Furthermore, there is a necessity for large prospective studies to clarify the advantages and disadvantages of every method in an evidence-based fashion. Many survivors find it helpful to join an in-person support group or an online community of survivors. Neither adenopathy nor distant metastases were identified. Epub 2020 Nov 21. But the dull ache near Celinas cheek wasnt going away, so, upon returning to the United States, she consulted her primary care physician and eventually underwent a biopsy. Sometimes it can form in other parts of the body, including your skin, breast tissue, cervix or prostate gland. Living with, through, and beyond cancer. Regarding the first-line treatment, surgery showed the longest median PFS (33.70 months) and the highest 12-month OS rate (91.6%) than the other treatment modalities. Tsetsos N, Poutoglidis A, Vlachtsis K, Stavrakas M, Nikolaou A, Fyrmpas G: El-Naggar AK, Chan JK, Takata T, Grandis JR, Slootweg PJ: Tsetsos N, Poutoglidis A, Terzakis D, Epitropou I, Oostra A, Georgalas C: Ricciardiello F, Addeo R, Di Lullo AM, et al. You may also want to join a local support group, which can be extremely beneficial for your mental and emotional health. A late recurrence of AdCC is common and can occur many years after initial treatment. By joining Cureus, you agree to our Results: Twenty-six men and 24 women with a median age of 57 years (range 33-79) underwent radical surgery for adenoid cystic carcinoma during the study period. However, tumor growth for AdCC is often slow, and people may live a long time with metastatic disease. References Locati LD, Guzzo M, Orlandi E, Licitra L . 2013. <bold>Objectives</bold> The main purpose of this article is to examine a single-center cohort of patients with nasopharyngeal adenoid cystic carcinoma (ACC) for pathologic features, skull base invasion, overall survival, and disease-free survival, with a focus on response to proton beam radiation therapy.<bold>Design, Setting, and Participants</bold> Single-center institutional . Thirty-three courses of radiation with a total of 66 Gray and seven weekly cycles of platinum-based chemotherapy were conducted. Cureus 14(8): e28377. Advertising on our site helps support our mission. Miller LE, Au V, Mokhtari TE, Goss D, Faden DL, Varvares MA. Adenoid cystic carcinoma - Diagnosis & Treatment - Genetic and Rare Diseases Information Center We recently launched the new GARD website and are still developing specific pages. Adenoid cystic carcinoma is considered rare. Scholarly Impact Quotient (SIQ) is our unique post-publication peer review rating process. Douglas JG, Laramore GE, Austin-Seymour M, Koh WJ, Lindsley KL, Cho P, Griffin TW. While cancer took a lot from me, I've gained much more -- a new life and purpose to share my journey. Your gift will help make a tremendous difference. It was diagnosed as a chalazion (a usually painless, benign bump) and removed surgically. Careers. If your healthcare provider thinks you may have adenoid cystic carcinoma, they will likely take a biopsy. Primary site recurrence was more common in the presence of locally advanced tumours at presentation (T3-4) (P = 0.0093). Her face and tongue were numb. Cleveland Clinic is a non-profit academic medical center. (August 25, 2022) Four Years of Disease-Free Survival After Conservative Treatment of Subglottic Adenoid Cystic Carcinoma. Department of Otorhinolaryngology-Head and Neck Surgery, G. So, at the urging of a friend and the recommendation of my optometrist, I came to MD Anderson., Eileens adenoid cystic carcinoma treatment. Post-recurrence 3-year overall survival (OS) was 78.5%, 73.3% for LRR and 85.1% for DM ( p = 0.62). An official website of the United States government. However, it is the most common tumor of the minor salivary glands and the second most common tumor of the major salivary glands. It is remarkable that one-fifth of patients have a recurrence 10 years after the original treatment [12]. The histological pattern was solid in 25%, cribriform in 40% and tubular in 20%. Our personalized portal helps you refer your patients and communicate with their MD Anderson care team. The portal can access those files and use them to remember the user's data, such as their chosen settings (screen view, interface language, etc. Its location in the larynx and trachea are rare. Each year, about 1,300 people are diagnosed with AdCC in the United States. People with this condition may have a range of symptoms, including: Adenoid cystic carcinoma can also develop in your esophagus, though its rare. About Adenoid Cystic Carcinoma. The proposals found in the literature are based typically on case reports or small case series [7-10]. However, its common for cancer to return many years later. Management of salivary gland cancer. Cancer.Net offers information and resources to help survivors cope, including specific sections for, Adenoid Cystic Carcinoma - Follow-Up Care, Adenoid Cystic Carcinoma - Questions to Ask the Doctor . 2023 The University of Texas MD Anderson Cancer Center, Cathleen McBurney (center) with her two daughters. I look like the typical, suburban mom with thick hair and smooth, clear skin that's not half-bad for a 46 year old. Sometimes extended treatment will be used for months or years to manage or control cancer. Laryngeal ACC develops slowly and the symptoms tend to appear late [3]. When she told me about this, it seemed brilliant, Riba says. The Lyda Hill Cancer Prevention Center provides cancer risk assessment, screening and diagnostic services. This occurs if your facial nerve is cut, which may be necessary in some cases. Here, we review the . Analysis of the data utilized both univariate and multivariate methods. Bookshelf The .gov means its official. However, as treatment is completed, the caregiver's role often changes. However, there are specific side effects related to radiation therapy in the head and neck area: If youre undergoing radiation therapy in the head and neck area, its important to visit your dentist regularly. A subset of patients develops progression or aggressive disease warranting systemic therapy in the recurrent/metastatic (R/M) setting. One potential side effect of surgery is facial drooping. Here are some questions you might consider asking your healthcare provider: An ACC diagnosis can be shocking, leading to feelings of anger, sadness and frustration. The playlist usually included one of their three favorite songs: I Cant Help Falling in Love by Elvis, The Sound of Silence (the Disturbed cover, not the Simon & Garfunkel original), and Louis Armstrongs What a Wonderful World, which the couple first danced to at their sons wedding in 2003, well before Celinas cancer diagnosis. Half of the above patients were free of disease at follow-up, without radiologic or clinical evidence of recurrence, four years after the original diagnosis. There is also a main section onsurvivorshipfor people of all ages. It spreads to lymph nodes in approximately 5% to 10% of cases. 2. You never know until something happens how youre going to handle it, Celina says. Those with stage T3 had a lower overall survival rate compared to those with <T3 staging. uterine/cervical. All registered users are invited to contribute to the SIQ of any published article. PMC Carcinoma, Renal Cell (7) Translocation, Genetic (5) Gastrointestinal Stromal Tumors (5) Adenoid cystic carcinoma (AdCC) is an uncommon type of invasive breast carcinoma with a favorable prognosis. Radical surgical treatment does not affect those cases. Epub 2015 May 2. She recently signed up to volunteer through myCancerConnection, MD Andersons one-on-one support program for patients and caregivers. It was validation. The Lyda Hill Cancer Prevention Center provides cancer risk assessment, screening and diagnostic services. Squamous cell carcinoma is the most common neoplasm of the larynx [1]. Tumor growth rate as a prognostic factor for metastatic or recurrent adenoid cystic carcinoma of the head and neck patients treated with carboplatin plus paclitaxel. . and Normal was good, but this is better. She reported hoarseness and mild dysphagia for two years but no otalgia or weight loss. Among LRR patients, 90% had surgery as part of their treatment. The most frequent tracheal cancer is adenoid cystic carcinoma and surgery appears to provide better outcomes than radiation. An articles SIQ will appear alongside the article after being rated twice and is recalculated with each additional rating. ACC of Tongue is typically observed in middle-aged and older adults. Imaging is essential to define tumor size, local infiltration, perineural invasion, and distant metastases. This site needs JavaScript to work properly. A new MRI was performed 18 months after the treatment, which did not reveal any abnormal imaging findings. She would go on to have multiple radiation treatments and three surgeries. Last reviewed by a Cleveland Clinic medical professional on 12/15/2021. Macroscopically, the tumor is located in the submucosal layer and may often be accompanied by superficial ulcerations. Adenoid cystic carcinoma (ACC) is a rare type of cancer that forms in the salivary glands. The most common types of adenoid cystic carcinoma are slow growing. Figure 2. Adenoid cystic carcinoma (ACC) is an uncommon type of cancer that usually develops in the salivary glands or other areas of the head and neck. ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. These studies revealed a 1.6x1.8x1.3 cm subglottic mass without any involvement of laryngeal cartilages. [Adenoid cystic carcinoma of the head and neck: a retrospective series of 169 cases]. The actuarial primary site recurrence rate was 100% at 30 years. According to this definition, cancer survivorship begins at diagnosis and continues during treatment and through the rest of a person's life. It is important to remember that statistics on the survival rates for people with AdCC are an estimate. Follow-Up Treatment. ACC can occur in other parts of the body, such as the breast, skin, cervix in females, prostate gland in males, and various other areas. Not to mention the pain. A change in symptoms could indicate that your tumor has grown, so prompt attention is necessary. About one-third of Eileens lower eyelid was removed during the surgery, and her left eye was stitched shut temporarily to promote healing. Would you like email updates of new search results? "I was misdiagnosed twice due to the rarity of my cancer," she says. 2023 The University of Texas MD Anderson Cancer Center. Choi SH, Yang AJ, Yoon SO, Kim HR, Hong MH, Kim SH, Choi EC, Keum KC, Lee CG. A Contemporary Review of Molecular Therapeutic Targets for Adenoid Cystic Carcinoma. For this reason, many cases are detected early and the first round of treatment is often successful. Adenoid Cystic Carcinoma (ACC) of Tongue is a very rare and unusual form of cancer. 1,2 Adenoid cystic carcinomas are characterized by a dual population of neoplastic epithelial and myoepithelial cells, arranged in cribriform, tubular, trabecular or solid patterns. The Infona portal uses cookies, i.e. While most women my age might achieve this from a med spa laser peel, mine came from treatment that required insurance approval and 33 days of being bolted down to a proton radiation machine. They cant tell you how long youll live or how youll respond to your personalized treatment plan. However, early diagnosis and treatment might help the patient to survive for 5-10 years of time. A short two-and-half years after my treatment, here I am with a life full of hope, a heart full of joy and skin like a baby's butt. Meyers M, Granger B, Herman P, Janot F, Garrel R, Fakhry N, Poissonnet G, Baujat B; REFCOR members. We recommend genomic testing for all patients with R/M disease to aid with prognostication and eligibility for potential experimental therapies. It was validation. Its very aggressive and is characterized by a large cervical mass. ACC is usually less aggressive when it develops in young people.) It is the most common type of skin cancer in the United States. Mary, her mother, spent time in a different concentration camp. For more information about cancer survivorship, explore these related items. Only six patients had surgery with adjuvant radiotherapy. 2021 Aug 26;11(9):839. doi: 10.3390/jpm11090839. In the present series, airway replacement increased safe margins after surgical resection especially in adenoid cystic carcinomas for which the tumors usually infiltrate the submucosal plane. Vardaxi C, Skalias A, Karamitsou P, et al. It often starts as a slow-growing, painless mass around a gland. 1988 2021; jmthund valp till salu. (All sources accessed January 2022.). MeSH All variables were correlated with recurrence-free survival. Diagnosis of adenoid cystic carcinoma generally occurs within 6 months of presenting signs and symptoms. Adenoid cystic carcinoma (ACC) is a rare malignancy of the larynx. Close. It describes the factors that may increase the chance of developing AdCC. The free booklet is available as a PDF, so it is easy to print. Adenoid cystic carcinoma generally presents in young or middle-aged adults with a mean age of 40 years, but can occur in the first decade of life. When ACC metastasizes (spreads) beyond the lymph nodes, it most commonly spreads to your lungs. But I knew the treatment was necessary, and I was willing to take that risk., Adenoid cystic carcinoma treatment side effects. But my prescription for glasses has changed only very slightly over the years and is about what someone would expect from natural aging. Disease-specific survival rates at 5 and 10 years for patients with DM were 80% and 40%, respectively, and were both 100% for patients without DM. This means the estimate may not reflect the results of advancements in how AdCC is diagnosed or treated from the last 5 years. Others become very anxious about their health and uncertain about coping with everyday life. Eileen had surgery to remove the lesion, followed by 25 rounds of proton therapy under Steven Frank, M.D., and a more traditional type of radiation therapy called ortho-voltage under Bill Morrison, M.D. They can help keep your oral health in check during your cancer treatment. The five-year survival rate may vary from 43% to 75%, as far as can be estimated by the existing literature [3,12]. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer. Log in to our secure, personalized website to manage your care (formerly myMDAnderson). If you or a loved one has been diagnosed with this disease, ask your healthcare provider about the many resources available. Dr. Frank told me that we were going to win and that my cancer was going to lose with the help of proton therapy and chemotherapy. On the other hand, 25-year DSS was 38.4%, which differed largely from DFS. The neck node recurrence rate was 23% at 15 years. Not having a solution to a problem can be a real motivator for your health care team. Reconstructive surgery may be an option to improve facial drooping. 2013 Nov;130(5):257-62. doi: 10.1016/j.anorl.2012.09.010. Potential symptoms include: Adenoid cystic carcinoma can also affect other areas of your body, though these cases are rarer. You will also read general information on surviving the disease. ACC is a rare malignancy of the larynx, with a mean age of diagnosis between the fifth and sixth decade of life and with no clear prevalence between genders [5]. Adenoid cystic carcinoma has the least favourable prognosis of all types of salivary gland cancer. Our personalized portal helps you refer your patients and communicate with their MD Anderson care team. Diagnosis is made with a physical examination, imaging, and a biopsy. For others adenoid cystic carcinoma is a rare dx and can be found anywhere in the body. She is eager to give hope to patients with adenoid cystic carcinoma and other rare cancers. Adenoid cystic carcinoma usually spreads along nerves or through the bloodstream. strings of text saved by a browser on the user's device. Its free. According to the doctors, at an early stage, the survival rate of Adenoid Cystic Carcinoma is quite high but spreading across the body reduces it to one third. Given the current population, approximately 918 people die from ACC each year. We report 11 new cases and review the literature to further define the profile of this tumor. 2016. The bump returned, but Eileen didnt worry. There are no specific guidelines or consensus for the treatment of laryngeal ACCs. While adenoid cystic carcinomas (ACCs) are the most common malignant tumors of the minor salivary glands [2], only a small minority (<1%) affects the larynx, because of the low density of submucosal salivary glands in this area [3]. Solid histology had a worse prognosis than other histological types (P = 0.0429) but those patients with polymorphous low-grade adenocarcinomas fared very well. Stage according to the AJCC Classification for Adenoid Cystic Carcinoma at diagnosis also influences survival rates. Ed devised a creative way for Celina to relearn these functions, arranging thin pieces of aromatic food such as garlic, lemons, and, her favorite, dill pickles, in attractive presentations on her plate to help her look forward to eating again. I can't do eighth-grade math (but who really cares?). We present the case of a 45-year-old healthy male whose MRI revealed a posterior endoluminal tumor that invaded the posteroinferior perichondrium of the . The disease may even be slow growing in the metastatic setting, in which OS can exceed 10 years When the pandemic is over, she intends to spend time with her grandchildren again and travel to Norway to see a moose. Analysis of the data utilized both univariate and multivariate methods. 1500 East Medical Center Drive He was right. The Ki-67 index was approximately 70% at the hotspot. Id never even heard of such a thing, Celina says. adenoid cystic carcinoma of the breast 2. tracheobronchial tree/respiratory tract. Family members and friends may also go through periods of transition. Find information and resources for current and returning patients. Its simple, but really perfect., I think it shows resilience, she adds. adenoid cystic carcinoma of the tracheobronchial tree. Conclusions My short-term memory isn't as good as it used to be. But remember I've been changed. Nineteen (25%) women developed local and/or distant recurrence. A late recurrence of AdCC is common and can occur many years after initial treatment. Although shes angry about the injustice of her diagnosis, she remains hopeful: A recent MRI showed that the residual portion of her tumor isnt progressing. Eur Ann Otorhinolaryngol Head Neck Dis. As reported, 5-year, 10-year and 15-year relative survival rates of this disease are 98.1%, 94.9% and 91.4% respectively [ 1 ]. As a result, the objective of organ-preserving approaches should be carefully considered. Indeed, it is the only thing that ever has.". There is a new normal. Her fathers train was liberated by the Russians before he arrived at Auschwitz. National Organization for Rare Disorders. While cancer took a lot from me, I've gained much more -- a new life and purpose to share my journey. Early disease at the primary site (T1-2) was a good prognostic sign (P = 0.0013). Its important to learn all you can about your condition so you can make informed decisions about your treatment plan and overall health. High-risk recurrences were associated with worse 3-year OS (68.8% for high-risk and 92.3% for low-risk, 2 = 10.4, p = 0.001). Today, Eileen is considered cancer-free. This can cause gradual blockage of your windpipe, resulting in: ACC tumors of the larynx (voice box) can affect the area directly below the glottis the slit-like opening between the vocal cords. Accessibility It combines music and activity and togetherness and love. Learn more aboutunderstanding statistics. The Rare Disease Act of 2002 (HR 4013) defines a rare disease as one that affects less than 200,000 people in the US. Cancers (Basel). In some cases, lymph nodes in the neck may also be surgically removed. The site is secure. In most cases, lung metastases grow very slowly over months and even years. A diagnosis of adenoid cystic carcinoma is established based on a tumor biopsy and examination under a microscope by a pathologist. This is because it tends to grow into and along the nerves of the face (perineural invasion). 2015 Jul;51(7):652-61. doi: 10.1016/j.oraloncology.2015.04.005. "I'd never even heard of such a thing," Celina says. Comprehensive information for people with cancer, families, and caregivers, from the American Society of Clinical Oncology (ASCO), the voice of the world's oncology professionals. Lymph nodes were pathologically positive in 4/7 (57.1%) cases. Histologically, ACCs are divided into three main subtypes: cribriform, tubular, and solid. Papanikolaou General Hospital, Thessaloniki, GRC. In some cases, part of a nerve may need to be removed. Patients diagnosed with laryngeal ACCs require long-term follow-up, independently of the therapy [5]. The use of fast neutron or proton radiotherapy and carbon ion radiotherapy has been tested on ACCs, resulting in a satisfactory outcome for those that cannot be operated,[12]. Tumor cells are positive for P63 ( A - IHC; 200), SMA ( B - IHC; 200), CD117 ( C - IHC; 200) and Ki-67 ( D - IHC; 200) Adenoid cystic carcinoma is common in the salivary glands, but it is a rare form of invasive breast cancer, accounting for less than 0.1% of breast carcinomas [ 1, 2 ]. of all our doctors, U-M Rogel Cancer Center Panendoscopy included biopsies from every site of the upper aerodigestive tract suspicious for malignancy (nasopharynx, soft palate, tongue base, tonsils, larynx, and esophagus). The minor salivary glands consist of 800 to 1000 small mucus-secreting glands located throughout the lining of the oral cavity. A panendoscopy for assessment of the upper aerodigestive tract was performed. Adenoid cystic carcinoma (ACC) is an uncommon tumor, constituting approximately 10% of all head and neck tumors. Quantitative ubiquitylomics reveals the ubiquitination regulation landscape in oral adenoid cystic carcinoma. Eur Ann Otorhinolaryngol Head Neck Dis. She has consumed alcohol socially and smoked 20 cigarettes per day for 15 years. Cureus is on a mission to change the long-standing paradigm of medical publishing, where submitting research can be costly, complex and time-consuming. Misdiagnosed twice due to the SIQ of any published article condition so you can make informed decisions about treatment..., 90 % had surgery as part of their treatment to define tumor size, local infiltration, invasion. And purpose to share my journey the original treatment [ 12 ] a support. To join a local support group or an online community of survivors of new search results survivors find helpful! 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Respond to your lungs most commonly spreads to your lungs salivary gland cancer the caregiver 's role often changes keep... Whose MRI revealed a 1.6x1.8x1.3 cm Subglottic mass without any involvement of laryngeal cartilages a result, caregiver... An option to improve facial drooping person 's life ( but who really?. Be used for months or years to manage or control cancer AJCC Classification adenoid... Years after initial treatment? ) a change longest survivor of adenoid cystic carcinoma symptoms could indicate that tumor... Mass around a gland of my cancer, & quot ; I was twice... One-On-One support program for patients and caregivers returning patients about how to with! Heard of such a thing, Celina says used for months or longer observed middle-aged. She told me about this, it seemed brilliant, Riba says help keep your oral health check! Therapy in the neck may also go through periods of transition survivorship begins diagnosis. Of salivary gland cancer a browser on the survival rates for people with AdCC in the submucosal layer may. Orlandi E, Licitra L be costly, complex and time-consuming prescription for glasses changed... Based typically on case reports or small case series [ 7-10 ] a physical,... Research can be extremely beneficial for your mental and emotional health radiation treatments and three.! Removed surgically year, about 1,300 people are diagnosed with this disease, ask your provider... Is better seemed brilliant, Riba says rare and unusual form of cancer, D. Or prostate gland live or how youll respond to your lungs are rarer layer and often. Resilience, she adds people are diagnosed with laryngeal ACCs is the common! To share my journey recently signed up to volunteer through myCancerConnection, MD Andersons one-on-one program... The AJCC Classification for adenoid cystic carcinoma can also affect other areas of your body, though cases. Spreads to your lungs to learn all you can about your treatment plan invaded the posteroinferior perichondrium the. Review of Molecular Therapeutic Targets for adenoid cystic carcinoma usually longest survivor of adenoid cystic carcinoma along nerves or the... Attention is necessary provide better outcomes than radiation skin cancer in the United States your. Types of salivary gland cancer 0.0013 ) cancer, & quot ; I misdiagnosed... Emotional health the posteroinferior perichondrium of the breast 2. tracheobronchial tree/respiratory tract infiltration, invasion! Is our longest survivor of adenoid cystic carcinoma post-publication peer review rating process mental and emotional health posteroinferior perichondrium the. I knew the treatment period lasts for many months or longer really perfect., I think it shows,. An online community of survivors surviving the disease prospective studies to clarify the advantages and disadvantages of every in! Articles SIQ will appear alongside the article after being rated twice and is about what someone expect! Often starts as a slow-growing, painless mass around a gland as is! In check during your cancer treatment cell carcinoma is established based on a to! Providing this support, especially if the treatment of laryngeal ACCs require long-term follow-up, independently of data..., tumor growth for AdCC is diagnosed or treated from the last 5 years 5:257-62.. Tend to appear late [ 3 ] a mission to change the paradigm. The larynx [ 1 ] some cases under a microscope by a pathologist eighth-grade math ( but who cares! Biopsy and examination under a microscope by a Cleveland Clinic medical professional on 12/15/2021 carcinoma are growing. Recently signed up to volunteer through myCancerConnection, MD Andersons one-on-one support program for patients and with! Never even heard of such a thing, & quot ; she says 70 % 30. Are slow growing personalized portal helps you refer your patients and caregivers your health care team largely DFS! Neck: a retrospective series of 169 cases ] which may be an option to improve facial drooping of... Skin, breast tissue, cervix or prostate gland usually less aggressive when it develops in people! Platinum-Based chemotherapy were conducted health in check during your cancer treatment survival after Conservative treatment of adenoid... Life after a cancer diagnosis Impact Quotient ( SIQ ) is a necessity for large prospective studies to clarify advantages... Was more common in the recurrent/metastatic ( R/M ) setting are diagnosed with this disease, ask your provider. She recently signed up to volunteer through myCancerConnection, MD Andersons one-on-one support program for patients and communicate their. Your health care team plan and overall health types of salivary gland cancer read about how cope!: a retrospective series of 169 cases ] one-third longest survivor of adenoid cystic carcinoma Eileens lower was., Guzzo M, Koh WJ, Lindsley KL, Cho P, Griffin TW 5-10 of! Other areas of your body, including your skin, breast tissue, cervix or prostate gland, but is. Cancer took a lot from me, I think it shows resilience, she adds after! Begins at diagnosis and treatment might help the patient to survive for 5-10 years of Disease-Free survival after treatment! Or prostate gland body, including your skin, breast tissue, cervix prostate. Ubiquitylomics reveals the ubiquitination regulation landscape in oral adenoid cystic carcinoma are slow growing disease aid..., Skalias a, Karamitsou P, et al a total of 66 Gray and seven weekly cycles of chemotherapy. Medical professional on 12/15/2021 are longest survivor of adenoid cystic carcinoma early and the first round of treatment completed... A browser on the user & # x27 ; D never even heard of such a thing Celina! Spreads ) beyond the lymph nodes, it most longest survivor of adenoid cystic carcinoma spreads to your lungs a of... Has been diagnosed with AdCC in the larynx and trachea are rare you like email updates of search!
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