Topic: Bilat Reconstruction - Help! Where to start?

Thanks, Cheryl!  I'm thinking I'll fill my time of "waiting" for the lumpectomy/biopsy and getting the results with setting up PS appointments and researching my options. But should I wait, instead, to find out if there is, indeed, cancer (DCIS, IDC or ILC) and if I'll need radiation?  I've heard needing radiation plays a big part in the kind of recon a person gets. Is that right?

Dear LeeMcC:

I think it is good that you are going to research all of your options.   To answer some of your questions - Radiation affects any type of reconstruction. It makes healing more difficult. From what I have read it seems to affect implants more than reconstruction with your own tissue.  But that doesn't mean that your choices of reconstruction are reduced.   If you don't have any node involvement and they get clean margins you shouldn't have to worry about radiation.  It sounds like they have caught it early if you are stage 0.  I am not quite sure if it is at an early stage why they are recommending a BMX.

To have the option of the Diep you need enough tissue from your abdomen or behind to reconstruct your breasts.  This type of surgery requires a micro-surgeon not just a plastic surgeon who is highly experienced.  You will have a scar across your abdomen below the bikini line just as if you have had a tummy tuck.  The surgery takes about 5-6 hours for the Diep.  The breast is warm and looks as close to what you had as possible.

Tram flaps are just about considered obsolete because it takes the stomach muscle and therefore caused problems.  Free Tram was the next advancement where they only take a small portion of the muscle and now they are doing Dieps that spares your stomach muscle and only take the blood vessels and fat from your abdomen.  The latter is a very simplified explanation of the procedures.

If your not sure what type of reconstruction you want to have and you feel you need to have the mastectomy immediately instead of doing a lumpectomy first you can always consider delayed reconstruction after everything is taken care of.  Some woman feel that they want to take care of the cancer first and then take care of the reconstruction.  I had delayed and there are pros and cons to having delayed reconstruction.  I was able to take my time and consult with 4 microsurgeons before I chose the one that did my Diep.

Implants have there pros and cons.  It is a simpler surgery that only takes a couple of hours.  There is not a long recovery time. There are fewer visible scars.  But there can be complications with this type of reconstruction.  You can have infections with the expanders.  You can have contracture of the area around the implants which causes it to become hard and uncomfortable.  You also may have to have it replaced in 10-15 years.  Implants have a limited life expectancy. 

I agree your head must be spinning to try to decide so many things when you don't have all the information is really impossible.  Research on the Net.  Look at the pictures of reconstruction on the net.  Talk to people who have had the Diep and breast implants before you decide.  I got names of women in my state from the microsurgeon I was considering.  I also connected with another woman from this site.  Meeting and talking to women first hand is so helpful.  Most of the women were more than willing to show their reconstruction. I got to talk to 6 women who had the Diep and the Gap extensively.  This helped me make my mind up as to what I was going to have done and by whom.

I hope I have helped a little.

Sassie

Hi LeeMcC,  I am sorry you are joining us on our journey, but you have found a wonderful group of women who can support you through this.The girls that replied said it all so well.  I had bilat mast. with Tissue Expanders placed at once, that was 1 yr. ago in May, I had my exchange surgery from TE to silicone implants in Feb. I am still waiting for nipple surgery and tattooing as I got an infection in my first nipple surgery and now have to wait for all to heal.  If you do consider TISSUE EXPANDERS just be prepared for a 10-12 month process .  I wanted the tram flap but did not have enough tummy fat and I had too much scar tissue  from 3 c-sections. TE was my only other option.  Also, find the forum for  breast reconstruction and scroll down untill you find the thread for "CONTINUED TISSUE EXPANDER PAIN" there you'll find many wonderful women who has gone thru this procedure and you will get a better insight into what is involved. Just research all your options first and feel happy with your decision. Gentle hugs,  and Good luck, Keep us posted,Jeanie

Dear LeeMcC

In my opinion if they aren't an experienced Diep microsurgeon I don't think they could give you a good opinion.  For example I went to a plastic surgeon who does trams and he told me I wasn't a candidate for the Diep.  He said my abdomen was too small.  He also told me he couldn't do a double tram because there would be too much muscle loss.

Well, I have two perfect breasts that Dr. D. said he could do with the Diep and get a B or do the Gap (buttocks) and get a C cup.  So the plastic surgeon who is well regarded in my area was wrong.  Nola has so many different procedures: They can take it from the abdomen, they can take it from the buttocks and they can do a stack.  I don't think they like the tug.  That is where they take it from the inner part of the top of th leg.

Dr. Allen is highly experienced in all procedures.  The only problem was he is very expensive and it would have been too much money out of pocket.  He is an out of network doctor.  But maybe you could go to him and get a consultation.  Your insurance should pay for that but I would find out first.  I had several consultations before I found the right doctor.

Everything depends on what type of insurance you have and whether the doctor is in network.  Also some doctors even though they are out of network will except what your insurance pays them.  It is all so different with each doctor and each insurance.  But I won't lie to you there will probably be some out of pocket money with this type of surgery.  It can vary from $2000 to $15,000.  The average I would say is $6,000 out of pocket.  But again it all depend on your insurance and the doctor.

When you decide on a doctor they will have a finance department and you can ask them to do the paperwork with your insurance and tell you what it will be out of pocket.  The thing I didn't like about Dr. Allen's office was that they put all the responsibility on your head and just told you how much the doctors fee was and wouldn't commit to what you would owe in the end.  He was the first surgeon I contacted.  But after talking to there finance department I went elsewhere.

I see you are 48 and if you already had children you probably have enough tissue.  But again it depends on how big you want to be. 

I hope this has helped.

Sassie

Thanks Sassie -- You're right, I have a lot of research to do and phone calls to make. Out-of-pocket expenses obviously are on top of travel ... so I have to be careful. There's only 1 doc in North Carolina who does DIEP, and he's at Duke. But maybe it's worth it to go there and get a consultation. Dr. Allen is only 3 hours, so I could go there too. I can't travel to NOLA on a whim just for a consultation.

Where do you live and where did you end up going?

Dear LeeMcC

I ended up going with Dr. DellaCroce in New Orleans. 

Sassie

Your insurance will cover you for the type of reconstruction you desire, and will pay for revisions as well. 

If you are interested in NOLA, you can fill out the contact form on the website at http://www.breastcenter.com/contact/starting.php and start the process.  That is a photo of Liz on the page, the Center's amazing patient educator.  She is one of the sweetest women I have ever met!   You do not have to go to New Orleans for a consult prior to getting an opinion from them on if flap reconstruction is possible for you.  Besides DIEP, they also do GAP, which they say is possible on nearly all women, including athletes.  Recently, they have innovated the lumbar flap, which uses fat from the love handle area.   They are the only doctors doing stacked flaps, if more volume is needed.

I had problems after stage I in Los Angeles, and when I had to find someone to fix me up, I found so many testimonials to Dr. DellaCroce's skill and artistry that it was really a no-brainer to go to him.  I'd heard of him before my first surgery, but didn't think the travel or being away from home for two weeks was possible.  I didn't go back to work for five weeks, so it certainly would have been possible.  Knowing the difference now, all I can say is seek out the very best surgeon because you will live the rest of your life with the results.  The travel is nothing....a few hours on a plane, transport via limousine to the hotel and to all of my appointments.  It's great living in such a mobile society, which enables us to seek out the very best doctors in the world.

To answer your question about what to look for besides skill, my answer would be a surgeon who is also an artist.  Based upon the average result, it seems that it's not so easy building breasts that are shaped like real breasts.  Before I went to NOLA, someone told me that the doctors there like to model their work after Playboy breasts, conical in shape.   I emerged from stage I in L.A. with hamburger buns, so the thought of something that would fill a bra cup and look decent was very appealing to me.   At that time, most of the posts I could find about Dr. DellaCroce were on the FORCE (www.facingourrisk.org) board, and women were gushing about how he and Dr. Sullivan were doing generous liposuction to recontour their bodies.  Flap surgery can pull you a bit out of proportion, and the contouring can help restore balance to your body.  Tummy tucks and DIEP pulll a lot of skin straight down and this can make your waistline very boxy.  The NOLA docs are well-known for their sculpting to restore beautiful curves.  Dr. D did diastasis repair for me, repairing the separation of the rectus muscles caused by pregnancies, which gave me the effect of an internal corset.  This also helps restore the waistline and flatten the tummy.  All of these extra perks are a silver lining to the need for breast reconstruction. 

Study the before and after photos online for symmetry, nicely curved inframmary folds, shape, etc....when you look at them with a very critical eye, you'll see which doctors are producing the very best results.

Sandy

Hi glander -- I'm having a consult with Dr Craigie on Aug. 10 about DIEP.  Also, Dr. Marga Massey is calling me today for a phone consult. She'll be back in Charleston Sept 27-Oct 14, so I could possibly have DIEP with her. Found out my insurance covers all drs and hosp if I go with Craigie, but only hosp if I go with Massey (but her office says they work wonders with insurance companies and getting them to comply).

Lee