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Should I have preventative surgery?

38 REPLIES 38
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Re: Should I have preventative surgery?

Where to start? My Mum passed away in 1999 after a battling breast cancer, She was only 49 years old! I was 16 years old at the time. I was always so scared about finding out the risks and facts and never realised how much advice was available (until now) I am now 24 and want to find out what I can do so I don\'t feel like a ticking bomb!! I want to enjoy every second of life and am planning my wedding I want to feel like I am giving 101% to my future husband and not have this big dark cloud over my head. As I said I am all new to this and would like some advice of where to start and options/advice of where to turn?

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Re: Should I have preventative surgery?

Skin and Nipple sparing bilateral mastectomy Hi Anne,

In response to your question regarding the skin and nipple sparing mastectomy...
I had had this done by Mr C Holcombe in the Royal Liverpool University Teaching Hospital on 30th September.
I can\'t say yet how happy i am with the results because i haven\'t even started the expansion yet. At the moment i look really terrible - like my chest has been trodden on!
On the plus side I have absolutely no bruising whatsoever - which i find amazing - unless it just hasn\'t appeared yet!
Unfortunately i got an infection in the stiches on my right side but this is clearing up quickly with the antibiotics.
I have the full range of movement in my arms which is also pretty amazing but i am unable to lift anything yet. Other than that i am meeting each day as it comes.

There are a lot of options open to you so do as much research as you possibly can. Its only when you are happy that you know all the available options that you feel in a position to decide which method is for you.
I also went to a clinical psychologist for six months before i made my decision which i found a great help. If that is available then to you then i recommend it.
good luck

gingernut

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Re: Should I have preventative surgery?

Thanks Thanks for the replies.

Lisa - thanks for the information from your appointment with Mr B. I am hopeful that I will be able to keep my nipples just to make the new breasts feel more like my own, but am prepared to lose them too depending on the increased risk levels.

Hi Puppydog - thanks for sharing your experience too. You really have had a rough ride haven\'t you? I guess that we anticipate that once we have \'got rid\' of our breasts most of our problems will be over, but that doesn\'t seem the case for you. I can totally understand you not wanting to put yourself through all that surgery again.

Can I ask if you would have made a different original decision based on what you have had to go through, or would you do the same again?

Thanks again,

Saire

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Re: Should I have preventative surgery?

I did it Hi, I just wanted to reply to this one.

I have had prophylactic double mastectomy 6 years ago, I have 1 member of the family with BC, but she lives in the USA, but I have had several lumpectomys when I was 25-27. then up to the age of 35, I got loads more, and there were fibroidenomas and abnormal cells, After discussions with my surgeon who said that in order to get the abnormal cells tested or removed, he would have to cut away at my breasts past the fibroidenomas, and as I had leaking nipples, we decided to go for prophylactic mastectomy with reconstruction at the same time. I got tissue expander, and inflated with saline over period of time, this went hard, so we removed them and put in tear drop implants, I had them in for 3 years and last year unfortunately got a severe infection in the implants and had to get them removed, and then shortly after I had to get my nipples removed, as there was discharge in them and also infection still present. it was like taking a step back, but now I have been offered reconstruction using my abdominal tissues etc, but declined this, as I dont want any more surgery., I now wear prosthesis.

At my last check up 6 weeks ago, we found another lump where my nipple was, my consultant didnt know what it was, and I am on the list to have this removed and tested, I wasnt offered any needle tests or biopsy.
It is still worrying what this lump is.

My sister called me last night to say she has the hospital next week as she has found her third lump, the first two they say are benign and have left them, but now she has a third one, in under 2 years. She may be like me, but not sure, she will let us know what the outcome is next week.

I feel that there isnt enough support for women who take the option of prophylactic surgery, especially with the risks there are on nipple loss or problems with implants etc. and when you get more lumps...

xxx

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Re: Should I have preventative surgery?

Could have sworn I replied to this yesterday ! Tut ! Musn\'t have posted it properly !

Becky said she didn\'t mind people calling her, I did txt her first though. When i rang the helpline her mum just gave me her number....

Nipples, well this is my big dilemma ! When I spoke to the surgeon (Andy Baildam - are you seeing him ?) He said it was possible to keep them, however there is a possibility that you could lose them, although he has only lost two pairs and both were heavy smokers. With mine he said he would need to retain approx 10% breast tissue (got big boobs therefore big nipples) and because of that he thought that my risk of losing them would be slightly increased. Regarding getting bc in the remaining tissue he said was a possibility (somewhere around 7%) BUT it should be easily detectable, and if the worst came to the worst there would be no spread as can\'t spread through implant. I would like to keep them for some sort of normality, going to be shock enough waking up with scars and B cups (I am an E cup currently) and to have no nipples too, not sure if that would freak me out.

Don\'t feel guilty, I feel the same, whilst it will be a relief to get rid for preventative reasons I also want to maintain good boobs, I have great ones now (even if I do say so myself !) I want to look good and I have felt bad about it, but even so I am only human (not to mention single) so it is a really big thing for me.

Make sure you get on the other site and get involved, there are so many of us similar area and similar age - It is great and has helped me no end. We all have different opinions on things and want to make different choices but at the end of the day we all share the common goal. Preventing BC and OC.

Take care and speak soon
L xxx

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Re: Should I have preventative surgery?

Nipples or No Nipples?, Hi Girls,

Thanks for the warm welcome and the information about the other site - it will check it out.

I feel lucky to have found you girls and just at the right time for me. I had been busy scaring myself silly by reading up on the various types of re-constructive surgery and all the associated risks. It has really helped to read about your experiences and hear real information about what happens when and what is actually available to us.

Marie – I also thought that you had to have the BRCA1 or BRCA2 gene to be able to have the risk-reducing surgery, but I don’t think you do if you have a relatively high risk factor. I was patiently waiting to qualify for the gene test, when I found a lump and it scared me enough to look into things in more detail. I think that it might be different depending on where you live, some areas may have different guidelines.

Lisa – Do you really think that Becky doesn’t mind people calling her? She must be inundated! In the documentary, she seemed to have such a positive attitude throughout it all, I admire her courage.

Annieanne – Glad your genetics appointment went well. I have always found everyone so helpful ay Nightingales. They are excellent at explaining complex things in a way that even I can understand and have endless patience when answering my gazillions of questions!

I rushed out and bought Cosmo and WOW doesn\'t Becky look great? All the reconstruction photographs that I had seen up until then did not look wonderful and I was really worried about how I might look afterwards. I am actually quite excited now at the thought of possibly having a cleavage again!

I always feel guilty when I worry about the cosmetic results. I feel like I ought to be grateful that this option might be open to me and should just be happy to get what I’m given! Although I am not fond of my own nipples, I really want to keep them if I can. This is mainly because I think that they will look more like my original breasts (which are far from perfect, but familiar now). From what I have read, surgeons are not normally keen on this method as it doesn’t enable them to remove as much of the breast tissue as they would like. Does anybody know what your risk increases by if you keep your own nipples?

I would love to join your get together and will suss out the other site for the details. I am so surprised at how many of us there are in such a relatively small area. It would be great to meet in person.

Looking forward to chatting with you all.

Saire

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Re: Should I have preventative surgery?

Great news annie - posted a full reply on the other site

L xx

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Re: Should I have preventative surgery?

Hi Marie I am not sure re genetic testing if you have no living relatives someone else will be able to help....

They will work out your risk factors from your family history and then decide from there.

Not sure where you are based, see my earlier thread to Saire with details of the other website, join that too, as it can be more private and you will find details of our proposed get together !!

Speak soon
Lisa xx

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Re: Should I have preventative surgery?

Welcome Saire ! Saire

Welcome....

I am sure you will have read my story, I rang the breast cancer genetics phone number and spoke to Becky\'s mum Wendy, who gave me her mobile number. When I spoke to Becky she was great, and wasn\'t bothered about me passing her number on.

Us Manchester (and the north) \"mutant\" girls are arranging a get together so feel free to join in with that, (details posted on the other site) there are other ladies who have/are thinking of preventative surgery without knowing if they have the gene fault over there too. I think I should be on commission for the other site !

If you join the \" other\" site http://phpbbserver.com/breastcancer there is a private mail facility and email facility on there so I would be able to pass her number on for you. It is also a more secure site so we can post more freely. You will see more info re mine and Bev\'s appt with Mr B on there too.

Speak soon
Lisa xx

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Re: Should I have preventative surgery?

Hi Saire

Welcome to the site, I myself am fairly new here too.

I know exactly how you feel, this site really helps as no one understands unless it has happened to you.

I lost my mum when i was 8, she was diagnosed with bc when she was just 34 and died 3 years later. I remember her suffering so clearly, my Dad looked after her at home and it seems like only yesterday. Now i have reached 34, everyday i worry so much, especially as i have 3 children.

I am waiting to see a genetics doctor to see if i can be tested for the gene fault but im not sure if it will be possible as i have no other living relatives that could be tested.

You say you qualify for preventative surgery on the NHS? Can you have this even if you havent been tested for the gene?

Take care

Marie

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Re: Should I have preventative surgery?

New Girl Hi Girls,

I hope you don\'t mind me butting in. I have just read your posts and my head has nearly fallen off with all the nodding in recognition of the dilemmas that you are facing and the emotions that you are feeling. It feels like I could have written them myself and it is such a comfort to realise that other people are struggling with the same decisions as me.

I will try to give you a very brief summary of me, you may think that you have read it before somewhere! My mum was diagnosed with breast cancer aged 39. She had a mastectomy and reconstruction (very early version over 20 years ago now). The cancer returned in her neck and eventually her lungs and sadly she passed away almost 6 years ago now. I still miss her terribly, especially since I had my own daughter who is now 3 years old.

A couple of months ago I found a lump in my breast. I will be 36 this month and was all too aware that I was fast approaching the age that my mum was when she got bc. All I could think of was my 3 year old daughter and how it would affect her. I made mental lists of all the things that I would need to do, the most ridiculous of which involved teaching her daddy how to plait her hair!! Fortunately I was one of the very lucky ones and the lump was benign.

My life-time risk has been assesed as 1:4 and I have recently learnt that I would qualify for risk reducing surgery under the NHS. I am detemined to take control of my life before bc tries to take control of me. I feel that my breasts are a small price to pay for peace of mind and a chance to see my daughter grow up.

I have an appintment to see Mr Baildam in a couple of weeks and am hoping that he can help me make some decisions. The lovely Jean at Nightingales told me about this forum and it has been wonderful to realise that I am not alone in having to make these difficult choices.

I\'ve found that many of my friends think that the risk-reducing surgery is a rather drastic step, but most of them haven\'t watched someone close to them fight cancer. I can\'t expect them to understand what it is like to feel like you have two ticking time bombs strapped to your chest!

I am very interested to know how you got to speak to Becky Measures. I watched her documentary a few months ago and would love to know more about her experience.

Just wanted to say hello and thank you for making me feel less alone.

Saire

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Re: Should I have preventative surgery?

Brac 1 positive discovered after BC treatment I am posting this on behalf of new user Sue

Moderator
Breast Cancer Care

I was diagnosed 2002 masctectomy chemo , radiotherapy, tamoxifin for 3 years and now femara since last January, Three years ago I agreed to a blood sample being tested looking for a faulty gene this came back this June and now I am being offered Ovary removal and to have the other breast removed in case the gene activates again. I am 54. I have read lots of threads were people have the gene test then preventative surgery but would love to hear is there anyone been in my position and what did they do about further surgery.

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Re: Should I have preventative surgery?

Hi Annie

Glad you had a good holiday.

Saw Mr Baildam last week and it went well, will leave Bev to tell you about her experiences.

I think you will find the other site useful, it is easy once you get in and get going and there is the private message option which is great.

I spoke to Becky on the phone before my appt with Andy and she
was very helpful, got cosmo too and carry the article with me to show people !

My appt was approx 30 mins too, didn\'t get to see any pictures though, need to make an appt with the bcn for that, I must do that tomorrow. Anyway he didn\'t really discuss options apart from expanders and implants and when he examined me said I didn\'t have enough flesh for any of th other procedures. He said he wouldn\'t be able to get me anywhere near the size I am now (34e) and said max would be c/d he also said the scars would be like breast reduction. I think you said yours would be different to that ? I
wonder why ?

I think I am pretty much decided on keeping my nipples but not totally
100% sure yet.

Tips re prof evans, well I haven\'t seen him for years, I see Fiona Lalloo now for some reason, my appt was ok, I just get a bit sick of the counselling after my decisions were made. I know it is a process but I don\'t like it. Penny was very nice, but again I hate being analysed - spoilt child syndrome I am afraid !

Not sure how feasible it is going to be for a get together, I think the majority of us are approx an hour from Manchester, and work during the week, where exactly are you ? I will see if I can get any of my appointments around yours.

You should be having your appointment around the same time as us then Bev\'s date is the week after mine. He did offer me 21st December but I declined !

Anyway get on the other site !
Speak soon
Lisa xxxx

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Re: Should I have preventative surgery?

other site http://www.phpbbserver.com/breastcancer/
(my user name is the same)
Has a genetic area and you can send private messages too, get signed up it is good too.

Thanks for your detail re your appt, sounds like it went well. Did you feel better for seeing him ? How long were you with him ? Did he examine you and measure you ? Did he suggest what surgery would be best for you ? Questions questions - sorry !

I can\'t wait for my appt. I live about an hour from Manchester, so let us know when all you appts are and hopefully we can meet up. Prob easier to do through the other site.

I have seen the psycologist already so am hoping that I may only need to see the surgeon once. Fingers crossed. I have to see Dr Lalloo, (not sure why I don\'t see Prof Evans anymore) next Friday, then just have my appt 26th Sept. Sure we can sort something out though. Obviously you live some distance away but where exactly ?

Hope you enjoy your holidays.
Speak soon
Lisa xx

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Re: Should I have preventative surgery?

Hey all

Thanks for posting about your appointment with Mr B, Anne - really helpful. You must be so relieved to have seen him and he\'s confirmed for definite he will operate on you. How long did you get to chat to him for? That\'s really hopeful to hear he said skin and nipple sparing would be ok and the scars wouldn\'t be too bad - even for people with babylons of our size!!! Really pleased it went well.

Thanks everyone for your thoughts / posts re my mum. Anne - I had tears in my eyes reading your post. I\'m so sorry you\'ve lost your mum too. There\'s no adequate words to express how you feel is there? Big hug back.

Lisa - I\'ve emailed you - it\'s war and peace!!!! You might be there a few hours! Your appointment is on the 26th too? I thought it was the 25th. Mine is at 10.45 am. If yours is at 10.30 am then we\'ll definitely see each other. OH MY GOD - how super!!! I hope we get more than fifteen minutes to chat to Mr B though! I think on that basis, he ought to do our ops on the same day too - then we can share a ward! You too Anne - and anyone else for that matter!

Justine - yes, I\'m sure we\'ve spoke on the other site, now. Where are you getting your treatment? Are you waiting to find out if the gene is in your family?

I\'m going on holiday on Saturday for a week, so won\'t be posting for a while - take care everyone.

Bev.
xxx

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Re: Should I have preventative surgery?

Hi Bev & Lisa
Yes I am on the \"other site\", so I\'m sure I\'ve chatted to you on there. My picture is a very sexy lady in a red dress 😄 (animation unfortunately :D).

Lisa, only a certain percentage was tested and mum\'s blood test came back negative. They are pretty sure ours is genetic though. My great-grandmother (who they think the gene came from) died at 43 from bowel cancer. I am definitely going to go down the path of preventative surgery if no gene is identified. I want to be here for my children.

Bev, I\'m thinking of you today, and hope your day isn\'t too bad.

big hugs
love
Justine
xx

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Re: Should I have preventative surgery?

For Bev Posted on the other site too.....

Looks like will be meeting up sooner than we thought ! How exciting !

Will see you in the waiting room - my appt is 26th at 10.30 ! !!! I have to hang around for mamm at 1.00, so we can compare notes afterwards if you like !

I will reply to your email, mine might have gone in your trash as yours to me did !?

L xx

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Re: Should I have preventative surgery?

Hi Justine

Hope you are ok.

My youngest family member was 33, I am 32, which is why I suppose I am doing it now !

It must be so difficult for you, without the fault having been identified, but there is certainly a strong history there. It is amazing that they haven\'t found anything, is that because of the % thing ?

Decisions decisions !
Take care
Lisa xx

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Re: Should I have preventative surgery?

Hi Justine

Are you the same Justine on the \"other\" site? I can\'t tell from your post?

If so - hello!!!! If not -hello and welcome!!! Either way, really sorry you have lost your sisters - it\'s so tough losing someone isn\'t it? It\'s the first year anniversary of my mum\'s death today. It wasn\'t as bad as I thought it was going to be - but I think about her everyday and miss her everyday.

Before the gene mutation was found in our family, I was thinking of having preventative surgery anyway - I don\'t think it\'s that uncommon actually.

Take care.

Bev.
xxx

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Re: Should I have preventative surgery?

Hi Lisa

Haven\'t got your email - I\'ve emailed you an alternative email addresss, so hopefully that will get to you.

Yes, I googled Mr B too!!!! Ah, bless Jean - the whole service is fantastic. Have you seen Dr Penny Hopwood for psychology? She was really lovely too.

I\'ve posted this on the other site too, but I managed to get my appointment altered to 26th September - how fantastic is that? When is yours again?

I\'m sure we should all meet up (if people want to) - I know I would love to - it would be amazing to meet others going through the same thing!

Bev.
x

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Re: Should I have preventative surgery?

Just wanted to say hi to all you girls on here.

I am considering preventative surgery sometime within the next nine years or so. My mum was diagnosed 3 years ago with dcis aged 52, and has lost 2 sisters to bc aged 46 & 49. My youngest aunt was diagnosed at 40 so I know as I get nearer to that age my risk factor increases even more ( I am 31 now). Mum has been tested for brca1&2 but no fault has yet been found. Because no-one had ovarian cancer in our family I will not be eligible for routine screening for that. I do get very nervous because I have (very lumpy breasts) as the doctors have told me, so think finding a definite lump would be unlikely. I start screening at 35. We also have bowel & prostate cancer in the family.

take care
love
Justine
x

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Re: Should I have preventative surgery?

This is becoming a habit ! I have resent my original email to you so hopefully you will have it, when you get home.

So many questions, my head is buzzing with it all. It is funny that there are a few of us in so the same situation waiting to see Mr B. It would be funny if we all got our op\'s at a similar time. Wonder how hard it would be for us all to meet up sometime. Maybe something we could look to do through the other site anyway.

I was talking to Jean this morning, bless her she has squeezed me in for a mammogram the same day I see him (I was supposed to have one the week earlier) saves me going back twice, she is so helpful and lovely. She really was singing his praises, saying I couldn\'t be in any better hands. I have googled him tonight, too, he does a lot of campaigning and developing pioneering procedures so makes me feel better.

Anyway speak soon no doubt !
Take care
lisa xx

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Re: Should I have preventative surgery?

Hi again Lisa!!!

Yes, I\'ve posted on the other site - there was something wrong with my email address on my profile, so if you can, can you now resend the email, as I\'ve amended my address so all should be ok now (though I\'m away with work for a few days, so won\'t be able to access my personal account).

Yeah, I thought about trying to lose weight too, but I think to make a real difference, I\'d have to lose stones as with me, breast weight is usually the last place to go for some reason. I could certainly afford to lose a stone or 2 (I\'m a size 12/14 on the bottom) but it would probably not that make that much difference.

Like you, I\'ve always wanted smaller breasts, but I think I wouldn\'t go smaller than a D if I had my perfect choice. It\'s just not me to have small breasts. The positives will be being able to choose different clothes - I can\'t wait for that!

From what I can understand about the nipple thing, is that if you attempt to keep them and then they die, it is harder to reconstruct one later.

I\'ll look out for your email soon - take care.

Bev.
xxx

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Re: Should I have preventative surgery?

Hi Anne

Wow - I\'m so pleased your PCT is going to refer you to Manchester -that\'s great news. It\'s one less worry to have isn\'t it? Have you made a private appt with Mr B so you can get your questions answered in the meantime? Yeah, Jean\'s a star isn\'t she?

My psychology appointment was really interesting - I\'d been dead set on keeping my nipples and she made me think a different way. I\'m not so sure that\'s the most important thing for me anymore. And nipple recon can give some fantastic results from what I\'ve seen so far. I\'m just struggling to get my head around whether to go for tissue expanders or flap surgery. It\'s be really interesting to hear about yours and Lisa\'s appointments, as like you two, I\'m large breasted and I\'m chomping at the bit to find out if subcuteneous mastectomies are available for our size breasts. And if not, where would the scars be?

I think, in an attempt to answer your question, that if you had a subcut mast, then your skin would shrink back quite a bit and they\'d put the expander impant under the muscle with a small amount of saline in it, ie. an A or B cup and then over time, fill you up with saline till you\'re the size you want. My sister met Becky Measures recently and she\'s a D and apparently they look amazing. But she was small (ish) to begin with so she has very little scars as no skin was removed.

Keep us posted on how you get on - really looking forward to hearing.

Bev.
xx

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Re: Should I have preventative surgery?

Hi Hi Annie,

yes things are certainly moving on for me ! Positive result so on with the next stage !

I too am confused about size and nipples, interesting that you say that the manchester procedure is different in that they scrape (ouch) the nipples. I would like to be smaller (34e) and would like I think to be a d cup. I would like to keep my nipples but not at a big risk, so will see what they say.

Will you let me know how you get on when you have seen Mr B, I think I will see his registrar but I am not sure yet I didn\'t ask. Are you seeing him this week ?

Good luck anyway and keep in touch. I am amazed at how many girls in our position are going through this, so it does really help me to chat on here and the other site.

Take Care
Lisa xx

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Re: Should I have preventative surgery?

Hi Again Bev,

Think we need to get a private chat going ! Otherwise both these sites are going to be the Bev and Lisa Show !

I was a bit worried about size, I am size 10-12, but my breast size is 34e - If I lost a stone I would still be dd though and I can\'t lose any more than a stone.

I have always wanted smaller boobs so am seeing this as a chance to get what I want out of it aswell as the obvious preventative measures, I haven\'t been told that there will be a problem in making them smaller using the implant method, they would just take some of the skin away when they do the recon ? I suppose I won\'t know more until my appointment with Mr B. I am hoping for a D cup. Not sure about keeping nipples or not yet, want to know the risk factors first, although might be nice to have a new pair of those too !

Anyway, speak soon
L xx

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Re: Should I have preventative surgery?

Hi Anne Hi Anne - how\'s it all going? I think the reason skin sparing mastectomies with reconstruction using tissue expander implants are supposedly better on smaller breasts is because there\'s less scarring involved as there\'s no need to remove any skin as they can build you back up to your normal (or slightly larger) size. Women with large breasts (I range from a 36E to a 36G depending on where I get my bras) cannot usually be built back up to their normal size by tissue expander implants alone. I think you\'d have to have tissue from elsewhere too. My sister met Becky Measures recently and apparently she\'s gone up to a D cup and that\'s as far as she can go. But she was a B I think to begin with. My sister is a 38C/D I think and she\'s been advised to lose weight if she wants the same surgery as Becky, so the skin on her breasts shrinks as she goes down in size. So, she\'s having a go at that and then going back for a further surgical appointment later in the year.

I think my skin on my breasts is beyond shrinking though, since I\'ve had my son, so don\'t think it\'s an option for me.

Are you going to ask your GP to refer you for ovarian screening? Is there any ovarian cancer history in your family?

Bev.
xxx

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Re: Should I have preventative surgery?

Hey Anne Hey Anne - So sorry I haven\'t replied sooner - I\'ve been struggling to find the time to switch the computer on, let alone post!!

Jean\'s full name is Jean Edney - you can contact her on 0161 611 4223 or email her on Jean.Edney-at-smuht.nwest.nhs.uk. Not sure if you\'ve already contacted them or not. How\'s everything going?

My psychology appointment is at the end of this month (to assess if I\'m fit for surgery) and I have my first consultation with Andrew Baildam sometime in September. My twin had her surgical consultation this week however (although with his registrar). Apparently the registrar tried to convince her not to have subcutaneous mastectomies. She said he seemed really keen to persuade her otherwise but didn\'t really substantiate it with anything other than the usual risks. Anyway, she\'s sticking by her guns but she\'s got some weight to lose (as have I) before he\'ll do the surgery as it works better on smaller breasts and we are quite large.

I saw Prof Evans, the geneticist, last week. He was so great - he explained things to me in a way that Sheffield never did. Like exactly what\'s wrong with our particular gene mutation, ie. a missing chapter, not just a spelling mistake. And he also went into a lot of detail around risk management and the ovarian issue also. I didn\'t realise that it\'s recommended to have a full hysterectomy if you want the option of taking HRT later for example. It was fascinating and he\'s sent me a two page letter detailing it all.

Anyway, let me know where you are with things - sorry for not posting sooner.

Take care.

Bev.
xxx

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Re: Should I have preventative surgery?

quick question answered Hi Anne,
Sorry for the delay in getting back to you, have just come back from a lovely 2 week holiday in the sun, feel all refreshed now (till Monday morning, when I start back to work again...lol)
In answer to your questions, at first I had the saline injections every 2 weeks, then it was reduced to every 4 weeks, and now I am at the size I like (i think) I do not need to go back for 2 months, the injections vary as to how you feel comfortable with the amount that is being put in, the first day feels a bit uncomfortable but that soon passes. I do not need to have replacement permanent silicone implants, as I have been told that the becker implants I have should last me a lifetime.
Hope this answers you questions, any more dont hesitate to ask.
Sandra xx

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Re: Should I have preventative surgery?

Hi Anne,

Hope you are ok, went for my blood to be taken today, so feeling anxious about the results, going to try and forget about it until the day of reckoning ! 21st August ! 1.30pm !

The Manchester team are fab, although I imagine that other area\'s are just as good. I will be seeing Andy Baildon if I need to, apparently his waiting list is 8-12 weeks, I was told today.

The site is extremely useful and I have really learnt a lot from it, looks like it is helping you too.

Keep in touch and keep posting, the more info you have the better.!

L xxx

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Re: Should I have preventative surgery?

re manchester referral Hi Anne -

Contact details for Manchester Family History Clinic / Genetics Service can be found at

http://www.smuht.nwest.nhs.uk/az/showentry.asp?id=586

Give Jean a call and I\'m sure she\'\'l be helpful.

I went to Manchester because I live in North Wales and they don\'t do the surgery locally. I was referred both by the local clinical genetics service and by my GP; it took about five months to be seen for the first appointment with Mr B, which was Sept 2005, and had several appointments with him, their genetics dept, breast care nurse and psychologist between then and op in April. Its a good centre; they\'ve done lots of mastectomies and recons, and there\'s choice of methods available either from Mr B or one of his colleagues if you opt for TRAM / DIEP methods.

Door-to-door travel time to where I live to the various different hopsital sites that I attended was 60-80 mins - time-consuming but fine for pre-op outpatient visits, but difficult for friends / family to visit me as an inpatient and for immediate post-op follow-up (I needed seroma drained on my back for several weeks after discharge) and subsequent clinic visits. Obviously this depends on the type of surgery, and on how you get on generally, but if you go for implants I would think you\'d be going back there fairly frequently for the expansion injections. So do think about the time / cost / discomfort aspects of going further afield from your local area.

[A great tip from suefab was to make sure had pillows in the car for me trip home from hospital - I had one behind me to cushion the back scars, and one in front of me to protect my new boobs from the seat belt - well worth remembering! That said, it was uncomfortable, rather than painful, and may well be somethng that you feel is preferable to going locally.]

Also, you might find the following site worth looking at:

http://www.optionsforbreastreconstruction.com/

It provides lots of info about the various different techniques, and goes through the pros and cons for each. I though it was quite helpful when I was thinking about what I\'d have done.

With best wishes -

tigger

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Re: Should I have preventative surgery?

Hi Anne,

Hope you are feeling better.

I too am 32, my mum had breast cancer too when I was 25 and she was 52, fortunately hers was caught very early and touch wood has been fine ever since (fingers crossed). Due to family history, she had a genetic test and after two years we were told that a fault had been found. (BRAC2) The test being there for whenever I wanted it. I blocked it out of my head until I was 30, I thought by that time I would be married, maybe with children and be in a better position to decide what I wanted to do, I had been told to have children as soon as possible. That was un realistic for me and still is, having not met my prince ! When I was 30 and went for my first mammogram and breast check, I thought I should start to consider things. So for the last two years I have been soul searching, in the meantime a close friend has had cancer (not bc) which made me think I don\'t want to go through it if there is another way. I saw my genetic counsellor in January and decided I wanted to start the process, initially waiting to see the surgeon first before the test. Since I saw the psycologist I changed my mind. I am going for my blood test tomorrow, and should get the results in 3-4 weeks, should the test be positive, I will have 85% chance of BC - Scary ! If positive (and I have convinced myself it is) I will definately be having surgery and recon as soon as is possible. I am in the Manchester area and will be seeing Andy Baildon too, and probably will opt for expanders and implants if possible (as per Becky) Anyway thought I would share my story with you and hopefully let you know that you aren\'t going through it alone, and if you want to chat feel free to drop me a line.

Don\'t worry about the questions, it is important that you ask as many as you need to and get all the information you need. The best info I have had, has been through this site and from the team in Manchester.

Keep in touch
L xx

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Re: Should I have preventative surgery?

slow down woman! Hi Annieanne

Sorry to read about the difficult time you had nursing your Mum.

Like you I had my risk of breast cancer calculated, based on family history and personal factors, and it came out about the same as yours. Although I\'ve known this for many years, it\'s only recenty (since I looked after my brother through terminal cancer) that it really bothered me a lot, and I wanted to \'prevent\' breast cancer rather than \'pick it up early\'. I was referred to Manchester (Mr Baildam!) in September last year and had bilateral mastectomies with LD reconstruction in April (three months ago yesterday!)

My mental health has improved a million-fold since the op; I hadn\'t fully appreciated how much space in my head all the worrying about BC was taking until it didn\'t need to be there any more ( yes, I know its not 100% but it feels SO much better than 40%). I opted to have my nipples removed, as I felt I wanted as much breast tissue gone as possible. Plus as I had F-cup size before, there was enough skin around not to need a skin flap. I\'ll have areola tattooing at some point in the future, but don\'t think I\'ll bother with nipple reconstruction.

There\'s a lot to think about, and no right or wrong answers. I\'m sure it will help you once you meet up with your Breast Care nurse, particularly if you can talk to someone whose had it done. The various operation types mean that there are some different after-effects in looks / feelings, but I think the overall experience is similar, so even if you can\'t meet with someone who has had exactly the same op as you want, it should still be very reassuring.

As for perhaps going privately - please don\'t rush this decision. I can understand your reluctance to return to an environment that brings back so many difficult memories, but there\'s a lot to be said for \'staying in the system\' - provided it doesn\'t mean waiting forever, of course! Have you thought about visiting the ward, maybe with your Breast Nurse, to talk to staff about your anxieties? If they know the particular emotional difficulties that being nursed on the ward brings for you, they may be able to make your stay much more bearable. I visited the ward where I was to be admitted, and blubbed a lot - there was nothing specific to the ward, but I just hate being a inpatient . It helped me to do this, although I don\'t really think the staff understood quite where I was coming from - they thought I was worried about the op, whereas I was worried about living in a ward environment and not having any control over my life.... but it may well be worth a try - they all seemed to bend over backwards with the reassurance. That said, I fully agree that your mental health is worth protecting, and if you really can\'t face the place, and going somewhere else is an option, then go for it.

I wish you all the best in your decision-making. One step at a time, and you\'ll get through all that needs to be got through.

Take care

tigger

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Re: Should I have preventative surgery?

Hi Anne Hi Anne

Thanks re mum - it\'s still early days, but we\'re getting there.

I\'m a twin and we\'ve both been diagnosed with the BRCA1 mutation. However, my sister lives in the catchment area for the same surgeon as Becky Measures and has had all her genetics testing by the same people and has now been referred to the surgeon and psychology before going on the waiting list for exactly the same op.

However, I live in a different catchment area (yorkshire), so at first, it looked as though my only option was to go for whatever I was offered. But I told my genetics team and GP that I didn\'t think it was fair that me and my sister (and for that matter anyone) should be given different treatment due to postcode. It\'s not just the surgery, it\'s the screening options too. You can pay £60 and have a breast MRI (which my sis has now done and they arranged it very very quickly - a couple of weeks). They offer 4 monthly ovarian screening and did a baseline mammo on my sis, whereas my hospital won\'t consider it and do yearly ovarian screening. That\'s before I even start on the surgical options. I don\'t want my surgery to be about what my surgeon is capable of, it should be about what\'s best for me, given my physical situation and personal choice. I\'m digressing...

Anyway, I\'ve persuaded my genetics clinic to refer me to Manchester instead of Sheffield. Manchester (who have been amazing by the way - Jean the patient co-ordinator is absolutely fantastic and will bend over backwards to get out of area patients in) have so far accepted the referral and made me an appointment with the geneticist, which is later this month. Once he\'s seen me, he\'ll refer me to the surgeon and psychologist and then I\'ll be where my sister is now on her pathway. I\'m about a month or two behind. The only stopping point will be if my PCT refuse to fund the treatment. However, since my geneticist has already made the referral, I\'m kind of seeing that as a \"purchase\", so hopefully it\'s a done deal. We\'ll see - I\'ll keep quiet until I\'m told otherwise.

There is a big NHS patient choice agenda - choose and book. So you can choose any surgeon and / or hospital within a certain area. But outside that area, you would have to convince your GP or geneticist to refer you to a particular surgeon / team and then it\'s down to your PCT to fund. My GP told me that you have a clear business case if what your preferred centre is offering compared to your local treatment centre is, ie. increased ovarian screening, MRI\'s, better surgical options, then they will have trouble in turning you down.

I\'ll keep you posted on what happens at my appointment at the end of the month. If you want any more info on the Manchester centre, let me know and I\'ll email you Jean\'s telephone no.

Take care.

Bev.
xx

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Re: Should I have preventative surgery?

Hi Anne Hi Anne

It\'s just a quick reply - but I wanted to say to thoroughly explore your options if you do go down the surgical route. I\'ve recently been diagnosed with the BRCA1 mutation (although like you, was considering preventative surgery anyway, since I thought I\'d never be able to be tested. My mum died recently and we discovered she had the gene, so that\'s how I found out).

Anyway, I\'m currently going through discussions with my potential treatment team and there are so many types of breast mastectomy / recon ops you can have - including complete skin and nipple sparing, ie. hollowing out the inside only. This would not reduce your risk of cancer recurring back in the remaining breast cells as much as a full mastectomy (about 7% risk of recurrance is the current figure), but is an \"easier\" (supposedly) operation to have and for those people who really want to keep their own nipples and are happy to work with those risk figures, it\'s worth looking into.

I\'m only mentioning this as it\'s pioneering surgery and not all surgeons will offer it you, let alone mention it as an option - I\'m having to fight to get this surgery by another healthcare provider (although looks as though I\'m winning). When I had my first consult with my original surgeon, she basically wouldn\'t even entertain keeping my nipples, and was very dismissive and said it couldn\'t be done as my breasts are too large. Which is not true -well, they are large, but it still can be done, just with scars similar to a breast reduction.

Anyway, I just thought I\'d mention it, since this type of surgery rarely gets a mention and it\'s good to throw it into the mix!

Keep us posted on your progress.
Bev.
x

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Re: Should I have preventative surgery?

Hi Anne No I dont think that you are rambling at all, all these questions that need answering for such a serious thing to do I really wish that I could have spoken to someone in the same position as me before I had my preventative surgery, and I will try and help anyone I can.

I did not have reconstruction at the same time, because I just wanted rid of my \'boobs\' but looking back on it now I wish that I had, 2 1/2 years later, I decided that I could no longer live with the prostectics because I found them really hot and heavy especially in the summer, so after I had been on holiday last year, I decided to go for reconstruction (i was told at the time of surgery that I could go back anytime I wanted for reconstruction although I had been dead set againts it) I wrote to my consultant, and he said I was the last person he expected to hear from saying I wanted it done. The only reconstruction that I could have was becker implants, filled with saline, this involved having the operation, and the implants being put in and a valve being inserted that had a tube attached that fits under your skin the implants were slightly inflated with around 60mls of saline in each side, and then over a period of weeks, more saline is put in via the valve, this has to be done like this to allow your skin to stretch, its quite amazing really, I must admit slightly painfull at first, but now I am very happy with the results, (have now last week finished with being inflated) and have a bigger pair of \'boobs\' and people that dont know me done know any different, it has given me back my confidence, but I would say to you think long and hard about having reconstruction immediately, as there are more options available for you, as I had left it so long I could only go down this route.

You should ask the breast care nurse when you go to the hospital to show you some pictures of reconstruction, or the consultant they should be able to show you quite a few.

I know what you mean about feeling like you have / had breast cancer, I know that feeling only to well, but I can honestly say that since I have had preventative surgery, the fear has gone, my consultant told me that I had less chance than any average woman of getting breast cancer now, which to me is what I wanted to hear. I do feel more in control now that I have had it done, and will feel even better once I have had my ovaries removed, then I will go for the genes test, so that if this comes back positive then I know that I have had all the preventative surgery that I could.

I can assure you that I also went round in circles, before I came to my decision, but for me it has been the best thing that I could have done, I am fortunate that my 3 daughters are now 16,17 and 20 so I have had my family, and I also wanted to be here for their weddings etc...

See who\'s rambling now......

I dont mind how many questions you need to ask, I will always try and help you with as much information as I can, I know from experience that this is a scary road to go down, and I just wished that I had had someone to answer my questions so I will gladly help anyone I can.

Sandra xx

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Re: Should I have preventative surgery?

i do not have the extensive fmily history history that you have but i too watched and nursed my mumthrough 5 ops and then fianlly to the end which in a way was arelief for her, but i have no other rels with the disease so am ot considered high risk i have an apppointment on wed as have a lump but still had to wait 13 weeks but i too feel that if in fac ti know i have made the decison that if they say yes it is i want both off and if it is neg i wan tmy options explained cause still dont know if at my age with kids to raise want a ticking time bomb,

hope you get the help you nee good luck

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Re: Should I have preventative surgery?

) I too have a strong family history of breast cancer, my Mum died when she was 43 (and I was 9) with breast cancer, my eldest sister also at the age of 43 with breast cancer, and my next sister at 49 also with breast cancer. Although I was being screeened regularly from the age of 35 as I was fortunate enough to be on the ibis trials at the time, so I was able to have regular screening at a fairly young age, but that still did not stop all the worrying, so when my sister was diagnoised back in January 2002, and her cancer came back in march 2003, I decided that I would have preventative surgery, it was too much of a coincidence that my Mum and both sisters had breast cancer so I decided in September 2003 to have this done, and I can honestly say that I have not regretted it for one minute, because of the strong family history, I was able to have surgery straight away, and did not have the genes test, as I felt that I could not wait 2-3 years for the results, my sister had the genes test before she died, and just before christmas last year we were given the results that she had the brca1 gene. I to this day have still not had the test, and am now waiting to have my ovaries removed, before I have the test, as I feel that this would be my way of coping if I did have the gene, knowing that I have had all the preventative surgery that I could have had. My niece (my last sisters daughter that died had the test done and it came back negative, we are now waiting for my other niece (my eldest sisters daughter) test to come back on the 16th August. That said I have been told that if my result (when I do finally have the test done) come back negative than my own daughters will not have to worry (i also have an auntie and cousin who had breast and ovarian cancer) I personally think that you have to do what you feel is right for you,. I could not live with the constant worrying and checking, and to have to go though what my mum and sisters had to.
I feel that a hugh weight has been lifted off of my shoulders, and even if my genes test comes back negative, and although I have had surgery, I for one minute do not regret my decision as it was right for me at the time.
I hope this in some way helps,. and if I can help you any further please do not hesitate
Sandra

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Should I have preventative surgery?

Should I have preventative surgery?