Back home I\'m back home now from hospital. It wasn\'t half as painful as last time and I\'m back a day early. I\'m so glad it\' s all over. I now have very minimal breast cancer risk and can get on with my life.
Sue- thanks for wishing me well. Hospital admissions don\'t get easier do they? All I\'ve got left now is tidy up - nipple reconstruction and a bit of liposuction.
I think it\'s the best thing I\'ve ever done having these ops as I couldn\'t live with the risks.
All the best Sue and everyone
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Next operation Well the time has finally arrived. Nine weeks on from the first op and tommorrow I go to have my right breast removed and reconstructed. Despite having been through it before I am still very nervous. Unfortunately I am a squeamish person and hate needles, drains, catheters, suppositories etc (all pleasures I had last time) but what can I do-that\'s life!
I have recovered well from my first mastectomy and have been more and more active as the weeks have rolled by. Initially I couldn\'t even lift my 18 month baby, but now I can swim, play tennis etc. It is still a bit uncomfortable when I shrug my shoulders and a bit tight on my back, but all bearable. My consultant will give me liposuction in a few months time to remove bulgy skin under my left arm when she reconstructs my new nipples.
I have been off work for ten weeks and my line manager has been down right unpleasant trying to make out I\'m pulling a fast one, despite knowing what op I\'ve had. But then again she is a bit strange anyway.
Will write more when I come out from hospital.I will be in for six days and the first three days I can\'t leave the bed and I just dose up on my morphine from my P.C.A (patient controlled analgesia) for the pain. Then the last few days I can move more and more. It\'s nearly all over- can\'t wait!
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Breast reconstruction choice Hi Lisa,
Hope you are ok, I know it is a hard set of issues to deal with it took me two years to fully get my head around things. You have a high chance of a negative gene test too though-like you I resigned myself to it being positive and in my case it was, but three of my Moms sisters tested negative.
As regards type of reconstruction. Yes I had a choice but only from reconstruction from tummy muscles (TRAM ) or reconstruction from back muscle (latissimus dorsi flap). My plastic surgeon was not prepared to reconstruct me using implants only as she felt it does not give the best cosmetic results
I choose to have reconstruction from my back as I didn\'t like the idea of using my stomach muscle, i was worried if I wanted another baby it might be more difficult. It was pure personal preference really. Some women choose the TRAM flap as it\'s like having a tummy tuck thrown in for free.
I had my reconstruction from my back muscle and my plastic surgeon mananged to use all my own muscle and fat in it.. I have had my nipple removed and my surgeon is going to reconstruct me a new one. My surgeon was adamant that I have these removed ,I did want to keep them! What I have had is major surgery and I\'ll not pretend it\'s been easy, but I am pleased with the results
I\'m not sure how much the reconstruction is influenced by size and body shape as they can always supplement your own tissue with an implant ,if you for example already have a washboard tummy.
I\'m no expert on reconstruction. I have gleaned a bit of information but I don\'t pretend it\'s all factually correct. You need to have a good chat with a breast care nurse and like your doing the breast surgeon. There are various booklets available, one published by breast cancer care- breast reconstruction.
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Hi Lisa Hi Lisa,
I am having one side done at a time as I am having my breasts reconstructed using my back muscle and fat and my breast surgeon and plastic surgeon prefer to do one side at a time. There are quite a few options when it comes to reconstruction and you need to discuss this with your breast surgeon. A lot of people only have one operation and they might have their new breasts reconstructed form their tummy or have implants. I am very happy with the results so far. I like you felt that screening was not enough to rely on.
I have posted my opinion on the telly programme \"My breasts or my life\" on another thread. Some people felt it did not present all Beckys\' options and was sensationalist in tone.
Good luck in whatever you decide to do and if you want to ask me anymore questions I will gladly answer
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t.v programme Hi,
I did find that some of the content of the tv programme \"My breasts or my life\" was sensationalist (the very title!) and not totally factually correct.. However I feel that Becky was brave to make this programme and that it was valuable for the following reasons:
Educating Joe public that breast cancer can be genetic
Educating Joe public that sometimes women have preventative mastectomies with reconstruction because they are at high risk of breast cancer.
These two fundamental points I don\'t feel that Joe public understands at the moment. I am judging this on responses from some of my friends and acquaintances.( Some friends have said I should just wait to get breast cancer and then have my breasts removed !) Also even some medical people on hearing my plans for a double preventative mastectomy have said they have never heard of such a thing.
This programme will raise general awareness of the issues. I felt I had to be careful about who I told about my operation as they would not understand. (Although friends and family I have told have been positive)
The programme did have faults.
As an educational tool for women with or potentially with faulty genes that predispose to breast cancer it wouldn\'t be that good. I am glad I watched after my first operation as I think I may have been more frightened and worried about the surgery and upset by some of the voice over comments. I think it may have been good to follow Becky a few weeks after surgery-maybe showing her back to her confident self and looking attractive. This could have allayed some womens fears better than anything.
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Sorry to hear that you are disappointed with your sisters. From my own experience I do know that dealing with family members and their reactions can be difficult.
My mom carries the BRAC1 gene and has had b.c and I have just gone down the preventative mastectomy route. She is from a huge family, four of these have had a genetic test, (which thankfully were negative) the others would rather bury their head in the sand and say things like\"whatever will be will be\" or to put it another way they are \"dealing with things in their own way\". Some of my moms brothers have got daughters but wont have the test.
As a double whammy I may also carry the HNPPC gene which predisposes you to bowel cancer. My Dad died of bowel cancer. My Dads\' side are just as bad at facing up to this and it\'s like walking on eggshells. They could get involved in research which could help with developing a genetic test for this gene, but I daren\'t even ask them-that\'s how sensitive these things are.
I do understand why they would rather not have tests etc, it is a hard thing to come to terms with, but ignoring something never made it go away.
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preventative surgery Hi Justine,
My mom was diagnosed with breast cancer when I was 27, shortly afterwards she was found to carry the BRCA1 gene. She was 50. My cousin was diagnosed a year after with breast cancer, she was 38. (Previous to this it didn\'t look as though b.c was genetic in the family as even though two of my moms sister had had it before 50 this was out of 8 sisters).
I am now 30 and have just had the first of my prophylatic mastectomies with reconstruction. I know this is young but considering my cousin was only 38, I didn\'t think it wise to delay. Plus I am pleased with the results as the new breast feels soft and looks great. My next operation is now in three weeks time. It\'s a big decision to make but I feel I have made the right one.
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Sorry to hear about the positive result. It is hard- out of four of us in the family tested only I came back positive. It is easy to think why me? It\'s not fair.
All you can do is look at things in a positive way. I think to myself aren\'t I lucky to be in a position to make sure I never get breast or ovarian cancer. I could potentially live a long life and never have to deal with getting those cancers and all the heartache and uncertainty they bring.
I am pleased I choose to have the mastectomy and reconstruction- the results look good and it\'s even capable of nice sensations -to my pleasant surprise. No regrets at all. My next op is in three weeks
Stay positive. If you do choose an oophrectomy they should be able to give you HRT to get rid of menopausal symptoms- shouldn\'t they?
I have been told that having an oophrectomy reduces your chances of breast cancer too by 50%. Make sure you talk to your genetic specialist about these issues though and get all the facts.
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Hi Bev Hi Bev,
Hope you are ok. I can appreciate it must be a nerve wracking time while you wait for those results. Do always bear in mind that they stand a high chance of being negative and if they are positive you will deal with it- if I have anyone can!
I still have to find out more about the ovarian cancer issue. To date no one in my family has ever had ovarian cancer, whereas there is a strong history of breast cancer. I guess without having first hand experience of ovarian cancer in my family(thank God) it\'s hard to take it on board. I realise that this doesn\'t mean I can afford to be complacent as the fact is that this BRCA1 gene does increase my risks.
I need to do some research into ovarian screening, as it is possible I\'ve heard to have a blood test that can indicate if there is a problem. I need to decide if ovarian screening can work before there is a problem, or if it is similar to breast screening where once they pick up a problem you\'ve usually got something. I also need to find out at what age they\'ll offer me screening. I\'m sure my genetic speciallist said not before 35.
I don\'t think I could at the moment get my head around an oopherectomy as well. If I can, if it is safe to, I\'ll wait until the menopause. I might want more kids and I don\'t fancy an early menopause. Who knows though- I mean it took me about 3 years to get my head around having a mastecomy! I was going to leave that til I was 40.
My mom is quite seriously ill at the moment and is battling liver, lung and bone secondries. She is on chemo at the moment and is fit so they can try all the drugs on her if these don\'t work. She was diagnosed with breast cancer three and a half years ago (on my 27th birthday in fact) and it has been a long, hard fight for her ever since. My cousin and my moms cousin were also diagnosed around the same time. They do not have secondries.
I am really nervous about the next op which I have been told today will be in six weeks time. I hate all things medical- but I can\'t wait to open my eyes on HDU look down and see my new breast and it will be a relief.
Take care and good luck
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Hi Bev Hi Bev,
Our situations are quite similar.I am a 30 year old new mom -my baby is now 18 months old. I recently had preventative surgery as I carry the BRCA1 gene. My left breast has been removed and replaced with tissue, muscle and fat from my back. In about a month they will remove the right one. I have never had breast cancer.
I have been through a process that has taken about four years. The first part of this process was discovering about the gene. It then took me two years to decide to have a genetic test. The reasons for this were I was worried about being discriminated against if it was positive, this feeling was triggered by my genetic counsellor asking if i\'d \"reconsider having children\" if my result was positive. I was furious and decided to leave it. I thought I\'m only 26 too young to worry, everyone in the family gets it in their 40s/50s I can afford to leave it.
I started having regular screening which I funded myself. Although the genetic counsellors did eventually arrange MRI screening for me on the NHS. I went to London to see a specialist in breast cancer genetics to get as much info as I could. She told me about some new screening called nipple aspirattion I could get involved in (I didn\'t).
My breast consultant suggested that if my gene test was positive I could have both breasts removed and reconstructed. I was shocked. I had never even considered this.
I became pregnant in 2004, at this point I had my genetic test. It was positive. It was a shock, I cried for a bit then the next thing I did was decide to have preventative surgery.
I had to wait until I\'d had my son and breast fed him before I could do anything. He was breast fed for 13 months. I\' m so pleased I had the chance. It was emotionally hard knowing that once I stopped I had to have that surgery, but I dealt with it.
The decision to have first the genetic test, then the surgery has involved a lot of soul searching and fact gathering. My decisions were eventually speeded up by my mom getting secondries and my cousin getting breast cancer at 38. Suddenley it did seem something that might happen to me.. Here are some opinions I have formed and things I have learnt along the way. These are only my opinions though.
Breast screening is too \"hit and miss\" . They can only tell you once you\'ve got something. The tiniest breast cancer can be very aggressive.
Plastic surgery nowadays is marvellous. Get the right plastic surgeon and they can reconstruct you new breasts that look great with no dangerous material inside. They can even make you new nipples. Yes the surgery can be painful and it is inconvenient as time off work and childcare has to be arranged.
The type of reconstrction you have needs careful consideration. Implants only is simpler but the cosmetic results aren\'t as good. Reconstruction off your stomach may make having more kids difficult . Reconstruction off the back means two separate ops.
Now I\'ve had the op, I\'ve no regrets. I did feel a bit tearful that I\'ll never breast feed again, but then again I spent most of 2005 doing that and I\'ll probably not have more kids.
The cosmetic results are great. It\'s early days and I\'m a bit sore and bruised still. It was a bit painful, but nothing that I couldn\'t deal with. I can\'t believe it took me so long to know I\'d done the right thing.
I hope some of this will be of use. I scoured the internet before the op for women like me but never found any
Good luck let us know what happpens- it stands a big chance of being a negative result anyway doesn\'t it - I \'ll keep my fingers crossed for that!
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two weeks on Hi
Two weeks on from the \'big\' op and I still feel sore. My left breast is more swollen than it was and swelling up under my armpit. My back still feels tight and sore. I have had nausea on and off since I left hospital.That said I am feeling a lot stronger physically and moving around with more ease now and have been reasured that all my symptoms are quite normal. The nurse who did my dressings yesterday said I was \"healing up nicely\"
Now I just want to set a date for the other side as I just want to get all the surgery over with.
I can\'t believe how much I worried about having the surgery though and debated whether I was doing the right thing. I wouldn\'t even have a genetic test for ages. Now I\'ve started the process I am pleased with the results and feel strong like I am facing up to this BRCA1 gene and dealing with it.
I feel much more peace of mind now I have started this process. I wont have that constant fear about breast lumps and so many nightmares.
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l-d reconstruction due to BRCA1 gene Hi, I would like to share my experiences and find others im my situation as I have never come across anyone who is, although I know you are out there.
I have just had a prophylatic mastectomy with an immediate L-D reconstruction. I have had this done as I carry the BRAC1 gene, but I have not had breast cancer.
I am 30 years old. I actually waited till I \'d finished breast feeeding my baby before I could do this, as a consequence I breast fed as long as possible to put the operation off!
I think I have made the right choice to have such a big operation done. It has taken about two years of research and planning! A lot of my family have had breast cancer and my moms\' is now serious and advanced. A lot of relatives were getting it in their 30s.
I feel much more in control than if I\'d opted for just screening as with screening they only find it once you\'ve got it usually. Who on earth wants to keep two breasts waitnig to turn cancerous?!
So far I\'ve only had one side done as I choose to have l-d reconstruction and they can only do one side at a time. The reasons I choose l-d are it seemed less complicated surgery and I might want another baby one day and this might not be so easy after a tram.
I am pleased with the results so far. I only came out of hospital last Monday so I\'m still sore and tight round my ribs and back. I felt sick and dizzy for a few days but other than that I\'m on the mend.
I \'ve got to do it all again which isn\'t nice. I found it very painfull indeed for a couple of days, but I \'ve read other posting from women who say this needent be the case. So I will be discussing better pain control with them for next time. That said it was bearable and I have no regrets.
I feel like the only one in the world in this situation though I can\'t be, love to hear from anyone!
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