We’re helping a researcher from the University of Southampton with some research. She’s looking for women who are about to have surgery to take part in some questionnaire-based research about body image.
If you are about to have a mastectomy or an immediate reconstruction and you would like to take part in the research, you will be asked to complete 4 questionnaires before your surgery and again 8 weeks afterwards.
PLEASE NOTE: This research study has been approved by Breast Cancer Care and we have agreed to assist the researchers with promoting their study. However, Breast Cancer Care takes no responsibility for the research and is therefore not liable for any claims concerning negligence, harm or oversight that might arise during the course of the research.
If you have any questions about the research, please look at the website bodyimageresearch.org.uk or contact the researcher, Helen Le Vesconte, on 07521 862 502 (or 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%68%65%6c%65%6e%40%62%6f%64%79%69%6d%61%67%65%72%65%73%65%61%72%63%68%2e%6f%72%67%2e%75%6b%22%3e%68%65%6c%65%6e%40%62%6f%64%79%69%6d%61%67%65%72%65%73%65%61%72%63%68%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>)
I wish someone would undertake some research about body image not limited to exclusively after Mx. There must be many of us who have problems adjusting to our new body shape after breast surgery, not just those who have had a Mx.
Sarah x
I agree with you, I’ve participated, and Helen who’s doing the research is absolutely lovely. I’m sure she’d be interested if you emailed her and explained how you feel x
Cheshirecheese - very valid point. I had an mx, but one of the reasons was I knew I’d cope better with no boob than ‘mutilated’ boob (my feelings/my words, not insinuating your boob is horrid!) - so I totally get where you’re coming from. To me, it must be harder to deal with a mishapen breast than a flat scar. xxxx
I definitely agree with you Cheshirecheese, there’s so much more research to do! I had lots of women contact me about body image changes following lumpectomies, WLEs, chemo and Tamoxifen. Mx, hair loss, weight gain, scarring, … I could go on. I’ve also had lots of people comment on how they feel unable to share their feelings with their surgeons or breast care team, and feel as if having appearance concerns after cancer is somehow wrong. This is why I feel so strongly that this type of research needs to be done. Any and all suggestions are extremely welcome, so please do get in touch.
Hi I am new to posting messages. I read a lot of posts following a DCIS diagnosis and I learned as much from postings as I did from the literature given to me.Thanks to you all.
I have had 2 WLEs. The first was 3cm, the 2nd 4cm. I was offered MX instead of the 2nd and advised that I would lose tissue but I was still shocked at how much. I believed that having some breast would be better than losing it all but now I am not so sure. I am waiting to start Radiotherapy next week.
The area of breast that I had removed was from the top in the cleavage so I am left with a scar and huge dent/fold. I spend most mornings trying on clothes to wear to work only to find that the surgery area is on view.I didn’t have huge breasts ( 36C).
I have been told that it is possible to have partial reconstruction in about 12 months which seems an awful long time to wait.
Can anyone share their experience of a similar situation with me?
I feel so sad for you and it must be a really distressing experience to have such a visible scar. I too had WLE before MX and it is horrid to have a mis-shapen lump when a lot of tissue is removed. I remember being shocked at the dents etc. I accepted mx because I was offered immediate recon and told it woud give a better cosmetic result, however in my case the recon is still a mis-shapen lump of silicone and muscle and not very breast like. However, many people say they get good cosmetic results, especially where there is original skin and hopefully you will retain some feeling too. It does feel a long time time to wait and recon is a slow process for many of us - I am still not finished almost 3 yrs post diagnosis. It helps some people to think that in a certain period of time it will all beover and for others it helps not to look too far ahea.
Hi Marmitelover
It might be worth you doing some enquiring on whether you could have lipofill to fill in the dents in your breast. I only read about it on here, but then did further investigation and it seems it may be a possibility for me later on. I had a WLE combined with mastopexy (a boob lift) but have been left with a bit of a dent on that side. Like you I was shocked at how much tissue they had to take to get clear margins.
The the type of lipofill seems to be important - the “conventional” sort, i.e. take fat cells from your tummy or thighs, then inject them into the breast, has the drawback that the fat is absorbed back into your tissues over time so has to be re-done. There is new approach called CERS (cell enriched something or other, can’t remember) which extracts the stem cells from the fat and only injects those, and they don’t disappear. Only available at a few hospitals in the UK. Try googling it.
Sarah x
Thanks so much for your replies. I will do some of my own research. I have been told that any reconstruction cannot take place until 12 months after Radiotherapy and that starts next week. One of my problems is no patience and the waiting is so frustrating.
Best wishes XX
Hi, just looking through forums as can’t sleep and came across this thread.
I too have struggled to come to terms with “look” my bc breast, lost about 20% of the breast tissue following 2 lumpectomies a year ago, no clear margins so 15 rads too and have been left with a sizeable dimple and “scoop” and a hard area which goes up under armpit. I am “lucky” (their words, not mine) as the 6mm DCIS was quite low and underneath nipple so it is not noticeable when i’m dressed but, as I have small boobs, it is very noticeable in the flesh and still haven’t let my OH see it. It is hard to come to terms with and I don’t like looking/touching it. I realise there are a lot of ladies far worse off than me and I didn’t need Chemo but I am fed up with being told how lucky I am to have been picked up early and where it is, but somehow I don’t feel lucky. Good to know i’m not the only one feeling like this xxx
Hi Curlylol I too had 2x WLE the first was May 2010 inc ANC, in the words of the surgeon a very generous WLE ( had 6 x chemo first to shrink tumour 4 cms not really successful )which did not get clear margins so had another WLE June 2010 which did. Looked like I had had a run in with a shark lol My BC spread across 2 quadrants so had what ONC and BCN said was a quadranectomy surgeon saw I was upset at this and called it a very generous WLE. But hey the scar has settled a lot, use aqueous cream and massage daily since rads as have very dry skin Even 1 yr on there is still a lot of ‘settling down’ occurring.Boob smaller than it’s mate.I had largish boobs despite being quite petite so still a prob to have a big chunk removed I too feel ‘lucky’ as still kept hair and boob but hey we had BC nevertheless so what is lucky about that? All this hits our body image there is no doubt about it Be kind to yourself , would you beat up a friend in similar circumstances? No prob not, so don’t do it to yourself sending you loads of hugs Jxx
Hi curlylol. There is a thread on here about fat transfer/lipofilling. Have you seen it? Not sure if this is something to be considered? Take care J
PS just seen I have hi-jacked a thread about research. Would a separate thread about body image help?
The research is only for folk who have had an MX but most of the replies have been about folk with problems following a WLE. Maybe a point for future research?
It’s 2 days post “all clear” and still don’t feel like celebrating, this is weird, like i’m in no-mans land, I thought I would feel great (isn’t there a thread on this)? Both my boobs are still painful from the 2 cyst aspirations and mammogram but, although they got the DCIS after 2 attempts, my boob still looks like it’s been shut in a car door (the DCIS was 6cm, not 6mm in my original post) and I was a 34D but lost a cup size to accommodate the smaller one.
I don’t like undressing in front of anyone and topless sunbathing days are definitely over.
I may feel better as the weeks go on, time will tell.
Sounds like so many of us have been going through similar experiences after lumpectomy - feeling that we ought to feel grateful since everyone tells us we’ve been “lucky”, but finding it hard to feel lucky when left with one mutilated boob and/or one boob much smaller than the other one. Why is so little attention being paid to this? Quite rightly there is a lot of help available for women who have a Mx, but what about us?
I had a lumpectomy but really it was more like a quandrantectomy, they just didn’t want to frighten me. But the lumpectomy was combined with a mastopexy (a “boob job”) so the result was a pert 38C boob. Sounds great doesn’t it? But next to a 51 year old soft and sagging 40DD the combination looked awful. As my GP very honestly said, either one on its own looked fine, but together NO! I wish the medical people would show more understanding of this. They almost take it as an insult to their work if we’re not delighted. I had a hell of a job persuading my surgeon to do the reduction on my healthy side ASAP, since I hated how it looked and couldn’t face going back to work like that. She wanted to leave it for months to see how much shrinkage the rads caused.
I had the 2nd side done after only 3 months and I’m delighted with the results - a matching pair! I’d far rather have kept my original soft, saggy pair, but at least now I’m symmetrical.
Sorry to ramble on so long, but it’s hit a nerve with me!
Hello everyone - many comments are about mis-shapen breast after WLE. I had my surgery in Nov 2010 followed by radio Feb 2011, no chemo thankfully. And yes I did have a big depression in my breast and a visible scar. The good news is that now I have a VERY neat rounded breast and the scar looks like a crease in my skin, barely visible. Just waiting for some evening up on the other side, so I can sunbathe topless again - not bad for 60+!!! My breast team are more than willing to do this and and assure me that they can get a good match. So try to be patient cos it seems that everything settles down in time.
mmmm. My WLE scar is not bad at all, the SMB scar is indented, the nipple on that side is higher than the other. But i am past the sunbathing topless stage. the only person to see me now is my husband and although we have a great time together I dont pose and dance around showing off my saggy bits anymore. And thankfully neither does he.
he once said that my beauty might be fading, but so were his eyes. Love him.
so at the moment I do not think i would go through more surgery to get a nice set of pert round breasts to sit above my saggy spare tyres.
This is such a lovely thread, thanks for all the comments and laughs.
It’s reassuring for me. I had a WLE a few months back, now in the middle of chemo, and I am due a MX after this - probably next March.
Initially I couldn’t bear the thought of losing a breast and asked for a tram flap recon - the free tummy tuck one. But it’s a huge operation and long recovery and I am just not sure I can cope with thinking about it. Why am I crying as I type?
Can’t stop thinking about the nurse telling me that the plastic surgeon ‘cuts your nipple off first and then sucks the rest out’ before transferring the tummy tissue in.
I think I’m going to have to change my mind and just have the mx and be lopsided. Or maybe they can just tidy up the WLE - but would they do that if there are still dead cancer cells inside?
But I’m 57 and past the stage where appearance matters that much. So it’s helpful to hear in the forums that some women are managing very well with prostheses or just being flat on one side.
Don’t really know what to do. And haven’t discussed with the OH yet.
Linstar - NEVER let yourself think that appearance doesn’t matter just because you’re 57 but that’s not to say you shouldn’t just use a prosthesis instead of having reconstruction, etc.
I was offered recon. but couldn’t face the thought of more surgery so refused. But then my body image issues are more with my greying hair, thinning eyebrows and ‘fat around the middle’