Before You Reclaim Your Curves

There's a new pink charity on the block. It's called 'Reclaim Your Curves' and it aims to provide support and information to women seeking breast reconstruction following mastectomy.

Here's their web site:
http://www.reclaimyourcurves.org.au

It's a worthy aim. The choices we make following mastectomy are intensely personal and the provision of more information to women can only be a good thing, right? Well......maybe.

Impartial information that allows women to make an informed decision is a wonderful thing. If only this charity was impartial. Instead, it seemed to be more of a promotional site for breast reconstruction.

For those of us that chose not to go down the reconstruction path, some of the language is disturbing (if not offensive). On the home page of their website there's a short slide show explaining statistics. It tells us that 17 Australian women will be told today that they need a mastectomy but that "only two of these women will restore their bodies".

Wait..... Restore?

Then there's a cute video of women that chose reconstruction talking about how happy and proud they are with their choices. There's nothing about the down side. No comment from women that chose not to have the surgery, or women that had it and regretted it. It's a very one sided presentation accompanied by cheery music. Breast reconstruction; what's not to love?

On the page 'Get started with breast reconstruction' there's this comment:

"Breast reconstruction offers you the opportunity to get back something that breast cancer has taken away."

Which would be true if reconstruction gave you back your breasts. But let's be honest. It doesn't. It gives you back a mound of fat and/or tissue transplanted from another part of your body that approximates a breast, or an implant that approximates a breast. But nothing can really give you back your breasts.

And then there's your nipples. When people ask me if I miss my breasts I can honestly say that I don't, but oh how I miss my nipples. Reconstruction can't give me back the sensation of my husband kissing them or touching them.

Reconstructed breasts can never have the same sensation as real breasts. It's interesting that in the section under 'Myths about breast reconstruction' myth number six reads:

"Reconstructed breasts have no feeling"

Which might lead you to believe that reconstructed breasts have normal sensation. But they don't. Read on and the comment below this 'myth' is ambiguous.

"Women who have natural tissue reconstruction tend to regain more sensation than women who have breast implants, because nerve endings in the chest (if they are not damaged during mastectomy) sometimes spontaneously connect with nerve endings in the flap."

Sometimes. So not always. Not even 'often'. And implants not at all. Once again the language seriously downplays one of the significant issues involved in reconstruction; it's extremely likely that you'll have reduced sensation in your chest area regardless of which procedure you choose.

Another of the listed 'myths' is this one:

"Reconstructed breasts don’t look natural"

which includes the comment:

"Many women have reconstructed breasts that cannot be distinguished from natural breasts."

I'm assuming this claim relates to the way reconstructed breast look in clothing. When I was researching breast construction I looked at all the photos I could find. The results varied from good to horrific but not once did I see a result that looked like natural breasts. I also saw plenty of reconstructions that would not have looked good under tight clothing. There are no guarantees.

Here's a link to a site that contains some photographs of reconstructions so you can draw your own conclusions:

http://canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/treatment/breast-reconstruction/images-breast-reconstruction

Keep in mind that these are considered to be good results.

The Reclaim Your Curves site is honest about the possibility of repeat surgery to achieve an acceptable result but once again, the risks are downplayed. Every single surgery carries risk and more surgery increases that risk. Women need to know that.

The site compares reconstruction rates in Australia with the UK and the USA and makes this comment:

"The Australian Society of Plastic Surgeons (ASPS) believes the comparatively low rate in Australia points to a lack of awareness of what is involved, and the procedure itself, as well as the lack of support services in regional, rural and remote populations."

How about the possibility that rates are low because many of us considered our choices and chose not to have reconstruction?

Then there's the very real concern about vested interests. The members of the Australian College of Plastic Surgeons have financial reasons for promoting breast reconstruction. And notice it's their 'belief'. It's not a conclusion based on research.

Here's some research:

http://www.ncbi.nlm.nih.gov/pubmed/12621175

What they found was this:

"The results indicate that breast reconstruction is not a universal panacea for the emotional and psychological consequences of mastectomy. Women still reported feeling conscious of altered body image 1 year postoperatively, regardless of whether or not they had elected breast reconstruction. Health professionals should be careful of assuming that breast reconstruction necessarily confers psychological benefits compared with mastectomy alone."

Then there's the added concern that some of the sponsors of this site also rely upon breast reconstruction as a revenue stream. One of their major sponsors is Airxpanders, a company that makes a product used in implant surgery. There's a clear conflict of interest.

 

My primary concern with this charity is that the tone and content seem to be strongly supportive of breast reconstruction. This is not a site that provides impartial information. The risks and complications associated with surgery are downplayed and there's no comparison between reconstruction vs no reconstruction. It's assumed that reconstruction is the way to go.

I suppose that Reclaim Your Curves could respond by saying that they assume any woman coming to their site has already decided she wants reconstruction, but I doubt that's the case. I'm sure that there are many uncertain visitors seeking information. They deserve to know all their options.

The site includes lots of quotes from women happy with their reconstruction, and none from those that aren't. Once again I feel this creates a false impression. Yes, reconstruction can be a wonderful choice for some people but it can also be a disastrous choice for others. An informed decision can only be made when women are given all of the information.

Then there's this:

"Most women who have undergone reconstructive procedures are happy with their results and glad they pursued it. Lots of women get through with no problems at all, while other ladies unfortunately have some hiccups along the way, so it is good to get a realistic idea of what can be achieved and also how the stages might play out before you embark on this part of the journey."

I think 'hiccups' seriously downplays the very real risks. This quote is from the section 'Working out what you want' which, once again, includes no information about why a woman might choose not to have reconstruction. Also, working out what you want apparently doesn't require you to have a full appreciation of the risks associated with each procedure.

The only reference I could find to the risks is in their 'myths' section. The myth in this case is 'Something always goes wrong' and the advice says this:

"Any surgery has a potential for complications, and breast reconstruction is no exception. Most women who have breast reconstruction, however, do not experience problems. Serious problems are uncommon, but the risk of infection, a negative reaction to anesthesia, delayed wound healing, excessive bleeding, hematoma, seroma and an unsatisfactory cosmetic result are possibilities. (Another good reason to find a skilled and experienced surgeon for your procedure.)"

Notice how the language states that serious problems are uncommon but gives no statistics. What's uncommon? One in one hundred? One in twenty? I'd like to know before I submitted to a medical procedure of any kind. I'm also concerned that the language implies that a skilled and experienced surgeon is the way to avoid any problems. Yes, it's ambiguous language and you could read it either way, but my concern is that even the most skilled of surgeons makes mistakes.

I'd like to make the case that providing women with support to make decisions about reconstruction should include sound advice based on facts and research. It should include all of the options available to women, including the option of not having reconstruction.

To their credit, a recent 'Reclaim Your Curves' event listed someone who was 'flat and fabulous' as one of the speakers, but she never appeared. The only explanation given was that she had been booked to speak but was unavailable.

The information evening has glowing reviews on their web site but to some of those attending it had disturbing shades of a sales promotion. An elderly woman was told that it was never too late to have reconstruction and there was a smattering of applause. No mention of the risks that this surgery would have for someone her age. A doctor reassured everyone that there was a "95% success rate" when it came to reconstruction.

But you see, a 95% success rate means that one in twenty women had a failed reconstruction. The presenter brushed away questions about failures with an acknowledgement that it wasn't pretty and the audience didn't want to know about it.

But the audience should know about the failures. They should understand what happens when the body rejects transplanted tissue or implants. They should know about the incidence of staph infections in hospitals and the risks associated with anaesthetic. To deny women this information is to deny them their right to a fully informed decision.

When I made the decision not to have reconstruction and wrote about it, I received lots of messages from people about that post. In the interest of balancing out the highly positive comments on the Reclaim Your Curves site, here's a selection of comments from another perspective:

"I don't think they should call it breast reconstruction. I didn't get breasts. I got numb mounds on the front of my body. They never felt like part of me."

"It makes me angry when I read comments about women reclaiming their femininity. I'm not less feminine without breasts."

"My reconstruction was a disaster. My body rejected the tissue and it became stinky and rotten. They had to cut more of my body away to get rid of the infection. The pain and the scarring were terrible. I wish I'd just had a mastectomy and left it at that."

"Nobody told me how painful it would be. I had a morphine pump after the surgery and even though I used it I was still in the most terrible pain. The nurses told me it was normal. I still have nightmares."

"It was just assumed I'd want a reconstruction. It wasn't discussed with me. I didn't get a choice. When I healed from my mastectomy I had these flaps of skin that the surgeon said would make reconstruction easier. But I didn't want reconstruction. Now I'm trying to decide if I should risk more surgery or just live with the results."

"The healthiest choice for me was to just have the mastectomy. I wanted to get my life back to normal as soon as possible."

"After reconstruction I couldn't exercise for months. I gained a lot of weight and that's had a serious impact on my health. I get anxious about how my weight affects my cancer risk."

"I decided to have the mastectomy and just wear foobs. After a couple of months of messing about with bras and padding and prosthetics I just stopped worrying about it."

"If you look at me you wouldn't know if I'd had a mastectomy or if I'm just naturally flat chested. I've done weights to build up my chest muscles and I think I have a nice athletic shape now. I don't miss having breasts at all."

and finally, the saddest message I received, from the husband of a woman that underwent breast reconstruction:

"Katie wasn't sure about reconstruction and even though I had my doubts I encouraged her to do what ever she wanted. There were complications and she lost a lot of blood. Then she got infected and became very ill. I was beside her in the hospital when she died and all I could think was that if I'd told her not to have it, or that I didn't want her to have it, she'd still be with me."

This brave man now spends some of his time telling his story and encouraging people to consider the small but very real risk of death that comes with reconstruction surgery. He tells me he's particularly concerned about any message that implies that men will have a preference for reconstruction;

"It wouldn't have made any difference to me. To be honest, I found the idea of moving part of her body up to her chest a bit freaky, but I wanted to support her so I never said anything. I wouldn't have loved her less without breasts."

It is possible to provide clear and unbiased advice about breast reconstruction and a number of sites already do this. This site (BCNA) has great reconstruction advice here:

https://www.bcna.org.au/understanding-breast-cancer/treatment/breast-reconstruction

It's clear and impartial advice that supports the right of all women to make whatever choice best serves them, including the decision to not have reconstruction (although there is a link to the Reclaim Your Curves site).

And the UK cancer research site has this:

http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/treatment/surgery/reconstruction/possible-problems-with-breast-reconstruction

Both sites are, in my opinion, much better sources of advice on breast reconstruction. The BCNA site openly considers the possibility that a woman may not want reconstruction and the UK site is very clear about the possible complications associated with any kind of reconstruction procedure.

It will be interesting to monitor the progress of this charity. In particular, it will be interesting to see where their funding comes from and how it's spent. There's a case to be made for diverting the funding that this charity attracts to other more needy causes, particularly given the clear vested interests of some of the supporters and participants.

Ultimately my issue is with providing all women with freedom of choice. I fully support any woman's decision to have reconstruction if it helps her to recover from the physical and psychological impact of breast cancer, but anyone making this decision should have a full appreciation of the risks, the facts and the potential for things to go horribly wrong.

Reclaim Your Curves does not, in my opinion, provide unbiased information. In fact it's a very much a case of 'me think thou dost protest too much'. To put it another way, there's an awful lot of justification for having reconstruction and not a lot of information on the risks or potential complications.

If you're faced with the inevitability of a mastectomy then reconstruction should certainly be one of the options you consider, but you should have balanced and unbiased information that supports what ever decision you ultimately make.

You shouldn't feel ashamed of your choice to have reconstruction, or your choice to NOT have reconstruction. There are pros and cons for both. Interestingly, the most recent piece of research I've seen reported that women choosing reconstruction did so for aesthetic reasons, and women choosing not to have reconstruction did so for health reasons.

This is entirely consistent with my own experience. Having researched breast reconstruction I ultimately decided that I wouldn't have it. I don't deny that it's been wonderful for many women but it wasn't for me.

The case in favour of having the least amount of surgery with the shortest possible recovery time is worth considering. And that's how my husband summed it up. He was incredibly supportive and determined to let me make up my own mind, but when I ultimately decided on a mastectomy without reconstruction he admitted his relief.

"I know I would have dealt with it, but the idea of moving your tummy to your chest was freaking me out. There's just something not right about it. You are not your breasts. I love you. I want you well. I want you well as soon as possible, without more surgery and more surgery after that. I won't love you less without breasts and I'm proud of you for making a decision that gave you the least possible surgery and the shortest possible recovery time. Your health is my top priority. Not your appearance."

Yes. That's what it comes down to. My core values are about my health. Not my appearance. Breast reconstruction would have meant longer surgery, greater risk, longer recovery and the possibility of additional surgeries and all of those associated risks. And for what? Something approximating breasts but not really breasts.

I know there are women that think of their reconstructed breasts as real breasts. I also know that I wouldn't feel this way about them. My friend Leonie summed it up this way:

"For me, breast reconstruction was the equivalent of giving me a stuffed toy to replace my pet dog after it had died. My breasts are gone and I would rather deal honestly with the reality of that than pretend that any kind of surgery can replace them. It can't."

I know that not everyone feels this way, but Leonie, me, and plenty of other women do. Our experience is no less valid or relevant than the experience of those women happy with reconstruction. It is certainly validated by the many women that have subjected their bodies to reconstruction only to regret it.

If you're considering reconstruction then please know this; Not having it is a legitimate choice. If you're feeling like that option isn't on the table then speak up. Ask questions. Ask doctors to give you information about the difference it makes to your recovery time, your pain, your risks, your potential complication and your long term health. Make the decision that best helps you to recover but know that there are many of us out here that chose not to have reconstruction because we didn't think the risks were worth it or we didn't think the results justified the cost to our health.

I don't need to reclaim my curves. I still have curves. I just don't have breasts. And I'm very happy about that.

Reposted from my blog at https://positive3neg.wordpress.com
a continuing story of my recovery from triple negative breast cancer