The N word

November 2011, me in Sefton Park. No nipple protrusion visible.

On the morning of 18 May 2009, a Monday, I am sitting on the edge of my hospital bed, wearing a surgical gown. Mr Koshy, one of the three surgeons who is going to operate on me today, is explaining the procedure before he asks me to sign the consent form. And as this is a DIEP breast reconstruction, the explanation is pretty lengthy. In short it’s the transfer of skin and fat from your abdomen to your chest to create a new breast mound. In reality this takes at least ten hours in theatre and involves complicated connecting of arteries and vessels to make sure the fat stays alive, but also skill in creating a breast mound that matches the other breast. And while he is talking to me Mr Koshy also says, ‘And in time we would like to make you a nipple as well.’

Ah. Yes. A nipple. How great would that be I thought at the time. But it also felt like such a long way off. I mean first I have to get through this surgery, for it to be a success – DIEP surgery can fail completely or partially, all graft surgery carries that risk – and then recover, then I’ll need more surgery on my other breast to match up once the DIEP has settled, and then we could think about a nipple. It all seemed so far away, so remote. And it reminded me of the day I found out I had breast cancer, back in February 2007, when I was told I needed to have a mastectomy, and I said, ‘Can I keep my nipple?’

So my DIEP surgery was a success, a few complications but nothing major. The next surgery six months later was also a success and I was, nearly three years after diagnosis, in possession of two breasts. At least they felt like my breasts to me. The decision to have breast reconstruction was not something I decided lightly by any means, and I was happy with the result and keen to ‘get my life back’, which is where I thought I was at that point. For my reconstructed breast I had a silicone nipple, cast from my other nipple and carefully and skilfully colour-matched by the prosthetics technician, Gina. OK, I hated glueing it on and cleaning it every week or so – the gobby lumps of glue are like very sticky snot. But, overall, I was delighted.

So I did return to my life, I trained for a 10K in 2010 and starting working again. I’d found a publisher and we were working on my book. Life didn’t ‘return to normal’ as I had expected due to depression and just a whole sort of non-triumphal feeling. I didn’t feel like I’d beaten cancer or that I was a survivor. I’d just spent three years of my life in hospital-land, and here I was nearly 47, so approaching 50 in fact, and I still thought of myself as 43, the age I was at diagnosis.

I’d told my surgeon I did want to have a surgical nipple done. Of course it was an option to stick with the silicone one. My prosthetics team told me that, in their experience, for women who’ve had breast reconstruction about a third of them opt for no nipple, a third have a silicone one – either a personalised cast like mine or an ‘off the shelf’ version, and a third have a surgical nipple. I wanted the permanent surgical version. So I was on the waiting list for a nipple, but I’d told my team that I wasn’t in any rush. During that summer, last year, I even went to see the prosthetics team who do the medical tattoos and they showed me photos of surgical nipples, and also did a patch test with the tattoo ink (behind my ear) in case I had a skin reaction to it. I’d gone on my own to this appointment, this felt like a minor detail. Ah but there is nothing minor in breast cancer land and so there I was afterwards sitting in the café sobbing into my hot chocolate wondering if I could even be bothered going through with ‘all this’.

So the whole of 2010 passed and I delighted in having fewer appointments, less check ups. I was starting to feel less like a patient. Then in March 2011 I received a letter which I recognised immediately as a hospital letter, there’s something about the brown envelopes that just tell me where they’re from. It’s from my plastics team with a date for the nipple surgery. Sheesh. I’d sort of forgotten about that! Just when I was getting into the swing of a life again…. here was more surgery. OK, it’s fairly minor surgery in the whole scheme of things, but it’s still surgery. And usually they perform nipple reconstruction with a local anaesthetic so it wasn’t like I was going to have a general anaesthetic either. And even though I’m fed up with being a patient, I wanted something, I wanted to feel finished. And most of all I never wanted to use that nipple glue ever again, and I wrote about this on No more nipple glue.

Well, this was April this year and it turns out I didn’t have the surgery. I was too distressed in theatre as I was conscious, I didn’t know I was going to react like this, but there it was –  The surgery that wasn’t. And having emotionally decided that it was the end of my silicone nipple, I then found I couldn’t wear it anymore, but found a great alternative of rub-on transfers from Rub-on Nipples.

Now, at this point I think it’s probably the right time to talk about how you actually create a surgical nipple. You can’t create a nipple that’s like a real nipple. It can’t respond to temperature and touch or change colour. Much like this DIEP, this ‘breast’, it’s not the old one replaced. It’s different. Extract from Being Sarah:

At this point I have done some research about breast reconstruction. I understand that it is a process. It’s not just one surgery, a single fix to put things back how they were. And I know too that it will not be a breast with sensation, at least the same sensation as a real breast. Or a nipple that is responsive and changes shape and colour. No. That is lost forever, cut off and taken to a lab. The reconstruction is only a sort of ‘version’ of a breast.

So, nipple reconstruction. Well, first you have to think about the nipple as two parts – the nipple bud, the bit that sticks out; and the colour around the nipple bud, the areola. To create a nipple bud a surgeon cuts the skin on the breast mound and lifts it to create a protrusion. There are a few different ways of doing this ‘flap’ version – and if you are interested there are six different types illustrated here – including the skate flap and the star flap which are the ones I am familiar with. (Warning, this page contains surgery photographs which you may find difficult to look at if you are squeamish, but if you like the details please have a look.) So the nipple bud is created, but there is no colour around it, no areola. Also, most nipple buds do flatten in time, so the nipple is initially created larger than required to achieve an acceptable end result.

My surgeon has always said that no one version of nipple reconstruction is perfect. So numerous techniques have been developed. Alternative ways of creating the nipple bud include using a piece of thick skin from elsewhere, to try and create protrusion that will last. Skin and cartilage can be taken from the edge of your ear or thick skin from the end of your second toe. In DIEP breast reconstruction they can also take a piece of cartilage from your rib when they are doing the blood supply, which is then stored inside the edge of your new breast, and then retrieved and used for nipple reconstruction at a later date. There is also the nipple sharing technique where in single breast reconstruction part of the nipple bud on the remaining breast is taken and used to create a nipple bud, although this can reduce sensitivity in the remaining nipple.

So, once you have a nipple bud and it has healed, a tattoo can be applied to both the nipple bud and also to create an areola around it. This is done by different people in different hospitals, in some places the surgeon does it, in others there are trained technicians who do it. If the nipples are bilateral then a shade can be selected, but if it’s a single nipple then obviously you are looking to ‘match’ the other nipple. Alternatively, an areola can be created using a skin graft from somewhere else on your body, and skin that is often used is the upper inner thigh as it has more pigment in it and can simulate areola colour. My friend said, ‘So did they go round your body with a colour swatch looking for the right coloured skin?’ We laughed at that. However, it is possible that when the skin is grafted from the upper thigh that hair follicles can remain, although they can be removed later with electrolysis. Pubes on your nipple? Well, there’s a thought. I’ve also recently heard from a friend that she is having a skin graft from her hip, as she describes herself as a brunette of Mediterranean heritage, implying that she is hairier than I am (I am very fair skinned and have little body hair, really the things breast cancer can make you disclose!).

So, the nipple, it’s a detail, but there’s quite a lot of decisions to be made. I was sure that I wanted a straightforward nipple bud with a tattoo for the colour and areola. I wanted the simplest most straightforward surgery. The graft sounded painful and would limit mobility afterwards, and as this is my seventh surgery, I just wanted to get it done and over with. But, after my failed surgical experience, I thought more about this and wondered whether in fact I did want to create an areola from my own skin, which might mean that a tattoo wasn’t necessary after all. I talked about this with my surgeon, the delightful Ken Graham, who explained that he is ‘of an age’ before medical tattoos were commonplace, so he does offer the surgery where he creates both the nipple bud and the areola using surgery, although he will do the nipple bud only if you wish. It’s your choice, he reminds me.

Oh so here we go. A choice. How do I decide? Well usually, in the breast cancer world, if you are unsure about something you can put a call out and you’ll get lots of feedback from other women who’ve been exactly where you are and made decisions. I posted on both breast cancer forums I’ve used here in the UK. Nothing. I searched the internet. But I couldn’t find any personal experiences of skin graft nipples.

So at the end of my blog piece about the surgery that didn’t happen that was my plea:

It would be great if you could tell me about your nipples…. sorry but that’s the only way to ask really.

And someone answered my plea. She offered to tell me about her nipple experience, heck she even offered to show me on Skype! We laughed and snorted out loud about that. Girl on girl live action on Skype! She showed me her nipples, hers were bilateral, and she even showed me the donor sites which was her groin – ouch, both sides, and yes she did have a rogue pubic hair transfer to the nipple but chemotherapy had got rid of that. Wow. My mind was made up. I’m extremely grateful to this woman for showing me, and we’ve since become firm friends. I then decided that I would have the skin graft option, and I’d already agreed with my surgeon that we’d do the next attempt at the nipple using a general anaesthetic – but later in the year so that I could enjoy being active during the summer, and also wouldn’t miss weeks of being active while the skin graft healed, preferring to do that healing in the darker days of the year.

But I was surprised that when I made that call I hardly got any response. Do women step out of the breast cancer community at this point? Do they feel ‘finished’? That they are not a breast cancer patient anymore? I don’t know, I just felt that this was an important step, a big part of the reconstruction process and yet women weren’t talking about it.

Since my non-surgery in April two of my fellow bloggers have had nipple reconstruction and tattoo-ing. Stacey on Bringing up Goliath describes her ‘trepidation’ at the tattoo process – and, as she herself points out later, actually manages to write the whole piece without mentioning the word nipple! Then Nancy, at Nancy’s Point, writes about her tattoo-ing experience as well, saying how she didn’t feel triumphant, even though this is the ‘end’. Or at least it’s the end for now, as far as we know, being breast cancer patients after all.

And I’m really surprised by how many comments Nancy’s piece attracts. Women are asking questions about the procedures, some are not clear what their options are. Much like me, they’ve not found anyone to ask questions about these extremely personal parts of our bodies. One of the commenters Elaine Finlay says she’s not had the tattoo-ing done – maybe it’s ‘patient fatigue’ she reflects – I totally understand how that feels, how fed up you are by this stage. Stacey says ‘I’m satisfied. I don’t want anymore nipple work.’ Again, I get that too. Even a medical tattoo-ist comments and says how much the tattoo can add to the reconstruction, how it can detract from the scars. That’s true, but as Nancy points out, a woman has sometimes reached her “procedure saturation point” and just doesn’t want any more. Yup. Know what that feels like too.

But it’s great to see such an open discussion and for women to have access to others to talk about nipples. So just for your information, I had my surgery just over five weeks ago, my new nipple was unveiled four weeks ago and I wasn’t initially impressed with it, too much like a fresh surgery site. It was scabby and needed to heal. But now, dear readers, I am delighted to tell you that it’s a success. But unlike my other reconstuction surgeries I’m not going to show you a photograph of this. It’s strangely personal. Of course my Skype friend has had the favour returned, and a couple of other friends have been given a glimpse of ‘my new nipple’. Because you see, after my other surgeries I was happy to share the result, I even put pictures up on my website – my surgeon was extremely flattered. But now, this nipple surgery, it’s personal and I won’t be showing you a photo here, you’ll just have to take my word for it.

The skin graft has healed, it’s practically the same colour as my other nipple. Skin grafts usually develop colour in their new location as they attract blood, but they can fade too. The nipple bud is still slightly large, but is flattening, it even has developed some colour too, a very natural palest pink, similar to the colour of my other nipple. As things stand I don’t think I’ll bother with a tattoo. I’m happy. I’m at the ‘procedure saturation point’ alright!

Because just right now what I’m most delighted about, I mean what’s best of all, is I have protrusion under close fitting clothes, and I’m very happy about that.

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20 thoughts on “The N word

  1. I love this post Sarah, so helpful & informative, especially as I will be seeing Ken Graham myself on 4th January.
    I didn’t realise there were so many variations on nipple reconstruction, I had a look at the different techniques & as always, you’ve given me a lot to think about.
    It’s really great that you’re happy with the end result & I don’t blame you one bit for not putting a photo on here! I too have shown my mastectomy scar to people but, I would never normally flash my breasts to people!! – & that’s what you’ve got now; a ‘new’ breast – so I think I’ll be the same.
    LOL at the ‘pubes on your nipple’ bit; the things [we] breast cancer patients have to put up with!!
    You’ve got to have a sense of humour in all of this malarkey.
    Love & best wishes,
    Chez. xx

    • Hi Chez…. I didn’t know you were seeing Ken G yourself! He’s a good man. A very good surgeon and you are in good hands with him. Are you considering DIEP? If so, any questions then you’re welcome to ask. I wish you all the best for that whatever you decide.
      Glad the post was helpful to you – that’s what I wanted, humour aside!
      All best, Sarah
      x

  2. Hi Sarah,

    I saw your “tweet” about this; the “pubes on your nipple” caught my eye and I had to read it! You bring humor and honesty to another part of dealing with breast cancer. We just ran a blog on WhatNext.com about the choice as to whether or not to go for reconstruction http://bit.ly/tBqq8W. I think we need a follow-up with the issues concerning nipple reconstruction!

    Thanks!
    Karen

    • Hi Karen – thanks for reading and commenting. The whole subject of breast reconstruction is one where women need plenty of information to make their own decisions and choices, so thanks for adding to that. Much like the nipple recon, there are different ways to do breast recon and it can be bewildering trying to work out the best way forward if that’s what you want to consider.
      Sarah

  3. Thank you for writing this informative post. Like you mentioned, I was surprised by the discussion that developed on my post about tattooing. It just goes to show that women do want and need to discuss this stuff. They want to know about the choices, what the procedure are like to go through, what the results are like and what questions to ask. And sometimes it’s really hard to bring the topic up, even with your doctor. I can’t quite figure out why talking about nipples is so difficult, but it is. So thank you for continuing to speak about a “minor detail,” which isn’t really minor at all is it? And thanks for mentioning Nancy’s Point.

  4. Thank you so much for sharing this! I just had the TRAM flap double reconstruction in July. Still healing due to some complications. Ended up having 3 additional surgeries after the big one to clean up areas and get rid of infection and what not. So, the idea of undergoing one to two more procedures to match the breasts and build new nipples (which will be grafts, have already discussed w/ my surgeon) is currently pretty much unthinkable at this point. It’s helpful to see others have experienced the same procedure fatigue. Maybe next year I’ll feel differently. Then again, maybe life without nipples will be just fine.

    • Hello Jill, and welcome. I’m glad this was useful. Sorry to hear you still have complications, but that’s the nature of big surgery like DIEP and TRAM – and it is very wearing. It’s been two years since I last had any surgery (apart from the one that wasn’t), and it sounds a long time, but really I was completely fed up and worn out by it all. So, waiting is a good thing – plus there are the stick on or rub on options in the interim. Best with you healing for now. Sarah

  5. i had a ld flap reconstruction last December and had a nipple reconstruction last month. I was amazed by the results and cant believe how good it looks. Im actually having it photographed at the hospital next week for others to look at the results

  6. I can’t even begin to imagine what this is like, never having opted for reconstruction. Thank you for your detailed account of the whole process. I had no idea so many decisions had to be made. And I thought treatment decisions were hard!
    XOXO,
    Jan

    • Well Jan it’s a choice isn’t it, and I think the point of getting enough information about reconstruction is being clear you understand how complex it is, and how it’s not just one procedure (usually) rather a sequence of procedures. And when you compare the decisions about recon to treatment decisions around cancer, they are different – in my opinion. But there are still plenty to be made! Best, Sarah

  7. Sarah, thank you. From start to finish, your post made me smile. It doesn’t seem so terrible when you write about it! I’ve been encouraged by you and Nancy and all the comments to be more open (!) about my tattooing experience, which I’ve only started writing about today. Yeah, it seems many women want to know and suddenly I’m finding the word, “nipple” easier to say. It’s so important to just be there for each other, no matter how personal. We’re all dealing with it and we are by no means, “finished” when the procedure is done. Thank you for sharing your story. I’m so glad you’re happy with your results. I think I might be, also.

    • Ah that’s nice to hear Stacey – that you were smiling! No we’re never ‘finished’ – but the sense of ‘finishing’ reconstruction is a good feeling and I’m happy with that for now! I think all ‘procedures’ take an emotional adjustment to the change, however minor, and that’s always surprised me. Hope you’re happy too.

  8. Sarah,

    Thank you for this posting, and I can totally relate. I had the nipple bud, followed a few weeks later by the tatooing. I remember mentioning to you about how hellacious the nipple-and-tattoing incidents were. YIKES. It was emotional agony. Now my nipple tatoos are starting to fade, and I’m not sure if I’ll ever retouch it. The trauma stays.

    The pubic hair incident made me laugh!

    • Thanks Beth! Yes… a pubic hair on the nipple after all ‘this’ would seem laughable really. I’ve heard others say they wouldn’t bother with touching up fading nipple tattoos too. I also remembered you saying how difficult it was too…. I’m hoping that I will ‘avoid’ the tattoo procedure and have enough colour with the skin graft. Sigh.

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