Men with BC or Male Breast Cancer?
Men with BC or Male Breast Cancer? The use of the term “male breast cancer has become taboo on this forum because it causes offence to some (possibly all) male users and possibly some female users too. I have never really understood why it causes such offence. The term is widely used elsewhere on the internet, as can be seen if you enter the phrase into an internet search engine.
I came across these links that report on some research being done into male breast cancer. Roberta has previously referred to this study in the “men diagnosed with breast cancer” part of the forum.
virtualcancercentre.com/news.asp?artid=8436
medscape.com/viewarticle/542375
Interestingly, the doctor carrying out research into therapies aimed specifically at men says:
“The rarity of male breast cancer has precluded major progress in the understanding and treatment of this disease.” She points out that treatment has often been extrapolated from female breast cancer despite distinct clinicopathologic features between the 2 diseases, “especially,” she notes, “with regard to the role of male hormones and estrogens.”
The research team “conclude there are differences in the biology, pathology, presentation, and survival between male and female breast cancer patients and they call for additional research to define a different approach and appropriate treatment strategies for men with breast cancer”
The research is looking at combining Arimidex therapy with Goserelin. Although I know that men in this country can get Arimidex, I’m not aware that this Arimidex/Goserelin combination that has been tried here.
For non-scientists to dismiss the possibility that there is a male variant of breast cancer by trying to ban the use of the phrase “Male Breast Cancer” doesn’t seem to me particularly helpful to men. It encourages people to believe that breast cancer is the same disease for men and women and potentially stifles demand for research to test whether there is a male variant of breast cancer that could be dealt with more effectively by different treatments to the ones women receive.
Fortunately I think scientists are unlikely to be influenced by the semantics of whether it’s “Male Breast Cancer” or “Men with Breast Cancer” - hence this study.
Breast Cancer Daphne - thanks for you comments - very interesting indeed.
cheers David W
Men with breast cancer… Trying to be non offensive to our male friends. Certainly don’t want David on my case! I am the opposite of a mysognist. Don’t know if there is such a word? Enlighten me, someone?
Daphne, what a brilliant post. Will give much food for thought to all of us.
Just wish I had you on my case with Crohn’s, Daphne - I have just spent 16 on the Ask the Doctor website at the Cleveland Clinic for some advice on my Crohn’ s in the context of bc.
I am to see my gastro on the 7th (husband going in that day also for a biopsy for prostate cancer - doesn’t look good as his PSA has gone up from 7.6 to 12 in 3 months), then next Monday an overnight stay for an angiogram on his heart). Still has to get an appt for an MRI scan on his spine - he can’t walk more than 30 yds.
My gastro says that the current immunosuppressant drug I take, methotrexate, for Crohn’s is of concern in the context of previous cancer. I know mtx was used years ago for bc chemo, but I had FEC. I just don’t understand this - it is some 3 yrs since I was dx with bc, and am currently NED and he has never mentioned this before. Gosh, if my gastro had to deal with daily faecal incontinence, he would surely find a quick solution.
I am overdue for a 2 monthly appt with him, and want some answers as to what I do with my current medications. I am currently taking Cipro 5 days on, 10 days off. He is talking about Thalidomide - he being one of only 3 doctors in England able to prescribe this medication from the German manufactuers. . He worked in a leper colony and used thalidomide. It is not without risks, so I am fearful as to the side effects.
Sorry to unload my problems in the bc forums, just seems the only place I can go to get some intelligent help.
Liz.
Hi Liz,
sorry to hear that both you and your husband are going through continuing health problems.
It’s interesting that Thalidomide has been mentioned as a possibility for you. It caused so much tragedy when given to pregnant women in the 60s, yet now it seems it has the potential to do good for different diseases. I hope it produces good results for you if you take it.
Coming back to words - a misogynist is a person (doesn’t have to be a man) who hates women and a misandrist is a person who hates men (again, it can be someone of either sex). Misanthropy is hatred of humanity. I don’t know what you call people who don’t hate women, men and humanity - a humanitarian perhaps?
With breast cancer - it seems to be quite widely accepted that there are differences in the disease between younger women and those who are older at diagnosis so it seems feasible that there are distinct male and female versions of the disease, as these scientists in the US suggest.
Perhaps if resources are specifically dedicated to looking into the biology, treatment and prognosis of these variants, better progress may be made in understanding the disease. This may lead to faster developments in prevention and treatment that may help all of us, women and men, including those who will be diagnosed with breast cancer in years to come.
Enlightenment! Many thanks Daphne for your reply. You would have made a fabulous doctor - at least you explain complex matters in plain English.
Now it’s the waiting game again - but this time mainly hubby I am worried about.
Grateful for your concern and advice.
Liz.
Just Fancy That! I’ve just been to my local ASDA to do a Tickled Pink audit. A bit boring really. Plenty of pink balloons and bunting, but no merchandise yet so nothing for me to foam at the mouth about. I think they start selling the goods next week.
Anyway, I picked up a copy of the ASDA magazine, which is free, and read dwrig128’s article. It seems that the term “Male Breast Cancer is no longer offensive to men because I counted it four times in the article.
Well, people, it’s sure good to know that the term “male breast cancer is no longer taboo. I wonder how much money Breast Cancer Care has been persuaded to waste by some of our fellow forum members to update their publications to change “Male Breast Cancer to “Men with Breast Cancer.
In the article it says “the worst thing about the whole experience was being a man – funny that, I thought the worst experience if you are a man or a woman with breast cancer is the thought that it can kill you.
If only Hi Daphne,
Long time no speak - I would possibly agree with your comment about 'Male Breat Cancer" if David had indeed written the article himself, but chances are he didn’t and probably wasn’t given the opportunity to vet the article before it went into print.
Your links and initial post are very interesting and if the Medical profession manage to positively identify that there is an independant disease then I agree, us men would be pragmatic enough to accept the fact, and thanks for pointing the information out.
I’m not a Doctor, but I’d like to think I’m quite a logical person and my thoughts are as follows:
The Biology of men is different, size, shape and chemical make up of the body all differ from that of the female, however men still have breast tissue - just less of it. If the breast tissue is less, then there is also less area for the tumour to grow - hence a differing pathology. By the same virtue, less Breast tissue makes the cancer more likely to transit through the lymph system as it is more likely to be adjacent to drained fluid. Simply all the differences highlighted, are also extant in women - different size, shape, and chemical make up are all unique to each individual leading to everyones biology and pathology differing.
One final comment - believe me when I say that I am frightened that one days this disease - call it what you will - will kill me!
Kind Regards
and keep up the good work
Brian
Hi Daphne, thanks for the info re the article in the Asda magazine.
Very interesting!
Belinda.
x
Media Work If I had strong feelings about the description of my cancer I would make sure I had the option to check the article before printing.
Thanks for the info Daphne.
Love Twinkle xoxo
Hello Brian I think your assertion that David didn’t have control over the ASDA article doesn’t stand up to scrutiny. It was written in the first person and the term “male breast cancer was used not once, but four times.
In the article, David says that he is a Volunteer for Breast Cancer Care. BCC volunteers can choose to have media training. As David says in the article “I now spend a lot of my time raising awareness of male breast cancer, I assume he has taken advantage of BCC’s Media Training Courses. I’m sure that one of the things these courses teach volunteers is how to keep control of articles about themselves to make sure that they are happy with the content before they go to press.
I expect David appreciates your contribution to the debate, but why not let him speak for himself?
Earlier this year, Willy posted on this forum about his taking issue with Cancer Research UK
"I would like to complain about the use of the term “male” breast cancer. I note from your information pages that “male” breast cancer is a “type” of breast cancer. This is completely wrong.
There are many types of breast cancer but “male” breast cancer is not one."
Since the research I’ve referred to in my original post suggests that there is indeed a male type of breast cancer, can we assume that an apology will be made to CRUK?
If I were a man with breast cancer, I would want the men that publicly represented me to spend time campaigning for more research to be done to try to prevent male breast cancer and understand why the survival rates in men are so much lower than women and whether men would do better with different treatments to women. I would not expect them to spend their time splitting hairs on this forum and in public about the “correct term” to use for the disease in men. Nor would I expect them to encourage charities to waste precious resources “correcting” their publications and websites.
keep well
Daphne
I’m not going to be drawn… into an argument, life’s too short for that - especially when you have been diagnosed with an Invasive lobular carcinoma, (commonly known as Breast Cancer) as I was.
BCC to my knowledge are not wasting ANY additional expenditure changing the term, but are likely to change the term in any future documentation.
We, the men, and I’m fairly sure they will agree with this statement; are committed to trying to raise the awareness of the issue and also to try and have pertinent reasearch for the treatment of Breast Cancer in men - and if there is anything that I have said that upsets anyone, I am sincerely sorry. I have nothing but respect for any BC sufferer irrespective of gender.
I’m sure that you will correct me if I’m wrong, but it isn’t the men that keep raising this “Male” Breast Cancer issue - its you Daphne.
Reply if you wish, but I will not be posting again on this subject.
Kind Regards
Brian
Healthy debate Brian, I hope you reconsider not contributing further to this thread, as I would like to see it discussed and debated once and for all.
This whole male/female men/women thing has been festering and festering for a very long time and it would be good to see it discussed for all time in an adult fashion without it degenerating into personal insults as we have seen in the past every time this emotive subject has been mentioned.
Male members of this forum in the past constantly reminded us of the terminology we should(?) be using. This was never just a case of “would you mind “could you please this was an absolute ramming down the throat, pushing in the face crusade that occurred all across the forums (that BCC allowed). Leaving many women feeling they had done something abhorrently wrong and very upset. Daphne is quite right to draw our attention to two things. Firstly that the medical profession is exploring bc in men as being a separate illness and secondly that the ASDA article does not mirror the terminology that is used here by the male forum users. To hear that someone who so vociferously pushes this ‘men with bc’ point hasn’t ensured the article is correct is astounding.
I have secondary cancer and my illness is largely treated as a separate illness. Do you hear me harping on about it? No! I have the same bc cells that many of you have here, I have breast tissue etc. etc. BUT my illness is different. I have different treatment options, different psychosocial needs, a different outlook and need access to different support and resources. So although biologically men with bc is the same (or is it?) there is a much larger picture to be considered.
I would also like to know why the male voice is more potent within BCC than say those of us with mets? When we can’t get money spent on dedicated events, had to fight for live chat (when the men had it for mths & weren’t using it) etc. then we have every right to query money being spent on changing terminology in the literature.
You are absolutely right life is too short so shouldn’t BCC be spending their money on more important projects and ensuring we are all listened to.
Love Twinkle xoxo
Calm down… Hi to both Daphne (who has been so very supportive to me along with my husband’s current perceived prostate cancer and heart problems) and to Brian, whom I totally identify with.
I just cannot believe this silly argument about male and female stereotypes. We all have life threatening breast cancer, so why are you splitting straws?
Come on guys, let us all be a part of the breasr cancer family and draw strength from each other.
If you knew what I had been through for the past 3 years, you wouldn’t be having these arguments - a life long friend with terminal stage IV lung cancer, had his lung and then kidney removed (still happily living after 1m of treatment in America, covered by insurance) another with kidney failure and lung cancer, who sadly died at Christmas, and two friends who just dropped dead in the last year, with heart failure, one of them on holiday in Tenerife, took his wife 3 weeks to get his body back.Let’s just rejoice in how well we are all doing and support each other without this acrimony about genders.
Peace to all,
Liz.
Argument? Hi Liz,
I cannot see anyone arguing. This is a longstanding issue and if it is not discussed once and for all it will only keep on resurfacing.
Healthy debate is what is required.
Love Twinkle xoxo
Important issues Yes this is an important issue.
The language which is used to talk about cancer has an enormous impact on how cancer is perceived and I think we are right to be concerned about that language.
I had some sympathy initially with men who wanted to avoid the term ‘male breast cancer’…it seemed to me this was similar to concerns that feminists had in the 80s about using words like chairwoman rather than chair or using the word coloured rather than black of black people.
But what then irritated me was the nasty way in which one or two men ‘corrected’ women who used the ‘wrong’ word. Then I noticed BCC ditching the term: women with breast cancer’ and using the term:‘people with breast cancer’ which simply isn’t accurate given that breast cancer is overwhelmingly a woman’s disease. However I have taken the point which some men have made and have tried to use the phrase ‘men with breast cancer’ rather than ‘male breast cancer’ because I thought this was a more accurate term. Important to name ‘men’ but not to subsume ‘women’ in ‘people.’
But now Daphne has done a splendid job in uncovering research which idnetifes that that there may indeed be a ‘male breast cancer’ and so indeed it may actually be better to use this term to highlight the distinctive features of a cancer which only affects men.
Breast cancer is in any case not one disease but many, and I would like to see more acknowledgment of that in the language we use about breast cancer. For example, BCC has been very reluctant to use the term ‘triple negative breast cancer’ because scientists are not agreed on whether this constitutes a distinct sub group of breast cancer (there are arguments on both sides. ) Yet it has definitely leapt in to change its leaflets in the terminology it uses about ‘male’ breast cancer Perhaps this is a red herring but I’ll throw it in any way cause its an issue which affects me.
Finally just to support what Twinkle says about the silence and lack of information surrounding people with secondary breast cancer This is scandalous and an issue which should concern everyone with breast cancer, not just those who already have mets. We need a separate thread on this topic.
Not arguing…just contributing to the debate I hope.
Jane
Brian, I find it extraordinary that you state that “it isn’t the men that keep raising this “Male Breast Cancer” issue - it’s you, Daphne.
Did you not read my last post in which I quoted from a post Willy made on the subject back in February?
Also, in the message for Dwrig128 thread in the men’s section, David says:
“Just wish the media would stop using the Male Breast Cancer wording - there is no difference in Women or Men with BC its just Breast Cancer
I am just stating my objections to men trying to control the terminology applied to male breast cancer on this forum, in charity publications and in the media. I don’t believe there is justification for this censorship. It is the same controlling behaviour that some of us have complained about before when everytime the phrase “women with breast cancer was used, a man had to jump in and remind everyone that “men get breast cancer too.
It seems to be David that takes the lead in trying to control what is said. Strange how he stays silent during debates as to whether this bahaviour is acceptable or not.
You may not wish to debate this further Brian, but perhaps you (and the other men) would be kind enough to answer a question so we can lay this matter to rest. Can you give us an undertaking, that, in future, when someone on this forum uses the terms “women with breast cancer” and “male breast cancer” that you will not try to censor them?
My opinion Ladies,
I shall try and put into words the reason why the men on this site are keen to use the term Men with Breast Cancer:
Gender aside, and as many have pointed out during this thread there are many “minority” groups who suffer from Breast Cancer whether it be Lobular, ductal, youth, er+, er-, pr+, pr- , her2, DCIS, triple negative… the list is endless and as pointed out each one of these groups of sufferers could use that label - but it still remains that each and everyone of us has Breast Cancer.
Digressing a little to the articles that you pointed out Daphne… they were very interesting, but one particularly is a statistical report and suggests that men would benefit from specific treatment rather than just being considered and treated(medically) as post menopausal women - but quite simply everyones treatment varies from the types of Chemo used, the number of treatments and the similarly with radiotherapy aand subsequent drugs - but still everyone is being treated for Breast Cancer.
Assuming you can accept that the synergy here is Breast Cancer then I will address the ‘Male’ issue:
The main problem with men (amongst many others I hear you cry) is that they don’t know they have breasts and because of that they don’t have the first idea that they can get Breast Cancer. Using the term “Male Breast Cancer” gives rise to two issues:
Firstly; it isn’t a strong enough phrase to get the message across to MEN. If they are like me they will hear the MALE bit a switch off - because generally speaking Men are Doctor dogers, so using the term Breast Cancer in Men allows them to listen to a whole sentence before realising that it affects them too.
Secondly; it implies that it is a Male only disease - which I hope I have explained sufficiently that it isn’t, it’s Breast Cancer.
The article does highlight one important point and that is that men would benefit from specific research, but that would be expensive and who would pay given the rare occurrence.
The other Men and I have been trying to raise awareness and I have believed, because of the Male factor of being Doctor dodgers then the best people to warn them are their partners, wives, girlfriends or close friends who are girls - this is why my press has been aimed at primarily female publications, which incidently they went to print with without my vetting - inspite of requesting that I do so first.
So the theory is that by getting as many people like yourselves to tell their other halves or close friends that Breast Cancer occurs in Men, the more sucessul spreading the word and potentially saving lives.
Quite simply - more men die because they are ignorant about being able to get Breast Cancer and do not identify that they may have it early enough and stand a fighting chance of increased survival. This an issue that should be an easy one to
In trying to get the message across, I can only apologise if this appears to be pushy, and it most certainly is not aimed to detract from the female cause. At the end of the day - we are ALL still fighting Breast Cancer and trying our best to help past, current and potentially future patients.
Regards to you all
Brian
Brian Thank you for your explanation as to why you and the other men have been trying to get the “Men with Breast Cancer” message across:
You say:
"Using the term “Male Breast Cancer” gives rise to two issues:
Firstly; it isn’t a strong enough phrase to get the message across to MEN. If they are like me they will hear the MALE bit a switch off - because generally speaking Men are Doctor dogers, so using the term Breast Cancer in Men allows them to listen to a whole sentence before realising that it affects them too"
Personally I think “Male Breast Cancer” is a much stronger term than “Men with Breast Cancer”. It’s shorter and more pithy. “Men with Breast Cancer” sounds a bit twee.
You also say:
“Secondly; it implies that it is a Male only disease”
It doesn’t imply that at all. It merely raises awareness that males can get it.
If the “Men with Breast Cancer” Message is aimed at men, why have men on this forum sought to control what women say? You and the other men consistently avoid answering this question. My opinion is that, understandably, you are unhappy to have been diagnosed with a disease that is perceived as a “woman’s disease” and one of the ways you deal with it is to try to exert control over what is said about Male Breast Cancer by charities, the media and on this forum. It may help you psychologically to behave like this. It is positively damaging to the feelings of some women, as evidenced by many posts on the subject. And it detracts from the cause of women with breast cancer, particularly women with secondary breast cancer.
Nothing you have said changes my opinion. I have no qualms about using the terms “women with breast cancer” and “Male Breast Cancer” and I hope that this debate will enable many of the women on this forum to feel free to use them as well.
Unless David has anything to say on the matter that we haven’t covered, I think we’re done now, don’t you?
Daphne I’m not surprised by your response - and I have to say I didn’t think that you would agree with the reasoning.
It also appears that it isn’t me that you want to have this debate with - it’s David…
…and your right we are done.