Your experiences of body image after breast cancer

Public Archive
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We’re planning some work around body image after breast cancer, including updating our booklet on sexuality and breast cancer and potentially doing some media work to raise awareness of the issues people face. We’re currently collecting stories and quotes to help us.

Breast prostheses, scars, a new body shape or different hair - these things can mean different things to different people. We know it can be a challenge to deal with body image issues, and we want to hear about the range of experiences. If your body (or body image) has changed following your diagnosis, please share your experience. Do you feel that you have arrived at a point of acceptance or confidence with the changes to your body? How did you come to this point – did anything particular help? Or are you currently experiencing issues with body image?

Please be as outspoken as you like. We don’t need to use anyone’s name with these quotes – they can be anonymous. They will help us shape our plans and the materials we use to raise awareness and provide support on this issue. Watch this space for details over the next few months, and you can also keep up to date with our work in this area by registering as a Breast Cancer Voice - find out more at Breast Cancer Voices | Breast Cancer Now

Later this year we’ll also be looking for people who are happy to talk to the media about their experiences. If you’d be interested in helping out in this way, please email me. But for now, it would be much appreciated if you could please share your comments and stories by posting here or by emailing me at clare.kemsley@breastcancercare.org.uk

Thank you very much for your help.

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Bump

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Hello
I had a left MX in September 2009, aged 38.
If i am honest with you, i have NEVER come to terms with the loss of my breast.
It is only now, three years later, following 2 different reconstructive procedures , that i am beginning to grieve for the loss of my body and deal emotionally with how that makes me feel right now.
I went into reconstruction thinking it was somehow going to ‘replace’ my lost breast, but it has not and never will.
For me personally, dealing with a whole new body image is HUGE. I look in the mirror and am constantly reminded of my fight with cancer and the whole recon process, which for me ,was a nightmare !

Sorry to be so pessimistic, as i am sure there are many ladies on here who deal with the massive changes just fine.
But this has not been my experience.

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Hi Naz, thanks very much for posting, and thanks to all who responded by email. It’s really useful to hear your experiences.
Please do continue to post here or email me with your experiences of body image after breast cancer. If anything particular helped you regain body confidence after treatment, what was it?
Your comments will help ensure our work around body image reflects the voice of people affected by breast cancer. To keep updated with our work in this area please sign up to Breast Cancer Voices at www.breastcancercare.org.uk/voices
Thanks for your help.
Clare

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I haven’t been too bad with body image, other than being overweight (but I was before BC anyhow). It’s just really hard being reminded of it all the time with every hot flush and achy joint.

My biggest problem is not to do with external body image - I was lucky the only surgery I had was lumpectomy - but internal body image. I have lost trust in my body, so any time I have a problem (bit of backache, a cough that hangs around after a cold, headaches, that kind of thing) I can’t help it, the cancer monster sneaks up on me and whispers in my ear, “I’m back.”

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Thank you ChoccieMuffin for your post and for the additional emails from others too.

It would be useful to hear more about people’s experiences around anything that has particularly helped you regain body confidence and ‘internal’ body image, as ChoccieMuffin mentions. Has there been anything particular (perhaps more ‘emotional/psychological’ than ‘physical’) that has especially helped you feel more confident?

And was there anything about the way you related to other people, or they related to you, and the way you felt about this?
If you feel that you have regained body confidence after treatment, was there a ‘moment’ when you realised this?

Thanks everyone - much appreciated.

Clare

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Hi I felt quite teary reading your request for comments. I have just 3 yrs on from Dx begun to feel a sense of ‘completeness’ I had neo-adjuvant chemo to try to shrink a large lump as otherwise told a quadranectomy would be needed( chemo shown on MRIs not to have worked) then 1st WLE and a 2nd for better margins.(2010)There was still the possibility for more chemo depending on histology. But the lumps had responded to chemo despite the MRIs showing no change. My lovely surgeon retired and he had been going to do a mammoplasty.
In Jan this yr I had a bil.reduction/uplift op to gain some symmetry. I had a lot of heart searching on this as I ‘only’ a WLE and some friends had a MX.
I had a brilliant PS and am so amazed at the brilliant result and am particularly amazed at the shape he achieved on my BC side, despite having some fat necrosis which we are dealing with.
In order to have this surgery I had to leave a job I loved as for the 2 yrs since I returned hardly a day went by when I wasn’t reminded that ‘you had 6 months off sick’ and the bullying, intimidation, threats and general lack of respect gradually wore me down more than I admitted to myself. I had worked full time through chemo and once back never had a day off sick.I worked in NHS. I know that my recovery from the surgery would have been seriously hampered by the worry of trying to get back to work asap.
As CM says there is that nagging little voice when even simple symptoms might take on a more sinister Dx. I still feel a little unsure about my breast awareness as I was Dx on a routine mammo and had a massive lump ( even though my Onc couldn’t feel it, I think my BS may have been able to feel it although he didn’t say so).And now of course both breasts are different so I am having to get used to how they feel now.
The sense of completeness , I’m not sure how else to describe it, is just fabulous.
Jacq xx

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I have struggled with body image. Although I only had a WLE so should see myself as lucky, I needed a re excision and ended up with a big chunk missing. One of the things that made it difficult was that it seemed so trivial and vain to complain but I liked my body before, and I liked my breasts. As unfortunate chance would have it, I was dx just as my divorce became final, so I had the double whammy of becoming single again in my 40s and then facing the thought of having to reveal my scars in a new relationship, if ever that happened. I remember being so scared and feeling quite sick at the thought.
I did eventually meet someone and I was so worried that he would go off me when he saw how ugly my scar is. In fact he wasn’t put off and that made me feel a bit better, but I have never accepted the “new” me.

i had counselling through occupationsl health at work and that helped a lot. i got angry and cried a whole lot. Then I decided to do what I could to improve the cosmetic look of my breasts. I stopped feeling that that was trivial or vain. After all, plenty of people have purely cosmetic procedures and all I am doing is being put as near as possible back to how I was before all of this happened.
I am doing this for me. it makes me feel happier inside snd more confident again. Two lipofills on, the dent is still there but improved on what it was. I have one more lipofill to go and eventually I hope that I will end up with a scar, but that the shape will be roughly right again. This is also part of a trial, and it has made me feel better to think that this will also help to perfect the technique so that more people can benefit in future xx

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I had tummy tuck reconstruction in 2011 with nipple reconstruction and tatoo…from a distance I feel I dont look too bad…up closer I feel like a patchwork quilt…I have very little feeling in the right side and I have developed lymphoedema so wear a compression sleeve and glove to manage this. I am not sure about my body image and I have also put on a lot of weight which makes me feel worse so need to do something about that !! It is difficult to say if I would have been happier with an alternative as I have not had that experience

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I am only part way through this process of getting better. But already I am tired of it all and feel like I am never going to reach the end. I am small busted and had neo-adjuvant chemo to shrink tumour first (August - December 2012). The lump halved on the chemo which was a good result. I had my first WLE on 1st February. We did not achieve clear margins, there was an area of DCIS and also another small tumour, all confined to the same area as the first tumour. So I have been back in for another WLE on Friday 8th March. I have returned home and I feel like Frankenstein. The surgery did not go as well as hoped and my surgeon had to take out a large amount of tissue in the hope we will get clear margins this time. My boob has an enormous dent in it and I have another drain in again! I am totally hacked off and wish I had gone straight down the mx route. Its not just the surgery. its the total loss of my identity. Its the loss of “me”. I look at pictures of myself from my holiday in July prior to starting treatment and I can’t recognise myself. I have lost my hair. I have lost bits of me. I have lost my job and my social network, I am in constant pain at the moment and it is hard to do simple stuff like cook the childrens’ tea. My life revolves around “CANCER” and I would echo what chocciemuffin has posted. How can I trust my body again? It has let me down once, big time. How can I know that I can ever be free of it? How can I trust it again? I don’t feel like me, I feel diseased and worth less, I know these feelings will eventually go but its very hard at the moment to stay positive. My surgeon and breast care team have been amazing and my husband and family have been really supportive and I should be thankful, but at the moment I am just too upset! I know I have to go through this process to get well again, but it is really tough at the moment.

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I had a mx in sept last year and have quite an ugly scar which due the the position of my tumour is quite high up on my chest. But strangely I don’t feel to bad about that- I see it as a necessary part of surviving the cancer. However, what I am struggling with at the moment is my hair. Before I lost it through chemo it was shoulder length, thick chestnut brown and I liked it and friends were envious of it. Now my new hair is currently still very short and curly and grey (Ive dyed it) initially I was just so happy to have hair come back I didn’t care what it was like but what I find really hard is the way other people react. I get a lot of ‘looks’ from people and although I have no idea what they are thinking I want to wear a sign saying ’ I didn’t choose this hairstyle, I had cancer!'. I too, like spookymoo, look at a holiday photo from pre cancer days and wonder where that carefree attractive, energetic person has gone. Now I feel old, achy, ugly and dried up. I’m also in bed with a cold today and feeling very sorry for myself!!

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Breast cancer diagnosis just knocks you completely off balance. I am now just over a year on from diagnosis and mx, physically I feel well but emotionally it is still very tough. Like the others I don’t trust my body anymore and every litttle ache or pain and your mind goes into overdrive, scared if IT has come back. I don’t really like looking at myself in the mirror because i’m reminded of all the emotional and physical trauma I went through. I can’t wear the clothes I used to in case the scar shows and yes at times I still feel angry and upset that this has happened to me. I am acutely aware that people sometimes don’t know what to say to me and sometimes I really want to talk about how I’m feeling but daren’t because I think it makes them feel uncomfortable.
However, what has helped me is humour. I have a very good friend who just makes me laugh and that has helped me more than anything. She is also very open with me and we can talk about anything. My husband and children also help my emotional state and when I think about that again it’s their humour that gets me through. I know my OH doesn’t mind that I only have one breast, he’s just glad that I’m here and that helps my body image a bit but not a lot I have to say because its me who has to see the scar every day and live with it. It doesn’t help that even 1 year on my scar line can be quite sensitive and after a day at work I can’t wait to get my bra off and pj’s on because it’s so uncomfortable.
I also sing in a community choir, it’s only a small group but we sing, we have a glass of wine, a natter and a laugh and I come home feeling rejuvenated.
I went to a support group recently, it was their first meeting and I was appalled when people started introducing themselves as ‘hello, I’m so and so and I’ve got breast/ovarian/ whatever cancer’. Why did they feel they had to justify themselves with their diagnosis? They then went on to discuss fund raising, no mention of emotional support so I never went again.
This website has also been invaluable to me and has really helped me with my emotions and knowing there are others in the same boat as you really helps; they understand where I am coming from and understand the ups and the downs of having this cancer.
I wish I could turn back time to when I was carefree but I can’t. This is my reality nd I have to live with me as I am today. What helps? Humour, honest discussions about feelings, singing, family and friends, and more humour!

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Hi Ladies I am to have an mx on 26 March, I as you can imagine am still in a state of shock…anyway I asked for an immediate re-con and the surgeon was very reluctant about this as it can be a five to six hour operation doina a back flap re-con. The option of an implant was never really discussed other than it wouldn’t be an option as over time my other breast would drop and this one with the implant would not. I think I would prefer the implant and if things get very out of sync down the line then get an implant in the other breast. Seems to make sense to me rather than having a 6 hour operation. Can anyone share their experiences on this.
Thanks Eileen

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I never really had a very good feeling about my body image. I have always been ‘overweight’ - (since birth; I was 10 1/2 Ib!) as have my mother and both sisters.

Reaching my fifities I realised that, despite being a size 20, I was finally beginning to accept that this is how I am
MEANT to be. One of my sisters had dieted constantly for the last 30+ years, the other ate anything and everything and I have tried to eat a sensible balanced diet, yet we are ALL about the same size. I realised that I had had 6 years at work without a single day off sick, whilst most of my ‘healthier weight’ colleagues had succumbed to all sorts of infections and illnesses. This made me ignore the constant barrage of media nonesense that being overweight is fatal. I have been the same dress size since my children (now 28 and 25) were born. I swim for an hour once a week and walk regularly.

Accepting myself was made easier by the fact that buying clothes has become less problematic, now that the population as a whole has got bigger. There are now more shops stocking my size, so I don’t feel like a freak, excluded from the High Street any more.

That’s the background - then WHAM! BC diagnosis February 2012. Remarks from various people (including OH - quoting form press!) about being overweight causing BC. Suddenly I no longer have faith in my body or, as it was a routine mammogram that picked up the cancer, my understanding of ‘well’. I feel as if it is somehow MY FAULT I got cancer.

Zoladex and Tamoxifen have caused my hair to thin dramatically (people say they can’t tell, as I was fortunate to have long VERY thick hair before, but I can feel it’s thinner and I see it in my hairbrush and all over my clothes and the floor :() My nails are flaking and crumbling and my skin is very dry. I also have to use lubricants if there’s any ‘bedroom activity’ due to vaginal dryness and atrophy. I am struggling to try to ensure I don’t put on any weight - I’ve only just accepted being THIS size after all!
My left boob is significantly smaller than my right and yet my bra feels tight on that side due to nerve damage. I often wonder whether people can tell I’m lopsided when I’m dressed and this affects my confidence. However, at this point I wouldn’t consider further surgery, even if it was offered, because I feel my body has been put through enough.

As others have said, the fact that I knew nothing about my BC until it was found by a mammogram has made me doubt my ability to know when something is seriously wrong, so every pain and niggle is a real worry.

I’m having regular check-ups with my oncologist due to being on the REACT trial. This is a mixed blessing: On the one hand it is reassuring because if anything does recur, it will be spotted quickly, but on the other it does bring BC back to the forefront of my mind at regular intervals, making it difficult to put it all behind me and move on.

Sorry to ramble on. I hope that has been of some use.

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Humour - definitely! I’ve laughed almost as much as I’ve cried through all of this, an believe me, I’ve cried A LOT. My family have kept me sane (well, as sane as I’ve ever been) and I’m beginning to think I’m heading out the other side, something that has snuck up on me without me noticing. I am determined to stand up to this &^£^&£ disease and NOT let it rule me. Yes, I have scars. Yes, I have worries. But I also have a life and a family and other things to do - I am NOT just cancer, I have a LIFE and I intend to live it!

Yesterday was two years to the day of my first chemo, and it really hit home just how far I’ve come since that horrid day. I cried my eyes out as that first chemo was administered. Not loud, sobbing crying, just silent, tears pouring down my face. But today I was a a BCC photoshoot and it was such a good experience.

I have also had a fair bit of counselling, which has helped me to start to accept myself as I am, something I think women aren’t very good at generally. I’ve also been very lucky that my other half has been a complete rock throughout diagnosis, treatment, and afterwards. He had major surgery just before I started chemo and he views his scars as his “badge of honour”, which has helped me take a healthy view of my own. They bother me a lot less than they used to, and while they are a constant reminder of cancer, they are also a reminder that the cancer has been removed.

Another thing that snuck up on me was the realisation that I now say I HAD cancer, rather than I HAVE cancer. Something else that has helped me put cancer in the past.

And as others have said, being able to share my worries with others who understand them helps to put them in perspective.

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Hi,

I had a Left breast MX and Strattice Mesh recon in January 2013, I’m struggling with my self image, clothed there is no difference in my breast size but I’m very concious of the fact they don’t sit at the same height, its noticable to me if I wear a horizontal striped top as the lines aren’t straight, I also worry about it being noticed I only have one nipple. I’m still wearing sports bra’s for comfort but they have no padding and do nothing to hide a cold nipple!

Naked I’ve lost any feelings of my breast being part of my sexualilty, my partner and I look at the scar and how it’s looking in a clinical sense but neither of is seems to be able to look at it in any intimate way. To me it feels like a loss in the mental and physical sense, I’m angry with Cancer for robbing me of part of what made me feel feminine.

I’ve spoken with my GP about these feelings and I’m due to start a course of counseling to help, maybe further down the line I will feel differently, I hope so.

Sharon
xx

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Hi
I had a bilateral mastectomy in 2008 along with six lots TAC chemo and rads. I am OK with my flat chest, falsies and the scars, what I can’t seem to accept is the continual pain in my side I don’t know whether from the op or rads. I am upset by the awful marks that have appeared as a result of the rads which spread from under my arm, where I had an axillary clearance, across into my chest area and are visible if I wear a scoop neck top. Due to Taxotere, which I am told saved my life, my hair has never grown back fully anywhere on my body. On my head it is very fine and thin with male pattern baldness at the back, this is the one thing I am very conscious of and hate. I disliked wearing a wig when I was bald and am certainly not going to wear one now. My oncologist was adamant that my hair would grow back, maybe I was one of the unlucky ones as there are a few others in the same boat, a warning probably would not have helped but I might have been a bit more prepared and able to deal with it a bit better.
When I spoke to my GP about my feelings he suggested counselling but there would be quite a wait, so I spoke to my local Macmllan outreach centre and I had counselling and support through them which was extremely helpful but my feelings about my hair I still find difficult to deal with.
Jennie

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Well ,here goes my third attemp at adding a comment, the previous two disappeared into the ether. it is almost a year since I was diagnosed with bilateral breast cancer. This was a total shock; I had gone in for breast reduction surgery the week before. I had back ache and I also knew i had slightly raised risk of breast cancer and thought that more normal sized breasts would be easier to scan- what an irony… Anyway, routine histology turned up breast cancer. I took losing my hair in my stride to an extent as I had been through that in my teens when I had two bouts of leukaemia. However, I’m not impressed with how grey it is coming back. It was losing my eyebrows and my eyelashes that was so hard. my eyes are my one good feature. I’m sure they are only about half the length now. I initially intended to have immediate reconstruction at the same time as mx. (once my initial surgery had healed a bit!). I had meant to have silicon implants and strattice. However it was felt in theatre that my skin was rather too fragile so I had tissue expanders instead. For many months the ports have been sore but then developed cellulitis on one side and had the tissue expander removed. This has left me with a very lumpy and ugly scar. I am getting very sick of taking my “breast” out of a box in the morning. I dont feel like a real woman, I dont feel that applies to me anymore. I was in a lingerie shop to get some prosthesis bras and say some really beautiful cream lacy underwear. I felt ashamed to be looking at it- how could someone like me have the nerve to do so? The leaukaemia treatment killed off my ovaries ( the “inside” woman bit) and now the outside bit has been messed up. I know the reconstruction is going to be difficult in terms of aesthetic finish as it will be the 3rd op for one breast and the 4th for the other. I still dont know what I can or should go for. I’m fairly slim now and probably dont have enough tummy for a diep but not sure. The one good thing out of all this is that I can now fit into a size 10 and at least dont feel ashamed going into clothes shops where nothing used to fit me.
My husband is amazing-so caring and supportive. I wouldnt be where I am without hime and my family. I am just currently tortured by the fear it will come back again like the leukaemis did.
The one thing I wont do is blame my poor body that has been through all this way with me when an alien invaded. I did that in the past and it just made things worse. I was able to move through that with the help of very sensitive psychotherapy.

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Thanks very much everyone, this is really helpful and I appreciate your input.

Please remember the Helpline is here as well, if you want to speak to someone or find out about more about the support we offer on the issues in this thread. Call 0808 800 6000 or find out out more at www.breastcancercare.org.uk/helpline

And please continue to post your experiences of body image after breast cancer here. If you feel that you have regained body confidence since treatment, was there a particular ‘moment’ or event when you felt this?

If anything particular helped you regain body confidence, what was it?

Do you have tips on what worked for you, that other women might find helpful in regaining body confidence?

Your comments will help us make sure our work around body image reflects the voice of people affected by breast cancer.

We’ll also be looking for people who are happy to talk to the media about their experiences, to help raise awareness of these issues. If you’d be interested in sharing your story in this way, please email me at clare.kemsley@breastcancercare.org.uk

Thank you again to everyone.

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Thank you drdspg for your comments on your prosthesis. If other people use (or have used) a prosthesis, or wig, it would also be good to hear more about you feel (or felt) about it. Has it helped with body confidence?