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!

Smile Girls!

My plastic surgeon will speak to the insurance's medical person next week for the peer to peer review. I'm fairly confident she will get them to renew my out of network exception so I can finish up my DIEP work with her.

To help out the case, she's requested photos of the work so far so she can go into detail about what additional work needs to be done. I'm very glad she's asked for this information to make a stronger case, but I'm not thrilled with the idea of posing for pictures.

Don't worry, I have no intentions of posting them here or anywhere else!

I'll keep you posted.

Peer to Peer Review Time

Turns out my insurance denied my out of network exception because they believe I can get DIEP stage II services in my town.

I invited the person who thinks this to come to my town, get that done and let me see it.

Of course they can't because there is NO doctor in this town who can do a DIEP. I pointed this out, but no one cared that such a simple and big mistake was screwing this up.

Insurance medical approvers are as invisible and untouchable as radiologists, it seems.

If this ever happens to you, the words you need to know are "peer to peer review." You need to have your doctor call the insurance's precertification office and request one of these.

Allegedly, this is much, much faster than the other option--appealling it myself. So it's back in my doctor's court.

I'll keep you posted.

Denied for DIEP Stage 2

I wanted to fit in an appointment with my plastic surgeon before the end of the year so we could start discussing the second stage of my DIEP reconstruction.

But I found out from the office person today that my insurance company is denying my out of network exception.

Swell! I wish I could say I'm surprised, but I'm not.

So I get to call "them" tomorrow and try to get this straightened out. Since that's probably going to take more than one quick call, I've cancelled the appointment with my ps and will wait to start on round 2 until next year.

Here's the totally frustrating thing--it's not like I can pick up a phone and call the one person who can fix this. I will have to start with the 800 number on my insurance card and work from there.

PITA, PITA, PITA, PITA and I'm not talking pocket.

I'll keep you posted.

It's a Loooong Process

The thing about breast reconstruction after breast cancer is it's a process. Usually, a long process.

All the available methods take time and require stages. With implants, expanders are filled on a regular basis and then removed and replaced with the final product.

Tissue transfer procedures like TRAM and DIEP require an initial surgery to move the fat and skin and then another to make things look good and, if needed, to align the other girl.

Then, of course, building the nipples is another stage, and tattooing color for the areolas is yet another.

The time it takes to progress through these stages varies by individual. I'm realizing that I'm at 16 months and have only completed stage I of my DIEP. There's still a lot left to do, and it will take time.

I'm coming up on the third anniversary of finding my cancer--Thanksgiving night 2006. I don't feel like much has changed. I'm still very busy with cancer fallout--determining and then completing a yearly breast check plan and working to get to the next stage in reconstruction.

Gildna Radner got it right--it really does feel like it's always something or it might be something once they load you on the cancer rollercoaster.

I smile when people say, "It must be so good to be past all the cancer." It doesn't work that way.

I wish it did, but it just doesn't.

Is Mastectomy a Better Option if You Have Dense Breasts?

This BBC article says there's an increased risk of breast cancer recurring in dense breasts. The focus here seems to be seeing if women with less-dense breasts might be able to skip radiation after a lumpectomy.

I'd say it also suggests that women with dense breasts should opt for a mastectomy rather than a lumpectomy. It also makes a great case for giving women diagnosed with breast cancer an MRI before surgery to get the clearest picture of what else might be going on in dense breasts before deciding on a lumpectomy or mastectomy.

In my case, an MRI showed two additional areas of concern in another quadrant of the breast, away from the two tumors I found.

After reading this, I know I'm happy I chose mastectomy rather than lumpectomy. I'm also happy I chose to have radiation. Hit it with everything up front so hopefully I'll never have to deal with it again.

To most people who've never had to make the choice, I'm sure a mastectomy seems very drastic, but it gives you more reconstruction options. In my opinion, it's not as horrific as it's held up to be. It ain't no picnic, but it definitely isn't the end of the world.