This year, worldwide, it is estimated that 1.5 million people will hear the news “You have breast cancer”.
Breast cancer accounts for 22.9% of all cancer incidence globally and is the most common form of cancer in women under 50. About 5% of breast cancer diagnoses will be in women aged 30-40 years old.
When these women get through their diagnosis and treatment, a proportion of them will then have to make a decision about whether to have reconstruction after their mastectomy, and if so, the type of reconstruction to have.
Where do we go for information?
If I had relied on the information supplied by my consultant, I would be assuming that I’m a cartoon lady who doesn’t exist in 3 dimensions and has uniform size boobs. Not hugely visually enlightening when you need to understand what you will potentially have to live with.
When I was planning my op, Keeping Abreast, a breast cancer support charity was forming a new local group in my area. It has volunteers at various stages of reconstruction who make themselves available at bi-monthly support meetings to listen to people’s concerns and speak openly about their own experience. They offer a “flashing” service where they find a private room for a one-to-one discussion and to show the results of their own reconstruction operations. I appreciate that some people making their decisions may not want to see other people’s healed scars, but from my discussions with the folks at Keeping Abreast I know that there are people who find this kind of thing immensely helpful.
If you just do a “raw” google image search for mastectomy and reconstruction scars, you could be pretty freaked out by the end of it. (I don’t recommend it, to be honest, and I’ve already had mine done!) BUT – there are some responsible websites that are either dedicated to this kind of content but present it in a sensitive way, or else they allow you to log in to view photos that other ladies have uploaded showing before, during and after their operations. That does help because it gives you something to hope for, and something to discuss with your surgeon.
I must admit that when I was making my decision whether to have the reconstruction (I could have just had the mastectomy) I was mostly focused on convenience – I didn’t want to keep spare boobs in my bra, or have stick-on nipples and I wasn’t sure I wanted to spend the rest of my life with no padding out-front. It was only after making that decision, seeing a surgeon to discuss the options and then some considerable time spent in research that I discovered these reconstruction photo resources.
One such resource is the FORCE website (Facing Our Risk of Cancer, Empowered) which is a nonprofit organization in the USA supporting people with a hereditary risk of breast and ovarian cancer, with or without a BCRA positive test result. Specifically it has been useful for me, because it’s women in a similar position as me, who are sharing their stories and in some cases, photos as well.
Another is The SCAR Project. (Just to prepare you, there is a photo on their home page of a young woman with mastectomy scars).
The SCAR Project is dedicated to raising awareness about early onset breast cancer. It explores the impact and experiences faced by the women who have been diagnosed with breast cancer and carries a set of photographic portraits of young breast cancer survivors.
The photographs have been taken by David Jay, a fashion photographer in the United States. The project admits its images are “unflinching” but it wants to “raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens”.
I believe these are extremely valuable sources of information for people who are undergoing or considering undergoing mastectomy or mastectomy and reconstruction, because it shows the reality of the scarring (and healing) and gives people a chance to come to terms with the idea if they have a difficult decision still to make.
However…
Facebook, we have a problem.
The SCAR project has a page on Facebook that features men and women with mastectomy scars. Recently there seems to have been some difficulty with Facebook concerning mastectomy photographs. Apparently, the SCAR Project has had a number of their recent photos flagged for nudity or inappropriate content, resulting in the photos being removed and the page being banned by Facebook for 30 days.
Whilst I can totally appreciate these images won’t be everyone’s cup of tea (even though it’s a good cause) as far as I am aware people will only see the images from the SCAR project if they actually go and Like or visit the page. So David Jay has good reason to feel aggrieved that this important project page’s content is being treated in the same way as something pornographic might be.
I have seen a number of articles about this over the last few days. As you might expect, the raggedy end of the newspaper columnists are positioning themselves as outraged and angry with Facebook, but The Scar Project has been pretty moderate in its own comments because in the main, Facebook seems to be trying to be supportive of such organisations.
To demonstrate this, on Tuesday Facebook spokeswoman Alison Schumer had discussions with David Jay and a supporter who started a change.org petition, to discuss their concerns. Facebook admitted on that conference call that mistakes had been made, possibly due to the volume of flagged photos that they process.
David Jay said, “I think it’s not lost on Facebook how important this issue is to so many people, and perhaps they’ll spend some time internally educating their staff about the types of images The SCAR Project has” and he says that the images “are what they are. I can’t imagine anyone finding anything pornographic or sexualized or even offensive in any way.”
I’d say it might be useful if Facebook were to allow some method of appeal or voting if a photo is flagged by someone rather than relying on one potentially inexperienced or unobservant person to arbitrate?!
Censoring mastectomy photos? I can’t go for that (No can do)
I don’t expect most people would necessarily want to look at these pictures, but I don’t think it’s right or necessary to censor mastectomy photos. Why prevent people seeing them, when they have chosen to visit a page and might be helped by sharing them?
If you agree, please sign the petition on change.org to ask Facebook to stop censoring pictures of men and women who have undergone mastectomies.
Easy, ready, willing, overtime.
Where does it stop, where do you dare me to draw the line?
You’ve got the body, now you want my soul
Don’t even think about it, say, no go.Yeah, I… I’ll do anything that you want me to,
Well I’ll… do almost anything that you want me to, yeah,
but I can’t go for that; No can do.
I can’t go for that.I can’t go for being twice as nice,
I can’t go for just repeating the same old lines.
Use the body, now you want my soul
Ooh, forget about it, now say, no goYeah, I… I’ll do anything that you want me to,
I’ll… do almost anything that you want me to, ooh, yeah…
but I can’t go for that; No can do.
I can’t go for that.
Lyrics by Daryl Hall, John Oates, Sara Allen
Key Sources:
worldwidebreastcancer.com
www.cancerresearchuk.org
cancerscreening.NHS.uk
Today.com article about the issue
