V O L U M E 1 0 , I S S U E 1 // S P R I N G 2 0 1 2 IN THIS ISSUE: 1 Madame Marie Curie 3 My cottage dream 4 Decision Making about RadioActive Iodine Therapy 5 ASK THRY’VORS 6 Thriving Thry’vors 8 LID RECIPE BOX 8 POEM Editor’s Note Happy Spring Canada! What a year it has been! From my diagnosis of papillary thyroid cancer on November 19, 2010, surgery, and RAI to my whole body scan, blood tests, and six month follow-up, many of you can all relate to the highs and lows of having such a recent diagnosis of the disease. Through the arts and writing, I have navigated my cancer journey. Now I am excited to share my skills with you, the Canadian Thyroid Cancer community, as the new Editor/Committee Chair of Newsletter Committee. One thing I have learned so far is that we, thyroid cancer survivors, are everywhere—Hollywood, my workplace, classes I have attended… Yet we are not as visible as other cancer survivors. Health Canada indicates that Thyroid Cancer is the fastest growing cancer in incidence. This newsletter is one way we can share our stories, challenges, and discoveries, legitimize and draw strength from our experiences. Stephanie Wylie, the past Editor of Thry’vors News, writes about the ways in which the late scientific pioneers Marie Curie along with her husband Pierre contributed to the eventual treatment of cancer patients with radioactive elements. Perry Monaco shares his experience with Cottage Dreams, a wonderful organization which provides a well-deserved rest for cancer survivors and their families. Charna Gord gives us some food for thought when deciding if Radioactive Iodine (RAI) treatment is right for you. We also get to meet one of our amazing volunteers, Ann Dreger, and her thyroid cancer journey. Our community is not short of creativity as well with a lovely poem and my favourite Low Iodine Diet (LID) recipe, No Bake Chocolate Oatmeal Cookies. Who needs to be on the LID to enjoy them? I certainly don’t anymore. Peace, Nadia L. Hohn Editor Thyroid Cancer Canada PO Box 23007 550 Eglinton Ave. W. Toronto, ON M5N 3A8 Voice: 416 487 8267 Fax: 416 487 0601 Email: [email protected] Madame Marie Curie by Stephanie Wylie 2011 marked the 100th anniversary of the awarding of the Nobel Prize in chemistry to the remarkable Marie Curie. It was awarded, according to The Nobel Foundation, “in recognition of her services to the advancement of chemistry by the discovery of the elements radium and polonium, by the isolation of radium and the study of the nature and compounds of this remarkable element”1. The isolation of radium marked a sea of change in the way that scientists — and later, the public at large — came to understand energy and matter. And, by choosing intentionally not to patent the radium isolation process, Curie allowed for other scientific research on radium to continue unimpeded. Marie Curie’s (nee Maria Sklodowska) life was not an easy or comfortable one. Born in Warsaw, Poland on November 7, 1867, This is the 33rd in a series of seasonal newsletters from Thyroid Canada. Your comments and suggestions are most welcome. Please direct your comments to the Newsletter Committee at [email protected] Thry’vors News 1 Thry’vors News Spring - 2012 the young Curie had lost not only her mother to tuberculosis but a sister to typhus by the time she was 12 years old. Her family’s earlier involvement in Polish nationalistic revolts would lead to the loss of their wealth and property, essentially condemning Marie and her elder siblings to a life of financial struggle and difficulty getting ahead. The young Marie Curie thrived intellectually despite these hardships, graduating from high school at 15 with highest honours. While her family put a high value on learning, money was in short supply for a post-secondary education. And so, at a young age Curie worked as a tutor and later at 18, as a governess, in order to put her sister Bronia through medical studies at university. They had an agreement that Bronia would return the favour, and as soon as Bronia was trained and earning a living, she indeed helped to cover the costs that would see Marie attend the famous Sorbonne in Paris. It was here that she changed her name from Maria to the French “Marie”. Her hard work and many hours of study meant that she completed her degrees in physics and math in only three years. Before completing her math degree in 1894, however, Marie was commissioned by the Society for the Encouragement of National Industry to study the magnetic properties of different types of steel as they relate to their chemical makeup. Knowing that she needed a laboratory to conduct her experiments, she set about finding an appropriate space. At the suggestion of a Polish colleague, Curie’s search for lab space led to a meeting with her future husband and physicist, Pierre Curie. It was a fateful meeting that would change not only their personal lives, but the course of science itself. Doctors Fran Slowiczek and Pamela Peters note that “Marie Curie and her husband, Pierre, then began what became a lifelong study of radioactivity. It took fresh and open minds, along with much dedicated work, for these scientists to establish the properties of radioactive matter.” Marie Curie wrote, “The subject seemed to us very attractive and all the more so because the question was entirely new and nothing yet had been written upon it.” Antoine Henri Becquerel had already noted that uranium emanations could turn air into a conductor of electricity. Using sensitive instruments invented by Pierre Curie and his brother, Pierre and Marie Curie measured the ability of emanations from various elements to induce conductivity. On February 17, 1898, the Curies tested an ore of uranium, pitchblende, for its ability to turn air into a conductor of electricity. The Curies found that the pitchblende produced a current 300 times stronger than that produced by pure uranium. They tested and recalibrated their instruments, and yet they still found the same puzzling results. The Curies reasoned that a very active unknown substance in addition to the uranium must exist within the pitchblende. In the title of a paper describing this hypothesized element (which they Thry’vors News 2 Marie Curie undoubtedly contributed greatly to our understanding of radioactivity and the effects of x-rays. named polonium after Marie’s native Poland), they introduced the new term: “radio-active.” After much gruelling work, the Curies were able to extract enough polonium and another radioactive element, radium, to establish the chemical properties of these elements. Marie Curie, with her husband and continuing after his (sudden and accidental) death, established the first quantitative standards by which the rate of radioactive emission of charged particles from elements could be measured and compared. In addition, she found that there was a decrease in the rate of radioactive emissions over time and that this decrease could be calculated and predicted. But perhaps Marie Curie’s greatest and most unique achievement was her realization that radiation is an atomic property of matter rather than a separate independent emanation”.2 Unfortunately, the actual process of extracting radium from uranium was a physically arduous task. “It took Curie several years to produce one tenth of a litre of pure radium from tons of rock mined out of the earth. She established that one mole of radium had a mass of 226 grams. On most days she worked over a large vat outside her laboratory shed. On rainy days, she had to move inside though the lab room was cold and drafty. The latter turned out to be a blessing in disguise since noxious radon gas was being produced, and everything in the lab was contaminated. One science historian has estimated that Marie was exposed to about 1 rem ( a unit of radiation) per week. By today’s standard, a much smaller amount of .03 rem is considered dangerous. The popular press around the world declared radium a miracle drug. Marie kept a glass vial of radium salts on the stand next to her bed at home. She was enchanted with the soft, blue glow it produced in the dark. Both Marie and Pierre were swept along by all the publicity, and they played down the negative health effects they experienced. For example, their finger tips were permanently scarred, hardened, and in constant pain from handling radioactive samples. Pierre, Marie, and Becquerel had all suffered accidental burns on their skin when they carried samples of radium salts in their clothing for a few hours. Marie was always tired “without being exactly ill,” and she lost more than 15 pounds. Today, it is well-established that fatigue and depression are side-effects of radiation over-exposure. The worst tragedy occurred when, after giving birth successfully to Irene (her first child), she suffered a Thry’vors News miscarriage in her fifth month in 1903 probably due to radiation exposure3. Despite losing her life partner in 1906 and raising two daughters as a single mother, Marie Curie continued an active career in experimental radioactivity measurements. During these studies, she discovered that radiation had some negative side effects and that it could, and did, kill healthy human cells. Curie then theorized that if radiation could kill healthy cells, perhaps it could kill diseased cells. Her studies later concentrated on isolating radium for use in killing tumours. Marie Curie undoubtedly contributed greatly to our understanding of radioactivity and the effects of x-rays. The work she undertook required hours of time and patience, and very often the results took years to analyze. She received two Nobel prizes for her brilliant work (the first person to do so), but died of leukemia, caused by her repeated exposure to radioactive substances. It is important to remember, however, that through the knowledge she incurred, many hundreds and thousands of lives have been saved. 1.The Nobel Prize in Chemistry,1911. http://www.nobelprize.org/nobel_prizes/ chemistry/laureates/1911/index.html 2. http://www.accessexcellence.org/AE/AEC/CC/historical_background.php Spring - 2012 Mme Curie’s research is especially relevant to thyroid cancer patients. The principles of radioactivity are a central component of the radioactive iodine treatment (RAI) many thyroid cancer patients receive. In 1941 Dr. Saul Hertz of Boston, adapted the earlier discovery to thyroid disease. Initially he found that radioactive iodine treatment could be used as a method to ablate thyroid tissue in patients with Graves’ disease, and by 1946 he had studied its use with thyroid cancer patients. Thus RAI treatment is amongst those in longest continual use, as a form of cancer treatment. Patients are reminded of the part that both Marie Curie and Antoine Henri Becquerel played in their lifesaving discoveries each time they think of the dose of radioactive iodine treatment (RAI) they receive. The measures honour their names, as the imperial measure of RAI is known as milliCuries (mCi) and the metric equivalent is known as megaBecquerels (MBq). 3. http://www.hypatiamaze.org/marie/c_bio_p3.html More information about thyroid cancer at: National Cancer Institute http://www.cancer. gov/cancertopics/types/thyroid My Cottage Dream by Perry Monaco My family and I had a wonderful opportunity to go on a vacation after I was diagnosed with thyroid cancer. We left the worries, the bills, the doctor visits at home and drove up to Georgian Bay. We enjoyed a week in a wonderful cottage… for free. Frankly, I can’t say when we’ll have our next vacation. The two year anniversary of my first RAI was December 16th, 2011 and we’re still feeling the financial effects of being diagnosed. Cottage Dreams (www.cottagedreams.org) provided us with the opportunity to spend a week away from reality and enjoy family time we wouldn’t have been able to do otherwise. Cottage Dreams is a cancer recovery initiative and registered charity which offers cancer survivors, and their families, a week at a private, donated cottage to reconnect and rejuvenate. The application process, while extensive, is thorough but painless. Once accepted into the program, the survivor is paired up with a cottage that matches their medical and family needs. The only costs incurred by the survivor are transportation to and from the cottage and food for the week (as well as a $100 fee which has since been introduced). My family’s experience is one which will not be forgotten. The family who donated the cottage was extremely kind and generous. We loved the opportunity to play on the beach with our two year old and experience the gorgeous Georgian Bay sunsets. Through the help of Cottage Dreams, my recovery was able to leap forward. Thry’vors News 3 JAN. Thry’vors News Spring - 2012 Decision Making about RadioActive Iodine Therapy JAN. An article review by Charna Gord, MEd, RD Charna Gord is a Registered Dietitian working at a university coordinating community health placements for medical students. She underwent a total thyroidectomy for thyroid cancer in December 2007. This is the fourteenth in a series of JAN. thyroid cancer related journal article and other resource reviews that Charna has undertaken for Thry’vors News. In this review, Charna summarizes the findings of the following online journal article: Iyer, N. G., Morris, L. G. T., Tuttle, R. M., Shaha, A. R. and Ganly, I. (2011), Rising incidence of second cancers in patients with low-risk (T1N0) thyroid cancer who receive radioactive iodine therapy. Cancer, 117: 4439–4446. doi: 10.1002/cncr.26070 Journal Article Main Message: The decision to use radioactive iodine therapy (RAI) after surgery should be based on consideration of the balance between its risks and benefits for individual patients. Research Background: Decision-making for treatment with RAI for well differentiated thyroid cancers should be considered carefully. RAI is used after thyroid cancer surgery in order to lower the risk of thyroid cancer returning in any remaining thyroid tissue. It is not conclusive that RAI provides benefit for low-risk patients (as defined by the American Thyroid Association), yet there is widespread use of it. The complications arising as a result of the administration of RAI range from minor, short-term to more serious and longer term. Perhaps the most serious result is the documented increase in the incidence of second primary malignancies such as leukemia (especially in patients under the age of 45), and also malignancies in organs where RAI collects (such as in the salivary glands and the kidneys). Thry’vors News 4 Although there is no dispute with the use of RAI for patients who fall into the high-risk group, there is debate for those patients who are considered low-risk and who make up the majority of new thyroid cancer cases. What was the research objective? This study was developed to look at trends of administering RAI on patients diagnosed with well differentiated thyroid cancer who are considered at low-risk, and to determine if there was a relationship with the risk of their developing secondary primary malignancies from the RAI. How was the research conducted? In the United States, there is a population based cancer patient registry called the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER). Data obtained from this registry, for over 37,000 thyroid cancer patients who were treated between the years 1973- 2006, was analyzed. What were the research findings? From previous studies, it is known that there is an elevated risk of second primary malignancies with RAI. What this study looks at is the effect on low-risk patients, for whom the benefits of RAI are less clear. And it shows that for those patients, who would have received a lower cumulative dose of RAI as compared to patients at higher risk, there remains an increase in second primary malignancies with RAI. What were the final recommendations? The researchers recommend the design and use of a decision making tool to best consider the risks and benefits of administering RAI, especially in low-risk patients with well differentiated thyroid cancer who are under the age of 45. Thry’vors News Spring - 2012 Ask Thry’vors by Melanie Thomson The members of TCC’s Medical Advisory Panel are available to answer your general questions about every aspect of thyroid cancer. A list of our Medical Advisory Panel members appears on our website at : www.thyroidcancercanada.org/medical-advisory-panel.php All past Q&As are archived on our website. You are also welcome to post your question on our website, on the “Ask Thry’vors Submission Form”. Q1: Please explain why it is advisable for lactating women to cease breastfeeding in advance of RAI treatment. How and why does RAI collect in breast tissue and for what period of time? How long before being treated with RAI should a woman wean her baby? In cases where a mother is highly motivated to continue breast feeding after RAI treatment, can she restart lactating at a safe period post-treatment? A1: Response by Dr. Mal Rajaraman: Radioiodine collects in and is excreted by many glands including the Breast; We use the 2002 SNM recommendations: All potentially breastfeeding/lactating women should be asked if they are lactating. If so, they should be asked to stop breastfeeding, and therapy must be delayed until lactation ceases in order to minimize the radiation dose to the breast. Lactation (and the ability of the breast to concentrate large amounts of iodine) completely ceases 4–6 weeks postpartum (with no breastfeeding) or 4–6 weeks after breastfeeding stops. The patient may not resume breastfeeding for that child. Nursing may resume with the birth of another child. See Pg 859 of on SNM I-131 recommendations.1 A2: Response by Dr. Al Dreidger: 1. The lactating breast develops a high level of iodine supporters in its cell membranes. These are the proteins that facilitate the concentration of iodine from the mother’s blood into the milk. This happens to be good for the baby as iodine helps the infant brain to develop the connections that are basic to intelligence. This is good for the baby but awkward for the mother who happens to need radioiodine therapy for a thyroid cancer. Treatment before the full regression of the lactating functions will also result in a large increase of radiation dose to the mother’s breast. 2. Practically, it is necessary for lactation to be stopped for a couple of months. It is simply not practical for the mother to both safely and effectively resume breastfeeding after RAI therapy. A better solution in most cases is to negotiate with mother for the best time for therapy to be given. RAI is rarely an emergency and usually a couple of months of breastfeeding can be allowed without prejudicing the outcome of cancer management. 1. Meier, D.A et al. Procedure Guideline for Therapy of Thyroid Disease with 131Iodine. J Nucl Med 2002; 43:856–861 With thanks to the member of TCC’s Medical Advisory Panel: Murali M. Rajaraman, MD, FRCPC, Radiation Oncologist, Nova Scotia Cancer Centre, Queen Elizabeth II Health Sciences Centre; Assistant Professor, Department of Radiation Oncology and A A Driedger MD, Ph.D., FRCP (C), FACP, FCPE, Professor of Nuclear Medicine/Oncology, University of Western Ontario, London Health Sciences and member of Thyroid Cancer Canada’s Medical Advisory Panel. Hold this date: Thyroid Cancer Canada’s Annual General Meeting will be held on June 2, 2012 in the Toronto area. The location will be announced on our website. Thry’vors News 5 Thry’vors News Spring - 2012 Thriving Thry’vors by Maria Di Stasio retells the journey of our volunteers who are either currently undergoing treatment for thyroid cancer, in post treatment or remission. The purpose of these stories is to inspire and encourage those diagnosed with thyroid cancer and their loved ones. We continue our special series featuring stories of TCC volunteer members. Ann Dreger has been a volunteer at TCC since 2003. While navigating the health system at a tumultuous time in her life after being diagnosed with thyroid cancer, she turned to TCC for support and information on her condition. Today Ann continues to demonstrate her gratitude for TCC by increasing awareness for this illness and the support that exists out there; she is the Chair of the Distribution Committee, and is responsible for sending bulk packages of TCC’s printed matter such as pamphlets, information cards and booklets to doctors’ offices and clinics across Canada (over 70 packages in 2011, including over 10,000 pieces). We will see that Ann has helped raise awareness for thyroid cancer in more ways than one. While her story enlightens us because she has been cancer-free for almost nine years now, her journey includes some honourable moments that merit attention. Ann was diagnosed with thyroid cancer in January 2003; however it was back in 1998 when she first felt something was not right. Ann says she was losing more hair than usual and had ridges on her fingernails. At that time her family doctor was not concerned of any thyroid problems and during her visit did not perform any physical examination of Ann’s neck. In December 2001 Ann noticed a slight bulge on her neck so she returned to her family doctor in January 2002 and was sent for a neck scan. Ann waited months before she could see an endocrinologist and when she finally did she was referred to a surgeon. The surgeon biopsied what was a cyst on her thyroglossal duct and then Ann had to have surgery to remove the cyst. Several weeks later pathology results confirmed a papillary cancer. Ann was told she needed a second surgery to remove all her thyroid gland. Feeling uneasy about having to undergo another surgery, she decided to get a second opinion on the matter. After consulting with another surgeon at Mount Sinai who also recommended a complete thyroidectomy, Ann underwent a second surgery in January 2003. Thry’vors News 6 Ann recovered fairly quickly and resumed normal activities; she was playing recreational volleyball three weeks after surgery. Several months later Ann received a dose of radioactive iodine (RAI) as a precautionary measure to destroy any lingering cancer cells. At the end of her medical trip Ann rewarded herself with the purchase of a kayak; she finds it peaceful to glide through the quiet waters. Most of the schools in town poured out to line the streets, cheering and waving. The torch runners were photographed and interviewed. Ann purchased the torch and has preserved all clothing pieces, news clippings and other memorabilia in a shadow box. As a follow up procedure Ann has had whole body scans and visits her endocrinologist once a year to monitor her health. She goes for regular blood work to check her thyroid hormone levels and thyroglobulin count. Just a few years ago Ann had another dose of RAI; she was clear of cancer and deemed cured! When asked how she feels and if there were any side effects, Ann says her medication required some adjustments along the years which took some getting used to each time the dose changed. Ann also said she now has high blood pressure, notices changes in her skin and her hair is drier. However she doesn’t know if she can attribute these changes to her thyroid issues, the medication, or simply the aging process. Thry’vors News When Ann became involved with TCC in January 2003 it was in search for some outside support. She expressed that TCC is a site where you can ask just about anything and get an answer. Ann felt that people on this site understand your fears and know where you are coming from, something that may not always be as easily grasped by family members around you. Ann began volunteering at TCC on the phone lines talking to other women who had been diagnosed with thyroid cancer and were going through the same thing. While she was of great assistance to others, it in turn helped her just as much. However it is her journey with cancer that helped her realize many things. Namely, Ann discovered her strength and ability to cope with most situations. She also discovered who her real friends are which resonates with many of us who have been sick. A few opportunities evolved for Ann from TCC. She appeared on the Avery Haines TV health show which ran an episode that focused on thyroid health problems such as hypo- and hyperthyroidism and thyroid cancer. For the show, Ann was filmed at her home exercising and doing activities plus she and several doctors were interviewed as well. This was a unique experience for both Ann and her youngest daughter who accompanied her to the TV studio for filming. Ann mentioned that her daughter supported her through this appearance and greatly enjoyed the whole studio experience. Ann talks about another honourable moment that transpired from a Coca-Cola contest. Since 2006 Ann had been entering pin codes from Coke boxes and plastic bottles for points on the ICOKE site. One day she noticed a contest on the site so she entered her ballots every day until she came out on top. After completing a skill testing math question and writing a brief story, she was chosen to be one of the Torch Runners for the 2010 Winter Olympics. Ann believes that luck, chance, and good fate was what granted her this privilege but it seems that her perseverance also played a part. Spring - 2012 Along with other torch runners from Peterborough, North York, and Scarborough, Ann was honoured in Aurora, Ontario, by the town council with a huge gathering. Ann felt great being on the route of this run. She received a white outfit including a hat and special mittens that she wore on that unique day. Students poured out of most of the schools in town to line the streets, cheering and waving. The torch runners were photographed and interviewed. Ann purchased the torch and has preserved all clothing pieces, news clippings and other memorabilia in a shadow box. This was a special moment for Ann and she says she will forever be united with the other torch runners from Ontario. Pictures of her holding the torch make her proud. Ann was asked to appear at other family day activities in Aurora wearing her Olympic outfit and holding the torch. She made many people happy by letting them be photographed together with her and the torch. Ann reminisces about these memorable opportunities that evidently made a difference in her life. However it is her journey with cancer that helped her realize many things. Namely, Ann discovered her strength and ability to cope with most situations. She also discovered who her real friends are which resonates with many of us who have been sick.These are the friends who can be counted on and have an invested interest in you. Ann’s health outcome is encouraging since she is part of the favourable statistics that show a 98% survival rate of 5 years for those diagnosed with thyroid cancer. However she cautions that although this type of cancer may be more treatable than some others, it is still cancer. She wishes that doctors would stop saying that this is the ‘good cancer’ since there really is no good cancer. Having also been diagnosed with thyroid cancer, I can relate since countless people have told me not to worry because it’s a ‘good cancer’. As Ann says “Would you like to have it?” There is hardly anything trivial about this illness and labelling it as a ‘good cancer’ minimizes the challenges faced by patients living without a thyroid gland or diagnosed with a more aggressive form and possibly reduces the lack of public attention to this illness. Thank you Ann for giving a public face to thyroid cancer survivors across Canada! Thry’vors News 7 JAN. Thry’vors News Spring - 2012 LID Recipe Box JAN. No Bake Chocolate Oatmeal Cookies Procedure: 1. In a saucepan over medium heat combine the maple syrup, oil, cocoa and cinnamon. Boil for three minutes, stirring constantly. Remove from heat and stir in the peanut butter and vanilla until well blended. Then stir in the oats. These vegan cookies are chewy and freeze well. 2/3 cup maple syrup 1/4 cup oil 5 Tbs unsweetened cocoa powder JAN. 2. Drop by heaping spoonfuls onto waxed paper and chill to set, about 30 minutes. 1 tsp ground cinnamon 1/2 cup peanut butter Yield: 24 cookies 1 cup rolled oats [not instant] 2 tsp vanilla extract To view more than 300 LID-compatible recipes, see the TCC Low Iodine Diet Recipe Collection, 4th Edition on our website at www.thyroidcancercanada.org (at this time, the recipes are available in English only). Poem The Thyroid Gland by Maureen Harris Just a butterfly in the neck they say A simple neck check is all it takes Doesn’t bother anyone day to day But good news isn’t all that it breaks But when certain problems arise Starting with blood-work/ ultrasound and that biopsy trick Stress and concern reach as high as the skies. If the end result is the BIG C Then we are looking at a new strategy More tests, checking and looking Usual end result, surgery in the making. Results are sometimes what one would rather not predict. Post surgery a whole new regime unfolds It governs your life like you’ve never known Testing and adjusting of meds and lifestyle forever Trying to keep life in balance, without saying NEVER! Please feel free to submit your poetry to our Editor Nadia Hohn. [email protected] Thyroid Cancer Canada thanks Brightworks Interactive Marketing for newsletter-design services. Brightworks is a digital communications agency with a strong focus on healthcare, who are proud to support TCC in this way. For more information on their services, see www.brightworks.ca L ike you, we have been touched by thyroid cancer. We are a non-profit organization and we are all volunteers. If you would like to donate or to become a volunteer please visit www.thyroidcancercanada.org Thry’vors News 8 Donation cheques may be made payable to: Thyroid Cancer Canada Mail to: Thyroid Cancer Canada PO Box 23007, 550 Eglinton Ave. West Toronto, ON M5N 3A8
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