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:
Reclaim Your Curves

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, I found it to be 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:

Breast reconstruction images

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:

Psychological effects of mastectomy with or without breast reconstruction

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.

Perhaps most dangerously there’s the claim that reconstruction won’t make detecting cancer recurrence any more difficult. This claim is true if you’re talking about detection using MRI or mammogram but it’s clearly not true if you’re talking about self examination. I’m a triple negative breast cancer survivor and risk of recurrence is high. I have already had the experience of finding a lump (thankfully benign) under my skin. It’s just common sense that a lump occurring under an implant or transplanted tissue is going to be harder to detect with your fingers. I think it’s dangerous and irresponsible to tell women otherwise.

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. The Breast Cancer Network (Australia) site has this:

BCNA Breast Reconstruction Advice

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:

UK Cancer Research Breast Reconstruction Advice

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.

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Why I’m Not Having Breast Reconstruction

TRIGGER WARNING: If you’ve had reconstruction you might not like this one. Please know that this is a post about my personal decision regarding my own body and it is not intended to cause offence or distress to anyone that has decided to go ahead with reconstructive surgery. I love lobster. My daughter can’t stand it. If you ask her she’ll describe it as revolting. That’s her experience and a legitimate expression of her opinion. I don’t take it personally or as an attack on my lobster eating. So it is with my views on reconstruction and any conflict with those that have been very happy with the results.

 

It’s one week since I found out I need a mastectomy. It feels like a month!

Last Wednesday when my surgeon explained that the pathology on the surgery I’d had the week before revealed invasive cancer, she followed with:

YOU WILL NEED A MASTECTOMY

(What? Did she just say mastectomy? That wasn’t even an option last week. What happened to “I’m almost certain it’s fat necrosis” which is what she said just before they put me under. Mastectomy? What? How is this even happening?)

While my brain was doing that, my surgeon was explaining that the multidisciplinary team were all in complete agreement. She then started explaining reconstruction options. It turns out that radiation makes it unlikely that implants will be successful. Given that my radiation was not successful in mopping up my cancer and that having it has also put me at risk of all of the complications associated with radiation, I’m not happy. She also told me that radiation means the mastectomy will possibly have some complications, including seromas (fluid building up under the skin) and slow healing.

It’s official; I would have been better off having the entire breast removed after chemotherapy.

Of course, we only know that with hindsight. This is one of the most frustrating things about cancer treatment. Every stage of treatment carries risks and complications. This particular course of treatment has been very successful for the majority of women that have had it. It was worth trying to save the breast. I’m not sorry to have tried.

My surgeon, Kylie, then went on to explain suitable reconstruction techniques. They involve taking skin and tissue from one part of my body and moving it to my chest. Kylie told me that she often works with a brilliant cosmetic surgeon that favours a DIEP flap method. Tissue is taken from my tummy and moved up to make two mounds on my chest. She’s happy to call in a favour and get me in to see this surgeon.

I was still in shock. I wondered if reconstruction at the same time as the mastectomy would help me cope. Kylie told me that if I was to have reconstruction I would probably spend the first week thinking it was a mistake “because everyone does at first” and that it would involve ten or eleven hours in surgery. I wondered if this would help me overcome the body issues associated with mastectomy and she replied that even those with reconstruction continue to have body issues. At the time I said this: “I think having something there would help me to avoid that shock people will feel when they see me without breasts.”

It occurs to me know that my mind went straight to worrying about the reaction of other people. Hmm.

I left her office close to tears, with an appointment to see the cosmetic surgeon two days later. I had to use the receptionist’s phone to call my daughter with the bad news. The first of what would be a week of tears leaked out while I made that call. The serious crying was shared with my husband when we left the practice.

I spent the next couple of days researching and thinking about reconstruction, but mostly just grieving. News like this deserves a lot of tears. There’s also the distress of friends and family to deal with. How could this happen? I’ve been looking so well. Treatment seemed to have gone so well. What went wrong? For a brief time I felt I’d failed them. They had all loved me so much and wanted me well so badly and now I had let everyone down. I felt guilty about the sadness and distress my condition was inflicting on those around me. Poor Mum went through three months of ultimately terminal cancer with Dad. My daughter arrived from Sydney and sobbed while I held her. I had no comforting, motherly things to say. All I could do was to cry along with her.

Graham held me while I cried. He told me that I had his complete support, whatever I decided. He told me, over and over again, that he loved me and that he would always love me. “We will both be very sad. It will be hard for a while. Then it will get better and it will become our new normal.” He didn’t cry with me, preferring to be my rock, but sometimes he’d walk into the room with his eyes red and wet and I knew he’d been grieving in his own way.

I was fairly sure I didn’t want a reconstruction. When I told Graham he said, “I think there’s an argument for having the least possible surgery, but I still think it’s worth keeping the appointment with the cosmetic surgeon. You can’t have too much information in this sort of situation.” Wise.

So two days later we drove for an hour and a half to see the cosmetic surgeon. Kylie had warned me that some patients found her manner hard to take, but that she was one of the finest surgeons in the country. I was forewarned, so what happened next didn’t shock me nearly as much as it might have done.

The cosmetic surgeon was another brilliant, petite woman with tiny hands. She and Kylie could be sisters. I noticed her bird-like manner and her tiny breasts. She asked me about my medical history. Was pleased that I’d given up smoking eight years ago. Pleased that I had a good level of fitness and that I was not a heavy drinker. She asked to physically examine me.

With my top off, she pointed to my healthy right breast and said, “So, how do you feel about this one?” I told her I was fond of it. It’s my breast. It’s part of my body. (Truth be told, I’m fond of the other one too, but she didn’t ask about that). “Well,” she said, “It wouldn’t pass the pencil test but you couldn’t hold a pencil case under it.”

Kylie had told me that you get one shot at a reconstruction and for that reason many people opt to do both breasts. I told the surgeon that if I went ahead with reconstruction I’d be having both done. She then took a look at my tummy. She seemed delighted. “Almost no stretch marks. Your skin is in good condition. Yes. I we could do a lovely job with this.”

I felt a wave of nausea. She was talking about cutting off my tummy and moving it to my chest. “They’ll be soft. They’ll be warm. We reconnect the blood supply but we can’t reconnect the nerves so you don’t have the same sensation, but they’ll feel natural.” She looks across at my husband. The colour has drained from his face. Even so, I’m flattered that I’m such a ‘good’ candidate. I imagine myself being one of the finest examples of her work.

With my clothes back on, she shows me some photos of other patients. They are impressive, but this procedure comes with a lot of scars. I try to imagine myself looking like one of these women. Would I feel like a patchwork quilt? Would the additional risks and pain be worth it?

She starts talking about a date for surgery, possibly next week. I tell her that I’m still making up my mind about reconstruction and then we have this conversation:

Surgeon: “Well why WOULDN’T you want a reconstruction?”

(Wow. Did she just say that? As if reconstruction is my only reasonable option? Okay. Stay calm. Resist the temptation to tell her to mind her own business. From her perspective this is a reasonable question.)

Me: “Um. I only found out I need a mastectomy two days ago. I think I’m still dealing with a measure of shock. There’s a bit of an ick factor with reconstruction, moving tissue from my tummy to my chest. I’m not sure I wouldn’t rather just be flat chested.”

Surgeon: “So you’d rather be a martyr?”

(What the….did she just say martyr! Is she trying to bully me into surgery? Does she realise that a martyr DIES? Could there be a more inappropriate thing to say to someone facing mastectomy? Okay….settle down. You might still want this woman to cut into you so don’t go pissing her off.)

Me: “Err, no. I don’t want to be a martyr. If you mean do I want to make a point of the fact that I’ve had a mastectomy then, no. I’d dress appropriately. This is major surgery and I need to think about it. Kylie tells me it will be six months before I’m fully recovered.”

Surgeon: “Well that’s an overstatement. The alphas that have this are back abseiling and kayaking and rock climbing in about six weeks.”

Graham: “Is the abseiling compulsory?” (How I love him.)

She’s visibly annoyed. I expect her to say “Why have you been wasting my time?” but she holds back. She tells me that she’ll need to know by Monday morning because if I don’t want the spot on the list there are other people waiting for it. Pressure, pressure, pressure. Then she says “We like patients like you. You’re fit and you’re positive.”

As I leave the surgery, her receptionist restates the need for me to let them know as soon as possible, talking to me as if I’m a naughty girl who won’t eat her broccoli. It’s the same tone you’d use to say, “There are children in poor countries with nothing to eat.”

In spite of the surgeon’s manner I’m less averse to reconstruction that I was before I saw her. In the car home I put my hands on my breasts and think about the difference between having nothing and having something. Graham and I talk about it and I ask him if, sexually, having something there is likely to make a difference to him. I know this is my decision but this is our relationship and I’d really like to know what he thinks. He tells me again that he’ll love me whatever I decide. He also says that he doesn’t think the reconstruction will make a difference, particularly as I’ll have less sensation in the transplanted tissue. And if I want it I should have it.

By the time we’re halfway along the expressway I’ve recognised that my interest in reconstruction has more to do with wanting to be a star patient than with what I want to have happen to my body. This is the over-achiever in me. Given the opportunity to do something I will always try to do it well. I congratulate myself on recognising this propensity for what it is. I do not want to be part of this doctor’s photo album, even if I’m the best work she’s ever done.

As a final part of the process I read through the information she’s given me and ask to join the reconstruction group on the Breast Cancer Network Australia site. This group posts comments and photos. It’s probably one of the best places to research reconstruction. I am eternally grateful to the brave and amazing women that have shared their experiences. I cringe at the pain they’ve been through to rebuild their bodies and their lives. I respect, without reservation, the decisions they have made for themselves. It’s very clear that many of them have found reconstruction beneficial in helping them to deal with the trauma of mastectomy. The rest of this blog is about why I won’t be joining them. Please know that if you’ve decided on reconstruction, I mean no offence to you. As everyone says, this decision is extremely personal (could anything be more personal?) and we all walk our own path.

For those facing a similar decision to mine, here are the reasons I’m not having reconstruction:

1. The least possible surgery
Graham makes a good point. The best thing I can do for my health is to have the least possible surgery. Ten or eleven hours on an operating table along with the increased risk of infection, anaesthetic complication and death can be avoided. Cosmetic surgery is, by definition, not medically required.

For this reason I’m also opting to have a bilateral mastectomy (both breasts) which sounds like more surgery but actually avoids the need to have future surgery to remove the right breast. My surgeon tells me the risk of cancer in that breast is low. So was the risk of recurrence. Not chancing it. I’m also large breasted and having one large breast will be harder for me to cope with than having none at all.

It’s also clear from my research that reconstruction usually involves more than one operation. Some women have been back three, four or more times for revision. Each surgery carries risks and each needs more recovery time. In some cases, complications include tissue death and serious infection. There’s also a possibility (small) of the transplant not taking. All of these possibilities horrify me. I can’t think of any good reason to take these risks with my health.

2. The least possible recovery time
Kylie tells me I’ll be back doing modified yoga within three weeks of my mastectomy. Recovery from reconstruction takes much longer and she says (although the cosmetic surgeon disputes this) that I wouldn’t really achieve full recovery for six months. I want to be well as soon as possible. I want to get back to my life.

One in four people with triple negative breast cancer (and one in six for the other types) won’t be here in five years time. I’m doing everything I can not to be one of them but if it turns out I’m the one in four I don’t want to have spent a big chunk of that time having and recovering from surgery.

Radiation means I’m at higher risk of seromas, infection and poor healing no matter what I decide. Those risks are compounded if I have the more extensive surgical option. I don’t even want to think about golden staph!

Removing my tummy also means cutting into the area where I had my appendix out as a child. I’ve already got adhesions from that surgery and further surgery to that area is not desirable.

3. No more bras
Large-breasted women will get this. Also, no more neck pain, back pain or trying on beautiful dresses where the waistline is up under my breasts. It’s not all bad news.

Both a reconstruction and a single mastectomy would require me to wear a bra. I’ll probably follow the example of my good friend, Jo, who sometimes wears prosthetic breasts when she’s out (and sometimes not). It will be nice to take them off an put them in a drawer when I get home.

4. Much less pain
Pain following reconstruction is acute. People that come through it will tell you it’s the worst pain they have ever experienced. It’s the reason Kylie says that everyone spends the first week regretting reconstruction. Women experiencing bilateral mastectomy tell me that it was painful, but less than they were expecting.

5. Less scarring and I keep my tummy
Reconstruction would require a scar running across my tummy from one hip to the other. I’d also have a scar around my belly button and scars around each of the reconstructed breast mounds. Mastectomy will give me two scars, one on either side and will leave my tummy intact.

A few people have commented that I could score a free tummy tuck out of this (whoopee!) and it’s made me realise how much I love my tummy exactly as it is. Yes, it’s soft and a little rounded. That’s because I’m a 52 year old woman whose had a baby. When I think of my daughter my hand instinctively goes to my tummy. This is where she grew. I like being a little bit rounded. This is what most women my age look like. I had a flat tummy when it was age appropriate. I don’t want one now.

I’m also a bit prone to keloid scars, where the scar rises up in a ridge. This didn’t happen with my breast surgery (Kylie is brilliant) but every other incision has resulted in ugly scarring. Best to keep the cutting to a minimum.

Triple negative is also known to have a propensity to recur in scar tissue. I don’t know how thoroughly breast tissue can be removed and you only need one cell to germinate another cancer. Of course, I can’t avoid any scaring but having the least possible scarring seems to be my best choice.

6. Psychological benefits
For me, there are numerous psychological benefits in having a bilateral mastectomy. I will no longer have any breast tissue and this will significantly reduce my fears of recurrence. My smooth chest will more readily show symptoms of recurrence. I will avoid ongoing mammograms and the inevitable stress while I wait for results. I would still need to go through all of this with reconstructed breasts.

The symmetry will mean that, with clothes on, I will look just like all those women that are naturally small breasted. Nothing about my appearance will say ‘cancer survivor’.

My husbands hands will still be able to touch the skin on my chest and I will still be able to feel that touch. There is no compensating for the loss of my nipples and I will miss them more than my breasts. They’ve always been a favourite part of our intimacy and I am struggling to imagine how I will feel without them. Reconstruction would not alter this. Reconstructed nipples don’t have sensation.

When I try to imagine how I will feel standing naked in front of a mirror, the look of a bilateral mastectomy appeals to me more than the scars of reconstruction. Both come with ongoing body issues and for me, mastectomy will be much easier to deal with. I’ve looked at several photos of bilateral mastectomies and most of them look good. I can be okay with this.

Conversely my personal reaction to the results of reconstruction are not pleasant. So many scars. So much pain. I recoil from the idea that I would put my poor, long suffering body through that for cosmetic reasons. Something about reconstruction makes me nauseous. Me, who never suffered nausea through chemotherapy. It’s a visceral reaction and I can’t fully explain it, but I know it would be wise not to ignore it.

I know that the psychological benefits of reconstruction are possibly the single greatest reason that other women decide to have it, but it’s not for me.

When I spent time during treatment with a psychologist she helped me to identify what my values are. ‘Health’ came up number one. This is a decision consistent with my values. I have come to understand that nothing is more important to me than my health and that avoiding anything with the potential to undermine or compromise my health is very important to me. Reconstruction is unnecessary surgery. It’s about how I look rather than what’s best for my health.

I’m booked in for a bilateral mastectomy on the 8th of August. I’m thinking of it as my new dolphin chest. I’m considering that, at my age, my breasts were not going to get better looking with age.

But how I will miss them.