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

Ladybird-dancer

Dear Ladies

How do I choose what sort of reconstruction surgery that is not going to leave me feeling like Frankenstein's patchwork dolly?

That's the big question for me at the moment. I refuse to have muscle cut off, but am thinking about either Fat transfer, DIEP flap or an implant. I'm a 32A bra size, and would be suitable for any of these procedures. I am scared witless of what might go wrong if I have surgery and how I'll look naked afterwards.

I met my first PS last week who said: "You MUST have this operation" without giving any reasons why.  As I've put off surgery now for three years, I am not running towards it with open arms.  He then went on to list the enormous number of things that can go wrong, and gave me no hope for the future at all!

I'm in the UK and we do not have the BRAVA technique here, even tho' both my consultants know of him and have even met him at conferences.  I am off to my first support group next week where I've so far only heard negative things about Fat transfer - I'm dreading it.  Some women seem so jolly about their surgery but I'm just scared witless, frightened, and anxious doesn't even come close!

Good luck to all of us

BayouBabe

Research, research, research.  And - run for a second opinion from a new PS.  Each of us must decide what we can live with in regards to body image, scars, muscle changes, etc..  For each of us, it is a very personal decision, and only you will know the right one.  Take your time making it.  There is no rush, and you do not want to second guess yourself.  I have never looked back on any of my decisions in regards to my cancer - but, I thought them all through after researching/reading all I could get my hands on.  Good luck and peace in your decision making!  

exbrnxgrl

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.

Momine

Ladybird, this is one surgery where you absolutely have a choice. There is no reason, medical or otherwise, why you "must" have reconstruction.

Like you, I have not been able to get comfortable with any of the methods, nor with the possibility of failure or frankenboobies, so for now I continue being flat and wear small foobs when out and about (most of the time anyway). I agree with the others, get a second opinion, and a third and fourth if you feel the need. 

exbrnxgrl

Yes, I agree with momine. Having recon is not a must if you find you are not comfortable with any option. There is no medical reason for recon as far as I know.

Ladybird-dancer

Dear Ladies

Thank you soooooooooo much for your quick response - like the term Frankinboobies!!!  It's the possibility of a Frankinbody that worries me.

I seem to have worded my initial question/statement somewhat ambiguously.  I definitely want reconstruction.  Immediate.  I just couldn't bear to just have a scar on a flat chest.  What I just don't know is which form of reconstruction to have.

If one has a DIEP flap, surely one ends up with massive pain not only in the breast area and in the belly area as well?  I've had two caesars nearly thirty years ago and I remember the pain - why would I voluntarily go through that again?

With regards to Implants there seems to be some success and some permanent failures.

With the Fat transfer, without the BRAVA technique, there is some question as to whether it really works and then it takes up to 2 years or more post surgery to finalise the treatment and I'm not sure if I have the stamina.  As I said, I've been at this lark for three years already, and if I were to opt for surgery, I'd want it over and done with...............I think.  But one is told that the Fat transfer produces THE best/most natural looking result..............unless it fails!!!!!!!!!!!!

"The new breast will never look the same as your original one."  But how horribly different might it look?

I really like my breasts, they're small and petite and hardly changed since I was 18 .  The very thought of slicing into them just makes me feel sick.

I'm off to my 1st "Support Group" meeting next week.  Maybe that'll help? I'm dreading meeting up with lots of jolly women who have been only too happy to have their breasts removed.  That's just so far from my own feelings. Ho hum.

Oh dear.

Good luck to us all 

besa

For research you might want to order a copy of the latest edition of Kathy Steligo's "Breast Reconstruction Guidebook"  - the very best I have seen on the topic (see links below to order.) The options are presented in an objective way and also information on how to pick a ps etc.

 I agree with the above posters - reconstruction is a personal choice - not a "must."  I would find another ps if it is being presented as a "must".

http://www.breastrecon.com/id16.html

or from amazon.com

Ladybird-dancer

Dear Besa

Thanks for this.  The book looks v interesting - I went straight to her website.  Thanks.  Altho' I have many of the facts already.  Every woman over here in the UK is given a publication by the NHS which explains all the procedures - no photos tho'!  I think photos are so much more valuable than diagrams.  For that alone, I may well get the book you recommend. Thanks.

The PS was saying I MUST have a mastectomy.  Not that I had to have recon.  If I am to have full surgery, I defo want recon but I simply don't know which sort.

Some women fly through it, some really suffer - and that's physically, never mind the psycho stuff!

Ladybird-dancer

Dear Besa

Just ordered the book!

Best wishes............

Beesie

Why would a PS tell you that you must have a MX?  That is something that usually is outside of a plastic surgeon's area of expertise.

I'm guessing that you had a lumpectomy at the time you were diagnosed and you haven't had a recurrence in the almost 3 years since.  Is your oncologist telling you that your risk of a local (in the breast area) recurrence is very high?  Or is your risk to be diagnosed again (with a new primary breast cancer) very high?  What's prompting you to be going down the path of having a mastectomy when it appears that your lumpectomy surgery was successful?

Ridley

hi Ladybird -  this is definitely a tough decision and one only you can make.  I agree with reading the book recommended.  I also did a pro con list and then tried to spend some time listening to what my body was telling me.

I wanted to just also add that significant pain after DIEP is not a given.  I really had no pain.  I could definitely feel stretching in my stomach when walking, but it wasn't pain that required medication.  I had no pain in the breasts either.  Some women do have pain, so I'm not suggesting it's a pain free surgery, just that it's not a given. 

Good luck with your decision!

Ladybird-dancer

No, no.  I have had no surgery at all yet.

I have a lovely consultant/b.surgeon who cannot perform Fat transfer recon - so I went to see the PS about that.  I think he's pretty narrow minded and I don't think he much likes the idea that I'm 3 yrs post diagnosis and ..............still alive, well and with my own breasts!

Ladybird-dancer

Dear Toronto

Well that's encouraging.  Thanks 

I guess the "stretching in the stomach" discomfort has now gone????????????????/

Ladybird-dancer

Dear Beesie

This reply was meant specifically for you:

No, no. I have had no surgery at all yet.

I have a lovely consultant/b.surgeon who cannot perform Fat transfer recon - so I went to see the PS about that. I think he's pretty narrow minded and I don't think he much likes the idea that I'm 3 yrs post diagnosis and ..............still alive, well and with my own breasts!

Ridley

Ladybird - I can still notice my stomach when I turn over in bed, get up and start walking, etc, but it's not uncomfortable.   Just noticeable.  I'm just over 3 months out from surgery, so I think it will continue to get better.

Ridley

Ladybird-dancer

Dear Ridley

Hmm, not bad for only 3 months post op.  Thanks.  The thought of such an enormous amount of my flesh being cut out of me and then half of it simply being binned - BC in one breast only - I find a bit diff to get my head round it all.

What's the scar like? I know it goes from hip to hip but my little Caesar scar looks horrid in that my belly hangs over the top of it........................and I'm slim!  Not even 9 stone!  Which is 126 pounds.  I believe that's called an "apron".  How charming!  Yuk!

Ridley

My scars are still red/purple.   I think they will fade over time.   My scar from my sentinel node biopsy last August is barely visible now.  I know these are much larger scars though.   Time will tell.

Ladybird-dancer

Thanks Ridley.

Best wishes to us all 

besa

Ladybird-dancer -- I don't know how many photos of actual reconstructions are included in "The Breast Reconstruction Guidebook.  (I purchased an earlier edition).  In the edition I have there were photos but not a huge amount (may be different now-- possibly many more.  I just don't know.)  I do think it is a great book.

But - if you are interested in reconstruction photos - there is a picture forum.  It is not actually part of bc.org but is generously operated by "nowheregirl" who uses this site.  Many women post their reconstruction photos there.  Go to this link for instructions/info and send a PM to nowheregirl asking for access.  She won't give anyone access unless she can look up their past posts to make sure they are legit.  (If the link doesn't work search on "moderators" and "picture forum."

http://community.breastcancer.org/forum/44/topic/805466?page=6#post_3858984

Ladybird-dancer

Dear besa

Thanks so much for this.  I've just written to her.  Many thanks.

I think I ought to change my name from Ladybird-dancer to Frightened mouse.  It would be far more appropriate!!!!!

Best wishes to us all 

kareenie

i havent seen the breast recon guidebook but have ahunch it does not include fat grafting the third alternative. dr khouri also has a book your natural breasts.sorry cant do link but you can google it.

Ladybird-dancer

Many thanks Kareenie.  This doesn't surprise me.  You know what it's like, you try to fill your head with as much info as possible just in case you've missed something - which you probably haven't, but hey!  I'll certainly look up Khouri's book.  Thanks for that.   I've read various articles about/by him; didn't know there was a book.

How are you finding the fat grafting yourself?  Are you using the BRAVA bra?  I won't be able to use that here in the UK.  It hasn't arrived here.  My consultants know about it, but it's not available.  Is it really painful taking the fat from legs?  Is one really sore afterwards?  After all the **** one goes through, I'm concerned that having fat transfer might just take so long, 2yrs if I'm lucky, and longer if I'm not, and I'm not sure if I have the stamina for it.  Long time, more pain.  

My PS says he won't take fat from my belly just in case the procedure doesn't work and he has to do a DIEP !  Nothing like filling me with hope and promise!!!  One hears so many contrasting stories with all types of recon, I'm finding it nigh on impossible to make a decision.

Good luck with it all.  Hope it all turns out well for you.

Ladybird-dancer

Dear Kareenie

Just found Khouri's website..........fascinating!!!!!!!!!!!!!  And so informative. Thanks so much.

kareenie

i belieive brava is available in uk but you  wouldd be using it off label.. come to fatgraftpatients.com forum thereare a few girls posting from europe. my experienc has been longbecause i had two radical surgeries plus heavy rads. if you didnt have rads you will do great. if yo start at time of mx you will do even better.  

Ladybird-dancer

Thanks so much for this.  Really, really helpful.

All best wishes

Ladybird-dancer

Kareenie, I have already registered with fatgraftpatients.com  however I'm still struggling to find my way around their website and to see any posts and join in on any forums.  I may have managed it today.  I'll have to wait and see.  Thanks for all your help

Rubiayat

I totally understand how you feel Ladybird! After my first consultation with a PS, I had an anxiety attack! He gave me the creeps and the picture he showed me were terrible. Thursday I am going to see a third PS and am quite excited. I am leaning toward the PAP because it doesn't involve muscle, although I am willing to do the TUG. Either way I will have scars on my thighs, but there isn't a perfect solution is there? I already have several large scars on my legs and jokingly call myself the bride of Frankenstein from the neck down, so this will just compliment my other scars:)

I haven't found many women here who have had a TUG or PAP. The few that have seem to have done well and a very happy with the cosmetic outcome. Depending on where the scar is on your thigh, it may be difficult to see. My impression is that if you have the TUG it will take up to a year to fully recover strength in your leg. You may require several surgeries if some of the tissue dies, but then you may not. This is a specialized technique, so you need to find a surgeon who does a lot of these procedures. I found a good PS nearby, but she didn't before these procedures anymore and now I am driving a couple of hours from my house to one that does. Good luck to you!!

Ladybird-dancer

Dear Rubayat - great name by the way!!!

So good to hear some support from real women.  As you're in the States, have you looked at fat grafting?  Seems like the sensible way to go as far as I'm concerned.  As you've had lumpectomy - I see the Docs have had a good go at you!!! - wouldn't fat from somewhere in your body transferred to your breast be available to you?  Have a look at all the lovely info I have been given in my previous posts.

Good luck with your decisions.

Rubiayat

Thanks ladybird! Yes, they have had a good go at me:)

The PAP takes tissue (primarily fat??) and an artery to supply blood to the tissue. I believe fat grafting would be used to fill-in areas, but I am still learning about all this. Maybe the advantage of not using fat grafting primarily for reconstruction is that if you reconnect a blood supply the tissue is less likely to become necrotic.

Ladybird-dancer

Aha!  Here's hoping!  It all seems to be so individual how does anyone as terrified as me ever make a decision?

Good Luck 

Rubiayat

I don't know....these are not easy decisions to make. I ended up seeing the PS yesterday instead of today and he is recommending a DIEP. It appears that I don't have enough fat on my thighs (very hard for me to believe) to make a full breast. Even with the DIEP my constructed breast will be smaller than it is today. He suggested I could do fat grafting to fill it out, but it will be multiple procedures over a year to get to the size I want. Or I reduce the other side. I can understand you not wanted to drag this out for two years ladybird! A decision doesn't need to be made today. I can have the DIEP, let everything settle, and see how I feel. Feeling disappointed that it will take so long to maybe be back where I am today and that I will have a large scar on my abdomen......I know it is minor in the whole scheme of things, but anticipating a nice cosmetic outcome has really helped me handle the thought of losing my breast.