need help deciding wether to have a recon

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1

Hi all

I have my BC nurse 1st app tomorrow to discuss wether I will have a recon or not next yr.

When I was first informed about recons, I was told it wasn’t advised to have one immediately after mast so took that advice, just wanted cancer gone.

Since then, I have lost all my feelings as a sexual being, and I am sure it is down to self image. My OH is supportive but hasn’t really said anything nice to me regarding my appearance since before my op. I am sure I turn him off with my 1 boob, layers of steroid induced fat, virtually bald head etc etc, and I can’t blame him for that.

I had thought a recon was the way forward for this reason but I have another worry about having it. That is, our hosp only do the one taking muscle from your back and I am worried this will affect my general strength and fitness as I want to continue with my new hobby of sailing.

It is 9mths since my last op (ax clearance), 10 mths since mastectomy.

Any help?

Irene

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Hi Irene

I could have cried when i read your message, I do know though how you feel. I am sure your OH does not feel at all the way you think, when we feel mutilated and are still getting used to ouir new appearance we imagine all sorts of things that just are not there.

Have you spoken about a referral to the clinical phycologist, I have just been referred by my BC nurse, it took a lot of effort and i lhad to get my surgerys district nurses involved to achieve this but loads of people who have seen her say it more or less revolutionised their way of thinking and really helped them.

I was due to have a reconctruction at same time as my surgery but unfortunately due to a hospital mess up i only had the mastectomy, removal of all lymph nodes and as a alternative so i did not wake up with a flat chest a silicone implant put in. I was one of the extremely rare people who rejected the implant so mine was taken out 4 weeks after surgery. I was due to have the back flap originally and so wish it had been able to be done as a couple of people I have met have had it and it looks fantastic and they are thrilled with it.

If you are feeling less womanly than prior to surgery then you must seriously think about this kind of reconstruction and find out everything you can about it. I was given loads of leaflets about it. The operation itself i was told takes about 3 to 4 hours and they take muscle and skin from your back and thread it under your arm and attatch it to your front. You can also have a nipple made at a later date which looks really authentic. The recovery is the same as for any major surgery, you can’t lift or hoover for a few weeks while you are healing or drive for about 4 weeks. This information is what I was told, but do check it with your surgeon.

I will definately consider this operation at a later date, At present i am still healing from 2 operations within a month so surgery of any kind is out at the moment.

I do hope you start to feel more like yourself soon, you sound a lovely person so I do wish you happiness and health.

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Hi Irene

I apologise if I offend anyone as I have feelings that I’m sometimes ashamed of. Now that is out of the way here goes.

I had a TRAM recon at same time as mast. I was not going to entertain one without the other as I did not want to look at ME in a mirror looking like THAT. Sorry folks, said I was ashamed. They did not do recons at all at my hosp so they had to refer me to Chorley and wonderful Mr Saidan.

Anyway could your hosp not refer you to somewhere that do more options. TRAM was longer operation but I am realyy happy with result.

Still felt odd getting intimate with hubby and he says he’s not too sure how to treat new boob but doesn’t want it to feel left out. I told him not to bother as it doesn’t feel same.

Ask about referal

Good luck
Marilyn x

4

Hi

I had immediate LD reconstruction about 18 months ago and now do most things,play tennis ,swim.I did do my exercises which is very important post-op
Dont know wether this helps with your decision.
Good luck -if you need any further info let me know.

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hi Irene
i can relate totally to what you are saying. Had my op a bilateral in march & just finished my last FEC, no radio. So i have already started talking to bcn about recon. Like you i do not fell complete sexually, although the no hair & still feeling low don’t help. OH is also very supportive, but i just can’t see how he feels attracted towards me like this. My bcn has already said i can go else where for a second opinion if the options given to me are not for me, it’s worth asking!! don’t beat yourself up, this all takes time, but be sure you make the right decision for you.
take care & thinking about you
Louise xxxx

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Hi Irene,

I know exactly how you are feeling, I had bilateral mastectomy in Aug 06 and hated looking at myself, I took the news about having the mast worse than being told I had breast cancer.

It was a hard 9 months but here I am now 9 weeks post recon using the skin and muscle from the back and I couldn’t be happier with the results, I spent 7 days in hospital, the op took approx 6 1/2 hours as it was a double recon. It was more uncomfortable than painful and abit awkward to get comfy but I would go through it all again to feel how I do now.

I was able to drive after 5 weeks and am now considering going back to keep fit (kick boxercise), doing the exercised definately helps with the movement in your arms. The scars on my back are very neat and go across the bra strap, and I am able to wear fairly low cut tops with no worries.

Having the recon was definately the right decision for me I hope it brings you the same confidence it has brought me.

Stay positive and take care
Karen
xxx

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Hi Irene
I feel just like you, and like Marilyn - Marilyn please say what you feel because there are so many of us who feel the same and we are all straining to be polite while only swearwords can say how dreadful we feel being like this (sorry sorry sorry to those who are okay with it). I went to a support group but I was corrected when I said I felt disfigured, I wasn’t allowed to say it.

I have been wondering whether to go ahead with recon and am very very frightened of the one with the back muscle because some people do admit to being affected by it - not being able to raise their arm as high, having backache after a while, having to sit up very straight: exercise exercise exercise must help, but there may be limits.

There is a thread on here which talks about a new version which still uses back muscle but also uses liposuction, it seems to feel more like a real breast, certainly more so than an implant, that is interesting and worth a read - again it may or may not be appropriate. There is a great deal to consider, don’t rush into anything.

Counselling - I have had some and having some more: but I have “views” on what is said about body image, because wht is said is just plain wrong: I have never had problems with my imperfections, I have always felt as attractive as the next woman, to the discerning few - that’s not vanity, it’s how it should be. If you think you are worth less as a person because of your physical imperfections, then you have a problem with body image. I emphatically do not.

I do not think any human being is worth less because of their disabilities, disfigurements, deformities, scars, imperfections, whatever shortcomings they have, and obviously we all have them. I was brought up to think beauty is only skin deep, that inner beauty is the important thing and is about trying with all your heart to treat people right. This does not mean a disfigurement is not a disfigurement. Nor does my disfigurement make me feel worth less as a person. My family and friends don’t treat me any differently. My husband has been totally supportive.

But I still have a problem and its a very simple one, and that is - forgive me for being honest - two breasts turn me on sexually, one breast is just a mammary gland. This is about me, not about my husband. So that’s why recon is important to me, though it can only ever be second best, and my questions concern whether it will be worth it, whether it will be good enough. People keep telling me sex is all in the mind, but if so, then what do we need our bodies for. They would not say that to a man who had to have his penis removed. I bet that bit will be censored.

So Irene, and everyone else, huge difficult decisions, and I have written the above because they are such big decisions it is important to be clear about our own reasons, and our expectations, and we can’t do that unless we are totally honest. And I’m afraid that involves naming of parts and calling a spade a spade. I never wanted to have this problem. Truly sincere apologies if anyone is offended by anything I’ve said, I truly cannot see why anyone should be.

snowwhite

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hi snowwhite

Thanks.

My TRAM recon was a long operation but I felt that was the one best for me. I knew that they did recon and mast through nipple & aureola area and that they would need a ‘patch’ deep enough to fit either from back or tummy. My aureola is a bit on the large side so taking from back would be awkward to sew up, and possibly be more uncomfy. Tummy was generous.

Don’t know if any of you ladies considered this.

I was supposed to have difficulty bending and raising myself from lying down. It was a bit awkward at first. When I went in January to see surgeon it was commented on that I had very good range of movements which I could do with ease. I never thought about it just though everyone was same. I don’t do gyms and although I allotment garden and 42dd and size 20 ish depending on make.

I went for a mammogram last month and radiographer said recon was brilliant. Also had favourable comments from practice nurse, GP, and friends who surprisingly said come on let’s have a look.

I’ve said ever since staring chemo that in comparison surgery was a doddle, and my chemo was not the worst 8 FEC and threw up 3 times - not bad.I’ll admit other bits were rough.

Although it still looks a bit odd seeing no nipple I can look at myself confidently when I have bra and pants on or wear a swimming cosi. I also don’t have to worry about necklines and can shop quite happily.

It still felt a bit odd when I went to a spa and it had communal changing rooms. I used the only disabled one. Makes you realise that they must have been designed by men. Mind you I never gave them athought before.

Good luck to everyone making decisions.

Marilyn X

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Thanks for your comments and some interesting debate. Before all this, when I looked ‘normal’ I would have been surprised to hear myself saying I was at all bothered by my appearance, but I am. I know that if/when I lose weight and grow hair the boob thing will be less of an issue but for now, it’s just one more thing to get me down.

I have a beautiful new grandson and so the cameras have been clicking and there I am, like a big fat beached whale with very little hair. I just hate it.

So, my visit to the BC nurse was very informative. I am not in any hurry to have more major surgery and so am allowing myself time to take it all in and consider poss other options.

My main reason to have this would be to feel more sexual, undressed. It appears that results can look good in a bra, but out of a bra they look very odd, diff sizes, shapes and heights!

So, what now? Maybe I should consider some therapy, or should it be my husband who doesn’t even touch me anymore.

Irene

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All

I am with you snowwhite - I’ve said it before and like you, I will never change my position on this.

However, anyone who is doubting about whether to proceed with recon might consider having “a word” with JaneRA who is about the best person you could consult with on why NOT having recon is every bit as good for her as HAVING it is for those who have had or are desperate to have it. I’m re-reading that last sentence to see if it makes sense!!!

You can see Jane’s posts under “pitfalls of recon”.

Just thought that might help a wee bit and hopefully I’ve represented Jane correctly.

D

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Hi girls

Agree Dahlia, JaneRA is a very sensible lady. Irene, you sound very much in possession of your senses in spite of all this horrible stuff. Your husband just may be reeling from the shock of it all too, and may not himself feel very sexual at the mo. Also, he may be nervous of you - not that he doesn’t love you any more, but rather not knowing whether a sexual advance would be well received by you just now. It’s all very personal, but I would just go with your feelings and if you don’t feel very sexy better not to try and pretend that you do. As you say, the hair and weight are temporary and you will, you will feel better. Maybe now is for talking rather than anything else. Just a thought.

Take care
snowwhite

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Marilyn
I was very interested to read your ‘vital statistics’ in with your positive recon experience.
I am 38 dd and size 18 and was told outright that I would have to lose 2 stone before any recon would even be considered. When I questioned this the answer was that a high BMI meant that the surgery might run into problems and that the recon might not have a good enough blood supply.

I suspected at the time that the decision wasnt entirely based on clinical ideas and was maybe more to do with time/money/something I dont know about but isnt to do with me personally.

I would dearly love to have a recon as my self image is certainly damaged and I would love to have my cleavage back -rather than the dip-and-gape I have now. I have tried to lose the weight but nothing has happened even when I dropped the calorie intake dramatically and upped the exercise. Im at a loss as to what to do next.

Wynn

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Hi Wynn

I was interested to read your comments

I too am a 38DD and size 18 I opted for a DIEP recon in June and at no time
was I told I needed to loose weight, although following operation I have lost 1 1/2 stone

Seems like it a postcode lottery for some operations

Regards

Carol

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Hi Wynn

I was diagnosed in 12th June 06 and was size 22 and had decided on immed recon and pigged out on comfort eating for 2 weeks after dianosis. After large pig out on crisps and chocolate I felt ill. Decided enough was enough and went to Slimming World as I was worried that they might not do op. By time I was referred to Chorley (Burnley/Blackburn don,t do recons) I had lost 10lbs and told them that. By time surgery came I was just under 16st.

When asked at diagnosis if I would consider a delayed recon I just said no. I never even thought about my answer, it just popped out.

Like Carol I wonder about postcode lottery or awkward patients ( consider myself one, though not intentionally - my body)

Try Slimming World I’m going back bacause I put weight back on with funny eating habits whislt on chem and with enjoying eating once chemo had finished. I lost 36lbs in total but some has come back on.

Surgeon told me that new boob would end up slighly smaller when settled down (could take 2yrs) so carried on trying to loose weight. Didn’t seem to loose it from boobs but backside looked OK.

Good luck in weight loss

Marilyn X

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Well if nothing else, it got me and OH talking. Apparently, he was waiting for me to tell him I was ready! I thought I had!

We likened it to being a teenager again, not knowing if/when to make the first move!

Still not been there yet as had a house full of visitors, and a grand daughter on a camp bed in our room!

So, so far, I have decided not to go for a recon in the near future.

Irene

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I am due to have Tram bilateral recon in October. Has anyone got any tips on how to prepare myself physically for this op?

SandieF