How do you choose which form of reconstruction is right for you?

Rubiayat

Good luck to you too Ladybird and let me know what you decide!!

Ladybird-dancer

Dear Rubaiyat

I think fear of a large scar on your abdomen is NOT minor.  For me it's major!  

I went to my 1st "Support Meeting" at my local hospital for women who have/are thinking of having recon this week.  Very interesting talk by the top PS going into the detail of DIEP which here is called the "Gold Standard".  Quite gruesome with photos and vids but informative.  Afterwards 3 women who had had this done showed off their scars. One woman, 3 months, one 1 year and the third 3 years post op.  They were all delighted with their results.  I stood in shock, horror and amazement wondering if I was in another universe.  They all looked like the car-crash scenario I had imagined which I really can't face going down.  One thing it has decided me is that I am now NOT going to have a DIEP.  

The belly scar is eeeeeeeeeeeenormous!  The woman who was one year gone - her scar was still blackish purple and about a quarter of an inch wide.  I was horrified.  She said she's thinking about having a tattoo put over it.  Not for me.  Some women here have a fancy tattoo, fairies/flowers instead of a nipple.  Didn't seem to be much chance in saving the nipple anyway due to how high the PS has to go to connect the blood vessel.  And then there are the scars on the breast, several - both breasts if the other one is reduced.  Also, each BS / PS will have their own favourite technique.  Well worth asking.  

It has determined me that I am going to go for either Fat transfer - the world leader in this is American, Dr Khouri at the Miami Breast Center - or an implant with dermo-matrix.  He has an informative website and a book for sale. My intention is to look into maybe even coming to Miami, but I fear it will be all too expensive; I'm in the UK.  Early days.

Guess it also is very dependant on the size of breast.  I'm small; just about a 32A in the UK - don't know how you measure in USA.

Can also only say that I know someone who had her good breast reduced to suit the other breast - admittedly she only had a lumpectomy - but she is thrilled with the result....................however, if the three women above are anything to go by, that could ,mean anything!

I think it's also worth looking into Photo treatment - they're trialling it here.  If you don't know what I mean, I'll get the proper name next time, but basically it's an in situ procedure, as is the nano-knife I would have had last September had the ******* tumour not grown satellites.

All best wishes, 

Rubiayat

Thank you for sharing that ladybird as these past 48 hours I have been trying to come to terms with having a DIEP and am feeling quite anxious. I don't want that scar! Next time I see my PS I am going to go through my options again. I said he could do the TUG, but it would make a much smaller breast. If I am willing to do fat grafting over the next year, then maybe I could get to a B cup. That would be fine with me. So many things to weigh....another series of crappy choices on this breast cancer road!

I would be interested in learning more about the photo treatment. Thanks!!

Ladybird-dancer

Dear Rubiayat

You seem to be the first person who really understands where I'm coming from.  I couldn't agree more with you when you say: "these past 48 hours I have been trying to come to terms with having a DIEP and am feeling quite anxious. I don't want that scar!"  This is EXACTLY what I've been doing for the past couple of weeks.  Seeing those women in the flesh this week, standing in front of me, and sitting through the talk with the PS decided it for me.  I'm not having a DIEP.  My choice seems to be between fat transfer or implant with alloderm.

Why don't you look up the Miami Breast Centre?  You can send them an e-mail with any question you like - it's on the website http://www.miamibreastcenter.com/reconstruction/a...

Also, you seem to have had 3 lumpectomies - are you being threatened with full surgery?  Mx?  If not, then for me, fat grafting would be the way fwds I would have thought..............there are only a few PS that do this, so you'll have to search.  I spent hours on my computer yesterday looking for UK surgeons and got nowhere.  My local hosp has a guy who does it, but I didn't much like his attitude and I feel it really matters that you get on with your Docs.  I changed consultants after 2 and a half years and have found a lovely guy.  Pity the PS isn't anything quite as lovely!..............but he has the technique.

Sorry, but don't know what a TUG is.  Is it a flap from the bum or thighs???  Guess it depends on your body size/shape as well.

Photo Dynamic Therapy - PDT.  Try this link: http://www.royalfree.nhs.uk/default.aspx?top_nav_i...

A die is put into the tumour and then a light shone on the place where it shows up and the tumour is killed.  Simples!  Cheaper and easier than anything undertaken generally these days.

You could also look at nano-knife with the lovely Prof. Leen at the Princess Grace hospital in London  prof.ed.leen@gmail.com

A fantastic guy.  It would have cost me £16,000 - but worth it!  I was booked in - it only takes one overnight stay in hosp and then you walk out the next morning, cancer-free!  He zaps the tumour with 3,000 volts of electricity in situ and it dies.  I could have had it done - I was booked in for Sept 25th last year, but a week before, my tumour grew satellites and he couldn't do it.  If you have one lump, or perhaps 2 or 3 possibly, he can do it............he counted 9 satellites with me so it was no good, because I have small breasts and there would have been nothing left afterwards.

Hugs.................

Rubiayat

Ladybird - I do understand! Yesterday I had a mild anxiety attack at work thinking about all of this and still feel on the verge of tears at every moment. Somehow this all feels like too much to deal with and I am paralyzed with fear. Like you, I am afraid of what could go wrong and how I will look afterwards. After four surgeries (3 lumpectomies and one surgery to remove a fist-sized abscess from a  post-op infection) I think I have been traumatized. When I think of being cut open again I start to panic. And then there is the physical aftermath of the surgeries. I am 41 and I like my body the way it is. It is important to me to still feel good about the way I look - to feel sexy. I don't mean to imply that any woman is not beautiful because she has scars from surgery and true beauty comes from who you are inside. Right now, I am just having a hard time accepting how my body will change.

After three lumpectomies, PDT and the nano-knife aren't options for me. I don't know if they would have been in the first place as I had five foci of DCIS. At this point I could still chose to have radiation instead of a mastectomy and then do fat grafting to fill-in the depression in my breast. A few months ago that was the path I was on. Now my doctors are recommending a MX to be safe in part due to my age and the unknown genetic variation I have. Over the past six weeks I have come to terms with having a mastectomy - I don't want radiation or the worry of it coming back and going through all of this again. Although this week in the face of these reconstruction options I am starting to waver again. Urg!

I have heard great things about the Miami Breast Center - thanks for the recommendation. I just got into the UC San Francisco Breast Center, which I am very pleased with as they are top notch, in my insurance network, and only two hours from my home.

The TUG is a flap using tissue from the inner thigh and a small piece of muscle. Would this be an option for you? Maybe you would have enough fat if they took it from both thighs and then there would be the option of using fat grafting down the road to fill-in?

Sending you hugs too:)

jessica749

I have to agree with exbrxgrl at the top of this thread…I'm not so familiar with the various procedures, but I did have a BMX and have implants.  The PS I went to had an excellent reputation.  I trusted this surgeon.  I did not seek second opinions.

The PS I went to explained all the procedures to me, the pros and the cons. OF course, getting rid of some fat and keeping foreign objects out of my body was appealing. But he told me quite clearly, and it was also quite clear from his explanation of the pros and cons, that the other procedures were QUITE EXTENSIVE which just MULTIPLIES THE RISKS AND POSSIBILITIES for things to go wrong, either in surgery, or post surgery, or long term….

So, the PS was quite clear at the end of it with a recommendation for implants. Which, as a conservative gal at heart when it comes to surgery (even IF I did opt for a BMX when it wasn't 'medically necessary') I was happy for him to advise and tell me, and I was happy to follow that advice. Frankly, the fact that he wanted to do the least surgery possible, while still doing the BMX, made me even more confident in his judgment. I'd want a PS who TELLS ME what they think. But not someone who'd going to judge me if I make another decision…. (I actually got the feeling my PS wouldn't do any other surgery on me other than the implants!!!! i.e. felt strongly about what was appropriate…but never had to go there as I gratefully accepted his conservative recommendation). So seek second opinion with topnotch person even if you have to pay out of pocket I think it is worth it. (I.e. out of pocket in UK meaning Harley ST or whatever/wherever you can find someone who is highly reputable, and highly experienced doing reconstruction for breast cancer).

Ladybird-dancer

Dear Rubiayat

I am a little older than you, but I totally agree with the sexy body thing you so eloquently described.  I still have hopes of meeting Mr Right and anyway, I couldn't look at myself in the mirror and live with the kind of scars those women showed me last week.

Can I also suggest that you contact the following people and ask to be sent a copy of their latest dvd called The Promise, which they have brought out about Thermography versus Mamography?  info@safebreastscreening.org   or contact Phil Hughes  on  phphilhuges2@googlemail.com Actually it's his wife you want to contact, Rosa, she's much more down to earth than Phil but I'm not sure if I have an up to date e-mail address for her.  Rosa actually has several tumours in her breasts.  She has had these for I think 7 years and is fit and well and healthy.  The dvd costs £10 GBP which is about $18 US I think.  What is interesting in the video is that  there are many women who have dcis who do not need invasive procedures such as surgery.  Some Drs don't even consider dcis as cancer, simply as calcification.  Is yours invasive or in situ? Please have a look at this film, particularly the woman who was told to have a 2nd Mx, refused, had thermography, clearly no activity in the tumour and is alive and well now not having had any further surgery. It's really informative and therefore empowering. There are women patients and eminent Drs who speak in the film.  I gave a copy to my consultant for Xmas!  He said he found it a very compelling and said all sorts of encouraging things that are off record so I won't repeat them here!  Interestingly I get thermographed over here in the UK but the diagnosis is undertaken in USA: EMI Inc., 2030 W. First St., Suite E, Fort Myers, Florida 33901.  admin@emiinterp.com   They use a team of 16 Drs to interpret the photos.  It says in the dvd box that if you feel you have been over diagnosed and unnecessarily treated please visit thepromisefilm.net and then there is the sign for Facebook.  I don't do Facebook 'cos I don't really understand how it works, but you might!

I can't write everything I would like to say to you face to face, I'd be writing a full length novel!!!

Once anyone puts a knife into you, it's poss going to trigger more spread of cancer - that is one major reason I have put it off so far.  

At one point I too had come to terms with having Mx, but I'm still wavering.  So far I'm fine.  Are you doing anything to help your body vis a vis diet and supps etc?  

It is so awful, I can only agree with you.  Urg is a good word.  ;-) Have you had the test to tell how quickly your tumour is growing?  Easy test from biopsy material that your Doc should already have in his lab.  I think it'd called a Ki 67 test (prounounced "key" 67)

I think it is so important to be happy with one's Dr.  I went to one of the many CAM conferences I attend where the speaker said "You should be in love with your Dr".  The two Docs I like and trust I could easily fall in love with!!!  One is my new consultant since November and the other is a Rudolf Steiner trained Dr in Scotland I go to for Mistletoe treatment.  Gosh!  He's just so lovely, they both are, they both care and they're not pushing me one way or another.  It was the PS who said I MUST have the Mx.  No room for patient choice there!

Try not to panic - you may have more time on your hands to make decisions than you realise.  

All best wishes..................

Ladybird-dancer

Dear Jessica

Thanks so much for your post.  When you wrote "exbrxgrl at the top of this thread" did you mean me or someone else I've missed???  I couldn't agree with you more when you say that one really must trust one's surgeon.  I trust my BS it's the PS I didn't take to.  I also agree that altho' fat transfer sounds interesting, I'm not sure if I have the stamina for it - as you say, it takes a long time.........up to and poss beyond 2 years here.  Thanks for passing on his comments, they are certainly worth considering and valid.

I also take heed of your comment: "the least surgery possible, while still doing the BMX, made me even more confident in his judgment."

Implants will of course need changing every ten years, so more surgery later in life, and what about the idea of a foreign body in your body?  Rejection etc?  Was your PS not worried about that? ...............and of course the big question: how do they look and feel?  Are you happy with them?

Yes, I am going to contact the head office of the British Association of PS tomorrow to ask for a list of surgeons.

Thank you so so much for your input.  Really helpful :-)

Rubiayat

It is hard to write everything you want to say! It seems we are like minded in many areas here Ladybird. I am very interested in thermography and intend to look into as a long-term screening tool to rotate with mammograms. I have wondered if a MX is overkill in my situation. But I did have IDC (although small) with DCIS and my Oncotype score was 28. Some of my DCIS was not seen on a mammogram, which makes me wonder if there is more there that has not been detected. And because I had IDC, I know that my DCIS most likely will turn invasive. Also I had BRAC2 mutation of unknown significance. All of this combined with my age and having a young child has led me to believe that a MX is the right path.

I am taking lots of supplements and trying to optimize my diet - still challenged there though as I'm not quite sure what that should be:) I see a naturopath as well and have been doing vitamin C IVs. We talked about mistletoe too. My daughter goes to a Waldorf school, so I am very familiar with Rudolf Steiner. He was a great man that gave so much to the world!

Thanks for you encouraging words. I do have time to figure this all out. At some point I will just have to make a decision and move forward. Wishing you all the best too!

Ladybird-dancer

Dear Rubiayat

I think the idea of no rush is a good one.  I see now that you have complications with the Invasive DC and I can't comment on your BRAC2 results.  I have invasive lobular. My BS will only start to lean on me to take surgical action if and when my tumour starts to grow.  For now and the next 18 - 24 months, he's happy to leave me as I am.  I am already 3 yrs past my diagnosis date so all the mad pressure one is immediately put under at hosp on diagnosis to get the knives out is a load of baloney - certainly it was for me anyway.  It turned out that my Ki 67 score was 5 out of 100 i.e. very slow growing - but I never knew that for two and a half years until I changed hosps.

Not sure if oncotype is the same as Ki 67.  I don't think it is.  The Ki 67 is well worth looking into.  In my new hospital they do this as a standard practice - they already have the tissue, so it doesn't require you to do anything or have anything done to you.  Please give thermography a go and get hold of that dvd.  You'll be amazed, and I have no intention of ever having another mammogram, ever!  Thermography and Ultra Sound are far more accurate.

Re:diet, have a look at the canceractive.com website.  Every conceivable question is answered there and also he has a book out, The Rainbow Diet by Chris Woollams - get it on Amazon.  Also Patrick Holford's book, Say No to Cancer is very informative.  Both very readable - if you know what I mean!

Have you thought of seeing Dr Carreras in Mexico?  Oasis of Hope Hospital/Clinic.  I have read wonderful stories about the amazing successes he has achieved - all non-orthodox, right down to making a serum for a woman to inject herself with made from her own tumour so she built up a resistance to it and lived..........I know someone who knows her!  Also how CBT therapy with a psychologist twice a day for three weeks cured another woman.  He is a legend in the cancer world...........closer to you than to me!!!

You and I sound as tho' we are very much on the same wave length.  How lovely! What a breath of fresh air!

Is one allowed to keep in touch in any other way other than through this website?  Maybe you wouldn't want to, that's fine, but it's a pleasant and rare surprise to find someone who thinks the same.

Best wishes and hugs....................... 

SheChirple

Ladybird and Rubiayat:

Do you mind if I chime in?  This is going to be long, and honest.

Many, if not most, women are very positive about their reconstruction outcomes.  We try to be encouraging, and supportive, of others trying to make a choice.  After all, we would all choose to not have to go through this at all, if we could.  We are also living with the choices we made, so some of it, in my humble opinion, is convincing ourselves that we made the right choice, even if we are not sure. Does that make sense?  And, we all have different experiences, so no one person can tell you how the DIEP will feel/results you will have.

When I was diagnosed, I knew immediately I wanted a bilateral mastectomy.  I saw three plastic surgeons regarding reconstruction.  Each told me TRAM flap and/or DIEP were not a choice for me, as I had lost a lot of weight and my belly was not perfect for these procedures.  I had a large 'curtain' of excess belly skin, with little actual fat. I settled on tissue expanders and finally implants.  After failed implants, the PS I had chosen said DIEP was now an option. Although the tissue was not perfect, it would be preferable to being 'uni-boob' and / or the risk of another implant failure. He indicated I would have approx. a B cup.  Before BC I was a DD. So, this would be an adjustment, but acceptable. So, I had DIEP May, 2013. Ironically, I am now larger in the breast than prior to mastectomy, but this will be reduced in Stage II.

I was encouraged by all the positive outcomes I read here.  I also read some of the disappointments. My medical provider has a day program where you can meet ladies who had the different procedures and see the outcomes, talk to them, etc... I plan to volunteer to be part of the program later.

Here's the honesty:  I have had good days and bad, good weeks and bad.  I have had moments, more than one, where I cried myself to sleep thinking "they should not be allowed to do this to people".  I, apparently, had much higher than average pain.  All of my pain was abdominal, very little in the breasts once I was over the initial couple of weeks.  I took heavy pain medication.  I, too, was very worried about the scars, and have described my body / trunk as a war zone.  I have the hip to hip scar, about 1/2" thick, still quite dark.  I, too, plan to have tattoos over the scars.  It is much more dramatic than a C Section scar. I also have what I call football shaped scars around the breasts. These have faded quite a bit.  The breasts themselves are very natural looking, sag like a 50 y/o breast should, bounce a little, and I do still wear a bra. Hard to explain this part, I have pubic hair on my breasts. I have 'dog ears' of tissue at the ends of each of the scars.  These are pockets of fat/tissue that stick out and make me misshapen.

How does it feel:  Well, my abdomen is a constant reminder.  I always feel the pressure in my abdomen, as thought I am wearing a tight girdle.  I am, at 10 months, just now feeling like I am 100% upright at all times.  I cannot bend over backwards, as my belly feels as though it will burst open.  I would not call this pain. This is uncomfortableness.  My abdomen still swells toward the end of the day. A lot. It is an uncomfortable swelling. I can control it, somewhat, by wearing compression garments, 24/7.  Not fun.

In clothes I LOOK GREAT!!! Naked, I am a battlefield.  Will this get better with time?  I sure as heck hope so. Will tattoo cover ups help me, mentally, deal with it?  I sure hope so, I'm counting on it.  I am married to a wonderful man for almost 20 years.  He is not repulsed.  But, that's him. Nobody sees me naked, except him, and then only rarely.  I still wear t-shirts to bed and cover up 99% of the time.  I'm very self conscious, even when I go to the doctor.

Do I have regrets?  Well, sometimes. To be honest, just yesterday I told my husband, 'sometimes I think I should have given that implant a second try'. I'm tired. I'm tired of procedures.  I'm not done.  I had a scar revision a couple of weeks ago and I'll be darned if it's not failing, too.  I have a Stage II for my DIEP for lift, lipsuction and shaping still to be done.  I am 2 1/2 yrs since diagnosis and my bilateral mastectomy, and I still have procedures to come. I'm tired.  I feel like this may never be behind me.

I hope, someday, to be in the category of no regrets.  I hope, someday, that this will all be behind me, and my body will be beautiful.  I hope I'm not kidding myself.

We do live with our decisions.  Choose wisely after much research.

Obxflygirl1

There is a picture forum where you can see different types of reconstruction results of some of the ladies on these boards.  I used it when I was making the big decision.   I can't remember who to contact but I'm hoping one of the moderators or someone else will chime in with the information.  I'm very happy with my results but I looked and researched the options thoroughly and I ask a lot of questions.....

Let us know what you decided.  Good luck! 

lemon68

I am schedule for Diep in May. I took a year to make this choice and I am looking forward to it. I have seen numerous pictures after it and most looked wonderful!! Everyone has to make their own choices and they are not easy. As for the scars they have plenty of techniques now to get rid of them. I also have a DH for 21 years who doesn't see the scars I have now and wont see these either he just sees his beautiful wife alive and thriving.

best to each of you, its sucks to be here and have to make these choices but I hope what you pick is right for you.

Rubiayat

SheChirple - thank you for your honest and frank post. It does make sense that we convince ourselves to some degree that we made the right choice - we need to right, so we can go on with our lives and accept our new reality? Your candidness is something I needed to hear to help me weigh the options. As you said, we live with our choice for the rest of our life. My husband says he would not care about a scar, but I would. And I know the surgeon would need to pull my stomach very tight, which would probably lead to the feeling you described for many months post surgery. It makes me think I should reconsider implants, although I don't want something foreign in my body and have to change them out every ten years. But then I don't want any of this......

Obxflygirl1 - I have access to the photo gallery and it has been helpful. I need to spend some more time there.

Lemon88 - that is a good point that there are numerous techniques to minimize scars.

Thank you all for sharing your experience. You know what a difficult decision this is! SheChirple, I hope you make it to the other side and feel good about your choice and that I will meet you there:)

Rubiayat

Ladybird - I would love to stay in contact. I PMed you my email address:)

SpecialK

You are not required to change implants out every ten years - it is usually that the manufacturer's warranty is no longer valid after ten years.  I know numerous people who had implants placed more than 20 years ago and have not exchanged them out.

sarahjane7374

My PS told me he has seen plenty of implants last well beyond 10 years.  And if they aren't causing a problem, you don't need to change them

jessica749

Yes Special K and SarahJane, I'm with you. I was under mistaken belief that I'd have to change my implants after a while - ten years, what have you- and PS  informed me that most implants last the duration and there's no reason to expect to change them. Though of course it could  happen, the need to change them

jessica749

Ladybird, when I referred to '"exbronxgrl" at the top of this thread' I meant that. From what I see on this thread you began she is the second poster. And I repost what she says below which I agree with and repeated in my own 'personal experience' way:

Please find another ps, one who has a lot of experience with recon (mine did not do cosmetic surgery). A good ps should not only present the pros and cons of all options, but be honest about what is appropriate for you and his own expertise in a given procedure. There are cons to each procedure and none come with a guarantee of a perfect outcome. Any surgery carries risks and potential complications. After you feel satisfied that you have done your best ,as far as gathering info, you may find it easier to make the choice that's right for you. Wishing you the best.

Ladybird-dancer

Dear SheChirple

How very brave of you to write your "post".  Thank you so, so much for having taken such an enormous step in order to help someone else, like me.  You have certainly been through a hell of a lot, and it sounds awful.  I'm glad you do get some good days, for all that.

I am three years down the line come this Easter, and from time to time I get very damn bored with it all, but have still resisted surgery.

What I am noticing when looking at the notes on many of the ladies on this website is how many of them have chosen to have a double Mx for "prophylactic" reasons.  I am wondering if this is a USA thing, also the addition of the ovary removal - something I'd never heard of before - and also that so many of you have had Mx with a tumour of about 1cm in size in a large breast.  I have a 32A bust and the biggest my tumour got in total ( including the satellites) was 4.2cm and I still have had no surgery.  It seems to me that the medical world in the states is all for surgery and that the Docs really put the frighteners on you to go for maximum rather than minimum surgery.  I really don't feel it's like that over here in the UK.  Certainly not with me, anyway.  

For the very reasons that you are suffering, I am really trying to do my research and I am so very grateful to every woman who has taken the time to write on this subject in order to help.

BTW, when I talk about tattoos over here to cover up scars, I'm talking about flowers and fairies and pictures..........not PS type tattoos!

I have started to take 5htp together with Vit B6 - it seems to have really helped with my oscillating moods.

I send you hugs from across the Atlantic.  

Ladybird-dancer

Dear Obxflygirl

Thanks for this.  I'll try and find the picture forum, and yes, I'm asking and asking ;-)  Glad you're happy with what you've had done even tho' I can't work out what you have had done...........it all looks in code to me!!  Ha!!

Best wishes.

Ladybird-dancer

Lemon 68

I haven't heard of techniques to get rid of scars.  Certainly none of the women I saw last week had had any help in this field.

I wish you the best for you forthcoming op.  I really hope it works for you as yes, it is such an personal choice.

Best wishes.

Ladybird-dancer

Special K............................Good news.  Thanks for that :-)

Ladybird-dancer

Jessica and Sarahjane

Thanks for all your info.  Much, much appreciated.  There are so many questions to ask, and I am trying to ask all of them.  At the moment my tumour has lost all its vascularity - great news!!! - so as far as I am concerned it is dormant and there is no reason for any knives to come anywhere near me, hence I am really trying to do my ground work.

So far I have it down to either Fat transfer or Implants unless the PDT comes on line in time in which case it would be a no-brainer to go for an in situ process with no knives at all!  Imagine that ladies!!!

Best wishes 

Ladybird-dancer

This forum seems to have lost its impetus.  So I want to say "thank you" to all the ladies who have contributed and help me towards making THE most ghastly decision one may ever have to make.

I may yet be coming over to the States to have treatment in Miami - don't even know where that is really!!!!!  The Doc there seems to be the world-leader.  For now, I will stay here and hope for the best.  Next appt in two weeks - as long as this damn thing doesn't grow, I'm safe.

Thanks again and best wishes to you all.  

lemon68

Ladybird Dancer- Do a search online for Laser surgery for scars. There is also a product called Mederma for scars. I have a 6 month old scar from hysterectomy and its hardly noticeable unless I point it out and its on my bikini line so I don't point it out !

I have looked at some pics of Diep, too many. Some not so good, some bad, some wonderful. I am going to cross my fingers as I go in. I am also keeping my skin and nipples, big difference cosmetically. I didn't know this was an option but once I found out it was I was pleased to be a candidate.

Again, all the best to you. Hope someday women no longer have to go though all of this. Keep us posted.

Ladybird-dancer

Dear Lemon

Thanks for this.  Very best wishes for your surgery - I asked a PS about keeping the nipple/areola and he said, well we have to cut it off to perform the surgery as the blood vessel we attach the flap to is so high up the chest that he couldn't reach it any other way.  They then re-attach the nipple/areola in place but often it then dies, so they they make a falsy.

You might want to check this out so that your expectations are realistic.

You are very brave, and I wish you only the best.

Love your ladybird cartoon! ;-)

besa

Ladybird-dancing -- If you want nipple sparing I would seek a 2nd opinion.  My understanding is that women with free flaps (DIEPS, GAPs etc) who have nipple sparing generally have this done without removing the original nipple/aerola and reattaching it.   Experienced microvascular plastic surgeons who regularly perform nipple sparing reconstructions are able to get to the blood vessels high up in the chest without removing the nipple and reattaching it and they have very high success rates with the surgery.  (I had a nipple sparing sGAP reconstruction.)

There may be some special issues in your case or possibility your breast surgeon/plastic surgeon combo just don't do nipple sparing regularly.  If this is something you want and it is important to you I would get a 2nd opinion.

lemon68

Hi Ladybird

Thank you for your well wishes, its so appreciated. I hope I am brave but also admittedly scared!

My BS says as long as we don't go bigger than a "c" the nipples should get the blood supply needed to live. 80% chance of survival, seems pretty good odds. Besa is correct, its something to look into. Some places don't do the micro surgery but those that do seem highly experienced. I am lucky to live near one of these places.

Your going to know when you have made the right choice for you, you will feel it in your heart and gut. XOXO

Ladybird-dancer

Dear Besa and Lemon

Thanks for your encouragement.  I went, grudgingly to my first "support group" meeting a couple of weeks ago and the top PS at the hospital talked us through various techniques, particularly the DIEP which over here is called the Gold Standard!  By its very nature it requires microsurgery, hence the need for a PS - I believe.  I have to say I didn't really understand why he said what he said as I have since seen some pretty gruesome vids of live surgery and they pull and push you about so much, why they can't just cut under the breast at the ribcage and do the rest from an opening there is beyond me.

There are no special issues in my case, as you say I think it's more that each flipping surgeon seems to have their own way of doing it - funny how very few of them are women!  As for knowing when I've made the right decision, crikey, I hope so!  So far I just can't see it happening with me.  I abhor the very idea of bringing a knife anywhere near my breasts and fundamentally I don't think it's a cure/the answer anyway.  Once they get that knife into you, there is then always the possibiity of spreading the cancer - often a surgeon can cut out the tumour but then hey presto, it turns up somewhere else. This hateful illness that we all have is systemic, it's to do with the whole body, not just part of it.

My next appt with my BS is in about a month's time - just been postponed from next week :-(  The waiting is so hard isn't it?

Good luck, Good luck, Good luck, Good luck.