Autologous Breast Reconstruction - almost no choices - GAP flap

Anonymous

Autologous Breast Reconstruction - almost no choices - GAP flap

Hanging_in_there

Saw the plastic surgeon today. I feel I'm plenty fat, I need to lose 20 more pounds. But apparently I am not a candidate to take the fat from my belly (even 20 lbs fatter I was not a candidate for belly flap - when I saw a different plastic surgeon on Treatment plan day (I didn't like him and also dismissed what he said).

I'm not a candidate to take from my inner thigh. Dr. didn't recommend the L. Dorsi LAT flap, if I want to continue canoeing and other active sports. That leaves a GAP flap, which they would send me to Johns Hopkins Medical Center as very few doctors do it and one of my printouts says surgery 9-12 hours. It is fairly new surgery. I'm not even sure I would consider if I learn more about it. They put you on a spit (Ok I'm making it up). But you start on your back, they prepare the breast for recon, then they turn you over on your stomach and harvest upper butt and back on your back. They only do one butt cheek at a time. I will have to find out why, maybe too long, too much pain.

Anyone in the same predicament? I know I can have implant, which I was not originally considering, but will have to consider now. Anyone have GAP flap surgery?

How do all these other people get to use their bellies? I think I'm in the predicament because I have a thin layer of fat over big muscles.

nash

I'd seek out other opinions on DIEP and consider implants before I'd go with GAP considering how active you are. If you look into implants, look into implants put over the pectoral muscle. It's a newer procedure, but given your upper body load with canoeing it might be something to consider.

I had a uni lat flap bc I had to due to prior radiation. I'm a competive adult figure skater and this surgery has been a disaster for me physically. GAP would have had a similar effect on me. I'm not saying you'd for sure have issues with GAP, but I'm having trouble envisioning sitting in a canoe comfortably post-GAP.

Keep in mind one can have torso issues post-mx alone, no reconstruction.

Take your time deciding. Talk to more DIEP gals. Also keep in mind that most PS are only concerned with post-op aesthetics, not functionality. My very experienced PS assured me I'd be fine post lat flap and it's been anything but. I look fine, but I'd rather feel fine.

Hanging_in_there

Thank you Nash, this was very helpful. I hadn't even considered function. That is more important that the look in my mind. PS said I had enough fat for one breast on my belly, but not 2. I want both gone, so have decided on a double MX. My cancer came up fast and aggressive.

nash

You're welcome.

If I had the mx/recon to do over, I would have done the mx, then seen how I felt. Right now it's hard to sort out what is a mx problem and what is a lat flap problem. The immediate recon seemed like a good idea at the time, and it's wonderful if one doesn't have complications (which a lot don't), but I think a more measured approach may be the way to go. Especially when one is active/athletic.

jbdayton

They can do stacked flaps. Check with PRMA in San Antonio, Texas or NOLA for information.

https://prma-enhance.com/ And https://www.breastcenter.com/

Many women from all over use these two specialty centers. There are other places as well.

They are also well known for fixing up prior surgeries that had unfavorable outcomes.

I just finished a revision surgery at PRMA and they were able to correct most of problems that I was told could not be fixed. I had 5 revisions in Houston with my top doc PS. I waited a year then went to PRMA for revision 6 and it appears to be a remarkable improvement. I was told some things could not be fixed but they could minimize the problem and they did.

I was very happy with them they tell you the truth and explain in detail what they can do, if you like details.

Good luck with making the right decision foryou.

LAstar

I highly recommend talking with Marga Massey in Charleston. She is a fantastic surgeon and a true caregiver. She performed a DIEP for me after one of my GAP breasts failed due to extensive necrosis. Her work was so beautiful that I never went back for Stage 2 revisions. You can fill out a form on her web site and someone from her office will contact you within a day or two. http://drmarga.com/

Hanging_in_there

Update: I saw a second opinion surgeon today who will not take out all my nodes (just level 1 and 2). Besides survival, this has been the most important thing for me. To use this surgeon I need to get a plastic surgeon who practices in VA with this HMO. The new surgeon convinced me she didn't think it was necessary or even recommended to do bilateral mastectomy. And by doing my involved breast, I have enough fat on my belly to make one new (and pretty small) breast. I meet with the VA plastic surgeon tomorrow to discuss. I will not be able to get the Diep procedure as there is only one doctor in this practice who does it and she works in MD, can't cross the Potomac River, It probably has to do where doctors have hospital privileges. So I can get a Tram flap, not as good as Diep, but keeping some nodes is more important to me than anything except survival. They do immediate construction. I'm going to take what I can get, because I'm so happy with the surgeon not having to take out all my lymph nodes cart blanche. So I can use my own belly tissue for one small breast. I'm feeling hopeful for the first time in 2 weeks.My breasts are small in the first place, luckily otherwise I wouldn't have a chance.

Lula73

My advice - don't rush things just because you finally found a dr who said what you wanted to hear. Did this dr tell you that if you do the TRAM flap vs DIEP flap you compromise your abdominal wall? Did they talk at all about a stacked Flap? Did they tell you that if the cancer shows up in the other breast you can't go to your abdomen a 2nd time for reconstruction? Did they show you their before and after photos? Did they share with you how many of this exact procedure they personally do every year? How about their flap failure rate? Their infection rate? What are the reviews of this dr and their practice online? Do you need chemo and/or radiation post-mastectomy and if so how does that play with the reconstruction you're planning? Did you know that your insurance should allow you to go out area (to anywhere you want to go in the US) if you don't have anyone within a certain mile radius who does this surgery? And that they will likely cover you at a higher reimbursement rate even if the dr you choose is out of network because of the out of area stipulation?Oh and how about if you opt to travel for the surgery those expenses are tax deductible as long as you hang onto your receipts?

I'm not trying to scare you. I'm pointing out very important questions that should be resolved before making the decision on which dr to select. Every post I've seen online where doctors hop online and respond say to ask all of these questions before making the decision. After all, you likely would prefer to have the surgeon whose done over 1,000 of these exact procedures with a very low failure and infection rate vs one whose only done 50 with 10% of greater failure/infection rate. Ideally they need to be doing this exact procedure at the very least once a week if not more often. This is a major procedure combined with microsurgery that requires a lot of skill and patience mixed with a eye for artistry with the womanly human form. And like anything else, practice makes perfect.

Those before and after pics will tell a very good story. If they give you any excuses on why they can't show you any (including HIPPA), move on to another dr ASAP. When you're looking at the photos, don't fall into the trap of comparing them with a mastectomy photo without reconstruction. Compare them with other photos of the exact same procedure from other surgeons. I can tell you firsthand that the really good surgeons have results where you can barely tell anything has been done if at all and the new breasts look 100% natural -even with nipple reconstruction and/or tattooing. If you need direction on seeing what excellent results look like for these types of procedures, check out the Center for Breast Restoration Surgery website at breastcenter com. I'm living proof that those photos are accurate. And my recovery has been nothing like the many "standard" mastectomy with/without reconstruction stories or the "horror" stories online. I'm either the exception to the rule or the surgeons at the center are REALLY REALLY good (hint: it's the surgeons).

I know this diagnosis is hard to take, it's scary as all get out in so many ways and I'm sorry any of us have to deal with it. But YOU are WORTH taking the time to ensure you're choosing the path that will give you the best outcomes long term physically, emotionally, mentally and cosmetically. YOU DESERVE to have the best prognosis with physical results you don't just "live with" but are proud enough of to wear a skimpy bathing suit without a coverup if you choose to. From your post it sounds like that's what you're looking for. My advice-don't rush things just because you finally found a dr who said what you wanted to hear.

Moderators

Lula, welcome and thank you for pointing out these very important questions. Great post, great support you're offering.

We hope you come back often and offer your support!

--The Mod

Hanging_in_there

Wow that is a lot of info. I have been on a whirlwind tour last week, Tuesday saw 1st plastic surgeon, Wed Lymphedema specialist, Thursday second opinion surgeon, Friday second opinion plastic surgery.

I was so excited about being able to do autologous surgery. The one surgeon in the HMO who does Diep, I'm pretty sure does it quite a bit. Tram is old. But since then I have had a change of heart.

The second plastic surgeon drew on my belly where the tissue would come from. Although he would be doing the tissue expander and the first surgeon would be doing the diep. Second PS said I barely had enough fat on my belly to do it, but they could make it work. I would post a picture of my belly, but I don't want to have a picture of my belly online.

The more I looked at all the tissue they were going to take the more I had second thoughts. (I have pretty small breasts, and if I lose 20 more pounds, they will be tiny. Then I started asking to see other women's bellies. (Acquaintances). Everyone seemed to have extra rolls of belly fat, even a woman who was quite skinny. I have not given birth (have adopted child), so that probably makes some difference. But even though I consider myself fat (I still have about 20 lbs to lose), I don't have any rolls of fat on my belly, it is quite flat. I have my most fat on my hips and outer thighs. And a layer all over my body like a corn dog, but not huge rolls anywhere. If I got that tissue taken out I feel like I would be bending over, since there is no extra belly rolls anywhere.

So now I'm going to ask about implant - I won't know if I have radiation until after surgery and pathology. And if I have radiation, I guess I would have the tissue expander removed. And I'm seriously considering no reconstruction. My choices are so limited, that coming to terms that a prothesis might be my best choice.

LAstar

It sounds like you are gathering all the information you can, considering all of the issues, and taking your time -- well done! There were definitely times during my recovery from several flap procedures that I asked myself what the big dang deal is with having a couple of blobs of fat on my chest (to be quite blunt). Now that my surgery is over, I'm glad to have such nice-looking results, but it was a long process that had it's own risk, difficult recovery, and complications. I've read about people being back on their bikes after BMX in 2 weeks! Something to be said for healing quickly and never wearing a bra again. There are options to have flap surgery later using the skin from the donor site (see the NOLA website).

Only you will know what decision will give you the most peace. I know that my choices surprised me sometimes. I wish you the best in making these tough decisions! The decision-making part can be as grueling as any recovery!

Hanging_in_there

LAstar,

Did you use belly fat for recon of 2 breasts?

Hanging_in_there

LA star,

So you used your butt for recon and then a diep, did one breast have to be redone? You have been through a lot of surgery. I don't know if I could do it. Glad you like the results.

besa

Truly wonderful advice from Lula73!

If you haven't seen it already you might want to get a copy of the latest edition of Kathy Steligo's "Breast Reconstruction Guidebook." The best I have seen on the topic.

There is no right answer to all if this, only the decision that is personally right for you. As Lula73 said- to stack the odds in your favor for a nice recon find a ps that is doing the procedure you are interested in in high volume - hopefully on a weekly basis and has done 1000s of them (on his/her own when not in training.) Know that reconstruction requires a different skill set than cosmetic enhancements. You want to find a ps that is doing mainly reconstructions. See photos of their work and ask to speak to former patients. Anyone who is good will have a large group of happy customers who will be very willing to talk to you and even show you their results in person.

My story - following a multifocal bc diagnosis I had a problematic DIEP done locally in Maryland which required many revisions. Four years after my DIEP I traveled to New Orleans for a contralateral nipple sparing prophylactic sGAP and a revision on my DIEP side - a very different and positive experience. I am/was relatively thin around 5'4 1/2", weight in the mid to high120s, I have always had a pretty flat tummy. I am happy with my results. It was a difficult journey. In terms of reconstruction my experirnce is that a truly skilled ps makes a huge difference.

LAstar

Yes, one of my SGAP breasts gradually shrank over 2 years due to a large area of necrosis, so I had a DIEP to remove the necrosis and start over. The donor sites are still numb in places, but I've gotten used to it. I have a scar that goes completely around my hips from the SGAP and DIEP but it's hidden in most swimsuits and had faded for the most part.

I'm hourglass-shaped and had F-cup breasts to start with, so going flat would have been a big change for me. If I had small breasts to start with, I don't know that I would have bothered with reconstruction (but we never know until we've been there). Here is an interesting post in the section for living without reconstruction. A wonderful woman showed what different outfits look like with and without her prosthesis, and it's interesting to see how unnoticeable it is to go flat in most outfits. https://community.breastcancer.org/forum/82/topics...

Fe_Princess

Wow, excellent information Lula73. Recovery from my SGAP was long and painful which was followed by a staph infection which added about six months onto it. I only had a uni mx and did not have enough fat for a diep flap. I am so glad I read your post too since I have probability of cancer recurrence in my other breast. I did the SGAP because my original PS did not leave enough skin over the implant. So a year later, I just had some liposuction and induction to shrink the breast and fill in the dent over my buttocks. The dent is still visible but it has only been two days,but I am hoping it will diminish. I should mention that I have gained 14 pounds since my SGAP.

BigCheese

I am one year from original diagnosis, most scary Halloween ever! Ended up having skin-sparing BMX Dec last year with immediate implant recon. Body now rejecting sling or implant so need another reconstruction. Considering flap, likely SGAP. Seeking feedback on surgery, post surgery recovery and success stories, or not!

Moderators

Hi BigCheese, and welcome to Breastcancer.org!

Thanks for posting -- we're sure others will be by shortly to weigh in with their experiences and advice. In the meantime, you may be interested in checking out the main Breastcancer.org site's pages on SGAP/Hip-Flap Reconstruction for info on what to expect with this type of surgery, as well as risks to consider.

We hope this helps and we look forward to hearing more from you soon!

--The Mods

Outdoorsy

BigCheese, SGAP isn't as common as DIEP, so, therefore, it's going to be harder for you to find member experiences with SGAP. I've been searching around myself, since I'm 5'6 and 130lbs. I would most likely have to have a 4 flap procedure to get anything more than an A cup.

Fe_Princess

Hi BigCheese,

Are you still looking for feedback on the SGAP surgery?

Hanging_in_there

Big Cheese, I'm the original poster, but I've long ago had surgery. I could not have DIEP or anything on my stomach, I could not do inner thigh, I would not do my muscle in the back (I didn't want to lose muscle). I could do SGAP but the risk was so high, I would absolutely not do it. Somewhere there is a chart of the different risks and if I find it again, I will post it. You need to read the percent with problems from this surgery. I've looked for about 5 minutes and can't find it.

It is a chart that compares all types of surgery and their risk. I would have done implant or the back muscle over this surgery. You absolutely need to see a comparison of the risks of this surgery vs all other surgeries. I'm going to keep looking because the risk of complications was so startlingly high for SGAP.

In the end I decided to use a prothesis.

Hanging_in_there

Ask your plastic surgeon is SGAP is the same as GAP.

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

This is the comparison chart.

Fe_Princess

I had the SGAP and I had a lot of complications. I am a very healthy person of average weight. I am also very active and I still had so many problems. I ended up with six extra surgeries, and one of those was because I was hospitalized with a staph infection in the donor site. It sucked and if I could do it over and have my old body back, I would pay anything.