DIEP success?

Trvler

I am researching PS's for possible DIEP and I was advised in the literature to ask how many of these they have done and what is their success rate. My first response from a Dr.'s office was 'Dr. X and his associate have performed many surgeries and their rate is 100% success". Really? THIS is your reply? I responded by asking specifically how many DIEP's Dr. X had done.

And secondly, how would you define success? I think I need to ask more specific questions if this is the type of lame answers I am going to be getting.

GraceB1

DIEP is a microsurgery so ask how many of those he has done. The success rate is based on weather the flap takes hold or dies off and has to be removed. Also ask about infection rates. National success rates are somewhere around 95%. There are usually two surgeons in the operating room as it is a long involved surgery. How experienced is the other dr? Another thing to ask is about follow up surgeries (second stages as we refer to them). They are quite common to try and achieve better symetry and add nipples. I'm hoping to schedule a delayed DIEP for April when I see my PS in two weeks.

Moderators

Trvlr,

This is a good start, and good for you, advocating for yourself and researching.

There's some great advice on the main Breastcancer.org site's page on Questions to Ask Your Surgeon About Breast Reconstruction that can help! Also, the DIEP Flap section has lots of great info on how the surgery works and what to expect.

We hope this helps!

--The Mods

besa

As far as I am concerned a 100% success rate is not a reasonable response. Even the very best, most experienced, high volume DIEP surgeons have flap failures. ( A failure means a complete flap failure - that basically all or almost all the tissue transferred did not survive.) No one doing DIEPs on a regular basis has a 100% success rate. To me this is not a complicated question with a nuanced answer. The response is a number with a % and it should not be 100%.

Questions to ask:

How many DIEPs do you do per week? You want some one who is doing this surgery every week if possible.

How many DIEP's have you done overall (on your own when not in training)? You want a number that is very high -- 1000, or high hundreds -- 700, or 800 if possible.

Ask to see photos of their work and to speak to former patients and if possible arrange to see their results in person. Any DIEP surgeon who does good work will have a large group of very happy "customers" that should be more than willing to talk to potential new patients. If you are not allowed to talk to former patients I feel that is a red flag.

I recommend getting a copy of the latest edition of Kathy Steligo's "Breast Reconstruction Guidebook" the best I have seen on the topic. http://www.breastrecon.com/ or from Amazon.com

Having two experienced, skilled microvascular plastic surgeons working on you at the same time is a plus in that it cuts down on the O.R. time. This is only done in a few places. (Having a senior plastic surgeon and a resident or fellow is common. This is not the same as having two senior plastic surgeons working at the same time.)

My story - following a bc diagnosis I had a very problematic DIEP done locally that required many revisions. (I was concentrating on the bc part of my diagnosis and when it came to a microvascular surgeon I just went along with my breast surgeon's recommendation. Turned out the ps was well trained, great schools and fellowship but had done very few DIEPs on her own when not in training.) In the end I did a ton of research and switched a number of the doctors involved in my care. I traveled to another state for a prophylactic ns sGAP reconstruction on the other side along with additional revisions on my DIEP (breast cancer) side. I now have a nice outcome but it was a very difficult path. A experienced, skilled ps makes all the difference.

You are doing the right thing by researching this and posting here.

Meow13

i had a very successful DIEP. After years results look great. I do know of an unsuccessful result the flap failed but patient ok. The patient had another attempt I believe it was OK but not a great looking result.

Trvler

Besa: Thanks for you helpful response. And everyone else who replied as well. I agree the 100% number is silly. She said I should come in for a consult. I think that's an unreasonable reply. I can't go around to 5 or 6 different PC's asking their stats. I just wanted to know who specializes in them in the first place. I can't believe how tough it is to find this information.

Ridley

Trvler -- maybe instead of asking for their success rate, just ask how many diep surgeries they have done as the lead surgeon, and then pick a couple of the ones that have done enough to be experts to go and see.  When I met with my surgeon (I'm in Canada so a different referral system from you), he was able to go through and tell me about the 4 failures he has had in the 13 years (I think numbers are right or close) he has been doing the procedure.  He remembered each case and what the woman did  after (e.g. another flap, implant, etc.).  These surgeries are so long, that I think a failure would have a big impact on a surgeon.

Good luck!

Moderators

We are pleased to see you getting plenty of feedback and advice. Thank you members. We hope this all helps you Trvler.

The Mods

besa

Trvler- The Breast Reconstruction Guidebook has a web site that lists most of the ps who do microvascular reconstructions.

http://www.breastrecon.com/surgeons-who-perform-pe...

A very important note- This is NOT a vetted list. Both the ps who did an amazing job on me (doing an sGAP reconstruction and fixing my DIEP) and also the ps who did my very problematic DIEP reconstructed are listed here. You can use the list as a starting point . You absolutely still need to do your research. sGAPs and especially stacked DIEPs are more complicated reconstruction surgeries (compared to DIEPs) so I personally feel that microvascular surgeons that are doing these surgeries in high volume tend to be more skilled. (That is not to say that plastic surgeons who are only able to do DIEPs can't do a good job.) When you look at the list of ps you might want to consider the people who are doing stacked DIEPs and sGAP reconstructions in addition to regular DIEPs.

I have called microvascular surgeons office and asked over the phone how many of a particular type of surgery they do per year. I think this is a reasonable screening question and I have had no problem getting a response. If you can't get an answer to this question you might just move on down the list and call someone else.

Another possible source of information. The FORCE web site www.facingourrisk.org has a "Patient Experience Contact Tool"

http://www.facingourrisk.org/understanding-brca-an...

If you use this database click on the box at the bottom of the page. (For some reason I have had trouble using this search engine when I don't click.) The database contains the names of some of the different surgeons that FORCE members have used and contact information so you can ask women about their experience with the surgeon. In addition there are many local FORCE chapters. Hopefully there will be one located near you. My personal experience has been that these women were very helpful (even if you aren't dealing with a hereditary bc or a strong family history). Because of family history or a known genetic mutation many have dealt with mastectomy and reconstruction. They tend to know the doctors in the area. You might want to contact your local FORCE chapter outreach coordinator.

http://www.facingourrisk.org/get-support/local-gro...

Where are you located? And in addition to local doctors are you considering to traveling for surgery? Possibly people here might be able to give you names to check out. (Just another option.)

Trvler

I live in the Chicago area so I figured I would have access to some of the best doctors here.

Trvler

Only one doctor performs the stacked DIEP. What is a stacked DIEP? Marga Massey? Anyone know her? I saw one person was using her in 2014 but I couldn't find any more posts by the person detailing her experience.

besa

http://www.breastcancer.org/treatment/surgery/reco...

https://mdmercy.com/centers-of-excellence/womens-h...

Trvler- two links above describe stacked DIEP. Dr. Marga Massey has a huge following of satisfied "customers." She has offices in New Orleans (she uses the same hospital as Dr. DellaCroce and Sullivan but has a separate practice). She also sees patients in Charleston, S.C., Chicago, and I think possibly Salt Lake City. There are women posting on the "NOLA in September" and "Charleston Bound" thread who are using her. I am sure that you will get responses to your posts.

I met Dr. Massey in New Orleans when Dr. Dellacroce did my sGAP reconstruction. Dr. Massey was doing rounds while I was in the hospital and checked on me. I don't have experience with her doing surgery but I can tell you I felt she was warm, personable, caring and spent time with me. She was more than willing to give me info and answer any of my questions.

If you want to contact more of Dr. Massey's patients there is a NOLA facebook group- woman who have had or are in the process of having reconstructions with Dr. Sullivan, Dr. Dellacroce, and Dr. Massey in New Orleans. PM bdavis to gain access.

Trvler

So stacked is only one side? I am going to need two if I remove my implants, which is what I want to do.

besa

http://www.breastcancer.org/treatment/surgery/reco...

http://www.breastcenter.com/

If there is enough tummy fat a ps can do bilateral DIEP reconstruction - no need to "stack" flaps. They can also construct one side out of abdominal tissue (DIEP) and the other using hip tissue (s GAP) which is what I have. (I decided to do a prophylactic contralateral reconstruction four years after my DIEP was done - so in my case the DIEP and sGAP were not done at the same time.)

There are a lot of options if a ps is technically able to do the surgery - multiple donor site options and combining flaps if necessary. The problems come if a ps is not technically able to do GAP reconstructions or stack or combine flaps and a woman doesn't have enough tummy tissue. They may sometimes steer a woman toward implants or tell her they can only reconstruct very small breasts. Some ps recommend what they are technically able to do and don't refer to someone else who is more skilled. That is why it is good to research things before seeing a ps.

If a woman does not have enough abdominal fat or hip fat there are some microvascular ps who can mix flaps to have enough tissue for a bilateral reconstruction. They can combine tummy fat with hip flap (see the "body lift" description in the link above) or combine two abdominal flaps or two hip flaps. There are only a few very skilled ps in the country who are able to do this. Dr. Massey is one. "Springtime" on the Nola in September thread had a "body lift" reconstruction and I am sure there are others here as well. Generally when this type of bilateral reconstruction is done two senior ps work together.

I only mentioned looking at ps who are able to combine flaps or do GAP reconstruction as a way of locating some of the more skilled ps. Stacking DIEP flaps or being able to do body lift reconstruction or even GAP reconstruction may be completely unnecessary in your case . But the ps who are able to do this are technically more skilled and if the need is there they are able to offer their patients more options.

Trvler

I am definitely going to check out Dr. Massey since she has a Chicago office.

besa

Just wanted to correct my last post because it is ambiguous. I am not sure if Dr. Massey does or doesn't do "Body Lift" surgery but she is definitely able to stack flaps. I think one of the questions will be if Dr. Massey does Stage I surgeries in Chicago. If not I would ask her who else she would recommend. Her recommendation would be a starting point for another ps to research. You are 1000 steps ahead of the game by looking into this so carefully.

Trvler

Thanks. I just can't help but think that regardless of the to DIEP or not to DIEP decision, there needs to be more information before making such big, life changing decisions. What is 'body lift' surgery, btw?

besa

See the two links in my post (4 posts above) -In a "Body Lift" reconstruction they do a bilateral reconstruction where each reconstructed breast is made from a DIEP flap combined with a GAP flap.

mmr36

Hi, I am glad you are asking precise questions of your doctors. I had DMX 4 years ago and both flaps failed---one immediate and one later.  There were no contraindications beforehand that I knew of.  This does seem to be very rare; I found very little on this website that refers to similar cases.  My surgeon in Houston was very experienced.  At the time she claimed she had only one other failure, a woman who agreed to speak with me and give me insights, although she was 20 years older and not as concerned with the reconstruction outcome as I was.  I was glad I did-- between what she told me and what a couple of other recon survivors had told me, it helped guide my decision on which path to follow for alternative reconstruction.  One thing I would point out is to always be aware of what the alternatives are before going in for the MX and recon; the doctor approached me about what alternative path to take after failure when I was heavily morphined and in great pain after nearly a whole day, about 21 hours, in surgery. I am glad I had a few insights to help make choices since of course I wasn't in the best frame of mind.  Also, one thing that I caution people about is to remember that the photos that doctors show you are generally their best cases, and sometimes they are several years and several surgeries down the road.  It took quite a while for me to be "fixed". My photos now would look good, but photos were not taken by the doctor's office during the years and multiple surgeries on that road. If I had seen such photos of others, not just the end results, I would have been a little better prepared for that journey.(I did take my own photos a couple of times and at some point found the helpful videos of the girl in Courage Is My Strength, which are fairly graphic and thus more truthful.)  Just to make clear, though; I still recommend DIEP to other people, especially with re-enervation.  It feels more natural and there is far less discomfort than with implants.  However, it is a time consuming and painful recovery, and I've met several women who do not like the cosmetic outcome (but also some who are happy with it).  I had a friend who had to have DMX 2 years after me and she had implants put in immediately on the table so she did not have the psychological discomfort of having to be "flat", but she also wanted a fast recovery and virtually no scars. Those things were important to her. Good luck to you!

Meow13

The psychological pain was the worst for me. I could care less about the physical pain I needed to look normal. Four months after mastectomy was an awkward time until I had the diep surgery. I felt so much better.

lovecat3

hi I'm in Southern California I did a lot of research waited almost 4 yrs for reconstruction

My only hope was a Diep flap I traveled to PRMA in San Antonio

It was life changing Everyone was professional understanding hospital care outstanding Best of all I love my new Breast and will return for my revision Surg in a few months

Please feel free to pm me if you have questions

Good luck to you!

D

lovecat3

forgot to mention mine is a stacked DIEP

Trvler

MMR36: When it comes right down to it, you have to trust the doctors are telling you the truth, which I don't. lol. I totally take everything with a grain and what you said about the pictures being their best works definitely came into my mind. When I was meeting the second time with a very highly regarded PS, he has some kind of assistant in the room. She overheard him tell me the recovery time was 2 months and when he left the room, told me emphatically that was not true. It would be closer to 4. I had a gut feeling this doctor was underplaying the seriousness of this surgery the first time and when he said 100% success, my radar was going off. I have been told this guy's personality isn't the best and that he does outstanding work, which is , at the end of the day what I want.

Meow13

i went thru surgery and recovery amazingly well. I took 2 months and went back to work. I think it was because I was so happy with diep result.

cider8

I interviewed several PS and discovered I did not like the lack of experience locally. I asked my surgeon a lot of questions: How many DIEP? How many converted to TRAM? How many failures? How long for surgery? How do they monitor flap after surgery? What do they do for Stage 2? The answers I got were 25 DIEP, 25% converted to TRAM. Considering there were 2 patient photos, no Stage 2, and consent to convert to TRAM = FORGET IT. I travelled to NOLA. KEep,reading and asking questions

Trvler

Cider: Can you tell me what you mean by DIEP converted to TRAM? Are you saying that surgeon had only done 25 of those surgeries? When you say stage 2 are you referring to cancer or surgery?

Neta69

If you are in Chicago do see Dr Massey. She is one of the absolutely best reconstructive surgeons in the US. Many claim to be top in this field but truly only a handful are as good as she is. I did a lot of research and my top 3 were Dr Dellacroce (and his fellow surgeons at the Centre in NOLA) Dr Marga Massey, and Dr Ledoux at PRMA, San Antonio. The right surgeon will make all the difference. The average success rate (flap lives) at my local hospital is around 96%. The success rate at NOLA for example is 99%. The plastic surgeon I was originally referred to had performed maybe 100 flaps (I think that's a generous number) that's between doing hands and plastic surgeries and lots of implants and Lat Dorsi flaps. The NOLA Drs have performed some 5000 to date.

Trvler

Dr. Massey isn't going to be in Chicago until December. I already called.