Improving breast reconstruction surgery with a web-based survey
magnusbaringer.com
magnusbaringer.com
Therefore I built a web based software, that is able to create relatively realistic models of various breast conditions - e.g. different breast sizes, asymmetries, scares and so on. I then built this software into a survey, that mixes different conditions in a pseudo-random way, that allows us to gather a vast amount of realiable data on a scale that has never been seen in this field of medicine before - which ultimately would significantly improve advice and also surgery for patients.
It would be awesome if you would sacrifice 5 minutes of your time to support this project.
I am looking forward to answering any questions. Thank you for your time and support.
The survey has 88 picture pairs that are mixed randomly. These 88 pairs are the absolute minimum to cover all relevant breast conditions in a way that allows us to get good statistical data. We calculated the average decision time per picture pair with 3 seconds - hence the 5 minutes. However the survey is structured in a way that if a participant only clicks 10 pictures, we can still use the data from those 10 clicks. So every click counts - and if someone is kind enough to click all 88 pictures, we get a full set of data.
Thank you very much for your interest and support!
Just a few additional information in general in response to some frequently asked questions.
The goal of this study is to get a more profound understanding of what aspects and factors of the female breast in connection with breast surgeries are being percieved as aesthetically pleasing.
Why is this so important? Of course we know that beauty is in the eye of the beholder - and surgery decisions are not based on aesthetics alone. But believe it or not - in the majority of cases patients are overwhelmed by taking decisions regarding the surgery of their own breast. Especially in case of breast cancer, the situation is so difficult and live changing for patients, that it's super difficult to take clear decisions or even just focus on own preferences. Other obvious factors like medical aspects or potential pain aside - for many patients it is extremely important to get profound pre-operative advice on what "generally" is seen as "aesthetically pleasing". E.g. do people like it more if there is a slight asymmetry after breast reconstruction - or is it better to do a correction but therefore have scars. There are many decisions that have to be taken - and for most patients it is very helpful to get good advice. Of course there are patients that know exactly what they want - and what their preferences are. However - as strange is this might sound - for the majority of patients that is not the case.
The goal of this study is to get a better understanding of what factors and aspects of the female breast and surgery conditions do have an influence of the aesthetic perception. The survey contains 88 picture pairs - no pair is equal (although some look quite similar). The order of the pictures is being randomized for every participant. The number of 88 pictures is the minimum number that we need to cover every possible "real-life" condition of a breast to get enable a profound statistical analysis. Some pictures might seem similar to you - but your decision allows us to gather a lot of data about why you took that decision and thereby better understand what factors really have an influence. In the end, we hope to find out what aspects do matter more than others - in order to then be able to give patients better advice (e.g. scars are percieved as more aesthetical than an asymmetry if the asymmetry is just one cup size).
We know that this study is not perfect - but as far is we know it is by far the most sophisticated study in this area so far. Therefore we hope that we can maybe gather new helpful data. And if only one surgery can be improved, we already helped one patient to get a better result than otherwise.
Therefore, thank you all very much for your support and time! I will do my best to reply to every comment and feedback! Thank you, Magnus
As with other surveys like this, and perhaps eye exams, I found myself several times thinking "these two look the same", or "I have no obvious preference", or "I like both". I'm bringing it up because I think that's valuable data that should be considered.
We know that some picture combinations look very similar - however there are no duplicates in the survey. However of course, sometimes it is quite difficult to make a decision. But we also measure the time of every decision - so in the end we will be able to tell which aspects are quite obvious and therefore quick and easy to decide - and which are not.
Thank you for your support!
It looks like you're trying to evaluate the importance of a lot more details than that, and I'd be shocked if you weren't already aware of that study, but there it is just in case.
We launched this study not even 1 week ago - with our 4 week goal being 100 participants and our half year goal being 1000 participants. After sharing the study to friends and family, we were already able to reach 1.300 participants within the first 4 days - which was already mindblowing for us and exceeded all our expectations. With 1000 paticipants the data would probably already have been better then most research that has ever been done in this field.
Thanks to the support of this unbelievably kind and helpful community we have now reached more than 6100 participants, collected more than 160.000 votes and nearly 800.000 datapoints in our database. The amount of extremely valuable and helpful data is just beyond believe for us - and I cannot thank you all enough for all your support, effort and positive feedback! We are now on the edge of creating one of the most if not the most profound studies in the field of breast surgery ever - and the amount of extremely helpful knowledge we can get from the data is just overwhelming.
Thank you HN for this wonderful opportunity, all your support and all your fantastic feedback and kind help!
I'm posting this because the two questions below about this issue didn't receive responses and the way the issue is addressed above seems to possibly trivialize the questions, but that could be unintended or a language issue. Sorry if I'm misunderstanding you.
I'm all for people consulting counselors and psychologists, but many people want to get back to normal, and part of that is to look the same as they did before, and avoid others asking them very personal questions or making hurtful comments. The doctors performing reconstructive surgeries are not taking advantage of vulnerable individuals, they are helping support people's recoveries.
I'm not sure I understand ... ?
First, I certainly didn't say that the doctors are taking advantage of anyone and certainly don't think so! I don't even know what ulterior motive the doctors would have. Please don't attribute things to me.
The job of mental health professionals is to help the patient achieve whatever their goal is, whether that's 'getting back to normal' or to help with a difficult decision or situation.
Who are you saying would be "asking very personal questions and making hurtful comments"? Mental health professionals? Mental health treatment is not an inquisition; there's no judgment made. Just like the surgeon, their job is to help the patient.
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The doctors have asked us to take a survey. It's reasonable to raise legitimate concerns about that survey; we're not and shouldn't be thoughtless and unskeptical.
The premise is that other people have power over you, that what they think about you matters (on a personal, emotional level). Therefore, what everyone else thinks about your appearance matters.
I'm saying that the mistake is in accepting that premise. It's false. What you think about yourself is all that matters (in the personal, emotional level we are talking about), and when you know and accept yourself, the strangers are powerless. Other people only have that power if you don't love yourself and then look to them to fill that void (speaking simplistically).
A mental health professional can help a cancer survivor face those emotions, and know and accept themselves. Then all that matters is what they think about their own body.
Are the position of the images randomized, or you show always the non-intervention version on the same side?
It's a little too long. I'll try to complete it later.
The images take too long to load, and you can see how they are constructed. It is slightly weird.
The order of the images is completely randomized - so the survey is never the same for two participants. The images however follow a complex algorithm - no image pair shows up twice. The number of images - although admittedly quite high - is the absolute minimum amount to simulate every important condition/decision-combination relevant for surgery. The load time was optimized - however depending on your location and server load it might of course be a little to long (I try to further improve that). Thank you very much for your support!
Perhaps you can download all the parts in hidden images and combine them on demand. Also, perhaps you can render the images in a hidden canvas while the user is selecting the previous pair of images, so when the user makes a click the change has no pause.
In my experience - not based on professional expertise - when people are very concerned about what others will think, in regard to any topic, it is due to a lack of self-worth or self-understanding. They want others to fill that hole, to provide the answer or esteem that they have trouble providing to themselves; they put enormous power in others' opinions. The solution is not to talk about what others think but to find help them find those things within themselves - how do they feel about their choice, their action, their physical being.
This study (which I understand might represent only one aspect of your strategy with patients) focuses only on what others think as an answer to the patients' uncertainty. It seems to assume that the worth of the patients' own bodies depends on pleasing others, that the value of this body part is as objects of pleasure for others. And of course we know well that our society sends that message to women, about this body party in particular, very often.
And to avoid any misunderstanding, I'm not setting up some argumentative binary concept that people don't care at all how they look. To varying degrees, everyone cares. But I worry far more about the self-esteem and emotional health of the patients than I do about how their breasts look (Edit: And I assume you do too and are acting in good faith). For their breasts, the only person to please is themselves.
https://news.ycombinator.com/item?id=25169521
What happened?
And like Someone else said, some people may feel good about themselves but feel a little insecure about these horrific scars. I don’t think it’s unreasonable to at least know what a consensus of other folks think, and then make your own decision
Breast cancer runs in my family. Two close relatives have had it more than once starting at early ages.
My impression is you are barking up the wrong tree. What is "aesthetically pleasing" to random strangers according to some survey is of little importance.
If she is in a serious committed relationship, her partner's opinions will be really important to her decision-making process.
If she is really young, this will tend to matter a lot more to her than if she is older.
Scarring is not just about aesthetics. It's about pain and swelling and limited movement and things like that. That tends to get short shrift by people in the business of selling you surgery for the purpose of improving your appearance.
I started the survey but didn't finish it. It's boring and repetitive and I thought images were weird, starting with the detail that there are no arms. Like I'm supposed to care about a woman's breasts and not be bothered by the fact that she has no arms?
As a woman who gets tired of some people acting like I am only a sex object and the only parts of me that matter are the parts covered by a bikini and as someone with a serious disability, I find details like that pretty insensitive and disturbing.
It's extremely important to most people. We go out of our way to look good. Just look at any shopping street. Clothes, makeup, gyms, etc.
It's definitely something that people say in situations like this but if you'd ask literally anybody who's had a mastectomy if they could keep their breasts looking exactly the same before surgery as they did before, I guarantee that nearly all of them would want that.
I think it's much more important to help people be confident in themselves with their new appearance than it is to tell them they are just the same as they were before. I think it's misguided to try and convince people that they didn't lose something.
It's important to be socially acceptable in public with how you look. But what your breasts look like when you are naked is really not important to your social life per se.
Someone I knew who chose to not have reconstructive surgery after a mastectomy once said about a mutual acquaintance who had a lot of cosmetic surgery for various reasons "She is covered in scars and only looks good in her clothes." The unstated subtext there being "I also look good in my clothes, even though I only have one breast."
If your life partner is okay with it and you are okay with it, the rest of the world can butt out. It's a more complicated question for a relatively young single woman who needs to wonder about future potential romantic partners.
I was quite plump at one time. There are men who like it like that and I have been fortunate to know such men.
At the time, I was getting a lot of ugly feedback from "random internet strangers" about how desperately important it is for a woman to be thin.
That experience informs my opinion that "What random internet strangers think about your naked body is of little consequence compared to actual intimate partners in your life."
FWIW and all that.
It's a continuum, and I don't think it's 'extremely important' to many people at all in my experience.
Far more people are not shopping and don't go to gyms, and shopping and gyms serve other purposes too. Also, when someone does those things to enhance appearance it doesn't mean it's 'extremely important' to them; I watched a sporting event over the weekend, went grocery shopping, and I post on HN, but none of those tings are extremely important or even important to me (beyond avoiding starvation).
It's not binary; humans cover a very wide range - much wider than you or I experience or imagine.
6 years since my wife's double mastectomy and honestly I'm only posting for potential benefit of anyone that reads this. Do/suggest/live-with/support what ever is least invasive for your wife/partner. I nearly steered my wife into a very invasive surgery due to it having more "real" outcome (she knew I wasn't really into implants in general and preferred natural). Honestly, I think she wanted that too - it's a hard time that leads you to this type of surgery and something that sounds "normal" is what you will gravitate towards. However, then I came to my senses/digested some research and realized how invasive the surgery was and how I didn't want her to have to go through it (+risks) and I had to kind of talk her out of it. It was the difference between, quickly adding some implants (couple hour surgery) and a procedure that required re-routing an artery, relocating some stomach muscles, and some other grueling things I don't recall (18 hour surgery).
After that ordeal, and a C section birth of my son, yah she has some scars. But they become invisible and life moves on and that's the best part.
In our case, we choose the opposite way to you, i.e to have the DIEP reconstruction. Yes it's a lot more invasive, but also:
A) the results are more natural (moving tissue from one part of the body to another) and theoretically good forever. No need to worry about the state of your implants a few decades down the track.
B) In our case at least, it's a form of reconstruction that is a little bit leading edge, and exciting to the surgeons. I feel that's a good thing as there was a lot of focus by a lot of people on the surgery going well.
Instead of just "least invasive" I would suggest considering the long term maintenance as well.
FWIW we are super happy with our choice, mainly because it puts everything in the rear view mirror forever, and as just a single breast involved, from memory the surgery was more like 9 or 10 hours, not the 18 you are quoting.
It’s all good points we did consider, that again I didn’t even recall at time of writing. She will have some maintenance operations like you said, we weighed that and felt ok with it (same maintenance that any person with implants will have, replacing every 10-20 years).
I agree with the leading edge and exciting part you mentioned. We had to find a surgeon that was young enough to know the procedure. It was our original plan, then when we told him we decided against it later you could see the excitement fade in his demeanor. (Cynically I say because he knew the pay day was smaller. But I work with a lot of doctors on the business end, and this is really how many of them think.) Also was a concern. I don’t remember the details, but what are long term implications of moving things around? This space is rife with examples of once cutting edge procedures that in hindsight are causing problems.
All that said, we had a thing happen to my wife where super routine procedure turned into her almost dying from loss of blood. She had to have transfusions and whatnot. It was horrible experience. So, we gained a strong aversion.
My main point is, whatever you chose, it’s really easy to get “used to” the scars and looks of it. Of course, some people don’t and it affects the sex life and all that. But I think using data about what MEN think on gut reaction can be harmful and misleading because it’s going to steer towards something that may not be the best decision for the patient. It’s difficult to design a survey that takes “getting used to it” time into account, but I feel like that would be more appropriate. I know my wife’s main concern was looking normal in clothes. But that was a proxy for symmetry and size and things she equates with “normal”.
About the arms, I guess the problem is that for internal use in a Medicine class it is usual to make the torso without arms. For example half of these images don't have arms https://www.google.com/search?q=torso+medicine&rlz=1C1CHBF_e...
If the survey was about hand reconstruction if a machine destroys your thumb, and they move a finger to the thumb position, I guess the image would have only the hand without the arm.
Perhaps this can be solved with a more smart cropping. (The images don't have legs, but that part is cropped so it is not weird.)
> Scarring is not just about aesthetics. It's about pain and swelling and limited movement and things like that.
In some images I notice the scar and though: "More symmetric is better, but that means an additional surgery. I don't like surgeries unless they are absolutely necessary." I don't remember what I selected, but it was a difficult choice because the question in the survey and my preferences have a different answers. I probably answer half following the instructions and half my opinion.
Some women experience a lot of swelling after a mastectomy and my general understanding is this can be impacted by how many lymph nodes get removed. This can make tight clothing a nightmare that causes bad swelling and a lot of pain.
This can be a really serious quality of life issue.
> It would be awesome if you would sacrifice
> 5 minutes of your time to support this project.
For one, my personal preference may not be the chest that is "more aesthetically pleasing" even though that is what the survey explicitly asks for. There are considerations other than aesthetics that should be considered. In my opinion, instead of the survey showing two cases (one perfect, one slightly afflicted), the survey should show just the afflicted chest and ask "is this aesthetically pleasing or not". Of course the perfect chest is more pleasing, but that does not mean that there was any problem requiring intervention on the other chest.
I've noticed that asymmetry with regards to breast size really are not a problem (for me), even in extreme cases. I've noticed this asymmetry in many women who have not had breast cancer or other afflictions. However, nipple asymmetry does stand out, especially vertical asymmetry. Two nipples at different heights does look terrible, and if aesthetics are an issue then I could understand performing surgery for those cases.
I do understand your concern - however the data collection works a little bit different "under the surface" as it seems. In the statistical analysis of the data we do not look at the "complete" breast images. The study is designed in a way, that the most important parameters around breast (reconstruction) surgery (e.g. breast size, breast shape, areola size, areola position, scars etc.) are being combined in 88 images in a way that in the end allows us to extract the data "broken down" to the different parameters. So the result of the study will not be "people like image X more than image Y". Instead we want to get a far more profound understanding of the influence the different parameters have on the perception of the breast. As we also measure the decision time, results of the study will be something like: "most people (or maybe just men - that's what we want to find out) tend to accept breast size asymmetry more then areola asymmetry. The decision happens much faster on areola asymmetries - so that seems to be more obvious and therefore has to be taken more care of during the surgery." Nobody has every done a profound analysis of these individual parameters alone - so that is where we see huge potential for a better understanding. I hope that explanation helps a little bit! Thank you very much again for your support!
> As we also measure the decision time,
Also, your data set is likely to be overwhelmed by foods and trolls.
Good luck.
What exactly do you mean with metadata and measurements? Do you mean the breast sizes? The breast conditions are rendered from 3D-measured breasts of real patients - so the displayed conditions and breast sizes are completely based on real measurements and the corresponding measures (e.g. cup-size).
Then there's the way light reflects off of it, some of it looking rough or dirty in a way skin usually doesn't, with some parts brightly lit as if by one very bright source. (I think glare explains some of it.) The breasts themselves often look brighter, and sometimes cleaner, than everything else; occasionally they do match the surrounding skin, which naively looks a lot better until I realize I have to abstract out the lighting.
Even if you can't vary the skin tones, I think that using more uniform lighting would help. And maybe something dumb like spraypainting the main body a mono-color would work, although that might make it more complex to show scars.