The one-boobed bra buyer. And related issues.

There has been a lot of talk recently about prophylactic mastectomies because of Angelina Jolie’s decision to have that operation and breast reconstruction. For those completely out of touch with the mainstream media, Jolie discovered that she carried the BRCA-1 gene mutation which significantly increases a person’s chance of getting breast and ovarian cancer. Jolie’s mother died of ovarian cancer, and it has just been reported that her aunt is currently undergoing treatment for breast cancer.

Aside from the fact that no one is asking whether she’s having her ovaries removed for preventative measures, my thoughts turn the perceived inevitability of breast reconstruction.

This is not a blog saying that Jolie should take one for the pink sisterhood and wear her mastectomy scars with pride. Of course Angelina Jolie is going to have a reconstruction, just as Christina Applegate did when she had a double mastectomy after discovering she too carried the BRCA-1 mutation, as well as showing early signs of cancer development.

But most women - over 80% apparently - do not have reconstruction after their mastectomies, and the implication from the media and fundraising bodies is that this is about misinformation and lack of funding, rather than the salient of point of whether or not they need to.

Here’s a quote from an article from an obviously biased plastic surgery source about Applegate’s reconstruction:

"Despite improved surgical techniques and increased insurance coverage (a right protected by The Federal Women's Health and Cancer Rights Act of 1998), a recently published study revealed that fewer than 20% of mastectomy patients choose immediate reconstruction. 'The take-home message is that we're not doing a great job of informing women about all their options,' said the study's lead author, plastic surgeon Amy Alderman, MD of the University of Michigan Medical Center in Ann Arbor. 'Women and referring physicians need to know that federal law requires insurance companies to cover breast reconstruction surgery in women who have undergone a mastectomy.'

Ideally, Dr. Alderman continued, cancer doctors would refer all women considering mastectomies or lumpectomies (the removal of just the tumor and nearby tissue) to plastic surgeons to discuss the benefits and risks of reconstruction and the options available to them. As with all plastic surgery procedures, a well-informed patient is key to a successful outcome."

Christina Applegate Discusses Her Breast Reconstruction and Double Mastectomy 

Beth Longware Duff, Medical Editor (November 21, 2008)

Yes, cancer patients need to be informed about the benefits, but they, and the media who herald the Jolies and Applegates of this world, need to be aware of the risks, before they rush to the aid of women lacking a “perky set of implants.”

Because, from my utterly unqualified perspective, that perkiness seems to be the main concern. We must give women back their femininity, cries the great nameless crowd!

Really? I didn’t realise they ever lost their femininity. My mum never had reconstruction, so she’s only got one boob and wears a prosthetic. Why? Because having both breasts removed was medically unnecessary, and reconstruction wasn’t an option. It involved too many risks. She had node positive, invasive cancer, which has a high chance of coming back. Surgeons recommend against immediate reconstruction because even if there’s not a boob to multiple in, by golly, the cancer will just have a go at the chest wall. Yes, that’s right, women can get secondary breast cancer in their chest wall behind their reconstruction implant. Women can get breast cancer in their chest wall after preventative mastectomies. 

Media didn’t tell you that, did they. But cancer growth in the chest wall and muscle tissue is why men can get breast cancer too.

Here's an accessible Health article on the same subject of Christina Applegate, quoting the very same surgeon: "Some women aren't good candidates because they're going to undergo radiation first, says Amy Alderman, MD, assistant professor of surgery at the University of Michigan Medical Center in Ann Arbor."

And here's a far more inaccessible, but arguably more interesting Finnish study. It's still in its initial research stage, but findings at the Kuopio University Hosptial suggest that “Young age of the patient and advanced disease stage carry a higher risk to locoregional and diffuse metastases after IBR.” Translated, that means that younger women seem more likely to have the cancer return after an immediate breast reconstruction. 

Younger women - the very patients who are encouraged to have breast reconstructions for their psychological and social recovery post-mastectomy.

Maybe we should reconsider our methods for that psychological recovery?

You know what else? Without publicly naming names, I shall resort to hearsay and anecdote by relating how my mother’s surgeon told her that male breast surgeons are far more pro-breast reconstruction than female surgeons. Interesting...

If you need that spelled out for you: some men are more concerned with women maintaining their femininity than most women.

Anyway, I don’t think of Mum as any less feminine. Just as I wouldn’t think a woman who had lost a limb any less feminine than her four-limbed sisters. Even though limb amputation is far more noticeable than a single mastectomy.

I applaud what women like Angelina Jolie are doing, but how about some, “hey they’re just tits” from the media? In my case, my breasts are great, but they have fed two children and done their job. This will hopefully be my attitude should I ever have to cross that particular cancer bridge.

By the way, if someone in your family has had post-menopausal breast cancer, it is very unlikely that you carry the BRCA-1 gene mutation. They probably got cancer, like most people who get cancer, because cancer sucks and picks out its victims at random and/or based on a complex set of variables.    

So, most women do not have reconstruction, and most women only have single mastectomies, which means that a lot of women who have had mastectomies are lopsided, so want prosthetic breasts and special bras. Consequently, the real post-breast cancer problem that gets overlooked is the dire lack of mastectomy bras on the market, and the expense here in New Zealand. Here’s an example.

Expensive, eh. Furthermore, there are only a handful of shops that stock them nationwide, and most of the bras are hidden away out the back so you have to specifically ask for them. To add insult to injury, you then get served in the hushed tones of someone trying to be sympathetic. It’s enough to make a chemo-worn and radiation-scarred woman want to smack a shop assistant around the head and tell her to sharpen up. You want some patronising “battler” rhetoric, honey? I’ll give you battler!    

Did I mention the prostheses cost between $400 and $600 each?

They do. For a boob.

Oh, and that link is for a shop in Christchurch. Well done The Fitting Room for having an informative website, because they’re the only NZ website I can find that actually shows you the bras. Natural Wear in Auckland is a fantastic shop, but it’s still very hard for someone to browse the merchandise. Another thing that singles out cancer patients as others needing to be handled with kid gloves. That, and the nauseating pink marketing that follows them everywhere.

You can also go to a wonderful shop on the Gold Coast. Because all women who have just had breast cancer have the means to co-ordinate their international holidays around bra shopping.

But aren’t there subsidies, you say? Well, the Ministry of Health gives women $613.33 every four years towards the purchase of prostheses and bras. Gosh, every four years. That’s great. You only need, um, one bra to last you four years. Totally.

So, let’s stop talking about breast reconstruction as a given or a necessity. If we really want to help women coping with the effects of mastectomies, let’s start removing some of the social pressure to have a perky set of titties. Let’s make no breasts or one breast just one of those things. Let’s make buying a bra that’s comfortable relatively straightforward.

P.S. There was recently a campaign on change.org to get Victoria’s Secret to make mastectomy bras. It was something of a fool’s errand, as Victoria’s Secret refuses to make bras for anyone over a D cup, so it’s unlikely they want to corner the mainly middle-aged women mastectomy market. But their response highlights the difficulty for many women - it’s all too complicated to even try.