About this website
- Development of the website
Pink Ribbon:
https://www.pinkribbon.nl/doelbestedingen/psychosociale-zorg/2014/optimale-voorlichting-en-zorg-voor-mannen-met-borstkanker.htmlAnnual index NVPO 2016:
https://issuu.com/nvpo/docs/nvpo_jaarindex_2016?e=14606812/42178347
Patients and loved ones
Information for patients and loved ones
- Men with breast cancer, information for the patient
Patient information for men with breast cancer, Breast Cancer Society the Netherlands (BVN):
https://borstkanker.nl/nl/mannen-met-borstkankerGeneral information brochure about breast cancer, not specifically for men with breast cancer, KWF:
https://www.kwf.nl/SiteCollectionDocuments/brochure-Borstkanker.pdfEducational film with the aim of making men more aware and increasing knowledge of male breast cancer, bachelor’s in nursing thesis project, Jolanda Timmermans, Breast Cancer Flanders npo:
http://www.borstkanker-vlaanderen.be/heren.htmlBreast cancer in men in general, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/wat-is/313-borstkanker-mannenSymptoms of breast cancer in men, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/wat-is/314-symptomen-bij-borstkanker-mannenRisk factors of breast cancer in men, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/wat-is/316-risicofactoren-van-borstkanker-mannenHeredity and breast cancer men, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/wat-is/315-erfelijkheid-en-borstkanker-mannenExamination and diagnosis, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/onderzoek-en-diagnose/317-onderzoek-en-diagnose-bij-borstkanker-mannenTreatments and side effects, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/behandeling-en-bijwerkingen/320-behandeling-bij-borstkanker-mannenSurvivorship care, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/behandeling-en-bijwerkingen/324-nazorg-en-controle-bij-borstkanker-mannenConsequences, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/gevolgen/187-gevolgenDealing with cancer, Kanker.nl:
https://www.kanker.nl/bibliotheek/omgaan-met-kanker/omgaan-met/5373-na-de-behandelingNo getting better, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/niet-meer-beter-worden/251-niet-meer-beter-worden
- Information for loved ones
Information for partners, the Dutch Breast Cancer Society (BVN):
https://borstkanker.nl/nl/partnersInformation on cancer in a loved one, Kanker.nl:
https://www.kanker.nl/bibliotheek/naasten/kanker-bij-een-dierbare/9396-rol-van-naastenInformation for children and adolescents of a parent with cancer and everyone who has to deal with it, Verdriet door je hoofd Foundation:
http://www.kankerspoken.nl/
- Voeding bij kanker
General information about nutrition in cancer, Kanker.nl:
https://www.kanker.nl/bibliotheek/voeding/gevolgen/648-voedingThis website answers questions from patients about nutrition and cancer prevention, nutrition related to treatment and nutrition after cancer treatment, Integral Cancer Centre the Netherlands (IKNL), Wageningen University and Research (WUR) and National Working Group on Dietitians Oncology ( LDWO):
www.voedingenkankerinfo.nl
- Seksualiteit
Information about sexuality in men with breast cancer, Breast Cancer Society the Netherlands(BVN):
https://borstkanker.nl/nl/informatie-voor-mannen-met-borstkankerVarious brochures on sexuality in general, Rutgers, Sexuality Knowledge Centre:
http://www.seksualiteit.nl/seksuele-problemen/brochuresExercises for men, Dutch Association for Sexology:
www.seksueledisfuncties.nlExercises for men, Rutgers, Sexuality Knowledge Centre:
http://www.seksualiteit.nl/zin-lust/oefeningenoverzichtGeneral brochure about cancer and sexuality, KWF:
https://www.kwf.nl/SiteCollectionDocuments/brochure-Kanker-en-seksualiteit.pdfInformation about searching for a sexologist, Dutch Scientific Association for Sexology:
https://www.nvvs.info/
- Erfelijkheid en erfelijkheidsonderzoek
Information about hereditary burden for breast and ovarian cancer, Oncogen, part of the Dutch Breast Cancer Society (BVN):
https://brca.nl/nlGeneral information about heredity and hereditary and/or congenital disorders, Erfocentrum:
www.erfelijkheid.nlDecision aid for whether or not to undergo DNA testing
http://www.keuzehulp-dna-onderzoek.nl/
- Verzekeren na kanker
General tips for taking out insurance, Kanker.nl:
https://www.kanker.nl/bibliotheek/verzekeringen/wat-is/7403-verzekeringen10 golden tips for taking out insurance, Kanker.nl:
https://www.kanker.nl/bibliotheek/verzekeringen/wat-is/7403-verzekeringenGeneral information and tips on taking out insurance, Dutch Federation of Cancer Patient Organisations (NFK):
www.kankerenverzekeren.nlInformation about taking out tailor-made life insurance, Independer:
https://www.independer.nl/overlijdensrisicoverzekering/info/ex-kankerpatient.aspxInsuring and hereditary diseases, Erfocentrum:
https://www.erfelijkheid.nl/erfelijk-en-dan/verzekeringen-en-erfelijke-ziektes
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Werk na kanker
General information about working after cancer, Kanker.nl:
https://www.kanker.nl/bibliotheek/werk/gevolgen/2069-werken-na-kankerSupport organisations when cancer affects an employee, Care in company part of Care for cancer:
http://www.careforcancer.nl/module/careincompanySupport for employees, Re-turn:
www.re-turn.nl
- Zorg in verschillende ziekenhuizen in Nederland
Breast Cancer Care Monitor, the Dutch Breast Cancer Society (BVN):
www.monitorborstkankerzorg.nl
- Supportive treatment
Referral Guide Cancer offers an overview of care providers, organisations and self-help programmes for additional treatment and guidance options for patients and relatives, Integrated Cancer Centre the Netherlands (IKNL):
http://www.verwijsgidskanker.nl/Possibilities for psychosocial care, Walk-in centres and Psycho-oncology centres Cooperation and Support (IPSO):
www.ipso.nlDigital tool with customised advice, Oncokompas, Research Group Living with cancer and Red Kite:
www.oncokompas.nlPsychological and psychosocial guidance expertise, Dutch Association for Psycho-Oncology (NVPO)
https://administratie.nvpo.nl/Individual support at home, Care for cancer:
www.careforcancer.nlFind a physical therapist, Onconet Foundation:
www.onconet.nuFind edema and oncology physiotherapists, Dutch Society for Physical Therapy in Lymphology and Oncology (NVFL):
http://www.fysiotherapieenkanker.nl/
- Information for men with breast cancer in English
The National Cancer institute website, Male Breast Cancer Treatment (PDQ) – Patient version:
https://www.cancer.gov/types/breast/patient/male-breast-treatment-pdqThe American Cancer Society website; Breast Cancer in Men:
www.cancer.org/cancer/breastcancerinmen/detailedguide/indexFor independent information about cancer, visit Cancer Research UK’s website – the largest Charitable funder of cancer research in the world:
http://www.cancerresearchuk.org/about-cancer/breast-cancer/stages-types-grades/types/male-breast-cancer
Asking your treating doctor questions
- How to decide together with your doctor
B-bewust check-list with explanation and a video from an oncology surgeon Carmen van der Pol, UMCU, the Dutch Breast Cancer Society (BVN):
http://www.b-bewust.nl/mannen_met_borstkanker/vragenlijst
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- Three good questions to support a choice
3 good questions, Patients Federation Netherlands / Federation Medical Specialists:
http://3goedevragen.nl/
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- Second opinion
Information about requesting a second opinion, Patients Federation of the Netherlands:
https://www.patientenfederatie.nl/themas/second-opinion/
Experiences of patients and loved ones
- Videos with patient experiences
Video in which a man with breast cancer shares his story, the Dutch Breast Cancer Society (BVN):
https://borstkanker.nl/nl/mannen-met-borstkanker
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Interviews
Number of articles collected about men from Blad B, Breast Cancer Society the Netherlands (BVN):
https://borstkanker.nl/nl/informatie-en-steunRead Blad B on-line, the Dutch Breast Cancer Society (BVN):
https://borstkanker.nl/nl/archief-bInterview “While the tumour grew’ a self-portrait photographer Willem Poelstra (NRC Handelsblad 2012):
http://www.willempoelstra.nl/Terwijl-de-tumor-groeideRadio-interviews Borstkanker bij Michel: ‘That lump doesn’t belong there’ -Broadcaster Gelderland (2017):
http://www.omroepgelderland.nl/nieuws/2128394/Borstkanker-bij-Michel-Dat-knobbeltje-hoort-daar-nietBlogs Henk: a man with breast cancer – Pink Ribbon Belgium (2017):
http://www.pink-ribbon.be/nl/blog/blog-henk-een-man-met-borstkankerBlogs Henk: a man with breast cancer – Breast Cancer Flanders npo. (2017):
http://www.borstkanker-vlaanderen.be/mannen.htmlInterview Geert Bos 71 years, breast cancer – Edema and Oncology, no. 3 (September 2017)
https://www.mannenmetborstkanker.nl/wp-content/uploads/2017/07/Geert-Bos-intview-Oedeem-en-Oncologie.pdf
- Foreign websites with patient experiences English
Healthtalk.org:
http://healthtalk.org/peoples-experiences/cancer/breast-cancer-men/topicsMale breast cancer coalition:
http://malebreastcancercoalition.org/His breast cancer awareness:
https://www.hisbreastcancer.org/Male breast cancer.ca:
http://malebreastcancer.ca/
- Books
Boek: Male breast cancer taking control – Professor John Boyages MD, PhD (2015) (text in English):
http://www.breastcancertakingcontrol.com.au/book/male-breast-cancer/Boek: The Pink Unicorns of male breast cancer – Alan F. Herbert , 2016 (text in English):
http://pink-unicorns.weebly.com/
Peer contact
- Contact options via Breast Cancer Society the Netherlands (BVN)
Breast Cancer Society the Netherlands (BVN):
https://borstkanker.nl/nl/stel-je-vraag
https://borstkanker.nl/nl/Een-op-een-contact
https://borstkanker.nl/nl/ervaringslijn
- Representation of the Dutch Breast Cancer Society the Netherlands (BVN)’s Men Expert Group
Breast Cancer Society the Netherlands (BVN):
https://borstkanker.nl/nl/informatie-en-steun
- Contact options via Kanker.nl
Searching for peers:
https://www.kanker.nl/personenEnter into discussions in discussion groups:
https://www.kanker.nl/discussiegroepenWriting or reading blogs:
https://www.kanker.nl/blogs
- Facebook group for men with/after breast cancer:
Professionals
Information for professionals
- Incidence, prevalence, staging, diagnostics, treatment and survivorship care
Breast cancer Guideline, NABON 2012:
https://richtlijnendatabase.nl/richtlijn/borstkanker2017/borstkanker_bij_mannen.html; http://www.oncoline.nl/mammacarcinoomNCI PDQ Male Breast cancer treatment (updated 05/25/2017):
https://www.cancer.gov/types/breast/hp/male-breast-treatment-pdq
- Choice of additional treatment
Adjuvant On-line:
https://www.adjuvantonline.com/Public health England and Cambridge University:
http://www.predict.nhs.uk/
- Patient information
Patient information men with breast cancer, Kanker.nl:
https://www.kanker.nl/bibliotheek/borstkanker-mannen/wat-is/313-borstkanker-mannenPatient information men with breast cancer, the Dutch Breast Cancer Society (BVN):
https://borstkanker.nl/nl/mannen-met-borstkanker
- Figures for invasive breast cancer versus DCIS, age at diagnosis and survival
Figures about cancer, IKNL
www.cijfersoverkanker.nl
Heredity:
- Referral for genetic testing
Guideline for diagnosis and prevention for hereditary and familial tumours, Foundation for the detection of hereditary tumours (StOET) and the Netherlands Clinical Genetics Association (VKGN) (Blue Booklet) (2017):
http://vkgn.org/files/92/Blauwe%20boekje%202017%20richtlijnen%20oncogenetica.pdf
- Clinical Genetic Centres
Information about Clinical Genetics Centres, Association of Clinical Genetics Netherlands (VKGN):
http://www.vkgn.org/voorlichting/poliklinieken-klinische-genetica/
- Patient association: Oncogen
Information about the hereditary burden for breast and ovarian cancer, Oncogen, part of the Dutch Breast Cancer Society (BVN):
https://brca.nl/nl/oncogen
Psychosocial consequences
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Emotional, Distress Thermometer and other questionnaires
Guideline detecting the need for psychosocial care, working group guideline detecting the need for psychosocial care (2017), oncoline:
http://www.oncoline.nl/detecteren-behoefte-psychosociale-zorg
http://www.lastmeter.nl/
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Social and work
Guideline cancer and work, Dutch Association for Occupational Medicine (NVAB) (2017):
https://www.nvab-online.nl/content/kanker-en-werkGuideline recovery after cancer, Recovery after Cancer workinggroup guiedline (2011), oncoline:
http://oncoline.nl/herstel-na-kanker
- Spiritual
Spiritual Care Guideline, Agora work group Spiritual Care Guideline (2010), oncoline:
http://www.oncoline.nl/spirituele-zorg
Guidelines
- Specific guidelines with attention to men with breast cancer
Breast Cancer Guideline breast cancer version: 2.0, national guideline, National Breast Cancer Consultation the Netherlands (NABON) (2012):
Breast Cancer Guideline NABON Oncoline:
http://www.oncoline.nl/mammacarcinoomDutch Guideline Breast Cancer, version 2.0 NABON, English:
http://www.oncoline.nl/uploaded/docs/mammacarcinoom/Dutch%20Breast%20Cancer%20Guideline%202012.pdfBreast Cancer Guideline NABON Guidelines database:
https://richtlijnendatabase.nl/richtlijn/mammacarcinoom/mammacarcinoom_-_startpagina.htmlReview of breast cancer guideline expected end 01-12-2017:
https://richtlijnendatabase.nl/richtlijn/borstkanker_revisie/index.htmlNHG standard breast cancer, Dutch General Practitioner Society (NHG) (2016):
https://www.nhg.org/standaarden/volledig/nhg-standaard-borstkankerGuideline for diagnostics and prevention for hereditary and familial tumours, Foundation for the detection of hereditary tumours (StOET) and the Netherlands Clinical Genetics Association (VKGN) (2017) (Blue Book):
http://vkgn.org/files/92/Blauwe%20boekje%202017%20richtlijnen%20oncogenetica.pdfGuideline to inform family members of hereditary cancer, Netherlands Clinical Genetics Association (VKGN) (2012):
http://www.vkgn.org/files/92/Richtlijn%20Informeren%20Familieleden%20bij%20Erfelijke%20Kanker.pdf
- General guidelines for breast cancer do not devote specific attention to men with breast cancer
Breast Cancer Guideline, Royal Dutch Society for Physiotherapy (KNGF)(2009):
https://www.fysionet-evidencebased.nl/index.php/richtlijnen/evidence-statements-openingspagina/borstkankerLymphedema guideline, Dutch Society for Dermatology and Venerology (NVDV) (2014):
https://richtlijnendatabase.nl/richtlijn/lymfoedeem/lymfoedeem_-_korte_beschrijving.htmlCancer Pain Guideline, Dutch Association of Anaesthesiology (NVA) (2015):
http://www.anesthesiologie.nl/uploads/publicaties/Richtlijn_Pijn_bij_kanker_def.pdfGuideline for detecting the need for psychosocial care, national guideline, working group guideline for detecting the need for psychosocial care and Distress Thermometer (2017):
http://www.oncoline.nl/detecteren-behoefte-psychosociale-zorg
http://www.lastmeter.nl/Guidelines for palliative care, Integrated Cancer Centre the Netherlands (IKNL)(2017):
http://www.pallialine.nl/Cancer and Work Guidelines, Dutch Association for Occupational Medicine, (NVAB) (2017):
https://www.nvab-online.nl/content/kanker-en-werk
Scientific research
Overview of completed studies
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Study: Genotyping and Phenotyping of Male Breast Cancer, Robert Kornegoor:
https://dspace.library.uu.nl/bitstream/handle/1874/256263/kornegoor.pdf;sequence=1
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Study: Male Breast Cancer BOOG 2009-04
Information study Breast Cancer Research Group (BOOG):
https://www.boogstudycenter.nl/studie/222/retrosp-male-bc.html
Overview of current studies
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Study: Male Breast Cancer: prospective into perspective BOOG 2013-02
Information study Breast Cancer Research Group (BOOG):
https://www.boogstudycenter.nl/studie/266/prosp-male-bc.htmlPatient information study, kanker.nl:
https://www.kanker.nl/bibliotheek/artikelen/2624-boog-2013-02-prospmalebc-borstkanker
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Research: Optimal information and care for men with breast cancer
Information on financing of the Pink Ribbon project:
http://www.pinkribbon.nl/doelbestedingen/psychosociale-zorg/2014/optimale-voorlichting-en-zorg-voor-mannen-met-borstkanker.htmlInformation on project: Annual index NVPO, 2016:
https://issuu.com/nvpo/docs/nvpo_jaarindex_2016?e=14606812/42178347Website www.mannenmetborstkanker.nl
www.mannenmetborstkanker.nl
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Research: Experiences of men tested for BRCA1/2 gene mutations
Hereditary (=Hereditary) Breast and ovarian cancer Research the Netherlands, HEBON
www.HEBON.nlWebsite www.mannenmetborstkanker.nl
www.mannenmetborstkanker.nl
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Study: The differences and similarities in hormonal therapy sensitivity between male and female breast cancer
https://www.nki.nl/divisions/oncogenomics/zwart-w-group/
Patient study participation
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Patient information trials for participation of men with breast cancer
Kanker.nl:
https://www.kanker.nl/bibliotheek/kankeronderzoeken?utf8=%E2%9C%93&trial_search_criteria%5Btumor_types%5D%5B%5D=borstkanker&trial_search_criteria%5Bgenders%5D%5B%5D=maleInternational studies on breast cancer in men
Clinicaltrials.gov:
https://clinicaltrials.gov/
Searching scientific articles
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Searching scientific articles:
Pubmed US National Library of Medicine, National Institutes of Health:
https://www.ncbi.nlm.nih.gov/pubmed/
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Explanation of use of search terms pubmed
US National Library of Medicine:
https://www.nlm.nih.gov/bsd/mms/medlineelements.html
More information
Patient brochures
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General patient brochures
KWF Breast cancer:
https://www.kwf.nl/SiteCollectionDocuments/brochure-Borstkanker.pdfKWF Cancer and sexuality:
https://www.kwf.nl/SiteCollectionDocuments/brochure-Kanker-en-seksualiteit.pdfNFK Cancer and working:
https://nfk.nl/over-nfk/brochures/KWF folder Lymphedema:
https://www.kwf.nl/SiteCollectionDocuments/brochure-Lymfoedeem-bij-kanker.pdfErfocentrum brochure – Insurance and Heredity
https://www.erfelijkheid.nl/sites/default/files/2017-09/Verzekeren%20en%20erfelijkheid.pdfErfocentrum brochure – Cancer and Heredity: How do I tell my family?
https://www.erfelijkheid.nl/sites/default/files/2017-08/Kanker%20en%20erfelijkheid%20Hoe%20vertel%20ik%20het%20mijn%20familie.pdf
Other links:
Surgical Oncology