Implant vs Not good DIEP candidate - what to do?

Wiz1515- there are more microvascular reconstruction options than you have been presented with. It is possible that they are not being mentioned because the p.s. you have seen are not technically able to do them. (I do not know much about implant recon because I didn't go that route )

There is an option called a "stacked DIEP" where both sides of the DIEP flap is used. For a "regular" or more common DIEP procedure one side of the flap is discarded. These same more skilled p.s are often able to combine flaps, for example combining a DIEP flap with sGAP, or combining a T-DAP flap (a smaller rotational flap that does not take muscle) with a DIEP flap. This will often enable a thinner woman to have a good cosmetic outcome with microvascular recon.

My feeling, after doing lots of research, is that the most skilled, and high volume microvascular p.s. are not necessarily at the big teaching hospitals (this is a separate issue from actual cancer treatment.) Possibly worth a trip to New Orleans (or photos and phone consult) with DellaCroce and Sullivan's group in New Orleans -see link below.

Also, if you don't already have it, get a copy of the latest edition of Kathy Steligi's "Breast Reconstruction Guidebook" The best I have seen on the topic. It will tell you about reconstruction options as well as guidance in picking a good p.s.

(As an aside - with either a unilateral microvascular reconstruction or a unilateral implant reconstruction, you may end ip needing work on the contralateral side for reasonable symmetry.)

I am relatively thin- 5' 5" and about 130 lbs. I had a very problematic DIEP done locally and ended up traveling to New Orleans for a prophylactic n.s. contralateral sGAP reconstruction and final revisions to my DIEP side. In retrospect I wish I had known about NOLA earlier.

http://www.breastcancer.org/community/gift-shop/bo...

http://www.breastrecon.com/the-breast-reconstructi...

https://www.breastcenter.com

Are you getting radiation? If not, the implant really isnt a bad option. i had a double mastectomy - had the “other” boob removed prophylactically. I had tissue expanders and them implants. I have to say that my non-radiated side looks and feels great with the implant. The radiated boob - thats a different story. Good luck! I have also heard that NOLA is the bes

Wiz- I don’t know what happened to my response to you yesterday. I’m traveling today but will see if I can rewrite the post while I’m waiting at the airport at some point.

Wiz- the oncology breast surgeon at NOLA is Dr Ordoyne. He is up to date in the latest techniques, keeps incision length and number to a minimum. He is very knowledgeable and does a great job explaining things. Excellent bedside manner. I didn’t meet him til the day before surgery and liked him almost immediately. All the docs at NOLA do what they do because they are passionate about putting us back together...restoring our body. You just don’t find that very often today.

I’m in pharmaceuticals so I speak/understand medical/biology too. So impressed with NOLA. Mom is a nurse and says the same. She and i both recommend NOLA for anyone needing recon with or without BMX at same time. I’m also in teaching hospital central in NC with UNC, Baptist, and Duke within about an hour or so drive in any direction. Their results were nowhere near as good as NOLA’s. No one here could answer some of my questions related to previous rads from a different cancer. You know who did have the answers? NOLA and Dr Ordoyne. If you are ER+ and need an oophorectomy, they haves GYN Dr Von Almen that they work with who is absolutely fabulous as well and he can do an ooph or even full hysterectomy during stage 2.

Complications with NOLA are rare but when they do happen, you are usually still in town. After you leave, any complications are handled via phone, email and photos. They are very responsive to any concerns you have. It’s not like they release you and that’s it. They are calling each week to check in with you and you are encouraged to call them. You are released from the hospital with complete written instructions and before you’re released you and your caregiver are trained on showering, dressing changes, do’s and dont’s. No prior medical experience required as they will train you from scratch.

The only person you need to justify your decision to is yourself. This procedure is not crazy to travel for. Afterward, if you choose to show your friends and family the results, it will all become clear to them why you went to NOLA. My girlfriends & sister supported me 100% but it became clear that they supported me because they love me not because they agreed with my decision at the time. On vacation with my girlfriends following stage 2 they asked if they could see. I said sure and showed them. Their response? “I understand why you went to New Orleans now!” It’s also hard for people to wrap their minds around traveling for medical procedures when someone local can do it. Just because they can do it does not mean they are really good at it. Ex: I can make a pie crust, but it looks nothing like my mother’s gorgeous super high end gourmet bakery-looking crusts. Both do the job but hers are a work of art. For breast recon, you need an artist. The docs at NOLA are like my mom with her pie crusts...artists and they will focus on making your whole body proportional again vs just focusing on your breasts and not paying any attention to the changes on your lower half like so many other docs do. As far as the low expectations, that’s what we’ve been conditioned to expect with BC and recon. NOLA in particular offers the opportunity to have superior outcomes with soft, warm, breasts that look/feel natural. Definitely worth the travel. Feel free to ask additional questions. If you’d like to talk live on the phone, let me know and I’ll send you my number.

Hi Mimi- I’m so glad things are moving along nicely for you! One foot in front of the other is the key. In the BS’s opinion...many women on these boards and others have run into the same thing. BSs and PSs can have some strong opinions on different procedures and traveling for procedures. From the business side of things: they lose you as a customer and it affects their pocketbook (most get paid a salary + a bump in pay for each procedure). And how many people will you share your DIEP experience with locally thru support groups, etc who in turn chooses not to stay local further impacting their pocketbook?

From a personal perspective: they may feel like you're telling them what's available locally isn't good enough. If you're looking to have particular type of recon and they don't offer it or they do but not with the outcomes you'd be happy to have, then that is true to some extent.

From a personal experience perspective: they may have heard about or had to clean up some other not local surgeon's mess in the past - remember the pie crust analogy? The difference with NOLA is you are going to the best of the best. They are a private group practice meaning there is no larger institution to shield them and there are not 100s of other docs/surgeons on staff that can skew the numbers and hide a bad/not so great surgeon so that on paper it appears that you are going to the best of the best.

From a professional perspective: many docs cannot wrap their mind around doing anything other than the quick and easy option - you'll have breasts afterward either way, right? Many docs who do not do the procedure are typically not up to date on the muscle sparing procedures that do not come with the same long term core issues that the older TRAM flap recons came with. So they're misinformed or confused (keep in mind this is not a procedure they do or are studying to do so even though it's surgery and they are a surgeon they do not have any need to stay up to date on the latest and greatest as it doesn't apply to them.)

And many cannot wrap their mind around traveling for a procedure. But I bet they don't blink an eye or object if someone travels 2-5 hours to see them (at that point it's a compliment).

At the end of the day, this decision is yours and yours alone. Not the surgeon’s, not your mom’s, not your husband’s. One of my favorite quotes is “Don't base your decisions on the advice of people who don’t have to live with the consequences/outcome.” That BS does not have to live in your body for the next 50 years...you do. Listen to what she has to say and decide if her arguments are warranted and valid to your situation, your thoughts, and your feelings on the matter and use it as another piece of information to consider in the decision making process. It may impact your decision in the end but it also may not impact it at all.

The other 2 things I’ll throw out there are that the before & after photos of each doc tell quite a story. Assume that they are showing you their best work...if their best work isn’t something you’d be happy to have for yourself (not just happy considering you’ve had BC), keep looking for a surgeon who can give you results you’d be happy to have. A group’s/surgeon’s flap failure and infection rate also tell quite a story. NOLA’s flap failure rate is <1% (national average is 10%), infection rate is <2%. I wonder what the local surgeon’s stats are with implant recon...

Wow Wiz, thanks for your update, to think you are only a few days out from surgery and able to type such a detailed update, thank you, thank you! I will keep in touch with what happens next in my world and hopefully it will be some help to others in this journey!