Important Stuff about DIEP Reconstruction

I've had appointments with seven plastic surgeons while researching my reconstruction choices. This is the really important stuff I've learned (it's related to the DIEP procedure, because I knew that's what I wanted once I had to have radiation and implants were no longer an option.)

1. Look for someone who has done a lot of the procedure you want (at least 100 a year is good). Ask to see photos of her/his work for the procedure you want. Ask to speak to people who have had good and bad outcomes with the procedure you want.

2. There are two surgery sites with DIEP--the abdomen and breast. Look for a doctor who works as a team with another equally qualified and accomplished doctor to do the work.

3. A DIEP flap is one-half of the fat and skin at and below the belly button and the corresponding vessels (picture your lower stomach cut in half lengthwise). If a ps says you don't have enough material to build a big enough breast to match, and she/he offers to add an implant later and you don't want that, keep looking to find a ps with a lot of practice in the "stacked DIEP" procedure. Here, they use both sides of your belly, two DIEP flaps, to rebuild one breast. There are also GAP, IGAP, SGAP and TUG procedures that use the buttocks, hips and thighs as donor sites. It's all about where you carry your fat. Your ps should be able to evaluate which of these is best. You want a ps who's done many of all these procedures so they are advising you based on what's best for your body and not what's easiest for them to perform.

4. With a DIEP doctors do microsurgery to reconnect blood vessels to support the fat and skin transfer; with a TRAM they remove a portion of the stomach muscle to provide blood flow to the relocated flap. A skilled ps who has done many, many DIEPs should never say "I can't promise you'll get a DIEP. If things don't work out, and if the vessels aren't good enough, etc., etc., I'll have to do a TRAM." If you hear this, keep looking for a more experienced ps. You should get what you ask for.

5. Most doctors remove a portion of rib in order to reconnect the vessels in your chest. A ps who has done a ton of DIEPs will be able to whittle away bone as needed and not remove an entire chunk of rib. Ask what they do about this.

6. While doctors don't remove any stomach muscle in a DIEP, less experienced surgeons entirely cut the muscle to get to the vessels. This weakens the muscle more than teasing the muscles apart to get the vessels but not actually cutting through the muscle--an approach more experienced surgeons take. Ask what they do about this.

7. This can be a very long surgery (mine was 9 1/2 hours for one stacked DIEP). Make sure your doctor runs heart tests to make sure you're healthy enough for such a long time in the OR.

8. If you're like me, you don't live near a medical mecca that features doctors with a lot of experience in DIEPs or other more complicated reconstruction procedures. If you can't get a DIEP in your local area, you can ask your insurance company for an out of network exception to go elsewhere and still pay in-network rates and have in-network benefits apply. You'll most likely still have to pay all travel charges (unless you have some fantastic coverage), but this might get you access to a ps who has the experience required to address your needs.

9. If you decide to go for an out of network exception, have your ps write a letter explaining what's needed and showing pictures. Also have a surgeon or ps in your local area network write a letter referring you to the ps you want to use. Have them state the service isn't provided locally and why it's something that you really need. I asked my breast surgeon because I really liked him. I also used him as my local DIEP follow-up surgeon, which you'll need if you travel for the procedure. Then also write your own letter, stating why the procedure you chose is the best one for you.

10. I can't think of anything else right now, but if I do, I'll put it here.

Good luck!