Follow my Brava and Fat Grafting Day by Day
Comments
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Gointocarolina's rant about a doctor she apparently decided not to consult seems to me to be mean-spirited at best and possibly libelous at worst. I will leave it up to the moderators to decide if BCO wants to leave it up. (August 1, 2014 at 9:32 am)0 -
Dnice and Lily55: Fat grafting is just a broader term for injecting fat. Also called Autologous Fat Transfer. Micro fat grafting just means that the fat is carefully dispersed throughout the tissue into tiny micro droplets. Micro fat grafting can be used in stages to build a whole breast or to fill in around implants or flap or whatever. The overall volume injected is irrelevant.
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Thanks Kareenie. I needed clarification even after googling both terms. I am truly getting a med/school education...
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I've been following this thread, and I have to express how sad it makes me that, after a couple of women spoke openly about their personal experiences and gave their honest opinions, a couple of other women threatened to "report" them or accused them of slander.
BC.org is about women supporting each other, talking with each other openly, and sometimes looking for a shoulder to cry on. The vast majority of women here (though I noticed not all here on this thread) are either fighting cancer or have fought cancer. Expressing an opinion or complaining is not slander. If this thread continues down the road of accusations and threats to report people, it won't be a spot for women to speak openly and share their experiences with each other.
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Agree.
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Lifeiswonderful,
Thank you kindly for expressing your opinion.
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GingintoCarolina
Wooo there! BRAVA is not recommended for breast cancer recon? Where did this come from? I thought that was exactly what it was for? Any info will be gratefully rec'd.
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Alexandra-aaa
Thanks for the link to the site listing BRAVA Drs as it even includes some in Europe. We are soooooooooo backward here in the UK. Can't begin to tell you. We even have a parliamentary statute known as the 1939 Cancer Act - yes actually 75 years old/out of date, which threatens any physician with being struck off if they choose to try something alternative/integrative and not approved by NICE - the equivalent of your FDA. There is no BRAVA in the UK. Not anywhere. So count yourselves lucky ladies in the USA! At least you have the choice!
Best wishes to all...................
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No problem Ladybird, but as I explained in that post (7/30), I was under the impression that those were drs who sell BRAVA to patients who want to use it for (augmentation) growth via sustained expansion/negative tension with NO fat grafting/no surgery. Not necessarily surgeons who perform fat grafting too. (Tho I could certainly be wrong.) So far it seems the best bet for finding a BRAVA + AFT surgeon (augmentation or reconstruction) is good old word of mouth (forums like BCO & FGP), and of course google to find any surgeons who have included info on their own websites.
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My gosh ladybird.. I am soo sorry you have to connect with people so far away to get answers for yourself. This is very difficult. I am glad you have connected with the forum and are able to hear of others experiences. Have you decided anything yet? It's difficult in the best of circumstances. I can't imagine how it is for you in UK. Xo Dnice.
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Yes it's all ****! One lady on this site has offered me to visit her specialist in Spain, which I may well yet do. I can get AFT here in the UK with a TE and then the more fat they transfer, the more they let down the TE and eventually withdraw it altogether. Only probs are that I was told to expect a 90% failure rate at the first transfer with only a max of 50% uptake thereafter, whereas I have heard first transfer with a BRAVA is up to 75% retention. Quite a difference! I only have an A cup bust, and only one side that needs work done on it, but wonder how many treatments it might take and whether in the UK it would end up being at all successful, compared to how many treatments it would take with a BRAVA. I also don't have that much fat to spare - I only weigh 119 - 126 pounds tops.
The USA is a massive country. I hear you all talk about different Drs in different places and don't really have a feeling of where these places are........yes I know I could look up in an Atlas ;-) Dr Ahn in NY seems to have happy followers - but then staying in NY would cost a lot for however long I needed to stay. It might be cheaper in Miami with Khouri, but so many of you have damned him and his set up.
Is there a list of Drs who perform BRAVA in the USA? Can one ever really believe what is written in any of their websites? Being a Brit I have no health insurance and just have no idea of the cost for this treatment. Are we talking $5, 10, 20, 50, 100,000? Does anyone have a ball park figure? I have approached Khouri via e-mail 3 times from his website and had no response. Ahn wants loads of info before they are prepared to give me any reply.
As for the FGP website - I couldn't make it work for me. Would that be the one I actually sent a donation to? Is that the one they ask for a donation on every page of their website? I also couldn't work out how to see any info on the BRAVA web site. I kept getting blocked.
In a bit of a cleft stick here!
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Ladybird-dancer,there was a thread here with doctors who perform fat grafting..I bumped it up a while ago.When I was hoping to have fat grafting,I did a lot of searching on the internet.I put in every term I could think of and I found quite a few doctors.This was back when the clinical trial was going on..which I think it still is...but doctors seem to have dropped out of it.I am not sure if you would be eligible since you are not from the US,but we do have Hope Lodges which are free for cancer patients.There is one in NYC,another in Charleston SC and others around the US.I found a study that was done comparing fat grafting with the Brava and without.I will try to find it again,but it basically said that without the Brava the main difference was the number of sessions needed...this was being done without stretching the skin in anyway,so the fat that was placed was doing the stretching.My one PS explained it to me as being like a pregnant woman..her skin slowly stretches over her abdomen...so a TE or the Brava makes it stretch the same way.I had a doctor who was going to use TEs for fat grafting,when I could not retain the TEs,she felt she could still do the fat grafting for me.I decided against it as I did not want multiple surgeries.There is a device(or was) in England called the Noogleberry,which is very similar to the Brava and I was told some doctors in the US were using it instead of the Brava.Another doctor I saw who felt I should not invest in the Brava because of my fibromyalgia thought I should buy a Noogleberry and try it to see if I could tolerate it..they are way cheaper than the Brava.Might be worth looking into.
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"...As for the FGP website - I couldn't make it work for me. Would that be
the one I actually sent a donation to? Is that the one they ask for a
donation on every page of their website?..."Ladybird-dancer, FGP (FatGraftPatients.com) is my site. There are absolutely NO donation options, NO fees, NO ads, whatsoever, on ANY page. It is not affiliated with ANY surgeon, and is funded by me alone. It is a "spin-off" of my original site, Alexandra-AAA.com (support forum for women who never developed breasts, begun in 2004). In 2009 I started researching fat grafting, came upon BRAVA + AFT and began posting about it on AAA. After getting interest from recon girls, I decided to create a second site (FGP) in 2010. Back then I couldn't find a single person on the web who had done this, and built my site with all the info I could find, my experiences and photos, and eventually other members' info as well, to help others in my boat seeking info.
I'm sorry if you had difficulty navigating the site - the simplest way is to start on the main page and view the different categories/sub-forums. It's actually quite structured
(I looked for a member with your name - the closest I saw was "Ladybird", with just one post. Not sure if that's you or not. I'd be happy to help you using the site, just email me.)"...Is there a list of Drs who perform BRAVA in the USA?..."
"...there was a thread here with doctors who perform fat grafting..I bumped it up a while ago..."
On FGP, in addition to Dr. Khouri, we have stories posted by 50+ ladies who have used 10+ surgeons. The "Surgeon Database" on FGP only includes surgeons if members had actually used them. The topic on BCO (https://community.breastcancer.org/forum/44/topic/769795?page=1), which lists more surgeons, tho many found by internet searches but no members who were patients (similarly listed on FGP, but separate from the confirmed database). It seems that the only way there will be a true database of BRAVA + AFT surgeons is exactly the way it's being done on FGP and BCO, a grass-roots-ish method of patients' experiences and research. I can't imagine there ever being an "official" such list. As far as I know, there isn't one for implant recon or augmentation surgeons, for flap surgeons, for any kind of surgeons for that matter (reminded me of trying to find a surgeon for the rare cancer my Mom developed last year - I found him thru a website where users submitted surgeon names they used or found).
Hope all of that was helpful!
Alexandra
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ladybird dancer i think that surgeon is a pessimist! I had no BRAVA, very damaged tissue as a result of radiation with skin super tight and I retained 70% of my first transfer..........the way BRAVA is useful according to my surgeon is that it stretches the skin and tissue so makes space for the fat. I have had one transfer done after BRAVA and kept around 60 to. 70% again so I dont think BRAVA is essential..........and I speak as someone whose skin did not even move prior to first transfer
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Ladybird. Look up Hope Lodge, American Cancer Society. A place to stay free in NYC and yes it appears people from other countries can stay there. Check it out...
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Yes ladybird... Hope lodge is in NYC. I believe Dr Ahn will arrange for an out of town patient to stay there.
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There is an official list of doctors who perform flap surgeries and direct to implant.It is at
http://www.breastrecon.com/index.html
You can send her names of doctors but the doctors have to request their names to be added after she contacts them. This site has a lot of useful info.
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official in what sense?
This is a website of an author of a BC reconstruction book.
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Wow Ladies! Thank you all for all of this valuable information. This is great news about the Hope Lodges. It might even make it possible with Dr Ahn. And thanks Alexandra for your offer of help in navigating your website. You all know how it is. At times one has the energy to find out more and more info and then one gets to a point when you come up against things that don't work easily for you and you feel you've searched the web, your local health options and your soul and you just give up as you get to a point of stalemate - at least that's how it's been for me. Such a struggle to find the right way.
Let me make it plain, I have not yet had surgery.
At present my Dr is happy for me to continue on Tamoxifen as the tumour is not growing and has shown signs of shrinking over the last 6 months - having said that, it ain't going to vanish. Ha! So surgery is still where we are aiming for............when I a) pluck up the courage to agree to it and b) decide what I could find acceptable as a procedure, i.e. what choice of recon.
The plan is for me to have a Skin-sparing MX with immediate TE to maintain the "breast pocket" - so I don't need to "grow" a breast after the op. What they don't know is whether I will need rads post op, so using a TE immediately keeps my options open.
It seemed to me that the success of the BRAVA with the fat transplants and the matrix that the BRAVA induces in the skin allows the transferred fat more chance of adhering and surviving. Hence my interest in BRAVA. Khouri has said himself on a video on the net that a TE does not "expand", in fact it pressures and compresses skin on the inside and therefore really inhibits the take up of any fat that is grafted. So I assumed that that was why my Dr suggested the very low rate of uptake of fat, i.e. only 10% at the first transfer, 25% at the second and only ever as much as 50% at best thereafter. Pessimist or realist? Speaking from experience or not interested in doing it? One never knows......................
I will go ahead and follow up your suggestions ladies, and thanks once again for all your help and support. This website/forum is amazing.
All best wishes to all of you.
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Ladybird,
Along with American Cancer Society's Hope Lodge, they also have a program called Road to Recovery where volunteer drivers take you to appointments and treatments at no charge.
I had to go to HBOT-hyperbaric oxygen therapy everyday for a month to treat severe rads damage, but my family and friends could not take me to all appointment so ACS RTR picked up the slack. You should be able to Google the ACS web site to call and register for a ride.
Has Dr Ahn suggested free flaps?
Warm wishes for being cancer free and having great results with your recon.
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Ladybird, I am seeing Dr Ahn early Sept. Hoping she is good fit for me. We'll see. I'll keep you posted with any info I think may be helpful. XoDnice
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ladybird most doctors will not use brava with TE or implants in place. If you use a brava fg doctor they can do first fg at the time of MX which can be SS or SSNS.
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Thank you, thank you for this. I wait to hear more.
Kareenie
Apparently my BS will not do any fg during surgery. I've asked. I'll ask again, but I think it's to do with the concern over rads. Yes, I'm hoping to have a ssn&as MX. We'll see. If one still has the "breast pocket" surely one has to have something inside that to keep the shape, i.e. a removable and deflatable TE? Or is it that at the time of the MX one then has the BRAVA and it is that that keeps the shape? This is the one area I am really not clear on. As there is no BRAVA in the UK, this is not taken into consideration. I thought that perhaps on arrival in the USA the TE would be taken out and the BRAVA worn to keep the shape. Crikey it's complicated.
Now that there is hope of some help if and when I land in NYC, I will fill in the form that Dr Ahn has sent me and get the info from the horse's mouth, as it were. No doubt Dr Ahn will put me straight on these complicated technicalities.
Dnice - That would be great. I wait to hear from you. So far her office staff have been very helpful.
Pinkheart - Very interested that you are having O2 treatment - so am I. I go to an MS centre once a week at present. I don't feel any different, it's done nothing for my anaemia, but for £10 a shot, I thought I'd give it a go. I did a 4 week induction - every day for 4 weeks - that was quite mammoth! Started at 16ft, then 24ft and now I do 33ft.
What has been recommended for you?
Under what circumstances have you been advised to have the O2 treatment?
Has it visibly helped?
Dr Contreras at the Oasis of Hope clinic has a "cocktail" he recommends for all rads patients to stop the chain reaction of rads. I would hope one could buy this supp direct - I haven't tried yet. Let me know if you get a result :-)
If I could avoid flaps, I would. I really don't want a DIEP and I might go for a TUG, but anything else is absolutely not acceptable for me. There is a new Russian (yes Russian!!!) PS at my hospital who's supposed to be v. good and I am waiting to see her. I have to say that I saw a woman, 5 weeks post DIEP and the scar looked like 2 pieces of paper touching each other. Very impressive. The patient was young, only about 40 something and I don't know whether she'd had babies or not. I'm older and have had 2.
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I'll keep you all informed and thanks so very much for all your info. I do really feel held - which is all any of us, I believe, really need.
Best wishes to you all.
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you cannot use BRAVA immediately post mastectomy, that is a definite. You normally have drains after an mx to remove excess fluid and prevent a seroma. If you don't have rads i don't see why you would need the BRAVA for fat transfer, its the effect of rads that changes the game in my humble opinion
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Carol... Very well said
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It is a rant, but as someone who did go there, it's basically true so it can't be libelous.
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I've been away and haven't been able to check, so forgive me if I'm going backwards on topics.
Thank you, lifeiswonde… Yes, we gave our (very detailed) opinions. I did not ever say -- Dr. XYZ sucks and Dr. ABC is wonderful. I explained (in extreme detail) everything that happened and everything I didn't like about one Doc and everything that did happen and I did like about another.
I think I have mentioned the very important fact that i have bordered on reporting a doctor because I (and the people who were with me) felt it was not a legal practice of medicine. The only thing that is holding me back is a few women I met who are willing to endure anything (including experimentation) to have breasts. I will continue to weigh this issue and, in the meantime, I will continue to make sure women are aware and take other options if they have it.0 -
I've been away from this discussion for quite a while! Short story: waited 5 yrs after RB mast, then had 6 fat grafting procedures with Dr. Khouri but turns out my radiated skin is too damaged for that to work so now I will likely have perforator flap reconstruction (if you want the details check out my history of posts here and on fatgraftpatients.com).
The comment I want to add to the conversation is that I'm amazed about how HARD it is to collect information and then make a choice about reconstruction procedures and doctors. I started researching in spring 2012 when I decided to have reconstruction. I made a choice based on the info available then, and after 18 months I now need to make another choice. Since May I've had two in-person consults and one phone consult, and planning another phone consult in September. The information available now, the state-of-the-art in perforator flap surgery, the availability and number of drs doing fat grafting...it is mind boggling to me how much has changed in just two years, and how difficult it is to compare different procedures and doctors. The bottom line is I have to decide who to trust.
Many of us have had difficulties - sometimes doctors make mistakes, and sometimes our bodies just can't handle it any more, and sometimes we will never know what contributes to complications. I've tried to share my "what happened", hoping that it's valuable for others, without trying to influence anyone - it's such an individual choice and unfortunately we have to make it for ourselves. These forums are invaluable and I thank each and every one of you for being willing to tell your story in cyberspace!
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Thanks Lilly - with me the situation is that the Drs won't know if I need rads until after the op, and my tissue has been to the path lab. Hence whatever I do will be done in two stages. Currently my BS thinks it's 50:50 that I will/won't need rads, but I repeat, no-one will know know if I need rads until after the op, and my tissue has been to the path lab.
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hi goodrhue... I agree with everything you posted. I am so sorry you have to regroup and find another solution. I am going to try to find your story. So curious about how you made the decision to try another course and whether or not Dr Khouri was on board? I have another name in NYC if you are interested. Dr. Babak Mehrara. He is at Memorial Sloan Kettering. Lots of info about procedures performed there on a blog you can access at the bottom of his profile page. Take care. XoDnice
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