of chicago medicine and biological sciences in illinois, researchers found that a breast cancer survivor was " 1.55 times more likely to develop thyroid cancer ( compared to a woman with no history of breast cancer)". and " a woman who had had thyroid cancer was 1.18 times more likely to develop breast cancer than one with no history of thyroid cancer. "
i found one study that said that a large dose of RAI had very little impact on the development of breast cancer. for a patient like me though," very little" might be more significant. i have read that only 5 to 10% of all thyroid nodules are cancerous. sounds pretty good, but if you happen to be in that 5 to 10 % group, the statistic takes on a whole new meaning. in the above mentioned study about the breast cancer and thyroid cancer link, the authors came to this conclusion: " the use of RAI in the treatment of thyroid cancer may have a very small impact on the development of other cancers at a later date, including breast cancer. how great the risk is remains unclear."
so, basically, after researching this topic ( this continues to be a hot topic on many thyroid cancer forums), i did not find any conclusive studies or evidence that RAI and breast cancer are linked. could they be? yes. it could also be the breast cancer- thyroid cancer ( in women) link. then there is the 33% risk of developing a second primary cancer. what should you do if you are considering RAI therapy after surgery for thyroid cancer? good question.
i will tell you why i decided to get the RAI. as i said, i had read that there could be some link to breast cancer. BUT, my thyroid cancer had an aggressive area of follicular variant, along with the papillary area. i had three tumors which had burst and infiltrated into my surrounding tissues. two of my parathyroids were also cancerous. my endocrinologist said that even the most brilliant surgeon can not possibly get all of the cancer. some of the cancer had escaped, you might say, and was in my neck. luckily, even though i had positive TG ( a thyroid cancer marker) for three and one-half years after my surgery and RAI, the cancer did not move to my lungs or bones. would i have the RAI again after knowing that i would develop breast cancer five years after my thyroid cancer? absolutely. i had yearly mammograms- i might have had them every six months, but hind sight is always 20/20. that was my decision. this is an individual decision. what i decided to do may not be the best course of action for someone else.
my best advice, and the take away from this blog, is that when deciding about the RAI consider all sides of the story. read up on the type of thyroid cancer that you have and what additional treatments are recommended. if you are a woman, BE SURE to get regular mammograms. we should all get regular screening tests as recommended by our physicians. i wish that there was a definitive answer to the question of RAI use and breast cancer. i will keep researching, and hopefully we will have an answer soon.
Tuesday, May 29, 2018
Monday, May 21, 2018
" ...the only thing to say every silver lining's got a touch of grey... i will get by, i will get by, i will survive...the abc's we all must face, and try to keep a little grace, ... we will get by, we will get by, we will survive. " from Touch of Grey, by the grateful dead
whenever one of my cancerversaries rolls around, sort of sad to have more than one, i get a little introspective. this time, on the 22nd of may, to be exact, i will mark three years of being a breast cancer warrior. no, i do not use the word survivor. i prefer a stronger word, as i do not feel like a victim. i will admit that i cry a little, but i actually laugh more.i am so thankful to still be here with my family and friends. i do wonder as to why i am still here- what purpose have i left unfulfilled? what small or great things am i supposed to do?
on these cancerversaries, i also look back on the process that brought me to this point in time. i had wonderful physicians, nurses and other health care professionals working with me. the person that stands out, and i am talking here about my adventures with breast cancer, is the radiologist who stopped the lumpectomy that i was getting prepped in the hospital to have. she took one look at my latest x-ray, and said" i believe that there is another area of cancer not associated with the tumor and i would like to do a stereotactic biopsy to check it out." two other radiologists saw that one particular area; one when i had the ultrasound at the beginning, and the other time when i had the needle biopsy. they both remarked that it looked " weird". i foolishly thought that if it looked that weird, they would do further testing, or at least consult with the surgeon. here is one example of not following my own advice. be your own best patient advocate. if things seem weird, something is probably not right. fortunately for me, i went home that day after the stereotactic biopsy and the results were in. there were indeed two areas of cancer. i went back to the surgeon the following week, and my "lumpectomy and radiation" changed to " bilateral mastectomies and three months of chemotherapy.". the radiologist who stood her ground, so to speak, said that she had to be able to sleep at night. she also said that she tried to treat her patients as she would her family. i am forever in her debt. there is no doubt in my mind that she prevented me from having a recurrence, and possibly even saved my life.
during the forty years that i worked as a pharmacist, i really tried to do the same. i gave my patients the best care that i possibly could. i enjoyed the interaction with patient counseling, and i liked answering questions . i also enjoyed helping people find OTC medications that might help them. my husband and i talked about when would be the right time to retire. we both agreed that if there came a time when we could not give 100% of ourselves to the work, we needed to step down. that is one reason that we both retired last year. chemo brain is real, ha. and i get tired easily,too. those 10-13 hour days are not so appealing anymore. i am enjoying having some time to do my crafts, attend activities involving my grandchildren( that i was mostly unable to do before), and just having some " me" time. every day is full, believe me. when people ask me, " what do you do all day?", i do not know where to start. and now, there is the flower and vegetable garden to work on. i do not sit around, and frankly, i told my husband that i think we are busier now than when we were working full time.
maybe this is a wonderful gift. a gift that i am eternally grateful for. the gift of more time with my family and friends. i try not to think (too much) about a recurrence. i try not to get too stressed out when testing time comes around. i try to give back to others, even though it is not in the context of my professional work now. i will survive. i am a two time cancer warrior.
on these cancerversaries, i also look back on the process that brought me to this point in time. i had wonderful physicians, nurses and other health care professionals working with me. the person that stands out, and i am talking here about my adventures with breast cancer, is the radiologist who stopped the lumpectomy that i was getting prepped in the hospital to have. she took one look at my latest x-ray, and said" i believe that there is another area of cancer not associated with the tumor and i would like to do a stereotactic biopsy to check it out." two other radiologists saw that one particular area; one when i had the ultrasound at the beginning, and the other time when i had the needle biopsy. they both remarked that it looked " weird". i foolishly thought that if it looked that weird, they would do further testing, or at least consult with the surgeon. here is one example of not following my own advice. be your own best patient advocate. if things seem weird, something is probably not right. fortunately for me, i went home that day after the stereotactic biopsy and the results were in. there were indeed two areas of cancer. i went back to the surgeon the following week, and my "lumpectomy and radiation" changed to " bilateral mastectomies and three months of chemotherapy.". the radiologist who stood her ground, so to speak, said that she had to be able to sleep at night. she also said that she tried to treat her patients as she would her family. i am forever in her debt. there is no doubt in my mind that she prevented me from having a recurrence, and possibly even saved my life.
during the forty years that i worked as a pharmacist, i really tried to do the same. i gave my patients the best care that i possibly could. i enjoyed the interaction with patient counseling, and i liked answering questions . i also enjoyed helping people find OTC medications that might help them. my husband and i talked about when would be the right time to retire. we both agreed that if there came a time when we could not give 100% of ourselves to the work, we needed to step down. that is one reason that we both retired last year. chemo brain is real, ha. and i get tired easily,too. those 10-13 hour days are not so appealing anymore. i am enjoying having some time to do my crafts, attend activities involving my grandchildren( that i was mostly unable to do before), and just having some " me" time. every day is full, believe me. when people ask me, " what do you do all day?", i do not know where to start. and now, there is the flower and vegetable garden to work on. i do not sit around, and frankly, i told my husband that i think we are busier now than when we were working full time.
maybe this is a wonderful gift. a gift that i am eternally grateful for. the gift of more time with my family and friends. i try not to think (too much) about a recurrence. i try not to get too stressed out when testing time comes around. i try to give back to others, even though it is not in the context of my professional work now. i will survive. i am a two time cancer warrior.
Tuesday, May 15, 2018
Lymphedema - causes, diagnosis, treatment and self care.
cancer carries a lot of baggage with it. PTSD, anxiety, fear of recurrence, also fear of getting a second primary cancer ( it is about 30% after thyroid cancer), testing anxiety, and other health disorders. i am going to discuss lymphedema. why? well, i have this condition due to cancer surgery, for one thing. for another, i know of several people who have this disorder/ side effect and need more information . i was not prepared for the lymphedema. i thought that the newer surgery for breast cancer- removing and testing the sentinel node, thus removing fewer lymph nodes, would prevent this from happening. i will add here that the sentinel nodes are the first ones into which a tumor drains. tracer material (a dye) is injected and used to detect these nodes so that they can be removed and tested. removing fewer lymph nodes lowers the risk for lymphedema, i assume, but it certainly does not eliminate it. i also had surgery for thyroid cancer, at which time eleven lymph nodes in my neck were removed .
we have literally hundreds of lymph nodes in our bodies. the function of these lymph nodes is to help the body collect waste products, and probably more importantly, is a vital component of our immune systems. the best description of a damaged lymphatic system that i have ever heard came from my physical therapist. she said " imagine that our lymphatic system is a ten lane highway, transporting fluid into our blood stream. everything is going along fine until some lanes are closed. all of a sudden, that ten lane highway becomes a two lane, or even one lane highway. imagine the backup!" if this were a backup of cars, there would be wrecks and a lot of cursing. the backup of our lymph nodes will probably result in lymphedema- or swelling in the part of the body affected, as well as immune depression in that area.
it is important to note that while lymphedema is more commonly observed in the arms and legs, it is quite common in people who have had head or neck cancer. lymphedema at any location is best diagnosed and treated early. untreated lymphedema can cause many consequences- from heaviness in the area, to visible edema( swelling), soft pitting edema, and lastly, firm pitting edema which has permanent tissue changes. patients who have had surgery and/or radiation for head and neck cancers have about a 50% chance of developing lymphedema. LET THAT SINK IN! i was surprised when i read that statistic, which comes from four European studies.
how do you get a diagnosis? there are some expensive tests, or the most common way is by observation, patient history ( cancer surgery and treatment), and measurement. in my case, i saw a physical therapist. and not just any physical therapist, but one who is a CLT( certified lymphedema therapist). a CLT has to have at least 135 hours of training and pass an exam to be certified. a physical therapist who is not a CLT, may get some lymphatic training in school, but i would heartily recommend going to a certified physical therapist.
this is my experience with getting a lymphedema diagnosis and receiving some treatment. i noticed that the arm on the side where i had sentinel lymph nodes removed during my bilateral mastectomies, was beginning to swell a bit. this was several months after my surgeries and treatment were finished. i asked my family doctor for a referral to my physical therapist, who then measured both of my arms in several areas. this measurement was done a couple more times during and after my treatment to measure my progress. the treatment my physical therapist used is called " manual lymph drainage massage". this encourages the flow of lymph node fluid out of the arm or leg. it is not for everyone. if you have blood clots or infection, massage should be avoided. lymph nodes are very close to the surface, so the massage used is gentle, and the CLT did the massage in a particular order to get the fluid moving in the correct direction. this worked very well for me, and i showed improvement after several sessions.
i also wear a compression garment every day. the one i wear is called an active wear compression garment. it gently stimulates the lymphatic system. i tried the traditional compression garment, and while it may work for some, it was tight and uncomfortable for me. i found myself not wearing it because it was so tight and difficult to put on. i really like the active massage garment. it is an important part of self care, which is where i am now. i will also mention that it is important not to get sunburned or injure the affected limb ( bug bites, cuts, etc) if possible. remember that your lymphatic system is compromised now, and even a small cut or bug bite could cause cellulitis- a serious skin infection.
Lindsay Lewis, a CLT at MD Anderson cancer center, uses a special program to help patients with lymphedema caused by head and neck cancers. it involves gentle massage, special garments, skin care techniques and special exercises. my CLT did tell me that even in the CLT certified physical therapists, there are those who specialize in arms and legs and those that specialize in the head and neck area. be sure to ask what area a CLT specializes in before you begin treatment.
Lymphedema is a life long condition. it can have serious consequences if not diagnosed and treated promptly. there does not seem to be enough information for patients and health care professionals about this side effect of cancer and cancer treatment. i urge everyone who has had head, neck, breast, or other cancers and may think that they have lymphedema to seek treatment. and be informed. remember that knowledge promotes understanding.
Addendum: two important things that i forgot to post! first, be sure to remind your physicians and nurses not to take blood pressure readings in the arm that you have lymphedema in. you should also not get blood drawn from that arm!
secondly, there is a very good blog that addresses lymphedema on a personal level, by a lymphedema patient. her name is Sue Callison and the name of her blog is " Sue Callison- My lymphedema life". she talks about self care and dealing with lymphedema on a daily basis. she also sells the active massage products that i am so fond of!( Solidea Active Massage compression garments) please check it out! and by the way, i am passing along this info with no compensation from her company or anyone else. i do not profit in any way from any of my blogs. i am just trying to help others.
we have literally hundreds of lymph nodes in our bodies. the function of these lymph nodes is to help the body collect waste products, and probably more importantly, is a vital component of our immune systems. the best description of a damaged lymphatic system that i have ever heard came from my physical therapist. she said " imagine that our lymphatic system is a ten lane highway, transporting fluid into our blood stream. everything is going along fine until some lanes are closed. all of a sudden, that ten lane highway becomes a two lane, or even one lane highway. imagine the backup!" if this were a backup of cars, there would be wrecks and a lot of cursing. the backup of our lymph nodes will probably result in lymphedema- or swelling in the part of the body affected, as well as immune depression in that area.
it is important to note that while lymphedema is more commonly observed in the arms and legs, it is quite common in people who have had head or neck cancer. lymphedema at any location is best diagnosed and treated early. untreated lymphedema can cause many consequences- from heaviness in the area, to visible edema( swelling), soft pitting edema, and lastly, firm pitting edema which has permanent tissue changes. patients who have had surgery and/or radiation for head and neck cancers have about a 50% chance of developing lymphedema. LET THAT SINK IN! i was surprised when i read that statistic, which comes from four European studies.
how do you get a diagnosis? there are some expensive tests, or the most common way is by observation, patient history ( cancer surgery and treatment), and measurement. in my case, i saw a physical therapist. and not just any physical therapist, but one who is a CLT( certified lymphedema therapist). a CLT has to have at least 135 hours of training and pass an exam to be certified. a physical therapist who is not a CLT, may get some lymphatic training in school, but i would heartily recommend going to a certified physical therapist.
this is my experience with getting a lymphedema diagnosis and receiving some treatment. i noticed that the arm on the side where i had sentinel lymph nodes removed during my bilateral mastectomies, was beginning to swell a bit. this was several months after my surgeries and treatment were finished. i asked my family doctor for a referral to my physical therapist, who then measured both of my arms in several areas. this measurement was done a couple more times during and after my treatment to measure my progress. the treatment my physical therapist used is called " manual lymph drainage massage". this encourages the flow of lymph node fluid out of the arm or leg. it is not for everyone. if you have blood clots or infection, massage should be avoided. lymph nodes are very close to the surface, so the massage used is gentle, and the CLT did the massage in a particular order to get the fluid moving in the correct direction. this worked very well for me, and i showed improvement after several sessions.
i also wear a compression garment every day. the one i wear is called an active wear compression garment. it gently stimulates the lymphatic system. i tried the traditional compression garment, and while it may work for some, it was tight and uncomfortable for me. i found myself not wearing it because it was so tight and difficult to put on. i really like the active massage garment. it is an important part of self care, which is where i am now. i will also mention that it is important not to get sunburned or injure the affected limb ( bug bites, cuts, etc) if possible. remember that your lymphatic system is compromised now, and even a small cut or bug bite could cause cellulitis- a serious skin infection.
Lindsay Lewis, a CLT at MD Anderson cancer center, uses a special program to help patients with lymphedema caused by head and neck cancers. it involves gentle massage, special garments, skin care techniques and special exercises. my CLT did tell me that even in the CLT certified physical therapists, there are those who specialize in arms and legs and those that specialize in the head and neck area. be sure to ask what area a CLT specializes in before you begin treatment.
Lymphedema is a life long condition. it can have serious consequences if not diagnosed and treated promptly. there does not seem to be enough information for patients and health care professionals about this side effect of cancer and cancer treatment. i urge everyone who has had head, neck, breast, or other cancers and may think that they have lymphedema to seek treatment. and be informed. remember that knowledge promotes understanding.
Addendum: two important things that i forgot to post! first, be sure to remind your physicians and nurses not to take blood pressure readings in the arm that you have lymphedema in. you should also not get blood drawn from that arm!
secondly, there is a very good blog that addresses lymphedema on a personal level, by a lymphedema patient. her name is Sue Callison and the name of her blog is " Sue Callison- My lymphedema life". she talks about self care and dealing with lymphedema on a daily basis. she also sells the active massage products that i am so fond of!( Solidea Active Massage compression garments) please check it out! and by the way, i am passing along this info with no compensation from her company or anyone else. i do not profit in any way from any of my blogs. i am just trying to help others.
Saturday, May 5, 2018
" when life gives you lemons, instead of champagne, don't worry little children, and don't complain. remember you're golden, so find some sugar cane. when life gives you lemons, make lemonade." Lemonade, by alex boye
i have used this song before in at least one previous blog, maybe two. if you are not familiar with alex boye, especially this song, i urge to you to give him a listen. recently i was reading some comments on a thyroid cancer facebook site, when i came across some discouraging and i think sad remarks from a thyroid cancer survivor. this woman would not stand up and be recognized at some function as being a cancer survivor, because we all know that thyroid cancer is the GOOD CANCER, and she felt undeserving of the title of cancer survivor. now, i will admit that i am a little uncomfortable using the term " survivor" when it relates to my thyroid or breast cancer. this is only because i like to think of myself as a warrior, not a survivor. survivor to me seems like a passive type of condition. like a person did not fight hard to get well, that perhaps they only hung on, like a rat on a sinking ship, while someone else did the hard work.
i have never been bitter about having had cancer twice. i have never said " why me?" what good would that do? i knew about the 30% chance of having another primary cancer when i had thyroid cancer. was my breast cancer caused by my RAI dose, or something else? i knew that some people think that a large RAI dose can possibly cause breast cancer. i also knew that if i did not have the RAI, i might have a recurrence of my thyroid cancer, and it might just come back with a vengeance so to speak. what to do? i was informed, and i made the best decision that i could make. i do not regret my decision in any way. in offering advice, i will say that a person needs to be informed of the risks verses the benefits of all treatment for cancer. i made sure to get my yearly mammograms, and that is how my breast cancer was discovered. it was a little more advanced, and the type of breast cancer that i had was a little more aggressive than i would have liked. but making sure to have all of the tests that are recommended for you is essential. early diagnosis and treatment are keys to treating any cancer.
another thing that worries me is when someone says that they have " survivor guilt." i have said above that i did not ask why me, nor was i bitter about having had cancer twice. but also, i have not had any survivor's guilt. i feel empathy for those dealing with conditions worse than mine. being in health care, i saw these patients on a daily basis. maybe that is why i did not feel sorry for myself. i mean, there is always someone who has it worse than you do, to be blunt. i did the best that i could do to take care of myself. i am here, why i am not sure, while some others have not been so fortunate. but i feel proud that i have tried my best. i told my husband that if either ( or both) of my cancers returned, i would know that i have fought hard, and i have done everything that i could possibly do to live. i am a cancer warrior, not a survivor!
having a good, positive attitude is so very helpful to having a good quality of life. my family doctor asked me if i was depressed. i told him no, and he looked very surprised. i understand the difference between clinical depression, and situational depression. i know that some people have chemical imbalances and can not help that they are depressed. but with me, i am able to choose to be happy. i choose happiness- i have not let cancer beat the pollyanna attitude out of me. when i was little and i would get sick, i would tell my dad " don't worry, i will feel better tomorrow." that is pretty much how i feel now, as an adult. i am not saying that things are always puppies, butterflies and rainbows for me, but i try to make the best of what happens. in other words, if i get a bunch of lemons, i make lemonade- just like alex boye does.
thyroid cancer is NOT the good cancer! i think that this will have to be said about a million more times before word gets around. or before people listen and understand. all of you out there who are thyroid cancer patients are not just survivors, you are warriors. just like me.
i have never been bitter about having had cancer twice. i have never said " why me?" what good would that do? i knew about the 30% chance of having another primary cancer when i had thyroid cancer. was my breast cancer caused by my RAI dose, or something else? i knew that some people think that a large RAI dose can possibly cause breast cancer. i also knew that if i did not have the RAI, i might have a recurrence of my thyroid cancer, and it might just come back with a vengeance so to speak. what to do? i was informed, and i made the best decision that i could make. i do not regret my decision in any way. in offering advice, i will say that a person needs to be informed of the risks verses the benefits of all treatment for cancer. i made sure to get my yearly mammograms, and that is how my breast cancer was discovered. it was a little more advanced, and the type of breast cancer that i had was a little more aggressive than i would have liked. but making sure to have all of the tests that are recommended for you is essential. early diagnosis and treatment are keys to treating any cancer.
another thing that worries me is when someone says that they have " survivor guilt." i have said above that i did not ask why me, nor was i bitter about having had cancer twice. but also, i have not had any survivor's guilt. i feel empathy for those dealing with conditions worse than mine. being in health care, i saw these patients on a daily basis. maybe that is why i did not feel sorry for myself. i mean, there is always someone who has it worse than you do, to be blunt. i did the best that i could do to take care of myself. i am here, why i am not sure, while some others have not been so fortunate. but i feel proud that i have tried my best. i told my husband that if either ( or both) of my cancers returned, i would know that i have fought hard, and i have done everything that i could possibly do to live. i am a cancer warrior, not a survivor!
having a good, positive attitude is so very helpful to having a good quality of life. my family doctor asked me if i was depressed. i told him no, and he looked very surprised. i understand the difference between clinical depression, and situational depression. i know that some people have chemical imbalances and can not help that they are depressed. but with me, i am able to choose to be happy. i choose happiness- i have not let cancer beat the pollyanna attitude out of me. when i was little and i would get sick, i would tell my dad " don't worry, i will feel better tomorrow." that is pretty much how i feel now, as an adult. i am not saying that things are always puppies, butterflies and rainbows for me, but i try to make the best of what happens. in other words, if i get a bunch of lemons, i make lemonade- just like alex boye does.
thyroid cancer is NOT the good cancer! i think that this will have to be said about a million more times before word gets around. or before people listen and understand. all of you out there who are thyroid cancer patients are not just survivors, you are warriors. just like me.
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