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To recon or not to recon?

32 REPLIES 32
Guest user
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Re: To recon or not to recon?

Wow MissPiggy What wize amazing words!

I am thinking hard, I have another meeting this Friday.
Thanks again & I am glad it worked out for you
TC
Mel
x

Diana
Member

Re: To recon or not to recon?

Hi,

At the time when I was first diagnosed with BC, it came as a thunder, I could not think about a reconstruction at all due to the shock. I even thought, take both away. I was also terrified of the potential recurrence after the reconstruction/mastectomy. I can understand what you are going through especially you have had various treatments, you may wonder whether it is going to be worth it or whether you could have an easy recovery without complications.

When I was seeking advice from fellows BC, three young women told me that they've decided to have mastectomy without the reconstruction. They are happy with the decisions made. I think taking everything into consideration, i.e; the successful reconstruction stories, the surgery that may go wrong and the realistic risks, would help us to decide. Whether we want to put our body through such a major surgery. To be honest, the plastic registra advised me to be realistic, not to hang my hope too high before the surgery as things could go wrong and the reconstruction may not happen or be completed. So I was mentally prepared for that. I may come out from the theatre flat chested as I told the PS that I do not want TRAM or LD, if the DIEP fails.

I did not have to go under any chemo or radiation treatment before the mastectomy. So physically I was in tip top shape before the surgery. What encouraged me to decide to have the reconstruction is that the breast consultant told me that the treatment is simply mastectomy and that I am a good candidate for an immediate reconstruction subject to PS's OK. However my reconstruction surgery was not straight forward, the PS and his team battled on for 16 hours due to veins connection problems. They had to re-do twice and finally managed to save my DIEP by harvesting a vein from my upper arm. But that was such a long operation, to be under anaesthetic for 16 hours!! When I came around from the operation, I felt so awful, like being hit by a big bus and thought to myself " and wished I did not put my body through such an ordeal. The way I felt at that time I thought that I would not recover well, but you cant go back. So I may as well be strong mentally to get bettter. Miraculously I did recover and faster than my PS thought.

We can only decide based on what we are prepare to put up and hope for the best. I am not sure if I would decide for a reconstruction had my treatment been different. I am happy now that I have a reconstructed breast, but was prepared to have a flat chest. I also know other young women who are contented with the flat chests and happy with the decisions they made.

It is a difficult personal decision. I wish you well and good luck with whatever decision you make. Take care xx

Guest user
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Re: To recon or not to recon?

Oh the Hot Flushes!
36 and I get them qute regular..... I try to laugh them off but people sometimes dont believe me & I reckon they think I am getting embarrased..
I dont have any caffiene at all, try and avoid spices but the choc thing mmmmm!
Nights are the worst - my poor pillow gets tossed so many times during the night I reckon it will be a rag within a month.
I have even tried a memory faom pillow - hate it cant turn it as easy... lolol
I finisged chemo July time (I think!)
It is all confusing but I often make it more confusing....
hope all is well with you.
x
Mel

Guest user
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Re: To recon or not to recon?

Hi Mel

Well, what a performance! So confusing.... but I think it's better the longer you wait, to give your skin a chance to recover.

I talked to the consultant about the surgery and he did say that as it's not a year since I finished chemo it's best to wait at least that long. I have heard this from others too. But it's great you can get moving on it this year.

You did make me laugh with the hot flush coming on, they happen at the most inopportune moments don't they!

Take care, and keep me posted.

Cecelia. x

Guest user
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Re: To recon or not to recon?

HI Cecelia!

I hope you are well?

I usually get dates etc mixed up so It is reasurring to know that I am not alone.

Well How did I get on! mmm mixed feelings...

Got there, waited 20 mins, put in side room - usual routine strip top half.
Male surgeon & nurse came in examined me, shocked that I had not skin change at all fron rads! Finished rads 26th Oct 08..
My PS came in she checked me over was also surprised - asked me to dress then both left the room!
At that point I felt a little disheartened as I just felt like a slab of meat put out for prodding & poking.

A nurse then ushered us into my PS office.
She offered to ways. but the best option in my case was the tram flap. She wants to do recon first then reduction 6 months after.
She said that she would not do any surgery for the minimum of 6 months after rads so therefore she would start the surgery at the end of April then as she
said 6 months later reduction on the other side! And basically we was then asked to return to the reception to get dates for appointments.

This is where it gets a little confusing!

The receptionist gave me 2 dates one for this friday to look at pics and dicuss the surgery then one for July - Yes July....
When I quered this the receptionist said that is what the PS had wrote on the notes that she would see me again in 6 months from that day - when I queried this
she started to get a little snotty with me, I even asked if she could ask the nurse to check with the PS as that is not what she had just told me - OMG if looks could have killed. I just got the "look!" and was told that when I came back on Friday I could query it with the nurse myself! grrrrr

Anyway I could feel a mega hot flush brewing so I just wanted to get out of there! But don't you worry I will bring this up with her on Friday!

Well I hope I did not bore you..

TC
Mel
xx

Guest user
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Re: To recon or not to recon?

Hi All

Well I got it a bit wrong today, my appointment was a follow-up to my mast, not to discuss recon. As I've cancelled before apparently they'll contact me in the next couple of months with an appointment. But I did ask the consultant about preventative mast on the other side but he said that it will only reduce the chances of recurrence by 1.5% over 5 years, double for 10 and so on. He said it's unlikely they'd agree to it as there is no history of BC in my family.

Anyway, how did you get along today Mel?

Cecelia. x

Guest user
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Re: To recon or not to recon?

Thanks everyone!

I really want 2 go through with but hate the idea like many about the op. Plus as I have a badly scarred liver my ALT & Alk Phos are raised above normal so have to be really careful what I eat, drink (very little - which is a nightmare as I love my wine!) and what medsw I can take. so the idea of all that stuff being pumped into me scares me as I do not want to end up back in hospital with liver & kidney probs again. I will see what PS has to say today and have a good think about it, and way up the pros and cons! Thanks again.

xx
Mel
xx

PS Good luck Cecelia with your appt!
xx

Guest user
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Re: To recon or not to recon?

Thanks everyone for your advice, my appointment is tomorrow and I still don't know what choice I'm going to make.

Thanks for the info Bubs, really appreciate it.

Cecelia. x

owls4eva
Member

Re: To recon or not to recon?

Hi Mel

Good luck for tommorow let us know how you get on

Karen

XX

lisaf
Member

Re: To recon or not to recon?

Karen that sounds really good for you - hope I can get the guts to make a similar decision
x

Guest user
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Re: To recon or not to recon?

Hi Mel,

Thought I'd join in the thread, I had bilateral mastectomy in Aug 06, I really struggled with not having any breasts, in fact I took having to have the mastectomy alot harder than being told I had breast cancer, I think that was because both my mum and older sister had had breast cancer and survived it, so being told I had it I just took it in my stride, but when they said double mast I just went to pieces. I had to wait what seemed a very long 9 months before I could have the ld recon on both sides, but I can honestly say it was the best thing for me. I was in theatre approx 7 hours, in hosp 6 days and yes it was a little painful, especially getting in and out of bed, I found it very difficult to get comfortable because it was both sides, but I can honestly say hand on heart I would go through it all again to feel how I do about myself now. I had the nipple recon and some skin removed from under both arms done about 9 months after the recon and recently had the tatoos done, they look fab and once the scarring has faded I'm sure you would stuggle to know I'd had it done.

All the very best for Thursday, obviously you must do what is right for you, we can only let you know of our experiences and my was a good one, let us know how you get on

All the best
Karen
xx

lisaf
Member

Re: To recon or not to recon?

Wow sounds good well done. Need to do more research about the options. I have had masectomy on one side and know now that risk is higher due to genentics on other side so weighing up the otpions - the thought of getting both done at once sounds good as im such a wimp about operations but it seems soooo huge
xxx

Guest user
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Re: To recon or not to recon?

Hi girls (in particular CeceilaL)

I had an LD flap.

I was in hospital the night before the op ( just as well because they kicked off at 8.30).

By 12 noon on the day of the op I was in intensive care recovering from the op, catheterized and on a drip.

No pain whatsoever, but a morphine if I needed it.

Four nights later I was out. I have had much greater mobility in both sides (one side was an LD flap, the other a prophylactic mastectomy with immediate implant - my choice) than I could have ever, ever imagined, but I must add that I was extremely fit before embarking on any of this.

If any of you want to private message me with any questions, I would be happy to help.

All I can say is that to look down at two breasts in a bra rather than one is a big advancement in this BC war!

Bubs X

Jennyg
Member

Re: To recon or not to recon?

I was in hospital for 5 days ( apparently this was a speedy recovery - so expect at least a week!) they wouldnt let me out until all the drains were removed and I could walk about a little. Also wouldnt release me until Id had a poo... sounds funny - but after the tummy tuck I was worried about putting any kind of strain on it!!!!!
I took 6 weeks in total off from work and probably could have struggled in after 4 or 5 weeks if pushed to. ( depends what you do for work - my job is recruitment - so although quite hectic - is primarily a desk job!)
If you need anything else answered -please let me know and i will try my best!

Guest user
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Re: To recon or not to recon?

Thanks Jennyg

Can you tell me how much recovery time you needed and how long your were in hospital?

Cecelia. x

Jennyg
Member

Re: To recon or not to recon?

HI
I had mastectomy (left side) and immediate recon using the diep flap ( tummy tuck)
I would recommend it - I didnt wake up flat which I couldnt bear to have done. The surgeon was a miracle worker ( Mr Nduka) and all it looks like now is that they took off the nipple and replaced it with stomach skin - just a small round £2 coin sized thing. There is a scar running from the side of this circle towards my armpit - hardly noticable now and I had it done on 22nd Sept ( see my thread titled ' mastectomy and recon due on 22nd Sept - totally terrified' or something rambling along those lines)
yes it was painfull but it was all done in one hit and my new boob feels pretty normal. Highly recommend it, depsite my 11 hour op!!

Guest user
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Re: To recon or not to recon?

Same here Cecelia, Got appt this Thurs and getting really confused with all the jargon...
Any help...Advice...
xx

Guest user
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Re: To recon or not to recon?

Bubs, can you tell me how long you were in hospital for and how long your recovery period will be? Like you I had mastectomy (left side) on 21st Nov 2007 and have yet to get up the courage to go for recon. They have advised Tram FlaP (?) Get a tummy tuck into the bargain apparently! And what is the prophylactic mast you had, is that prevention for the other side?

Need help as have another appt to discuss recon on thursday and just don't know what to do!

Cecelia. x

Guest user
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Re: To recon or not to recon?

Hi All,

Thank you for some great advice!

I too have probs with tops but manage to sort out a nice swimsuit thanks to the girls at Lingerie Illusions!

I will let you guys know what I decide when I see Surgeon on Thurs
Thanks
xx
TC
Mel
xx

Guest user
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Re: To recon or not to recon?

I am 30 and 2 months post Mastectomy. I have my consultation in about 8 months after treatment about Recon. My surgeon is more bothered about it than me, telling me that at my age I should bla bla bla. THis is about the only thing we do have a choice in. For me, the thought of more surgery pains me. I am really ok with my scar, its a neat job, and I don't see it as a negative, in some ways I am proud of it, because that day they got all the cancer, and I beat this horrible thing. Yes I am now having to change my wardrobe, and buy new underwear, but hey - I needed a change anyway. Its personal choice at the end of the day, and I know they can do amazing things and most have excellent results. Good luck in whatever you decide. Mands

lisaf
Member

Re: To recon or not to recon?

Happy with this thread as in same position ish. Finished all my treatment and due to now finidng faulty brca1 gene having a masectomy on other side so thinking about recon at same time but Im such a big baby, im terrified of hospital and the recovery etc. problems etc , its not just vanity, Im large chested and hate the lopsided look but hate carrying that false one around, my scar is really high too Mel and can barely wear any tops, dying to go swimming and nt sure about a holiday cos of how I look.

Bubs, thats amazing what you had done, it seems like what I was thinking about and you are feeling okay 11 days later, wow! its the thought of haivng both sides done at once but hate thought of seperate surgery and also something foreign inside me, oh, what a wuss
xx

Guest user
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Re: To recon or not to recon?

Hi Mel,

Ask about lipofill if its an option for you? They take fat from bum tum thighs etc, wash it out and inject it a newish procedure in the uk but worth asking.

sukes

Guest user
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Re: To recon or not to recon?

I had a mastectomy (right hand side) in November 2007.

11 days ago (i.e. 23rd December 2008, some 13 months later) I had an LD flap recon (and implant) on the right hand side together with a prophylactic mx on the left hand side with immediate replacement with an implant AND I HAVE NEVER FELT BETTER. I hope this gives some sort of courage to you girls our there who may be contemplating this sort of surgery. It was right for me, any way.

owls4eva
Member

Re: To recon or not to recon?

Hi Mel

Have to admit I didnt go with a list of questions went in with an open mind as to what the consultant would think was best for me. He is sending me a dvd of the 3 options available and I am then meeting with him again in three months. I wont be having my op until July time because that will be a year after my rads. I think once I have looked at the dvd it will help me make my decision. The consultatn thinks that (sorry dont know the names of the ops) the one where they take skin from your stomache will be the best one for me but he said keep an open mind until you have looked at all the options.

Hope that hasnt confused you more - I think knowing that it will be quite a while before the op is giving me peace of mind for making the right decision.

Karen

XX

Guest user
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Re: To recon or not to recon?

I was desperate for my recon, infact very peeved at having to wait 2 years.

37 at diagnoses with a good fugure and could wear what I wanted, as soon as I had my mast I hated my body and loathed popping a prosthesis into my bra every day to try and look normal, also hated having to check it wan't on show, felt I couldn't go swimming with my kids as costumes were not fashionable and got upset my first summer when I had to throw all my tops away. (infact I was getting depressed as I felt it was such an ugly constant reminder)

I had tram flap Dec 08 and have never regretted it, I went into theatre smiling not crying like I did with mastectomy and I got to treat myself to a lovely dress for my 40th and had a cleavage + back to my areobic classes not worrying over a prosthesis flying out. I personally feel more confident, I know its not for all woman, it is a big op but was definitley the right choice for me.

I didn't really have any questions, I knew I wanted the op and wanted to listen to what the PS had to say as he is highly recommend, he gave me a good prod all over, got his tape measure out and checked my back and tummy muscle, he then advised the tummy for me due to cup size + my skin was a much better match (I have a freckly back). we both agreed no implants as wanted best cosmetic results, he was very honest in time scales of op and recovery and every checkup I have had since with his team, Onc or BS they have all commented on how quick I recovered and the success of the op.

Debbie x

Guest user
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Re: To recon or not to recon?

Thank you for breastfree link Jane. A very interesting and refreshing site. I often feel like an oddball for not minding my mastectomy at all - and for wishing I'd had a bilateral so I wasn't uncomfortably lopsided.

Guest user
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Re: To recon or not to recon?

Hi all

My scare is horrible i hate it, it kind of folds as it gets near my arm as though i have a scar going up as well.

Guest user
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Re: To recon or not to recon?

Hi Karen

I hope you dont mind me asking but what sort of questions etc should I ask?
What should I expect?
Thanx
Mel
x

owls4eva
Member

Re: To recon or not to recon?

Hi Mel

Had my meeting with consultant yesterday and Im to go back in three months when I have had a really good think about all the options. At the minute Im 100% sure that I will go for recon I hate not being symetrical. I agree with you about tops although I was never big enough to flaunt anything really it does cut down on the choice of clothes you can wear. A friend of mine is having a mastectomy on her good breast to sort out the symetrical problem - dont thinks thats for me but who knows.

Karen

xx

Guest user
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Re: To recon or not to recon?

Thanks Bubbly - will let you know how the meeting goes.
Jane - thak you I will check this site out.

I am ok with my scars etc to a point, but as my scars r quite high it is really hard to buy nice tops etc for a bug busted
lass like me!! I was so used to - dare I say it - If you got it flaunt it!!!! but hey thats all changed now...

xx

Guest user
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Re: To recon or not to recon?

Hi Mle

I was 55 when I had my mastectomy...I never wanted reconsttruction and have felt comfortable with my scar, how it looks etc. There's a good site called breastfree.org which puts a positive perspective on not having a reconstruction.

best wishes whatever you decide.

Jane

Guest user
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Re: To recon or not to recon?

Hi mel

I am in the same mind as you at the moment i just dont know whether to or not. I have mine consultation on 15th jan i have decided not to have it yet though, at least we have the option to wait till we are ready.

I know i'm not helping you here but just wanted to say hi. Let me know what you decide

Guest user
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To recon or not to recon?

To Recon or not Recon?
That is the ????

Im 36 & got my 1st consultation with surgeon this Thurs..

The thing is I have read so much for and against and probs etc that I have got myself into another tizwaz..... Why cant things just be easy?

Anyway with everything that I have been through is it wise 2 go for recon?

I need some help - I know I can only make the decision but some advice
would be nice................

Thanks
Mel
xx