Rare Cancers and Related Disorders

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Menu: Rare Cancers and Related Disorders Rare Cancers and Associated Disorders Cancer of Unknown Primary Site Metastatic Cancer Langerhan's Cell Histiocytosis Mesothelioma Carcinoid Tumors Neurofibromatosis Germ Cell Tumours Desmoplastic Small Round Cell Tumour Desmoid Tumour Li-Fraumeni Syndrome Malignant Rhabdoid Tumour -Non Renal Ataxia-telangiectasia Nijmegen Breakage Syndrome Rothmund-Thomson Syndrome Rare Cancers and Associated Disorders (13 links) There are well over a hundred different kinds of cancer, these include very rare types not covered in this guide. In addition there are a variety of "associated disorders", these may include a) diseases that are not cancerous but may be related to cancer / cancer treatment, b) benign diseases that are often treated by oncologists, and c) benign diseases that may result in an increased risk of subsequently developing cancer. Patient's information for Pheochromocytoma (CancerNet) Information about the disease, staging, and treatment overviews. It is reviewed each month by a panel of medical experts. Adenoid Cystic Carcinoma (ACC) Support Group an international support group and Email list - the web site includes newsletter, medical literature, links etc. Meningioma Homepage Harvard Medical School National Organization for Rare Disorders, Inc The site includes a searchable database of rare diseases. Rare Tumours of Childhood (UK) a factsheet produced by the United Kingdom Children's Cancer Study Group and CancerBacup linked to the UKCCSG booklet "A Parent's Guide to Children's Cancers". RARE-CANCER - Support List for Rare Cancers (ACOR) Stories and Faces: Other / Rare Cancers (Pediatric Oncology Resource Center) List of home pages of children. ********** Information for Health Professionals *********** Physician's PDQ statement for Pheochromocytoma (CancerNet) A referenced overview of the disease, cellular classification, staging, and current treatment overviews. It is reviewed each month by experts at the NCI. Physician's PDQ Statement for Superior Vena Cava Syndrome (CancerNet) Case study: A 59 yr female with poorly differentiated squamous ca (inguinal lymph node) (Department of Pathology, University of Pittsburgh) Childhood Carcinomas and Other Malignant Epithelial Neoplasms (USA) Part of a SEER report on cancer incidence and survival among children and adolescents; 1975-1995. PDF format. Rare Genetic Diseases In Children an Internet gateway Rare Genetic Diseases In Children - Support Resources Directory by Paul Murphy Cancer of Unknown Primary Site (4 links) Patient's information for Carcinoma of unknown origin (CancerNet) Information about the disease, staging, and treatment overviews. It is reviewed each month by a panel of medical experts. ACUP - Information and Support for Adenocarcinoma of Unknown Primary (ACOR) Email list Unknown primary tumour (CancerHelp UK) Information about the cancer, diagnosis, treatment and living with the disease. ********** Information for Health Professionals *********** Physician's PDQ statement for Carcinoma of unknown origin (CancerNet) A referenced overview of the disease, cellular classification, staging, and current treatment overviews. It is reviewed each month by experts at the NCI. Metastatic Cancer (10 links) Many types of cancer can spread to other parts of the body (the process of metastasis). Metastases are secondary tumours which have developed away from the original tumour site. The different sites that a cancer may spread to can depend on the type of malignancy; for example neuroblastoma is often associated with bone metastases, while the lung is the most frequent site of metastases for bone tumours. NCI Fact Sheet: Questions and Answers About Metastatic Cancer (CancerNet) Bone medications help cancer patients Transcript and webcast with information on the use of bisphosphonates in the treatment of secondary bone cancer. When Cancer Spreads to Bone Information on secondary bone cancer and related complications with input from three experts in this area. Metastatic Tumors to the Brain and Spine (American Brain Tumor Association) Secondary Cancers of the Bone (Cancer Bacup, UK) questions and answers What Is Bone Metastasis? Overview from the American Cancer Society. ********** Information for Health Professionals *********** BMJ News: Patients with bone metastases need better care (UK) news of calls from The British Association of Surgical Oncologists for more involvement of orthopaedic surgeons in the treatment of bone metastases (December 2000) Bone Metastases (bonetumor.org) a summary with radiology images and pathology slides. Metastases to the Breast: The Diagnosis and Management of Extramammary Tumors of Breast (Virtual Hospital - University of Iowa) A referenced article by C.E.H. Scott-Conner MD PhD and B. Chaignaud MD which describes the presentation, diagnosis, and management of extramammary tumors metastatic to the breast. Radiotherapy for the palliation of painful bone metastases (Cochrane Collaboration) Abstract of a systematic review. Germ Cell Tumours (3 links) These tumours develop from germ cells. In the developing embryo germ cells migrate to the ovaries or testicles and form the ova (egg cells) or sperm cells. Germ cell tumours occur where these cells become cancerous. These tumours typically express high levels of alphafetoprotein (AFP). Germ cell tumours are most common in children and young adults, there are different sub-types including endodermal tumours (mostly found in children), dysgerminoma, teratoma, and seminoma (young men). The most common location of these tumours are the ovaries (in females) or testicles (in males). However, they can also develop in other parts of the body such as the sacrococcygeal region, brain, abdomen and other sites - this may occur when some of the germ cells in the embryo did not migrate properly. For information on germ cell tumours of the brain see the section on brain tumours. Note: germ cell tumours in children tend to be quite different to those in adults. ********** Information for Health Professionals *********** Physician's PDQ statement for Childhood extracranial germ cell tumor (CancerNet) A referenced overview of the disease, cellular classification, staging, and current treatment overviews. It is reviewed each month by experts at the NCI. Physician's PDQ statement for Extragonadal Germ Cell Tumours (CancerNet) A referenced overview of the disease, cellular classification, staging, and current treatment overviews. It is reviewed each month by experts at the NCI. Germ Cell, Trophoblastic and Other Gonadal Neoplasms (USA) Part of a SEER report on cancer incidence and survival among children and adolescents; 1975-1995. PDF format. See also Childhood Germ Cell Tumours See also Testicular Cancer (in adults) See also Ovarian Cancer (in adults) Desmoplastic Small Round Cell Tumour (2 links) A page for Sara - Desmoplastic Small Round Cell Tumour (Canada) a personal home page of a patient with DSRCT including detailed treatment diary, links etc. Desmoplasic Small Round Cell Tumour (DSRCT) (UK) pages by the partner of a young man diagnosed with DSRCT in 1987. The site includes personal treatment updates, information about the disease, treatment info, medical reports, histology slides, links etc. Medline Search: desmoplastic small round cell tumor (PubMed)   Limit search to: [Last Year]  Limit search to: [Last 2 Years]   Limit search to: [Reviews] Desmoid Tumour (0 link) Medline Search: desmoid tumor[TI] (PubMed)   Limit search to: [Last Year]  Limit search to: [Last 2 Years]   Limit search to: [Reviews] Li-Fraumeni Syndrome (2 links) Li-Fraumeni syndrome is an autosomal-dominant condition which predisposes to a range of different types of cancer. Many members of Li-Fraumeni families have a germline mutation of the TP53 gene. Compared to the general population people who inherit a mutant TP53 allele have a 25-fold increase in the chance of developing cancer by 50 yrs of age. ********** Information for Health Professionals *********** Li-Fraumeni Syndrome (University of Washington) part of the NCI funded Geneclinics.org site. Details of LFS, diagnosis, management, molecular biology, genetic counseling, resources, references etc. Li-Fraumeni Syndrome; LFS - Genetic information (OMIM, National Center for Biotechnology Information, USA) See also TP53 gene Malignant Rhabdoid Tumour -Non Renal (0 link) Medline Search: extra-renal rhabdoid tumor (PubMed)   Limit search to: [Last Year]  Limit search to: [Last 2 Years]   Limit search to: [Reviews] Ataxia-telangiectasia (4 links) Ataxia-telangiectasia (On-line Medelian Inheritance In Man, National Centre for Biotechnology Information, USA) Ataxia-Telangiectasia Children's Project, Inc. (USA) a non-profit organisation founded in 1993 to raise funds for international research into AT.The web site includes information for families and support providers, physicians and research scientists. Multilingual support. National Organization to Treat Ataxia-telangiectasia (USA) a national non-profit organisation founded in 1992 to raise funds for research. The web site includes information for families, in case of cancer, research, toll-free helpline etc. ********** Information for Health Professionals *********** Ataxia-Telangiectasia (University of Washington) part of the NCI funded Geneclinics.org site. Details of AT, diagnosis, management, molecular biology, genetic counseling, cancer risk, resources, references etc Medline Search: Ataxia-telangiectasia (PubMed)   Limit search to: [Last Year]  Limit search to: [Last 2 Years]   Limit search to: [Reviews] Swift M, et al. Incidence of cancer in 161 families affected by ataxia-telangiectasia. N Engl J Med 1991 Dec 26;325(26):1831-6    Related articles (PubMed) See also ATM gene Nijmegen Breakage Syndrome (3 links) ********** Information for Health Professionals *********** Nijmegen Breakage Syndrome (University of Washington) part of the NCI funded Geneclinics.org site. Details of NBS, diagnosis, management, molecular biology, genetic counseling, resources, references etc. Nijmegen Breakage syndrome (Online Mendelian Inheritance in Man, National Center for Biotechnology Information, USA) Nijmegen Breakage Syndrome Mutation Database (Virginia Mason Research Center, Washington, USA) includes information about NBS, references, tables of NBS1 gene mutations detected in NBS patients and a table of NBS1 polymorphisms/variants in non-NBS patients. Medline Search: Nijmegen breakage syndrome (PubMed)   Limit search to: [Last Year]  Limit search to: [Last 2 Years]   Limit search to: [Reviews] See also NBS Gene Rothmund-Thomson Syndrome (2 links) ********** Information for Health Professionals *********** Rothmund-Thomson Syndrome (University of Washington) part of the NCI funded Geneclinics.org site. Details of RTS, diagnosis, management, molecular biology, genetic counseling, risk of cancer, resources, references etc. Rothmund-Thomson syndrome (Online Mendelian Inheritance in Man, National Center for Biotechnology Information, USA) Medline Search: Rothmund-Thomson syndrome (PubMed)   Limit search to: [Last Year]  Limit search to: [Last 2 Years]   Limit search to: [Reviews] See also RecQL4 Gene