I work for the Breast Health Promotion team at Breast Cancer Care. Our role is to promote breast awareness and breast screening. We are interested in knowing your views about breast awareness for men, in particular how to approach men and talk about it with them.
We have the following questions:
Do you feel there is a need for more breast awareness to be addressed at men specifically?
How can men be best approached about breast awareness?
Do you know of any men who are breast aware? If so, what might have prompted them to be breast aware?
I don’t think that breast cancer “awareness” needs to be targeted on men unless there is relevant information to back it up.
Women are most worried about aesthetics and self esteem but men are more worried by chemical castration and loss of libido than a sudden end to any male modelling aspirations.
What are the side effects and long term effects of Tamoxifen, Arimidex etc on men?
Does hair ever grow back after radiotherapy - chest and beard?
No-one could answer these questions for me and as far as I am aware, no-one is interested in collecting any data for results on treatment for men
All men are aware that they have breasts, but are breast cancer organisations aware of men?
Being breast aware should be aimed at all - men are told to check the lower regions but never the breast area.
Breast Cancer in men should mentioned more often - then like me on my diagnosis back in 2003 they would not be shocked when given the news.
Facts:
I am female, diagnosed twice within a week with breast cancer (one tumor in each breast) at age 33. I am a BRCA1 carrier with NO family history on my female side and limited data on my fathers side (estranged family/father) as all my cousins on my fathers side are male and no history *to date*. Even genetically it’s unlikely for me to be be diagnosed at this age with 2 cases so I can only hope that it isn’t going to manifest as strongly or at all in my male relativies.
I will not comment on the previous posters comments, as that would be unproductive but if there were more information so that I can advise my male relaties without just dropping this bomshell that would be most helpful.
As Tamoxifen and Arimidex are effective on the female Estrogen hormone I can’t see how it would be effective on men and if that is all that’s on offer then more research is certainly needed.
I find the word “awareness” to be almost meaningless.
As a man, I easily spotted an inverted nipple and with some prodding, the small lump behind it.
A bit of squeezing and poking resulted in some discharge and at that moment I had a choice, to see my doctor or to wait and see if went away.
When I went to my doctor, he said “it may be something that can be cleared up with antibiotics or it may be more serious”. When he followed this by arranging an appointment at the breast cancer unit and didn’t prescribe any antibiotics, it was pretty obvious what he thought was wrong.
I was not surprised to have cancer in my breast. There is no history of BC or any other cancer in my family but why should anyone be “shocked” as one journalist kept wanting me to say?
The issue here would be screening and I can’t see the economic viability of all men above 25 being screened by mammogram. If the cut off age was 50, would all 45 year old men think they were safe or immune?
It would be simpler to add a rider to BC adverts and campaigns that simply states: Men have breasts too.
I say this as someone who has had surgery, Chemo, RT and now on Herceptin, there is almost no specific information about BC in men, no trials where men are a study group and no feedback on side effects of treatment on men.
Any funds for “raising awareness” would be better spent on gathering some useful data - even finding out what tiny proportion of men are offered reconstruction is an unknown.
BC is the “sexy” cancer which already has much higher “awareness” than many other cancers, it also has a much better 5 year survival rate than most other cancers, so I consider that any raising of awareness in men would be detrimental to the many other cancers with more subtle or insidious symptoms and a much lower survival rate.
Hello to all,
This is an issue that i feel very strongly about,i myself have had B/C and feel that men should be told about this at an early age,it’s widely advertised about this cancer on posters and mag adverts and think that they should mention about men and (excuse me) couloured ladies.Whilst at B/C offices in london i met a lady who only thought that only the white ladies got this and i was very supprised,shocked and supportive to her.So these posters and adverts some simple but powerful changes to make.
Did you know also that out of 300 men diagnosed with B/C each year that about 70/75 also pass away from this,percentage wise that is terrible,the majority of men out there (from teens to elderly) do not know men can get this,i never knew i could.
I attended the fashion show last year and met some wonderful people,one person is going to help me in promoting this to men,its very early days yet,but we will get there.
I had a short interview with QVC and if you would like to see it please go to this link…Photo and Video Storage | Photobucket_01_1.flv
So we have a charity wanting to raise awareness, there wouldn’t be a financial interest here would there?
How about putting blue stripes on the pink ribbons for a start?
Most men don’t get BC until they are in their 70’s, which puts quite a skew on the survival statistics, so how are you going to raise awareness in the over 65’s? A poster of an elderly man feeling his breast doesn’t quite go with the sexy BC image does it?
I’m sorry I can’t get excited about men with BC, yes I have a breast missing and I’m in my early 50’s but in the grand scheme of things its no big deal; but then again I have a wife with a recurrence of tongue/mouth cancer and there’s nothing sexy or headline grabbing about that is there? No sexy prosthetics, no fashion shows for the women with disfigured faces that can only struggle to speak in a clumsy lisp.
Charities need to be careful where money is spent, £50,000 grants to see the pschological effects of breast cancer in men wouldn’t empty my wallet, but I might be more sympathetic if they figured out what the effects of the treatment were.
Sorry Clunkshift to put a bee in your bonnett,i do feel for your issues and your upset,but there are so many charities for cancer out there and they all raise millions each year.
You have a family and so do i and we all have our complications and worries in them.As for me i’m a single dad in my early fifties with no wife,struggling to bring up a four year old on my own,i want no sympathy at all and do not go looking for it.
Breast Cancer can hit you at a range of ages,the lad i know was 24yrs old when diagnosed and is now 26 and a good friend of mine even though we have such an age gap(its because we have something in common).
The fashion show is to raise awareness and i am trying to get help to set up a website for men to chat from all over the world,i just feel i want to give something back and be involved.
The poster issue was discussed in London and its not that you have a picture of a 65yr old man on it,its about having a leaflet with men and women(all origins)on it and worded correctly.Other cancer charities have these meetings but i do not know if they get feedback from there patients about which cancer they are suffering from.Breast Cancer Care is a very hard working charity,on the visits i have made to there offices they have been very keen on our feedback from all our experience’s within the group,they involve us so they can understand what we want for a better and a more understanding future,sorry but these staff work long and hard for us and i have seen it first hand,that show itself has a team which are on the go for 10 months of the year,every year.
Me personaly have lost 7 family and friends in the past 2-n-half yrs of all ages,one being my father,taken in a week from me,3 relatives taken with cancer and a friend going through lung cancer now and will not see xmas this year.
So my point is,i help if i can help,i want to live as happy and as long as i can to see my children and g/children grow.
sorry if i’ve come across harsh(not ment).
We need awareness put out there,that fashion show raises three hundred thousand plus each year,
well take care Clunkshift and all the best
p,s…i have no financial intrest whatsoever,i am doing it because i CARE!.
Lance…
“Women are most worried about aesthetics and self esteem but men are more worried by chemical castration and loss of libido than a sudden end to any male modelling aspirations”
Clunkshift, I’m sorry to contradict you but you couldn’t be further from the truth when you posted the comment above! I don’t care one jot that my Page 3 modelling days are over - never did it before BC so why should it bother me now? As for chemical castration and loss of libido being confined to male gender - how wrong you are! Those of us on Tamoxifen and Zoladex have first hand experience of it and affects us more, I believe, than “aesthetics and self-esteem”. I want my libido back too!
I am trying to fathom out how you think BC is sexy???
Sorry to contradict you but before I had BC I never thought it SEXY
or no not even now I have BC do I for one minute think it’s SEXY?
How can ANY CANCER be SEXY as you put it.
hope I havn’t offended you but it’s my CHEMO BRAIN I don’t grasp what your getting at?
ref: (clunkshift) awareness anything that can be done should be done.
Everyone can have an opinion but I do think some of your comments are in bad taste most the people on this site are doing what they can to handle the situation they find themselfs in, none by choice and dont suppose they find breast cancer sexy.
Support for all cancers and any fund raising events should be supported by all not put down
we all know people with cancer or even lost loved ones
may your god bless you all
steve
I don’t mind being unpopular, but I haven’t noticed a torrent of men commenting on this site.
The topic is Breast awareness and Breast screening and I haven’t seen any suggestions on increasing either - and the pink ribbon doesn’t exactly help show that men get BC too.
I reiterate that I do not consider charity money well spent on increasing awareness among predominantly 70 year-old men, when the important information on the effects of the treatment and indeed survival rates for men are unknown.
It is only through determined web searching and bloody minded persistance that I found out anything about treatment I receive and given that men are not offered reconstruction, how am I supposed to view women fussing about temporary hair loss (wear a wig) or if a new nipple should be constructed or tattoed?
No cancer is nice, but as a full time working taxpayer (even through chemo) and a contributor to charities, I have a vested interest in value for money.
Has anyone ever seen the written report of completed research? Why not? You paid for it so why can’t you see it?
I don’t mind taking drugs without knowing their long term effect - but why doesn’t anyone research the effects on men, even to the minimal extent of sending surveys to men undergoing treatment to write down how they are affected?
I’m not angry that “experts” don’t know, I am angry that they don’t care; and if they can’t be bothered to find out about an insignificant minority of men with BC, raising awareness or mass screening is a waste of time and money.
Or can someone justify it with a reasoned argument?
Clunkshift,
well we need more MEN like you to speak up !
lets face it all through the years nothing is given easily nothing, people have to speak out for what they want.
Your not the only person who works ( I work and pay my taxes now )and also has given to charities (numerous).
And on the reconstruction part , it is hardly the same to have a relitively flat chested (man) and to have a D cup ,missing is it?
Women would look a bit silly don’t you think ?
I guess you are on about my thread then Hair loss? if you read it through it is a group of people posting about their personal journey , including recipes, it’s just to buck each other up.
There are probably hundreds of women that don’t or won’t go on this site ( I know women now who won’t use it ) so undoubtably there are men too, probably more ( probably more in comparision to women )that won’t come on this site ( it’s up to the individual , weather they want support from the site , or some may prefer to go it alone ).
I wouldn’t say the experts don’t care , and I wouldn’t say you are insignificant either ( cos your not ! )
There are alot of things the government waste unjusified monies on but who are we ( we are the few ! ).
But I think you feel very strongly in your issues (and rightly so)
but surely you are talking more politics and economy that BC.
Just because it’s called Breast Cancer and it affects the breasts (of which men have too)just because it affects more women than men
Just because, Just because !.
I don’t know if you would feel better if it were called chest cancer?
I think you should be writing further up the tree to raise your issues, of which Lance is trying to get awareness for ALL YOU MEN .
take care Caronx
My chum Caron who contributed to the site mentioned a heated debate about lack of investment and awareness raising about breast cancer in men. My boss’s father had breast cancer, and I have read about one another, and was suprised then at the figure of 300 newly diagnosed cases each year and the relatively high mortality rates compared to diagnosed cases in women. Compared to the female statistics of course - the frequency of male diagnosis per annum is almost equalled in women every two days.
I know what you mean by ‘sexy’ I think, not in the literal sense - but more in terms of the cancer which is seen to attract high levels of funding, publicity and marketing - because of the stark statistics (44,000 females each year) and emotive issues surrounding the disease: the feeling of lost femininity, mutilation and the string of high profile celebrities who have been struck down by the disease, have shared their accounts, and in the best cases risen up again some months later like phoenixes from the ashes.
On the research issue I just read with interest about a study of male breast cancer which was announced last year at the University of Leeds. This is drawing on a sample of 300 breast cancers taken from men. The work is specifically looking at the characteristics of biomarkers and disease progression.
The questions raised about the accessibility of research - I should say are not just unique to men’s bc - but to most research in general, and in most disciplines. Far more needs to be done in terms of translating research findings into user-friendly outputs for user groups including in this case patients.
Clunkshift, if male bc is a subject you feel strongly about, why don’t you write to the Lancet or BMJ - I am sure they have letters pages, or get in touch with the Leeds researchers to see what they might suggest.
I don’t often look at the men’s forum these days (not since the heated debates a couple of years back that dwrigh128 will remember…)
How refreshing to read clunkshift’s sensible comments. The concept of ‘breast awareness’ in men as a separate health campaign is crazy…what a waste of resources…and yes the energy needs to be put at the much more difficult area of the impact of tretaments and survival etc in men who get breast cancer. There’s a real logistic problem for the research community in that so few men get breast cancer…making it harder to focus research specifically on breast acncer in men.
‘breast awareness’ ought to be part of general men’s health awareness, integrated into information about specificaly men’s cancers such as prostate and testicular. Tell men to check their balls and their pee and remind them they have breasts too.
Clunkshit is aboslutely right I think about the way that the major breast cancer charities here and in the USA promote a a ‘sexy’ image of breast cancer…lots of brave feminine youthful women having a brush with the devil and coming through smiling at the Fashion Show. (anyone interested see my blog for essay called ‘Fashion Show.’ And this image does little to focus on the issue that large numbers of people continue to die from breast acncer, that treatments often don’t work and that some people are left with permanent side effects.
One final thought…I have been using BCC forums for nearly five years an din all that time I can’t remember a single post from a man with secondary breast cancer. As Lance says points out around 70-80 men die of the disease each year, but where and how are those men getting information and support?
Hi to you Jane,
Sorry but i do not get into heated debates on all this as we all have our own and different experiences with breast cancer,all of us have different backgrounds and lifestyles.But what we can do for eachother is support oneanother because we have something in common.
Your post about not coming across men having secondary well this is a link on this site to just that.“spraed of breast cancer in the bone”,spelt like that and in the mens forum.
As for me i as all of us have my own personal story with B/C,and i have just returned from the research group interview who posted this thread and if you read their post they are not on about any “separate campaigning for men”.It is about finding how B/C affects men and the side effects from treatment,i was the one who brought up the mortality percentage in men and made it aware to the researcher.They are trying to research how it affects men thats all,also they research other cancers affecting both men and women so this particular campaign is not aimed at B/C in men.
This upsets me to see arguments over something we have all gone through,we should not be running down the people who are trying to help us,who are trying to understand what we are all going through,we should be supporting oneanother through this.I said to i need support through this “not sympathy”.Getting cancer has changed me,for the better i hope.I am so glad when i open my eyes each morning knowing i’ve got another day to spend with my children and because of having something that put me close to death i can see how short life really is,so i am gratefull for my life now and cry when i feel like crying and try to calm myself when something has upsett me.
So my point is,please let these people help us with All the cancers in this world,after all they can only learn from us and our experiences.
My point about not coming across men with secondary breast cancer on the forums was not at all to say that men don’t get mets…they do…but they don’t seem to use BCC forums. The post you refer to was written by the wife of a man with secondary bone cancer.