Reconstruction

Public Archive
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Hi All, I was wondering if anyone can help my anxieties.

In 2009, at the age of 36, I had a left side mast with node removal. I had 5 months of FEC, a month of radio and am now near the end of my herceptin (what an exhausing 18 months it has been).

I have seen the Consultant regarding my recon but everything he told me went straight over my head! I think they are putting me forward for the op that they take the muscle from my stomach (if they can find a muscle there they are better than i thought they were) and making me a new boob!!

My anxieties are (a) do i really want a 7 hour operation, (2) how long will it take to recover and (c) is it really worth it?

I am due to see him on the 26 May again but i have so much going around in my head i dont know which way to turn. Can anybody help??

S xx

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Hi Sarah

What a 18 month ride you’ve had! I had an immediate recon, so I don’t really know how I would feel if I was in your position. I am 41 and for me having a recon was important to me. I’m sure lots of people will be along soon with their thoughts.

Difficult decision, arm yourself with lots of info, but really it’s your own gut feeling. My aunt had a mastectomy 5 years ago and it is only now that she feels ready for her reconstruction, so don’t feel rushed into a decision.

Rachelx

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Hi Sarah

I am in a similar situation to you, only 37, recovering from 18 months of treatment, but I have decided, for now against recon. My reasons are:

*My health is more important than vanity. It would be a 7 hour op initially and I would have to have implants and nipple made and then an uplift - so at least 4 ops and hours of surgery and recovery.
*I only have small breasts anyway so it has not made much difference to my clothes shape etc.
*It is a bit of feminsit, anit-media obsession with ‘tits’ that also makes me proud to be one-breasted.
*Part of me also thinks recon is a bizzarre from of self-mutilation to conform to a western man’s ideal of what a woman should be.
*There is a lot of pressure form the NHS to have one - my plastic surgeon even promised me he could give me back my feminity!!!

There is no rush and you can be re-referred. My decision was to get well, take time to live with one breast and think carefully about undertaking a huge and non-urgent series of operations.

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Sorry - bit of a rant that last post. Just my opinion, I’m sure there will be lots of women who disagree and who are very happy with their decision to recon.

Also, I’m a single mum and run my own business so there are financial implications too.!

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Hi, I have just joined the website. I have been reading the posts since my diagnosis of BC 2 years back.
I had skin sparing mx and temporary reconstruction with a silicon implant in January 2009. The lymph node biopsy was negative. I finished chemo in July 2009. Had an awful time during chemo and it took me almost 1 year to recover from the chemo induced fatigue and the psychological trauma of all this. I didn’t need radiotherapy. I am a doctor in NHS and have been back to work for more than a year now and feel fine except for the occasional annoying joint pain and stiffness that I developed after starting tamoxifen.

I have developed this dilemma whether to go for the Diep operation that is being offered to me this year. I feel very anxious about the pain, potential complications, long recovery time and wish I didn’t have to have it done. My surgeon has explained everything to me but obviously I have to take the decision. I am seeing him after about 5 weeks. This will be a setback for me and I am just thinking I have just started to feel normal again and settled down at work. Is this going to be all worth it ?
Has anyone had a diep at the royal marsden? Could anyone help by getting me in touch with them?
Many thanks. P.

6

Hi there, just thougt I would put in my twopenny worth. I was diagnosed in 2008, having a mastectomy, lymph node removal a month later, followed by 6 months of chemo and 6 weeks of Radio. Initially it was all to much to take in and I decised that I would not have a reconstruction. However I changed my mind once my life settled down and got back to work. I had a DIEP (from the tummy) operation on 1 December 2010. Eight weeks on I am really glad I had the op. I am by myself and apart from staying with firends for three nights I have coped at home, however I have to say Ineeded a good support group and had some fantastic friends who helped with shopping, ironing etc.
Athough I did get my own meals. At the end of the day it is a personal decision, that only you can make. I am not back at work yet but within the next 4 weeks I shall be returning.

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Hi Sarah,
Let me know what you decide. I am facing the same thing. Am on my penultimate Tax, with herceptin. rads to follow. I am feeling at the moment that recon is that way to go for me (41). I want to feel that I am leaving this process ‘in one piece’ so to speak. I know it is a lot more surgery, and I have 3 young kids, but it is important to me.
On saying that, I have a close friend who went through all this 2 years ago, and has not gone down that route, and is very happy.
So keep in touch, either on here or pm, would be very interested to see what you decide, and how you get on,
All the best,
Tracey
Xx

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Hi ladies and esp Sarah and Tracey

I’d just like to add a little to this conversation by saying that you should never ever be pushed or rushed into anything - you should do the reconstruction if you decide to do it when you feel the time is right. That way you can be sure you’re a) doing the right thing and b) that you’ve chosen the right reconstruction for you - with your surgeons advice and help of course.

I had my reconstruction last April and had 3 years to think about it so I knew exactly what I wanted and why when the time came.

Hope this helps
Ruby xx

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Hi Dibble
Thanks. Your post is reassuring. I know people are different and not everyone has complications after surgery. Being in medical profession I know diep recons are being done more frequently which has improved the technique and experience of surgeons. Still feels daunting and I worry about the healing, pain etc. I am glad you did so well.

I had 2 operations (cesarean sections) when my kids were born (I was much younger, they are 16 and 11) and my surgeon keeps telling me the abdominal wound scar and process of healing is a bit like after cesarean but I know it is different because of the large flap taken out and the resulting traction on the tummy. However, I can see that the end results are very good.
Could I ask you how many days did it take before you could stand and walk straight?
Many thanks to you and everyone else and best wishes.
Xxxxxx

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Thanks Ruby,
I have managed to push an app sooner with my surgeon, following these discussions, as I just want to get things a bit straighter in my mind, and make sure I have the time to think about it. There are very intersesting points on both sides of the debate.

Gretchen - I think it was you who had the lovely, nude torso shot, post mx, as your previous photo wasn’t it? I meant to say at the time how beautiful it was. I found it very heartening to look at someone, who whilst not 'conforming, ’ still looks every inch a feminine, confidant, lovely woman. Thanks for sharing it, it got rid of a few of my pre op wobbles.

Tracey

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Hi Tracey

It was me that had the torso shot. Thank you so much for your kind words. That was the exact reason that I uploaded it: to say that I am still me, still a woman and still feminine, even if I do only have one breast. I get a kind of perverse pleasure from being different and having an unusual body, I would prefer to be ‘normal’ but I’m not and that is still ok.

Good luck getting through chemo and your decisions on recon.
x

12

Hello Ladies,

I am older than you (49 at time of MX) and was able to have a skin sparing MX and immediate DIEP recon … but that maybe wasn’t the best decision as I subsequently had to have rads and my flap has hardened and lifted considerably … but I haven’t regretted the decision at all.

While I respect Gretchen’s point of view, I did not feel that having my recon had anything at all to do with vanity, or conforming to media stereotypes etc. I love underwear! I have 30 or 40 beautiful sets of underwear that I have collected over a number of years. I love the way beautiful bras make me feel. And I wanted to be able to still wear them. This probably sounds trivial to many, to me it was an important part of my femininity.

I decided on the DIEP because although it was a big initial investment in terms of time and discomfort, once it was healed there was no maintenance (i.e no filling/changing of implants etc).

I have also decided not to have a nipple as to me that is purely cosmetic and I don’t mind not having one at all, and at the moment I am not planning on having a lift to my other breast despite the fact that it sits very differently from my new one as once I have a bra on, it looks pretty good with a natural, if slightly lopsided cleavage.

I have wondered often, if I had not had the opportunity to have an immediate recon, whether I would have bothered, as I may have felt quite comfortable with my new shape and not missed the undies too much at all. But I shall never know that. You have that information … you know how you feel with one breast and can use that info when making your decision. You also know that you won’t have to have rads afterward.

I have a long e-mail that I wrote to someone a few weeks after my op outlining my experience. If anyone would like to see this I am happy to PM you.

Folks may notice that I sometimes contradict myself when talking about how I feel about my new boob and I think that is because over the last 6 months I have changed my mind so many times! But I haven’t regretted it and now almost 7 months post-surgery I am feeling pretty much back to normal and my new boob almost feels like it belongs to me.

Good luck with your treatments and decisions.

Jacqui

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Jacqui, yes please, can you send that to me? Any info at this stage, esp since I would consider same op, would be very helpful,
Many thanks, Tracey

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Sarah,

I think it would be useful for you to ask your surgeon why he has decided on the DIEP flap. Is it because he thinks this is the best for you or because this is the op he is comfortable doing? Each different type of reconstruction has different benefits.

I had a mastectomy and LDflap reconstruction (with implant) and both things together took 4.5 hours - not anything like the 7 you mention, so it might be worth looking into the different options. I have a minor scar on my back under the bra strap, and so is hardly visible.

DIEP may be the best for you - but you should know what else is on offer.

Annie

15

Hi

I had a mastectomy in Dec 2006. I thought at the time I could manage with a prosthesis, but as the months wore on I hated it. I couldnt get comfy bras even after sending to many catalogues for them, and not to mention the money I spent on useless bras. I hated the hot, sweaty feeling the prostheses gave me. My bra was always damp and uncomfortable. After a lot of thought I decided after discussing things with drs to go for a Tram Flap op. 6 weeks down the line I am so glad I did, the results look great and did from day 1. The first 3 weeks are hard, it is a huge op (10 hours)nd takes a bit of getting over. It is nice to wear a normal bra.

Good luck with what you decide.

Carolyn x

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In reply to your question, I was not able to get out of bed until the third day after my op, this was due to hospital not having girdle in stock. But on my first attempt to get up the nurse was very helpful and patient, and I managed to sit in the chair for two hours. From then on it was steady progress. On arriving home the only difficulty I had was climbing stairs for about the first three days which was quite painful. I have gradually built up my walking and can now manage a couple of miles at a steady pace.
I would have to say compares to an op I had on my tummy several years ago, I found it fairly easy to stand upright after the fifth day, and certainly not as much pain. However you do need to remember that we are all different, and have different pain thresholds. Take time to think about what you want and why you want it, there is no hurry, I would add that I was grateful for an exceptionally good plastic surgeon who really cares for his patients. Even after the op I was re-assured of his care, I was in hospital eight days and saw my consultant on six of those days. I am sure his care and conern helped a lot. If you have any other questions don’t hesitate to ask.

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Many thanks Dibble for the post. Thanks Jacqui for your message. This is really helpful, appreciate it.

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Hi all, just jumping in, Jacqui would love to read your email.

I’m 3 years this weekend post diagnosis, wanted recon at time but wasnt an issue, had all the chemo, rads, ovaries removed, arimidex and Im 38 on Sunday. Im defo not into the vanity side but Ive struggled so much with the practical side, Im about a double ff cup size and I hate being in my swimming costume and uncomfie in clothes it really bothers me so I decide to look into recon, i havent taken it lightly and as I have the BRCA 1 gene I have decided on second mastectomy rather than the fear all the time of mamos and mri’s on other side, I am a big wimp and terrifed of ops and drains take and age with me, but I am moving through the process, just had the green light for a double recon using tummy which I think is even more hours and more risky, so diet to loose some weight and i have had a temporary expander put in and filled up but this sits under my chin and I cant wear my prothesis just a softie and it has really altered my confidence and life, Im so happy to be alive but I am wearing a scarf constantly because of the difference protuding under my collar bone so Im going for the operation but scared of risks but im hoping it goes okay and gives me new confidence, it’s not about vanity with me as a nipple is here or there it’s about being able to walk around withouth being trussed up and scared to bend, so if anyone has any tips looking forward to them.

Like the other posts say its a total personal opinion and I respect everyone’s decisions, in fact if i was small chested and didnt need second masectomy i probably wouldn’t go for it xx

Good luck all x

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Hi everyone,
just thought I would add my tuppence worth!
I had a tram flap at St johns 10 days ago and thought I would just let you know how it went.

I will be as honest as you like, so if you have any questions about anything at all, no matter how personal, just ask.

I had MX about 2.5 years ago and chemo after. They used skin saving at the time as I always thought I was likely to want recon.

I tried hard to live happily without a breast but found the awkwardness of changing rooms and showers, the wearing of a prosthesis all the time, and the constant reminder of what had gone before, was too much.

I do not feel defined as a woman by my breasts, but did find I couldnt move on from the cancer looking and feeling the way I did.

Anyhoooooo…a long wait ensued before surgery but thn eventually got my op on the 18th. It was a 10 hour op, you wake up in ITU where they kept mw for a night, then up to the ward in a private room, kept very warm to keep the blood vessels dilated.

The day after the op I was up on my feet and able to potter around a little bit. I had problems with a drain on day 3 that was pretty painful but they removed it the day after, and I have improved each day since.

I have been for a wander round tescos and ikea (!) can get up and into bed OK too. Hubby is off for a week but to be honest, not really nec. I could look after myself I reckon.

I am self emplyed and run a small business so didnt take the decision lightly to take time off. I have saved enough money to keep me off for a month and make sure I can pay the staff. I think I could go back to light duties next week but I am going to take a third weeek as I have so much planned (write a book, do some oil painting, learn Italian etc etc)

I really love my boob already and am much happier, the flatter stomache is an added bonus.

I wouldnt want to push anyone into doing it, but I am glad I have. 3 more years of Tamoxifen then I intend to forget I ever had cancer!

Love to all
Gill

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Thanks for that Gill,
Tracey