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.

 

 

Advertisements

16 thoughts on “Why I’m Not Having Breast Reconstruction

  1. Powerful stuff, as always. Your talent as a writer is exceptional. I can’t imagine what you are going through, but I can imagine how much you are helping others with the rawness of your honesty. You are amazing, Miss Meg, and I am so proud to call you my friend. Your generosity of spirit, even in such dark times, is incredible. Love to you and the Emperor, and of course, the princess of your heart. XXX

  2. Wow. You rock! You are on this incredibly scary and personal journey which I could never imagine. I can only guess at how it feels to be in your shoes. You are an amazing person and writer and I know how much your blog has helped others. It has certainly helped me understand some of the pain and decision making that you have had to face. You are one of the most beautiful people I have ever known and you always will be with or without your breasts. XX

  3. Hi Meg, I wrote to you last year and have been following you intermittently. So sorry for what you are going through. Just to say:

    I had a unilateral mastectomy (for a very different diagnosis) a year ago. It was not as bad physically as I feared, and I recovered well and fast. Not half as bad as your post of a few weeks ago suggests.

    I have not had a reconstruction, for exactly the same reasons as you. I don’t regret that, and though (in the UK) I have an option to ask for one at any time in the future, I don’t think I’ll ever do so. I have just been on holiday in France and bared my all (= my remaining breast) on the campsite, got over the self-consciousness pretty quickly, and only heard one child whispering to her mother (but, hey, she was about 6).

    So, whatever you decide, all power to you, but just thought I would share my experience. Interestingly, and as you probably know already, the acute physical bits of the cancer experience are not actually the worst parts – it’s the psychological fall out that is most challenging. So although the surgery will be difficult, you know – clearly – what you have to do. Look after yourself. And let everyone else look after you too.

    Love and best wishes. Rooting for you.

    • Thanks so much Elizabeth. Only five more days until surgery and I am constantly buoyed by the comments and advice from so many women that have been there before me. I often reblog to the Breast Cancer Network Australia site and so many women there have also related their experiences. It has helped me to feel more peaceful about all of it. I’m still anxious (I am human!) but far less so because people like you have taken the time to let me know there is life after mastectomy (and potentially much less life without it!). Your love and best wishes are a cherished gift. X

  4. Your writing is exceptional. The best post I’ve ever read on why I didn’t have breast reconstruction – either . #1 I couldn’t think of any good reason to take these risks with my health.

    I didn’t do it to make a point of the fact that I’ve had a bi-mastectomy and I rarely wear my foobs – they live in the box. I think for a DR to suggest that is insensitive.

    Just the same as a leg amputation – they don’t have to hide the fact and nor do we. Like you it was my personal decision regarding my own body and whether I wear prostheses is nobody’s business too.
    I am happy for those who chose reconstruction and I am in awe of them too. I just didn’t want that surgery (or complications).

    I’m 2 years on (and 3 months) since diagnosis /surgery (45 then) 48 now and no plans to go down the reconstruction path ever.
    I add that I love running with no boobs – no bounce , so chaffing !
    Good luck with your recovery.
    PS Graham is GOLD !

  5. I guess you have had your surgery now – I hope you are recovering well. I totally get how you feel about “failing” friends and family. That was the hardest part of my cancer journey for sure. I’m so pleased that you have made the decision that is right for you, and hope that you are seriously going to spoil yourself with the money you no longer have to spend on bras! You’re so right, she who has health has everything xx

    • Oh thanks for taking time to comment, Sammie. I hadn’t thought of that. I AM saving lots on bras, aren’t I. I might go and buy some new jeans. Giving up alcohol and eating well has meant I’ve dropped a size and the old ones are swimming on me!

  6. An interesting discussion is worth comment. I do think that you ought to write
    more about this issue, it may not be a taboo subject but generally folks don’t discuss such issues.
    To the next! Cheers!!

    • Thanks so much for taking the time to comment. I agree with you. It’s a subject that sets a lot of people off! I discovered this when I copied this post to the BCNA web site and an online fight ensued between the pro-reconstruction people and the anti-reconstruction people. I’m always sure to point out that this decision is very personal and many women are very happy with reconstruction but there need to be a lot more discussion about the many women that regret it. Tissue death, serious scarring, Mondor’s disease, loss of movement, wounds that fail to heal properly for months, revision followed by revision followed by revision, for many women reconstruction is a nightmare. Their stories are just as valid as those of the women that defend it.

  7. Thanks so much for your words. You have helped my decision for no reconstruction by highlighting all the reasons I had but didn’t put them all together.

  8. This is a very important post. From people I’ve talked to and things I’ve read when diagnosed with breast cancer in the U.S. most people are given many options for after the mastectomy or double mastectomy. Many have reported that the simple option of not having a reconstruction is never put on the table by their doctor. I find this absolutely appalling. How can a person make an informed decision when they are being pressured in this way? It’s very important that you are sharing your story because it creates a perspective that is getting overlooked.

    • Same in Australia. There’s now a group called ‘Reclaim Your Curves’ (I kid you not!) that do presentations to people. The presenters include cosmetic surgeons telling people about the benefits of reconstruction. I’m told they also include someone whose ‘flat and fabulous’ but my grave concern is that the risks associated with reconstruction are seriously underplayed. This is non-essential surgery that carries serious risks. Their claim of a 95% success rate means that 5% fail; that’s one woman in twenty dealing with tissue rejection, serious infection (including staph), wounds that don’t heal and, in some cases, permanent disability. Then there’s the risk associated with ANY surgery that requires anaesthetic. I think I need to write a blog post about this. Thanks for the inspiration.

  9. Thank you for sharing…funny I’m just reading this now. I was diagnosed 4/7/14. I had unilateral mastectomy in 2014, then the other removed in 2015. I too, chose not to have reconstruction. I struggle a bit with bathing suits and evening gowns (I’m 35 now), but for the most part it’s just easier . So lovely to hear of other women who made similar choices. Most people can’t believe I chose not to have reconstruction, and most medical people act like I must have been nuts:) God bless you!

    • Oh thanks for the comment, Sarah. I really appreciate it.

      I still have a pair of ‘foobs’ and one of those soft stretch bras to hold them in place and I have tried them on a couple of times. I usually decide that everyone is so used to me being flat chested that it would be ‘a thing’ if I wore them. Most people really don’t notice, even people that knew me when I had very large breasts. We ran into an old friend at the supermarket that I hadn’t seen since the mastectomy. I told him I’d had cancer since last we’d met. “What kind?” he asked!!! When I gestured at my obviously flat chest he did a shocked double take. It made me realise how seldom people actually look at my chest.

      Yoga has helped. I’ve now got decent pectoral muscles and I stand very straight (apparently we often develop a post-surgical slump) and both of these create the impression that I’m naturally flat and entirely comfortable with it. I do still occasionally try something on and remember that some styles just don’t look good on me any more; anything with that handkerchief/waterfall hemline, anything too close fitting around my middle. I’ve also built up a whole wardrobe of clothes that I love wearing, including a few things with tiny straps 😀

      My very best wishes for your continued good health.

      Meg
      X

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s