Experiences of patients and loved ones

Asklepios is in de Griekse mythologie
de god van geneeskunde en genezing.

Studies have shown that men who have been told they have breast cancer may like to read about other men’s experiences with this disease.

Openness about breast cancer
Wim, 88 years old:
“It’s not that I walk around and say I was in a hospital. A lot of my acquaintances don’t know I had surgery for breast cancer at all.”

You can read some statements and watch videos of men who have been treated for breast cancer below. Experiences are shared on the following topics:

  • (1) Confusion about breast cancer in a man
  • (2) Experiences with the use of anti-hormonal therapy (tamoxifen)
  • (3) Heredity and consequences for the family
  • (4) Sexuality
  • (5) Possibilities of nipple reconstruction/tattoo and breast aesthetics

(1) Confusion about breast cancer in a man

Reactions from the environment
Wim, 88 years old
“Breast cancer! Hey, what? Is that even possible? That’s not possible, breast cancer in a man!”

Women’s disease
Wim, 88 years old
“Breast cancer is a woman’s disease, you don’t talk about that as a man. Men like to talk about prostate cancer, but that’s actually a typical male disease.”

Being called up as a woman in the hospital
Pieter, 49 years old
“I have been called up as a woman here in the hospital.”

(2) Experiences with the use of anti-hormonal therapy (tamoxifen).

More information about anti-hormonal therapy treatment and possible side effects can be found here.

Package leaflet tamoxifen not aimed at men
Kees, 68 years old
““I recently had a detailed discussion with a pharmacy about the package leaflet for tamoxifen. It’s only a package leaflet for ladies. I know: I’ll no longer be having my period and I am not in the menopause either.”

Package leaflet tamoxifen not aimed at men
Johan, 50 years old
“I find it very unfortunate that there is no male leaflet of tamoxifen with side effects which apply to men.”

Tamoxifen side effect: depression
Johan, 50 years old
””I became totally depressed due to tamoxifen. After half a year I started to question whether tamoxifen actually works. My quality of life is really very bad.”

Stopping tamoxifen due to depression side effect
Johan, 50 years old
“I had to visit a psychiatrist to get medication for the depression I suffered as a result of tamoxifen. Then I asked ‘What is it actually stopping?’, which was about 10%. This was calculated with the Adjuvant On-line statistical programme. Then I said I will live 10% healthier. Because I am simply too young for that. It worked out well afterwards. I don’t know what it would have been like if it had come back. I’m happy now.”

No tamoxifen side effects
Pieter, 49 years old
“To date, I have not suffered from side effects when using tamoxifen. I knew I could get side effects, but it doesn’t bother me.”

Reacting differently due to tamoxifen
Jos, 70 years old
“My wife thinks that, since I’ve been using tamoxifen, 3.5 years now, I react differently than before. I don’t feel that myself.“

(3) Heredity and consequences for the family

Heredity breast cancer male line
Hugo, 78 years old
”Not everyone knows that men can get breast cancer. And what many do not know is that if you are genetically disposed with a genetic defect, with an increased risk of breast cancer, you can also pass on the genetic defect through the male line to women, who then have an increased risk of breast cancer.”

Genetic testing and consequences for children
Kim, partner, 65 years old
“All were tested with my husband and was luckily negative. Determining genetic abnormalities with an increased risk of breast cancer was also important for our daughter.“

BRCA2 mutation established
Dennis, 51 years old
“I underwent genetic testing in 2009, I know that I have a BRCA2 mutation (genetic defect). I have been examined for prostate cancer every year since 2009, but my breasts have not been examined, while as a man I also have a risk of breast cancer.“

Choice for genetic testing
Paul, 74 years old
““I already knew after three to four months that breast cancer could possibly be hereditary. This is important because I have two daughters. And then the oncologist said: ‘would you want to do that now?’ it could cause even more heartache”. Well then, I said, I’ll take that responsibility myself”

(4) Sexuality

Chemical castration
Erik, 77 years old
“I have been chemically castrated by the hormone therapy.”

Nipple as an erogenous zone has disappeared
Simone, partner, 72 years old
“Erogenous zones differ from man to man. When touched, an erogenous zone can induce sexual feelings. After my husband’s breast mastectomy, the nipple, as an erogenous zone, was gone.”

(5) Possibility of nipple reconstruction/tattoo and aesthetics

Nipple-less man
Simone, partner, 72 years old
”I am talking about my nipple-less husband.”

Choice of no nipple reconstruction/tattoo
Kees, 68 years old
“Tattooing the nipple or a nipple reconstruction are possible. But I’m a man. Some men are bothered. I can imagine how that affects a woman. If I were to walk on the beach and ask 100 people what’s wrong with that man? Of the 100 people, nobody knows. If there is even 1 woman on the beach with 1 breast, then everyone knows what’s going on. I know that for sure.”

Possibility of a nipple tattoo
Henk, 69 years old
“I heard about the possibility of a nipple tattoo at the dermatologist. That’s why I know it all. They offered it to me. You should let them do something about it. I said: “not for me”. But they did offer it to me. Also with the guarantee that it will be very beautiful.”

Aesthetic chest
Hugo, 78 years old
“People are so rude. Can’t that change? In general they say it’s not important for men. But in the end, every time you walk in a swimsuit around some rude person you see the stare. You see it.”

Videos with patient experiences

You can watch RTV Utrecht’s video, UGezond (29 September 2011) with patient Theo and oncological surgeon Dr Arjen Witkamp here.

You can watch the Dutch Breast Cancer Society’s video here, in which a man with breast cancer shares his story.

You can find photos with statements and a video of the “Lees hij voor zij” (photographer Suzanne Reitsma) photo project from 2015 with interviews with men with breast cancer from the Netherlands and Belgium here.

Interviews

In Blad B of the Dutch Breast Cancer Society, attention is also devoted to men with breast cancer. You will find a collection of articles about men from Blad B here.

You can read Blad B online here.

Interview: Oh, my apologies, you’re a man!, Pieter en internist-oncologist Dr Carolien Schröder UMCG; Telegraaf (2015).

Interview ‘He was the patient’, Harry and partner Marian, Pink Ribbon (2016).

Interview ‘While the tumour grew’ and self-portrait of photographer Willem Poelstra, NRC Handelsblad (2012).

Radio interview: Breast cancer in Michel: ‘That lump does not belong there’; Broadcaster Gelderland (2017).

Henk’s blogs: a man with breast cancer, Pink Ribbon and Breast Cancer Flanders, (2017) (Belgium):
Pink Ribbon Belgium
Breast Cancer Flanders npo.

Interview with Geert Bos, 71 years old, breast cancer – Edema and Oncology, no. 3 (September 2017)

Given an interview yourself and would you like the link included?

Have you given an interview yourself and would you like to have it published here? Contact us via: [email protected]

Foreign websites with patient experiences (in English)

http://healthtalk.org/peoples-experiences/cancer/breast-cancer-men/topics
http://malebreastcancercoalition.org/
https://www.hisbreastcancer.org/
http://malebreastcancer.ca/

Books

The Pink Unicorns of Male Breast Cancer, Alan F. Herbert, 2016 (text in English)

ISBN-10: 0995600600
ISBN-13: 9780995600607

http://pink-unicorns.weebly.com/

Male Breast Cancer, Taking Control, Professor John Boyages, MD, PhD, 2015 (text in English)

ISBN-10: 0980631173
ISBN-13: 978-0980631173

http://www.breastcancertakingcontrol.com.au/book/male-breast-cancer/

Borstkanker met puntjes (Breast cancer with points), Henk Van Daele, 2002 (text in Dutch)

ISBN-10: 9052406847
ISBN-13: 9789052406848