Body image, intimacy and sexuality - be a part of July's podcast

Public Archive
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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 <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%70%6f%64%63%61%73%74%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%70%6f%64%63%61%73%74%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> and we will put your questions to our panel with discretion.

DETAILS

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.

TO APPLY

If you’d like to be involved, please email us with your name, email and daytime telephone contact details at <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%70%6f%64%63%61%73%74%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%70%6f%64%63%61%73%74%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>.

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.

Best wishes,

Tara Beaumont (Clinical Nurse Specialist) & James Grainger (Web Editor).

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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.

Thanks
Mary
x

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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.

Debsxxx

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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

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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.

Jane

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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.

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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

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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.

dawnhc

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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.

Rx

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Hi Guys…

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.

Jennifer

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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 <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%70%6f%64%63%61%73%74%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%70%6f%64%63%61%73%74%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>.

Enjoy the sunshine everyone. My very best wishes,

James Grainger (Web Editor).

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Hi all,
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.

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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.

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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.

Julie

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Hi

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?’

S

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Hi there

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

Bill

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Hi,

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?

Shannon

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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.

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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.

snowwhite

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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.
Scarlet.xx