I would have no problem with any of my comments being used if it helps others in any way. I think this is a very important subject.
Thank you to all of you who have contributed to this discussion. The podcast team and I have been overwhelmed by the responses we have had to the making of this programme. It's been amazing to read your replies.
One thing about the thread - it is clear to us that we will not be able to cover all the issues raised here and relating to this important subject in one show. However, in the future, we will plan for more programmes of this kind and perhaps aim to cover different aspects of body image and intimacy.
To all posters in this discussion - with regard to the show we are recording in June for release in July, I wonder if you would be willing to allow me to read out some of the comments here?
I would keep you anonymous in the recording of the show and we will not mention names or usernames. As the comments are already available on the Internet, we would be grateful if you would inform me by email at if you DO NOT want me to use your comments in the show.
Once again thank you for taking the time to write to us, you have contributed greatly to the show already by informing myself and the team of your experiences.
Clinical Nurse Specialist
I agree entirely with snow white. It's what I think that matters, not what anyone in a white coat thinks and might offer as an opinion on how I look. They say trite reassuring things. I don't think breasts look as good with a chunk out and nothing they say is going to change the way I feel about that. Plus even if I am clothed a lot of the time I still know what they look like.
So I'd rather the view I have is represented as well as others
oh snowwhite, I feel such a connection with you, thank goodness for this site!!!
Scarlet - just read your lovely poem, touches a nerve that one - I'm afraid I too feel so so sad, and like you I don't think anyone would know it if you asked them - I also have days when it doesn't seem so bad, and then unpredictably it all comes back - have been feeling quite sick last few days, after having thought I was getting better, sick like I did for months and months when it all happened, just can't believe this has happened to me and want my body back. However - this is, for me, actually progress. This time last year I can see now I was just emerging from nuclear fallout to try and make contact with the world again after being rather 'absent' from it even while walking around in it. And I was so angry. So angry. Well, I can see now that is giving way - somewhat - to sadness. And, never a day when I don't think about it, but moments when I can think about it and not flinch. So I think that we are on a journey, and we are doing the two steps forward one back kind of progression that it seems to have to be.
This may not help you, but I have thought a lot, a lot, about amputees and paraplegics and people who have lost their sight and their hearing - irrevocable loss - and I hope I don't offend if I say I identify with those people, they have to make these colossal adjustments too, and no-one would choose it to be this way. And getting back to the original subject about body image and sexuality, I think this must be an issue in one way or another for all these different impediments, and I guess, I hope, that people eventually work something out and 'regain the spark' - that is why I keep banging on about 'body image' not being understood, not by any professional I've spoken to anyway - they take it to mean loss of confidence in one's attractiveness to others. For me it means loss of an essential bodypart and loss of contact with one's physical possibilities, having to rediscover such possibilities as remain. Not principally about attractiveness to others. I agree with Bill and cherub - this is totally important, not trivial, not optional, not self-indulgent, and it affects your whole outlook on life and how well you feel. I don't think in my case it is to do with hormones, I think it is anatomical, although it is hard to know - anyway, sounds as if you are much better now your hormones are more balanced, Bill. I am shocked that women athletes would take those pills for short term gain; and arimidex will damage their bones which they need as athletes, maybe the loadbearing exercise offsets that but why do people muck about with their bodies.
By the way Jane, I do agree with you, I also loathe the sight of 'enhanced' women and think it deeply sad that they would mutilate their bodies surgically in order to produce that pitiful appearance, and that they think the loss of sensation from having to cut nerves to achieve it is worth it so they can look globulous in a bikini - priorities wrong l think most women would say, I too think normal women are beautiful; and I can also see that we are beautiful, now, as then. I do not consider that incompatible with being sexually compromised because sexual attractiveness and beauty, and prettiness, are different things, it is not just pretty people who enjoy sex (as Noel Coward said, everybody does it); and I am mechanically challenged, not just in my appearance - I can't find the levers, or they are no longer connected to the motor, shall we say. Am I really the only one who has this?
And just also want to send kind thoughts to Liz, it has all come at once for you and I wish I could do something but all I can think of saying is that you have to hang in and ride this terrible storm, storms have to blow themselves out and calmer days follow, and though this whole cancer business will never leave us, your hair will come back and you will not always feel like you do right now, think of the assault on your body that you are withstanding, and you are just a delicate human being, so how could you take all that and smile too. People on here are here to help you through - some of them are further forward than me and can tell you it gets easier, and I know we are all sending you good vibes.
Its good to know that we are not alone with our feelings. My life has totally changed. I was quite a confident person before this, loved going out and was a big flirt. I can't remember the last time I went in a pub because I just don't feel confident any more and certainly couldn't chat to the opposite sex. I feel ugly and fat. I have just started going out without my wig. The loss of my hair, eyebrows and eyelashes are a big part of this. I feel I have grown really old this last year. People don't understand how we feel and how damn hard it is for us.
A year ago I had things going for me. A year previous to this my husband and I split up - I left the marital home as couldn't live with him anymore. I was getting along okay on my own and then was hit with this last year. My husband said he wanted to look after me and even though I was apprehensive about it I also felt it was a better place to be for my 2 girls to come and see me as the marital home was still their home too. I had my op and initially he looked after me very well but then as I have got better things are deteriorating again and I feel trapped again. People say live life for today - but in reality you can't.
Good for you, these things are important in life!!
Curiously, arimidex was suppressing any osetrogen that I had (because the cancer was oesrtogen receptor positive), thus keeping my low level of testosterone in place. When I stopped taking it after the usual five years my testosterone levels were further affected because some of the testotosterone was being used to produce the low level of oestrogen that men normally have. So, I'm back on the arimidex as well as the testosterone replacement programme. It's so very complex!!
I've heard that some women - especially atheletes and bodybuilders, take things like arimidex to boost their testosterone levels!! There must be danger in that for them.
Oh sorry all
I meant to let you all know that I wrote a poem and posted it on bcpals. Didn't mean to go into one again!!!!!!!!!!
love to all Scarlet. xx
just wanted to say thet all the comments on here have been so valid. I have felt like such a fake for so long and though I am getting used to living like this it has felt so isolating so it's very re assuring to know that I am not alone. I am so very happy for the wonderful people who seem to be able to remain positive...I am most of the time but when the tears flow they really don't want to stop. It's not all the time, but it does sneak up on me. Why is it that some days I can look in the mirror and not really 'see' it all, or think about it and other days it is just so very devasting?
On a good day - glad to be alive, happy to have my hair back, stand up straight, feel good, look good.
On a bad day - Can't believe it happened, can't believe what I see in the mirror, my old clothes are too low, oh just to wear a sexy bra, where am I? where is the me I was?
As I've said before, my self image and sexuality go hand in hand with my self confidence, they feed each other and may be I do need couselling, but for me - I will never quite love myself as I did before. Sorry.
I was very interested to hear about loss of libido from a man's point of view. I totally lost my libido with my first dose of chemo in Nov 2006 as it stopped my periods and put me through a pretty much instant menopause at 45. As I am now almost a year post chemo, this situation was causing me a lot of anxiety, affecting my confidence and making me feel very fragile. I was referred to a menopause clinic recently by my oncologist - I saw a consultant gynaecologist who told me that when you go through the menopause like that it cuts off the testosterone in a woman's body immediately. This was one of the reasons I had become very short tempered an unreasonable at times.
Thankfully, I'm getting help with all this and things have kind of started coming back over the weekend - OH didn't know what had hit him after 18 months lol! I found the complete loss of libido very, very traumatic after 22 years in a wonderful and loving marriage, no wonder I was feeling so anxious at times. I think years ago my late mother's generation would have probably just thought that was an end to things and would have accepted a sexless life, but of course things are very different nowadays. I'd like to think that if I'm fortunate enough to have a reasonable long life ahead there will still be a spark there - for me it is a very important part of my life and part my deep love and respect for my husband.
Hi Snowhite( et al)
I was passed to an endocrinologist after complaining about the lack of libido post treatment.I mean really no libido, nothing. I put it down to the treatment that I was being given arimidex and to a great extent, the medics thought that that was the case. I became anaemic, (vitamin B12 injections, got osteoporosis (fosomax) and now diabetes type 2. The real key to my troubles was traced back to the chemptherapy that wrecked my testosterone. So, now I'm on a replacement programme but, sadly, keep all the other things that have happened to me. The loss of testosterone was the real key to my tirednes and lack of libido, the cause of the osteporosis, anaemia and diabetes. No mention of fertitlity issues when I was being treated with the chemo.
I now have some of that aspect of my life back and that is a bonus. I just had to recognise it as a "disability" and ask for more (treatment). I believe that everyone should should have the right to pursue all things that might help them to feel better. It took me a wee while to do that. I'm glad that I did.
Best wishes and take care all.
Filling up with tears reading your last post. You're so brilliant at putting the devastation into words as regards body image, sexuality etc. I know we're all supposed to be grateful we're still here, and believe me I am truly, they're ladies on the secondaries site who are so courageous, and I feel guilty that my problems are more image and sex related, as opposed to the fight these fabulously gritty women have to cope with on a daily basis, but I do feel so crippled sometimes by the absence of the former me. I went wall climbing today, I know it doesn't sound much, but I was off and away, way past my teenage sons and my partner. The instructor said bloody hell she's good, a natural. I was just so "chuffed", felt as if a former part of me came back. I know it doesn't sound much, but it's amazing how stupid things start to give you your confidence back. Snowwhite I think you put your heart and soul into your comments and I think your voice would be fab on the podcast.
Lots of love
I also feel it is very very important that voices like yours snowwhite are heard. Too much about the experience of breast cancer is sanitised and hidden.
But I do want to say that not everyone who has had surgery feels as you do. I don't for one. I wish I still had two breasts, but I don't feel I need two to enjoy my sexuality, to feel a woman, or to feel loved and cherished. I am not a eunuch, neither have I been dismembered..and I don't use that language of myself.
Sure my my 59 year old body no way fits the sterotypical image of grapefruit shaped breasts that stare out at us from magazines and tabloids all the time...(andwhat unpleasant images some of those are)my body is overwieght, flabby and an odd shape..but it was going that way before I got breast cancer. I'm currently nearly bald, wear a lymphodema sleeve and look pasty but right now my identity feels intact.
I hope those making the podcast can encapture the huge range of feelings expressed here.
I really relate to that about not being the same person I used to be. I still don't know who I am now, and the thing that scares me most is, am I going to have to be a lone female eunuch for...the rest of my life now, is this how it's going to be, as good as it gets? because if it is they wasted their time and took away my last good years. However Julie, on that you are an inspiration and I take encouragement from you, and I too will fight to the bitter end to restore myself.
Since this happened to me, with them failing to raise the issue of the aftermath, and then not knowing how to deal with it when it happens, it has also occurred to me that the same applies to cervical cancer screening - no-one has ever looked me in the eye and said 'do you understand that we are looking for cancer and if we find it, it means a) you'll die unless b) we dismember you more or less radically and it could end up with a hysterectomy. Or if you have a hyterectomy for any other reason they don't raise the issue of the aftermath: I told my doctor I was worried about womb cancer with tamoxifen, he dismissed this with "oh we can cure that" - cure? 'we can further dismember you and it won't upset me a bit because I'm not you', he should have said. As with breast screening, nobody looks you in the eye and says after we finish with you you will never be the same again do you want to pay that price.
I guess you will think I am completely stupid, I probably am, but until this happened to me I had no idea what I was letting myself in for, I just didn't go there in my mind, and all along the line the medics kept saying it'll probably be okay...and then suddenly they're telling me it's death or dismemberment.. and the point I am making is that it is not acknowledged how this is going to affect you, and it damn well ought to be by now, with 44,000 cases a year there must be a quarter of a million of us surviving going back forty years at a conservative estimate - a city full of damaged people trying to rebuild their identity and I do not believe the sexuality thing is a rare complication, but rather a central predictable effect and they have had every opportunity to research it but they haven't; why? Which is why I think it is so so very very very important that this has to be heard, because you do feel isolated as Louise says, if other things get said and the problem you have is not aired; I have felt this for a long time because I just don't think anybody really knows, has really explored, the meaning of the phrase "body image" though it is said a lot - and this would be an opportunity to do that.
You captured the feeling all so well. "The person I used to be" is exactly it!! Strangely enough it was the breast that didn't actually have the cancer in that caused me the most problems as well. Lost a patch of skin the size of a 50p piece and breast as it healed went to the left, so nipple is more round the side of the breast, as the nipples had been reconstructed onto the breasts before the infection took hold. I had to have the implants taken out after infection and then had no breasts at all for a few months until everything healed, and like you ended up with expanders, which were gradually expanded over the space of a few months, until "permanent" implants put in. Dress size I've haven't gone up that much, from an 8 to a 10, but like you it doesn't make a bit of difference what other people say in the way of supportive comments, it's what we see when we look in the mirror when we stripped naked , and the feeling that you'll never quite measure up again to what you once were. I hope they get your reconstruction sorted soon for you.
I think this is an excellent idea, as long as there is a cross section of views covering different ages. When i was first dx at 29 i had a lumpectomy, chemo & rads. The scar & the tissue lost wasn't that noticeable unless i wore a bikini or very low cut top, to be honest i didn't really care & a lot of the time forgot it was there. It was only the chemo & the plunge into menopause at 33 that dampened my sex drive, but it did improve.
This time around (different story), dx Dec '06, four ops later bilateral mastectomy. To be honest i hate the way i look & i mean really, 2 months before i was dx i was at a ball, long black dress, the back went down to my bum, the front down to my belly button, i was a size 10, short light brown/blonde hair, great sex life, loved going out & partying. Now i hate going out, size 14, curly dark brown-going grey hair, no sex life, can't get into any of my clothes, eye sight has got worse, so has my hearing. At the moment i am undergoing reconstruction (expander's), but due to previous rads, 8 years ago, one side is not inflating as well as the other due to the skin thinning, so i am totally lob sided. Hopefully they will sort this out soon, worst thing is it is in the breast that had no cancer this time.
I was sent a email by a friend in Canada, asking all different questions, she had answered them & i had to amend them & put my answers in, you know the emails that go round & round. One question was 'who do you miss the most?' my answer was 'the person i used to be!' & i am afraid this is true. It does not matter to me that people say 'you look great' or 'your hair really suits you', all i want to do is scream, 'well it's not great, how would you like to look in the mirror & see a stranger looking back at you' & 'how would you feel having your sexuality taken away, and every time you get undressed you can't bare to look' amongst other things.
So i am not the person i used to be & i hate the person i have become.
The podcast is going to have to reflect a cross section of people, otherwise you may make some people who listen feel isolated if they are not experiencing those particular emotions/feelings.
I have been given/ordered many booklets on mastectomy & reconstruction & they always talk about removing/reconstructing one breast & the physical/emotional implications of this, these are/where totally useless to me, they made me feel isolated & extremely angry that no consideration had been taken into account that some of us end up with no breasts at all & from my personal point of view that emotionally is very different.
Totally understand where you are coming from. Our sexual side is so much part of us and how we relate with our partners, and mastectomies just completely knock that on the head. My double recon following bilateral mastectomies in May 2005 left me feeling very insecure. On top of that I was just getting divorced, so I had to start again dating etc, nightmare when you have two jelly tots for nipples, as I didn't have my nipple tattooing until a year or so later. Recon looks fine in a bra, but without a bra, one is wonky following an initial infection, and very hard to feel sexual. Plus the implants are quite hard, my original breasts were a lovely DD, so these are a very poor substitute However, met my partner and still enjoyed a decent sex life. However, a year on following total abominal hysterectomy and removal of ovaries, that has been affected again. Also I hate the fact that everywhere you look big perfect looking breasts are constantly there, either on the telly or the papers, or just in general. It makes you feel so inadequate. Having said all of that still enjoy a sex life, and hope to for the foreseeable future. I'll fight to the bitter end to preserve it.
Thankyou so much for those kind words - I have felt so isolated, I feel I have been screaming my head off for attention to this delicate matter but polite ladies don't scream 'I want my sex life back', so I am left to wonder if other people are just reticent about the topic or am I the only one, I feel I am just an embarrassment and people just want to clap their hands over my mouth, so to speak, like when my son said, in the supermarket when he was little, after seeing elephants mating on the telly, 'how do humans mate?'. I don't even feel strong enough to volunteer to be heard on a programme like that, yet I feel it is so so so important (maybe you gathered!) that I just had to put my pennyworth in about what I wanted to hear said.
Scarlet, and Jennifer, it is so good to hear what you say - Scarlet I'm glad your man is a good one, and as you say, both partners are robbed by this; and Jennifer I am glad you have not had this particular issue, and hope you don't ever 'fall from the height', it is kind of you to commiserate and acknowledge it - I have often thought that if doctors only acknowledged this, half the pain would be taken away. They have no idea how to deal with people, that is to say, persons; they are just technicians, they fix systems.
And Bill, thank you for your reply, I found it really interesting, and forgive me I am stupid it had never occurred to me that a man would have a problem in a swimming costume I have been so absorbed in my own 'swimming costume issues,' but now it seems obvious. I am as yet unreconstructed, no doubt in many ways; I hope your reconstructed nipples are successful and your beach days are not over, I have been agonizing over reconstruction but I am terrified. You don't have to answer this but you made a cryptic remark about the endocrinologist sorting out the way the treatment had affected you longterm I presume in the "body image, sexuality and intimacy" department - I would love to hear that you feel somewhat restored in that way, because that would give me hope that I will somehow be able to rehabilitate myself too.
Oh well, anyway, just wanted to say - it has really helped me to know people out there do share this desperation, so thank you for what you said.
Thanks for your post - and all the others. Yes, indeed the loss of my two nipples and the small amount of breast tissue was the end of that erogenous area for me. Appearance was a significant factor as well. Can you imagine a man with nipples on a beach. Should I wear a T shirt?But wouldn't that look daft in the pool?
Anyway, to an extent, the appearance was a problem. To a greater extent, the sensation loss was/is a problem. However, the biggest problem is the enduring effects of all the treatments. A very nice endocrinologist has finally sorted out that for me. And an equally nice plastic surgeon has given me back the illusion, but not the feeling, of having two nipples again! I was the very first man ever referred to her for treatment post brest surgery. This is an important topic, how you feel about yourself and what you think others thinks about you, real or perceived, has a great effect on relationships.
I hope the podcast and this discussion goes well. My reason for being here is really just to ask others to be mindful that men too suffer from breast cancer and can have similar/same concerns as women.
Take care all.
Snowwhite and Scarlet, I think you have made some really good points and yet I feel differently from you ( 'bully for me' you might say - but I only hope I am not deluding myself and fall from a great height later!! Nothing stays the same and I have the endocrinal part of treatment to come).
What I have learned from reading posts on the forum is that people who have experienced breast cancer have a huge range of physical and emotional responses and all those feelings are entirely valid and should be respected - I do agree that the podcast should try to reflect that range of feelings and not just feature show people who are 'ok'. It's not going to be an easy task to do that.
I can't believe your breast care nurse was so obtuse!! As for your doctor... words fail me!
Snowwhite, you have put into words so much of how I feel, thankyou. Hubby and I had a heart to heart the other night and I actually said to him that I feel robbed. Of course, he assured me that it wasn't like that for him and he doesn't feel any differently...bless his heart, because we've had the discussion so many times and I still can't seem to put it into words the way that you did. We have suffered a loss, not just physically but in many ways, the loss of how I saw my future, the loss of how I was before, the loss of the sex life we had, the loss of the confidence that I had,the loss of love that I felt for myself...(that's not to say that I hate myself now, but I know that I don't love myself like I did) there are so many losses and the physical loss is in there with the rest of them. Some of us handle it one way and some of us another and I just hope that the broadcast isn't full of ultra positive people, who appear to have gotten over it all and feel normal and don't make me feel like I need help because I want it all how it was before and didn't need to 'grow'!!!
Sorry to rant, thanks again Snowwhite.
About time - am thrilled you're going to do this programme - so long as you say one thing straight: breasts ARE sexual. Loss of a breast affects sexual experience for both parties but for the person whose breast is lost primarily; women's breasts are not just enjoyed by men, it is not just about appearance, it is about sensation when touched, obviously, but also, less obviously, about one's inner body sensation/awareness: just think, please think, please please please think, about the way sex works, and the way mutual arousal works. We have lost part of the mechanism which starts with looking and showing but moves on from there, and there is what it is like to be in the body not just what the body looks like, and emphatically not about glossy mag prettiness. A precious part of the mechanism is lost - and they work as a pair, it should be said, one breast is not 'half the fun' - and I have yet to find out if one can be rehabilitated, sexually; I identify with people who have become disabled and have to rediscover their bodies and sexuality; and nobody wants to help me with that but god knows there has been enough history with this disease now that they should know more about it and I do not, do NOT, think it obvious that it is worth saving a person's life if it costs them their sexuality. Stay calm, and read the wording of that bit carefully. I believe effect on sexuality is not regarded as important because eunuchs don't die, but arguably they die inside. I believe we still have a puritanical attitude to sex - it is seen as optional and self-indulgent, like chocolate, but that is a huge insult to humanity and an ignorant mistake. And if you save a life, you save a life for a quality of life, otherwise you're just preserving tissue. That is contentious. Therefore it should be discussed. I would like to hear it discussed.
Any denial of these simple obvious facts will send me into the nth dimension with rage, I have been told sex is all in the mind (so, why do we need bodies at all; when did the space next to you last enjoy sex?), that you don't need breasts (by a breast care nurse - I am serious), to concentrate on other parts of my body to compensate, like I could suddenly discover I have erotic elbows, or, that I have, say, a third breast I'd never noticed before - I'm sorry but the neuropsychophysiology just isn't wired that way - nobody would tell a man loss of his penis doesn't matter.
By the way Bill - you didn't actually give anything on how your body image and sexuality have been affected; I have thought about this a lot and I have conjectured, and you will have to say if I am wrong, that it is rather similar for men to the extent that there is a loss of a precious erogenous area, and though a man's chest is different, sexually, from a woman's upper body, it is still a part of sex and loss of appearance, loss of inner sensation (I don't know how else to describe it) and the numbness, must be not totally different for men. Well, what would I know about it. I am sorry if I miss the point.
Please don't misunderstand me - I am not saying that we can't be glad that we are alive, glad that grass is green, that children sing, that lots of other good things are good things. But this is not a good thing and I do not want to hear another person tell me that a bad thing is a good thing. I am now disabled, which I was not before. I have been robbed. Facts. Just don't want to hear someone diverting attention from the rotten facts just because they are rotten facts. That's denial not therapy.
Okay, enough of my ranting. Apologies to anyone I have offended, some posts offend me. I am trying to stand up for truth or truthfulness, as far as humanly possible, and for the joy of life and the joy of sex, and I sincerely believe that what I have said needs saying - precisely what people mean by 'body image' needs exploring, because I don't think doctors - doctors - know, and I believe they are whistling in the dark about it (mine did that). Or maybe I've just had a most unusually and untypically bad experience, have I? So - glad you're doing the programme, and whatever other things get said, from the posts on this forum it seems to me that something along these lines must get heard too.
Thankyou, and sorry again if I seem to come on strong. I'm actually a pussycat.
Shannon, I am pretty much the same as you sex wise as I'm now post menopausal at 47. However, I was prescribed topical oestrogen by a Consultant Gynaecologist with the full approval of my oncologist and I can feel things starting to slowly reignite, also my mood has improved. I have had sex with my husband only once since Nov 2006 and 2 subsequent attempts were aborted as I was not physically capable. All in all very emotionally upsetting and this has caused me anxiety and now confidence problems which I have been referred to a psychologist for. I don't feel I am participating in life as well as I should be, but hope I will get things more focused in the coming months.
Body image wise, I guess I am lucky in that whilst I had a large fibroid and tumour taken out, the surgeon did a really good job. I have a scar that curves round the whole of the outside of my left breast, but I never worry about looking at it in the mirror every day and the scar on my underarm has faded and is not really visible. I now have very silver hair as well - I don't have a problem with this and I'm not planning to dye it as it looks great, especially if I wear bright acid colours. However, I do find others have a problem in particular my sister who will say things like "oh, are you leaving your hair that colour". Her problem not mines I'm afraid. Before I had BC I constantly worried about being a size 14-16 as I am 5ft 2in - now I'm just glad to be here and feeling physically well.
Just wanted to add my bit, as my sex life now is non-existant, but after chemo and a mastectomy with implant, I would say that is 99% down to physical reasons, not body image issues. I don't know if it is the effects of chemo or the onset of the menopause, but my body has gone into shut down. My emotional side craves the intimacy, but the body won't have any of it. Will the show be covering this aspect, or are you interested purely with body image?
I think that this is good idea as well. BUT, I do have some misgivings about the way that things are turning out here. I read, with interest, what the podcast is going to be about and then in the detail you announce that the only other member of the group would be "male". Does that mean that only women were expected to be there? Does that mean then that people really means women?
Why not ask a man to be part of the discussion, breast cancer is not just a women's issue? Having had a double mastetomy and all the other treatments - and the consequences of those treatments - I may have cause to claim some interest in the subject of your podcast. I'm sure also that I'm not the only man that might be interested in this.
So, if it's people you want then, it's not just women that could/should be involved yet the "male" involved in the facilitating infers at the very beginning of this thread that it is assumed that women are the only ones affected and interested - in this regard - by breast cancer.
There are, of course, many many more women than men affected by breast cancer and that fact does sadden me but I often despair that men are peripheralised - or forgotten altogether - when it comes to matters such as this.
This is not meant to cause upset or annoyance, it's just a wee reminder that there are "people" like me here that need some consideration.
Best wishes to you all
Just wanted to say that from personal experience I found coping with the body-image issues triggered by lymphoedema much harder than those arising from the mastectomy or chemotherapy. I think that, for me at least, I felt I looked normal when dressed after the mastectomy (I had a recon 3 years later) and before I developed lymphoedema and that made me feel confident and the chemotherapy was a transient affair - I knew my hair would regrow eventually.
Lymphoedema sleeves are ugly, often more obvious than the swelling itself and drastically and permanently affect the clothing you can wear for the rest of your life (unless you welcome impertinent questions from total strangers), devastating even if, like me, you're a woman with just a passing interest in clothes. My search for lightweight, opaque, long-sleeved, non figure-hugging (shows the outline of the sleeve) not-too-frumpy summer clothing goes on. And on. It all sounds so trivial, doesn't it? And yet sometimes it cuts to the quick - must be a girl thing.
Like a lot of people who post here, I've got other ongoing health issues, but I have to say that on a day-to-day basis it's the lymphoedema that is the dreary,tedious reminder of all that's been lost. But I refuse to let it depress me, because I know that I do have a lot to be thankful for.
Sorry to rant on. Thanks for listening! What I meant to say was 'Will lymphoedema get a mention?'
I've had implants after bilateral mastectomies, but they're slightly wonky through an infection unfortunately. Otherwise they initially looked great, however, obviously no feeling in nipples at all, as they were reconstructed as well. It wasn't until I had a hysterectomy last summer that my body image really hits the pits though. I was quite slim, so the implants although a bit lopsided, were neat enough, a bit of a blow after 34DDs, but it wasn't until the hysterectomy and the muffin top belly I've been left with, and the weight gain, of about 10 lbs that I really hit the skids. I feel as if my body has changed massively over the last two to three years, and really knocks your confidence sexually. Other people always say oh, you look great, blah, blah, blah, but if you're not comfortable with yourself, then you are stuffed unfortunately.
hello can i say that i agree with all that has been said regarding the podcast,its a vry imotive issue body image after surgery,my self as an older woman i thought that it wouldnt affect me so badly ,but now ive only got one breast,and have lymphodemia and wear a compression sleeve and glove (not easy in this heat) i find myself wondering about how people see me now ,im a lot heavier that i was ,my once long hair is now short , but hey im still here and everyday i thank god that i am .body image is pantermount to how well you feel if you look good you feel good . i think if i was younger and in a relationship when i had my opperation i dont know how i would have coped but now ive just accepted that this is how im to be and IF i ever met anyone else and started a relationship they would have to accept me as i am after all underneath im still the same mad woman i always was !!! lynn xhope all goes well with this project.
I think that it is great thing to hear how different people have coped with their self image. I must admit that I am one of the less confident ones...I didn't realise how much my body image was underlying to my self confidence until I ended up with no hair and one boob. I still struggle two years on, I have good days, more good days than not, but it's still there...everyday, when I get up and get dressed and when it's time for bed and I get undressed. I have been fortunate in that I have an amazingly understanding and loving hubby, so I know that it's me who has the problem. I put on a great act 90% of the time and try not to bore every one with my pity party...sorry I didn't mean that in a bad way...I just get cross with myself!!! I think that what JaneRA said was so very nice about the beauty of the scar and something really made sense to me when I read that. I hope that I can eventually look at my scar and feel that it is indeed beautiful, a sign or symbol perhaps of something that I got through. At the moment I tend to see it as a reminder that I used to have a good body for my age, even after three children and now I feel imcomplete and that I have been robbed, that hubby and I have been robbed, but I tell myself every day that all is good because I am still here and he still loves me, and I can still laugh and we can still laugh. So I guess that in between all of this rambling I am trying to say that maybe as time goes by 'it' gets better. 'IT' being, the wound, the scar, the inside and the outside and my ability to feel nice again.
As I said at the start, it's good to hear different takes on this subject and not that I want to be depressing or anything, I do think that it is important to hear that some of the time, some of us actually are feeling crap and unsexy and incomplete as that can give a feeling of not being alone. The feeling of not coping when everyone else is so positive can be very bad for someone who is already feeling low and knowing that you are not alone can give comfort.
love to all Scarlet.
Dear forum members,
Thank you so much for your posts; it's great so many of you are interested in this show. I just wanted to add a few words.
So far, we've had quite a few applications. Thank you so much for your interest, we just wish we could include everyone. Those of you that have applied will be contacted in the next few days to discuss the show in more detail.
Just quickly, I would like to address the comments of myself being male and being present at the recording. Perhaps I should explain more clearly.
We want everyone to be comfortable; that's why we chose to mention it in our initial pitch - so people are aware before applying. This is also why we suggested people use an alias, in case they wish to hide their identity.
I will be present at the recording as I'm the member of the team who has trained and has experience in audio recording and editing. I have produced most of the audio you can hear on the site, including our interviews and of course, our monthly podcasts - which have included some very emotional topics and subjects. Before working here, I was a journalist and I've been in some very sensitive positions in the past and treated them with the maturity and dignity they deserve. I will do my upmost to treat this recording in the same way.
At Breast Cancer Care, recruitment is based on appointing people on their skills and qualities, not their sex. As a poster suggested, we could find a woman to facilitate the recording but to recruit specifically for this recording would cost us extra money (in training or wages) and is simply an unnecessary use of our funds when we have the experience in-house.
Finally, on a personal level, I've now been working for this fantastic organisation for over two years - I've learnt a lot and have experienced some very emotional moments. All I wish to do is to help; to use my skills to help people. I'm really pleased we are able to make a difference to people's lives and I hope that our show will be another great resource for patients. I do not feel my gender should be a disadvantage, and I hope you can understand our reasons why I will be involved on the day.
And to the last poster, Jennifer - we most certainly will not be asking that of our guests!
If you have any further questions or would like to speak to me privately, you can email me via .
Enjoy the sunshine everyone. My very best wishes,
James Grainger (Web Editor).
I have found the above comments really interesting to read. I hope BCC would want to include the whole range of views/experiences, so people who hate how they feel/look/don't feel the same should have a voice too - to reflect how it is in real
I am one of the ones who hasn't found it that hard to adjust to having a single breast - def Amazonian... if only I had done archery before?
I'm a primary bc person, halfway thru chemo, no hair, weight gain but I am still me - I don't think how I looked before was better - I’ve been fatter than I am now but cd still 'pull'...
Hmm admittedly having a partner whom I adore means I haven't actually gone out looking! I am not ugly but neither am I extraordinary in looks - I’d always thought that if people liked me it was because of how I am not what I look like. I've never worn low tops and so on but a lot of my friends same age do...so when I go out I feel no more different than before. Hmm - I think I am trying to say that my sexuality was never rooted in how I looked?
Now that it's warmer.... hmmm, wig is too hot, I need a scarf/hat for the sun (but I always burned easily anyway so hats were de rigeur), I hate the prosthesis for being hot with me - I now wish I had looked more at recon at time of mastectomy but I opted not to for rad reasons.
I am now walking around as much as I can with no head covering - sometimes children ask me or old people do...different reasons - children because they wonder why...so I just say my medicine made my hair fall out but I am getting better... older folk.... because they are either nosy or they want to help. I don't wear the prosthesis at home but I haven't done the not wearing it when it's 'others' around. I think more for fear of causing them distress than me.
Having a chap on set is not an issue for me - umm... it's not like volunteers would be stripping off for podcast.
I have NO alarm bells ringing at a male member of staff facilitating.
Do you object to a male doctor being a BC specialist? Or a male GP?
Men should be more aware of breast cancer and womens issues.
It would be good to have a lady and her partner on and him to speak too, to say how it has affected him.
Well done on the podcasts, although it bores me silly hearing about fund raising. However i do understand its vital to BCC and its continuance. I did email and make my views known and got a reply.
I absolutely HATE my body since BC, my nipples were such an erogenous zone and as i have no breast left side and no feeling on the right since having ducts taken out its horrible. The weight gain is awful too as are hot flushes. I would not even consider going on a podcast as i do feel it has to be ladies who are positive and have accepted their bodies who will benefit others and who will be listened too.
I was quite relieved to see what JaneRA has written. I thought perhaps I was a bit odd when I 'heard' alarm bells ring at the fact there was to be a male member of staff present to facilitate and produce the recording. I then went on to think about the fact that this forum is for men with breast cancer as well as women and wonder ed if they too were being invited to participate in this podcast. Then I thought ' oh well this is not for me '. Perhaps bcc could clarify on this issue. The fact that they have felt it necessary to say there will be a male member present acknowledges that some will not be comfortable with this. I hope the finished podcast will be helpful and informative - there is a need for these issues to be acknowledged and discussed more openly.
The thing thats hurting more than anything,is knowing that shes allowed 2go on holiday on june8th if everything goes 2plan+depending on how mums feeling. every holiday usually twice year the photos are usually mum on beach in marmaris-turkey, topless+laughing in the warmest climates,how will this feel?? she doesnt want 2av reconstruction 4 the time being+i feel so sorry 4 her+so helpless....GOOD LUCK 2 U ALL+TAKE CARE! xxx
GOOD LUCK 2 EVERYONE THAT POSTS ON HERE,U GUYS DESERVE MORE THAN ANY MEDAL....hope ur recording later in july goes out across 2every1,my mums 2b injected wiv the dye thing on wednesday 14th May-her operation takes place Thursday 15th May,yep she avin a mastectomy. As u can imagine this was frm a routine mammogram,that came bak 4her 2 av 2nd mammogram,after finding lots ov white cells that was thought 2av been calcium,came the bad news ov BC.
I hope this podcast goes well...I think its a pity you can't find a woman to facilitate and produce the recording.
I can imagine the areas the podcast will cover..but just wanted t say that my own expereince of breast cancer has never been particularly focused on body image. When diagnosed aged 54 I had hoped pre surgery chemo would mean I could have WLE rather than mastectomy but this was not to be. I felt sad at the thought of losing my breast, but was surprisingly untraumatised afterwards. Immediate recon wasn't an option and I never wanted one anyway. I have found wearing a lightwieght prosthesis perfectly acceptable. I don't feel 'less of a woman' with one breast. Naked I
actually think there is something very beautiful about my scar and my flat chest...guess its that Amazon thing,
In the 5 years nearly since my diagnosis it has been the fact of having serious CANCER which affects me, not the fact that it is BREAST cancer. Its hot and summer and I am currently wearing lymophoedema sleeve, a prosthesis and a wig...a bit depressing at times, but its being alive to enjoy the sunshine which matters, cause this could be my last summer.
I think we are all different in the degree to which breast cancer impacts on body image and intimacy.
Good luck to those participating.
Only now 5 years later i think I would be brave enough to do this to help others. Ruthine58 I will forward e- mail x
I think this is a fabulous idea if you find you are short on volunteers you can count me in. I also think maybe involve a partner if any are brave enough. I am still the same person on the inside but with a bald head and a few scars not so visually I am sorry to say.
Re body image I had WLE on 15th April, and a large amount of tissue was taken,which amounted to a quarter of my breast.Now that the swelling is going and Seroma is settling I can see the effect.I am quite large 38dd so my breasts now look out of proportion.How do others cope with this,it is upsetting to see initially,what about bra's and sizing etc.My sex life has been affected by chemo etc and this now has lowered my self esteem even more.
Hello forum users,
Many of you may be aware of our monthly podcast www.breastcancercare.org.uk/podcast, presented by our Clinical Nurse Specialist, Tara Beaumont. Each month's show usually centres on one or two themes -this month (May) we will focus on our community fundraising event, Strawberry Tea, and the launch of our EMPLOY campaign, which highlights the issues faced by people diagnosed with breast cancer in the work place.
For July's show, we will be devoting an entire show to breast cancer and body image and intimacy.
We understand that this is a highly emotional subject; we are aiming to treat the topic with the sensitivity it deserves. Nonetheless, we feel this is a worthwhile move and we recognise it is something both important and personal to people affected by breast cancer.
We'd like to extend an invitation to our forum users to be a part of our show.
Firstly, we're looking for two or three people to come to our London office and be a part of our recording - to talk about your experiences and thoughts and especially, how you feel.
Secondly, we'd like to invite you to reply to this post and tell us what you'd like to hear about. If you feel you'd rather contact us anonymously, please email and we will put your questions to our panel with discretion.
Our podcast recording takes place in our central London offices in Southwark. We will be recording our podcast on Thursday, June 12 where Tara will be joined by another breast care nurse and ideally, two/three of our forum users to form a discussion panel. We will then record the following conversations and edit them down to an appropriate length to be shared with our community as a podcast.
Please note, this will be a 'closed set' - i.e. the only individuals present in the room whilst recording will be the panel, with the addition of a male member of staff who will be present to facilitate and produce the recording. Breast Cancer Care will provide travel expenses for those who travel to our London offices. Those involved in the podcast may use an alias whilst recording, at their behest, should they wish to remain anonymous.
If you'd like to be involved, please email us with your name, email and daytime telephone contact details at .
You will be called back by one of the programme makers, who will brief you about the day. Once we have spoken to you, we will then make a decision (based on our applicants) and contact you again.
You can find more information and listen to our previous shows by visiting www.breastcancercare.org.uk/podcast or by searching for 'Breast Cancer Care' on iTunes. Thanks for your interest and taking the time to read.
Tara Beaumont (Clinical Nurse Specialist) & James Grainger (Web Editor).