Information for patients and loved ones

Men with breast cancer, information for the patient

This website is specifically intended for men with breast cancer and their loved ones. We have distinguished between the following topics, in order to guide you through the maze of existing information. You will go to relevant subject by clicking on the coloured line.

These links with information can also be found on the Dutch Breast Cancer Society (BVN) website.

You can find a brochure of the Dutch Cancer Society (KWF) on breast cancer in general here.

To save or print out a patient brochure, click here

To watch a video about men with breast cancer, click on: Educational film with the aim of making men more aware and increase knowledge of male breast cancer, nursing bachelor thesis project, Jolanda Timmermans, Breast Cancer Flanders npo.

Information for loved ones

You don’t have cancer alone. Loved ones may also be looking for information and support:

Nutrition and cancer

Information about nutrition at the onset of cancer, during or after cancer treatment:

Sexuality

Some treatments will result in altered sexuality and intimacy experiences.

The websites below will provide you with information about this, as well as an explanation of the backgrounds and a number of practical exercises which may be helpful.

Heredity and genetic testing

Hereditary predisposition can play a role in the development of breast cancer in men. An example of this is a defect in a gene, also called a mutation. This mutation can lead to an unrestrained cell division, which can lead to cancer. The best known ones are the BRCA1 and BRCA2 mutations. These give an increased risk of breast cancer and possibly also the development of other forms of cancer, such as prostate and pancreatic cancer with BRCA2.
Mutations are changes in the genetic material (DNA). A carrier of a mutation in the BRCA1 gene or BRCA2 gene has a 50% chance of passing on that mutation to his child. This applies to both sons and daughters. More background information about heredity in men with breast cancer can be found here:

You will find all information about hereditary disposition regarding breast and ovarian cancer on this website. The website is managed by Oncogen, part of the Dutch Breast Cancer Society (BVN). Oncogen represents the interests of people with a hereditary/familial disposition: www.brca.nl
The Erfocentrum provides general information about heredity and hereditary and/or congenital disorders: www.erfelijkheid.nl
The Erfocentrum also offers a decision tool for deciding whether or not to undergo DNA testing: http://www.keuzehulp-dna-onderzoek.nl/

Insurance following cancer

Information about taking out various insurance policies after the cancer diagnosis:

Work following cancer

Information about working after the cancer diagnosis:

Healthcare in different hospitals in The Netherlands

Men with breast cancer can be treated anywhere in the Netherlands. You can use the BVN Breast Cancer Care Monitor to find out hospitals in your area specialised in male breast cancer. The information in the Monitor consists of the provision of care per hospital location, information and organisation regarding breast cancer care and patient experiences. The site compares the hospitals on these specific characteristics, making it easier for you to make a choice.

Breast Cancer Care Monitor, the Dutch Breast Cancer Society (BVN)

Supporting treatment

More support may be needed in addition to breast cancer treatment. The websites below can help you find support.

The Cancer Referral Guide helps patients and their loved ones to find additional treatment and counselling options which they will need at some point after diagnosis. The guide provides an overview of healthcare providers, organisations and self-help programmes: verwijsgidskanker.nl
Specialised psychosocial oncology centres and Psycho-oncology centres Cooperation and Support provide quality, accessible psychosocial care for people with cancer and their families. Visitors to specialised psychosocial oncology centres are welcomed in a homely environment. People with cancer and their loved ones can walk in without an appointment for a cup of coffee and to tell their story, participate in a relaxing or creative activity, or get in touch with peers. Specialised psychosocial oncology centres also regularly organise theme and information meetings. People who suffer from anxiety and processing complaints, persistent fatigue or depressive feelings as a result of the confrontation with cancer, can call on specialised care in a psycho-oncological centre. See: ipso.nl
Oncokompas is a digital tool which can provide insight and direction: where do you stand physically, psychologically and socially and how can you live the way you want in your situation? A questionnaire will lead to advice based on your own situation. For example, how you can take steps forward and what outside help may help you progress. Your health insurer will reimburse the use of the Oncokompas, this is not at the expense of your excess. See: oncokompas.nl
The Dutch Association for Psychosocial Oncology (NVPO) has an expert file in which care providers are specialised in the psychological treatment and psychosocial support of people with cancer and their loved ones: nvpo.nl
Care for cancer offers individual support to people with cancer. Care for cancer focuses on patients, care providers and employers. Care for cancer care consultants are experienced oncology nurses. They visit clients at home, answer questions about diagnosis and treatment and give practical tips for the home and work situation. In addition, they provide information about additional care options and refer them to, for example, specialised psychosocial oncology centres or patient associations. See: careforcancer.nl
Onconet strives to ensure patients can find an expert physiotherapist in their own living environment for guidance in maintaining or improving fitness for cancer treatment: onconet.nu
Physiotherapy and cancer: do not stop exercising if you have cancer. Keep moving! This Dutch Association for Physiotherapy in Lymphology and Oncology website has a database which you can search for edema and oncology physiotherapists:
fysiotherapieenkanker.nl
The Helen Dowling Institute (HDI) offers professional psychological care to (former) cancer patients and their families. Depending on your complaints, situation and wishes, treatments take place in the form of individual, relationship, family or group therapy. There are also two online therapies available for fatigue and anxiety after cancer. The care provided by the HDI is reimbursed from the basic insurance policy, providing you have a referral from your doctor or specialist:
www.hdi.nl

Scientific research

Patients are given the opportunity to participate in scientific research. This website pays separate attention to scientific research. You can read about which projects you can participate with as a patient under the participation in scientific research heading. You will also find summaries of various research projects currently running,or which have already been completed.

Information about men with breast cancer in English

The English term for men with breast cancer is Male Breast Cancer, this is often abbreviated to MBC. The websites below will provide you with English information about Male Breast Cancer:

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