Diep 2012

Lee_S

Ladies,

Please help, I am melting down today.  I have to make a decision on DIEP or implants.  I think DIEP will be better but with all post out there I am not sure.  Does anyone regret their decision?

fredntan

You could always start with implants and if you have troubles could do diep.

I dont really have choice. I just want my boobs back

Chris13

I am very pleased with my DIEP. You have a "real" breast! Of course others have different views, but looks like those who have gone with DIEP are satisfied.

Kd6blk

If you get implants, you have to have them replaced about every 10 years or so. They can break. They also limit your activity level I am told for working out as they can slip out of the pocket. For me, I did not want limitations. I also never wanted implants if I had a choice. We all are different.

The surgery is much easier for implants. Some folks are limited to implants because of no donor flesh.

When I went for my blood work for my Diep FLap, the blood tech for the place PRMA sent us told me he has met many woman from PRMA going for Diep Flap surgery like me. Sure I was nervous, but I had seen the end results from my friend who went to NOLA for hers and wow, they look so wonderful, well this guy told me that the women never had any regrets and were so pleased with their results. I never even asked him anything and he just offered this up and it so helped me. The man saw women before both Phase 1 and Phase 2, so I appreciated his input. He does not work for PRMA.

We are all so furtunate to have choices. I have to say I am a huge baby when it comes to medical stuff. I had to have a knee replacement in January, only to turn around and face breast cancer. I am so happy I know about DIEP because my new breasts look amazing already and this is Phase 1.

If you have loving support, you will be fine. Don't let fear dictate your life. Pick the one you want and know that the strength you need will come along the way. Big hugs and good luck.

Lisa

Lee_S

Thank you!

I have called to schedule my DIEP surgery.  I am waiting for a call back. sigh...

Downey30

Lee. S, I know the decisions are so tough. I will say that I started with implant which equalled three surgeries and still had a failure on one side. I am now past S-Gap and Diep surgery. I will have my stage 2 in a couple of weeks with Dr Massey. It is really a great feeling to have your own tissue that is warm and jiggly. The recovery is more challenging but can be done. I wish very much that I would have started with my own tissue but was told I did not have enough fat. Dr. M found enough. Best wishes with your decision.

jenlee

Lee S, Congratulations with your decision, I'm almost 100% certain you'll be pleased with your decision. I have never had a single regret.  I agonized so much about this decision, but there is no question about how pleased I am.  Three weeks out from my DIEP, women who had tissue expanders at the same time were still dealing with fills and had exchange surgery ahead of them.  The recovery has certainly been doable for me!  Heading back in a few weeks for my stage 2 surgery where the tweak whatever needs to be done and make it all pretty.  Not really that much tweaking to be done.  

mags20487

Well I finally got the call from the Dr's office today about how much $$$ I would have to pay for the Diep.  I almost started to cry.  $30,000...holy crap.  Where is that coming from.  She said that my insurance is Out of network and only pays 50%.  But looking at my policy it says Out of pocket max for out of network is $5000.  So aggravating to say the least.  I may have to stay here in Florida to have it done instead of getting to go to NOLA.  I really wanted it there with Dr Massey as she would be sure to take care of my LE too.  Sucky monkey

Maggie

bdavis

Hi Maggie.. I can't speak for Dr Massey, but in general, if you are out of network it works against your out of network coinsurance, but the max is what is considered reasonable and customary... then the docs can charge the balance, and that may be how you get to 30k... I know the other NOLA docs have a financial aid form, where you say what you can afford. ALSO, you may be able to petition for it to be counted as IN network. I know that with Aetna, no doctor is actually in network. Luckily for me, I have a third part coverage that processes the claim like it is in network.

I would submit your paperwork to the NOLA docs and see what they can do for you also.

Lee_S.. I did a lot of homework and also felt that the implant route was a process, not a simple as surgery and you're done... I looked at it as one surgery that had a 2-3 week down time (I did take 8 weeks off work for full recovery) with a flap surgery OR easier surgery with multiple procedures (fills) that are painful and can take 6 months for all the fills to be complete (implants).. and considering I didn't want implants, especially since they need replacing every 10 years, can rupture, can be painful and heavy, and don't look as natural etc and the lengthy process, I have no regrets for choosing the flap surgery.

sptmm62

Hi Guys, just wanted to drop in quick and introduce myself.  I have been lurking and reading your posts for about a month and I want to say thank you all for opening up about your experiences for the rest of us to read.  It is very helpful to have some idea what I will be up against. 

I will be having a BMX with DIEP reconstruction at the end of October, so I will be looking to everyone for advice and expectations as I heal.  I am a little scared of the pain and the length of the recovery, but I am relieved now that I have made the decision and I feel it is definitely the right choice for me, I should have done it when the recommendation was first made when I was diagnosed.  But, that is all water under the bridge, right?  No sense obsessing over it. 

I do have one quick question that I would like to ask of anyone out there that had very little tummy fat when having the DIEP.  I have lost 80 lbs in the past two years, working out a lot with good results.  The PS does feel like I have enough skin and fat however to give me a B cup, which is what I am now so I am okay with that. My BMI is about 22.5 but because of the weight loss I have a lot of extra skin on my abdomen, just not much fat. (I could definitely use that tummy tuck!) Some of you have described being stitched "too tight", is that normal if you have limited abdominal fat or does it depend on the surgeon?  I have to say that worries me.     

Again, thanks for your openness, it really helps to have a reference when you are going into this surgery. 

SuzyBlue

I really feel for you ladies who have to struggle to get your surgeries paid for, as if you don't have enough on your plates as it is. We are very fortunate here in New Zealand that everything is paid for in the health system, though sometimes the waiting times are too long. There are plenty of women on here with excellent advice and experience in how to work the system, I hope Mags that you find a way to counter this first blow by the insurance company.

bdavis

sptmm62

I did not have enough fat in my abs to get DIEP, so I had hip flaps... I then had a complication and they needed to redo the right side, and they did the DIEP flap for the one side.... If I had not had enough in the hips, my doc was going to do a Body Lift.. using both the hip and ab fat and stacking the flaps. So if you are concerned, you should ask about using your hips (butt). Very few doctors do this,.. I traveled to New Orleans to have it done. In the end, I did have a very tight belly, but it has loosened up over the past year.

mags20487

thanks ladies for the support.  Just was shocked when I heard that figure.  I have to financial form from Vickie at the hospital and will send it in tomorrow.  I may also see if any of the other hospitals that Dr Massey uses are "IN" network for me

Maggie

howhm02l

Unusual question - I am almost 3 weeks post DIEP. Met with PS yesterday, and he said I could wear camisole with shelf bra for support but no compression. I am having trouble determining what constitutes no compression since I still cannot totally feel the girls. I had skin sparing BMX so I can feel the skin up top - I just don't want to do any damage. Any recommendations for what constitutes a light support camisole. I was very large chested before so light support was not in my wardrobe.



I hope this makes sense. . . Thanks in advance!

J-Bug

For those who are making decisions about DIEP: I know that some of you have heard some difficult stories from me about incisions opening up, etc. My PS has told me that the reason that the incision opened up under my right breast is that it is the radiated side. So it has been wide open for a couple of weeks and draining a lot. But I will get it stitched back closed tomorrow morning. He is saying that this can be fixed, it just takes longer to heal because of the radiated skin. So, I see a lot of you not having radiation listed as a treatment, which may reduce the chances of that happening to you.

fredntan

How many months do you ll think before i can wear a pretty bra from victorias secret? I have allways wanted towear those sexy little lacy bras from VS. My dd workscthere. I am hoping its only 2 months. Omg i cant wait. I am so sick od this damned TE. And this one floppy boob. These last days are going to dragg



I cant remember if i asked before.



But will i get that omg dont touch my arm sensation? It was many months after last years rt mastuntil my DH could hold my rt hand or touch that arm.

goldlining

howhm02l I think the "no compression" would be those bras at Walmart that are just stretchy knit (e.g., "ahh bra" type of thing). I was large too and those bras just don't make any sense to me at all. I can't see how they do any shaping. Sounds like what your PS doesn't want you in is a sports bra.

sptmm62 When I decided on DIEP, I thought how fortunate it was that I had unintentionally been cultivating a crop of future boobs on my abdomen ever since my 16 yo daughter was born, but when the surgeon saw me after I woke up, he said "you were not so fat" perhaps meaning, I guess, that it wasn't fat, it was skin. I was reassembled very tight, but when I say tight, I don't mean "too" tight. My abdomen looks fantastic now that I got stretched back out. I only wanted B and I have C. If the surgeon thinks your B is attainable, don't worry about the ab tightness. It does stretch in time. Get physio and develop your core strength (ahead of time if you can).

Like SuzyBlue, my DIEP was entirely covered by the health plan where I am in Canada. Those of us with public insurance feel for the ladies who have to do so much administrivia just to get the care they want, or having your insurer limit your choices. I waited a reasonable time given that I already had my mx and was just a prophylactic plus bilateral recon, perhaps 6mos. but other ladies having immediate DIEP were seen faster. Wish you all smooth sailing with your insurance negotiations.

 

dltnhm

SuzyBlue - I feel for those who have trouble paying for surgeries. I do want to point out, however, that the most recent example here does not appear to be a problem with our US system of healthcare or individual insurance. There are most likely very competent surgeons in FL (pethaps not in Melbourne) who can do a DIEP for Maggie. They would, in all likelihood, be in network, and there would not be this huge $$ amount quoted for her portion. These surgeons may not be associated with NOLA, but it is important to realize and take note that there are other competent, trained, and gifted surgeons who perform DIEP reconstruction - not just those associated with NOLA.



There are many other women besides myself that were able to find surgeons skilled in microsurgical techniques who practice DIEP reconstruction. We didn't have to leave our home states to get excellent care and excellent results.



This is not meant to take anything away from the surgeons at NOLA. And it is possible that Maggie has a unique situation of which I unaware.

bdavis

dltnhm

I want to mention that with Aetna, no doctor was considered IN network for me, none. And yet they cover DIEP. So I found that to be baffling. How can they cover a procedure, but no doctors who perform it. Luckily for me, I have a third party insurance, and my surgery was covered like it was In network, but used out of network coinsurance.  I didn't even know I had this coverage until the doctors in New Orleans told me. I went to a local PS who was in network, but he didn't do DIEPs (no doctor within 50 miles of me does)... and I went to NYC to see Dr Allen (the closest to me) and he would have cost me a fortune. So I feel I hit the lottery with NOLA, as they took my insurance and were very skilled.I say this because perhaps Maggie doesn't have a skilled surgeon by her, or perhaps she wants a surgeon who specializes in LE (which I think she mentioned)... and Dr Massey is a leader in her field with node transfer.

Beckers

Thought I would mention I found wonderful light compression bras (more like sports bra style). They are microfiber so they are very soft. I found them at Kohls and they are made by Bali. Almost have a nylon look and they are stretchy enough to easily get into, as I don't have full shoulder range of motion yet.



Good luck tomorrow JBug!!

J-Bug

Uuuugh!! My husband just changed bandages tonight and it looks like the right side has opened significantly more and now it looks like the left side is open as well. I do have to add, I have heard over and over, this plastic surgeon is the best in the state, so that is not my concern. I will keep you guys posted after surgery tomorrow.

sptmm62

Thanks everyone for your reassurances. 

Lee S: Hope you are feeling better now that you have made your choice. 

Mags:  My plastic surgeon is out of network for me and I have not out of network benefits, but his office staff has gotten approval from my insurance company to use him.  It is my understanding that for something as specialized as this, they don't have plastic surgeons in network that are qualified so the approve the out of network.  But the people at NOLA should be experienced in that, so you might be able to get approval anyway.

J-Bugs:  Good luck this morning.  I was radiated, so I would be particularly interested if there was anything else in your experience that I should be looking out for.

Chris13

Re insurance, I do know breast cancer surgery and reconstruction MUST be provided by insurance, due to a Federal law (sorry, can't quote it, it is from the '80s I believe). So you may be able to push your insurance a bit more, although out-of-network can be the exception, and as pointed out here, there will be qualified micro surgeons in FL.

On my way to the PS for my stage 2 consult..... healed well, FOOB looks like a real one except for the missing nipple. I do have a hard-ish lump, however, that the PS initially said was NOT necrosis. Idiot I am, didn't ask him what it was. Guess I'll have a better idea today. For some reason I have a twitch in eyelid..... But DIEP was so worth it. 

mags20487

this is really just the first hurdle for my recon. ladies.  I am not going away without a fight. I also had to fight the insurance during my chemo which was absolutely uncalled for and am still fighting to get reimbursed for my last 3 chemos.  My Le is what brought me to NOLA and Dr Massey.  It is out of control in the left arm now and that is why I chose her expertise.  The nearest doc that does them here in Florida is over 70 miles away and is not an expert on LE.  She also has priviledges at Roper Hosp in Charleston and that hospital IS in network.  So it may just be a changing of the hospital choice.  My insurance does cover the procedure but my OOP max for OON is only supposed to be $5000 so not sure where the $30000 is coming from but rest assured I will find out

Mags--insurance companies rule the world

bdavis

I can try and answer that question, but of course I can't say for sure.. You can have an OOP of 5k but that is of reasonable and customary. So if the procedure is 100k and the insurance company feels it should cost 75k, then you pay your 5k OOP plus 25k for above and beyond. Now, if you can find a doctor who won't balance bill, then you only pay the 5k... Or in my case I have a third party plan, which limits the doctors from balance billing. So I only had to pay the OOP max, which by the time I had my surgery was down from 3650 to 1800... so I paid 1800...

mags20487

Thanks Bdavis...I kind of knew that is what it was...sending the financial paperwork in so hopefully I will know more before the end of the week

Mags

mags20487

Update...the insurance and hospital have worked something out so I am NOLA bound November 1st...my emotions are kicking in now...not sure how to feel

Mags

dltnhm

Well that's great for you Mags. Good that they worked it all out! Hope that they are able to take care of your LE problems. Will you being having a node transplant then? I don't know too much about that.

Diana

fredntan

Thats wonderful mags. You can start the countdown. I am driving myself mad with my wait. 19 more days until prma. Had my preops today. The girl drawing my labs had heard of them!

Hoya03mom

I have a small area (about the size of a silver dollar).  PS said it was most likely fat necrosis at the edge of the flap and to massage with oil daily and it should soften up.  Did anyone else have this?  Also...boobs still feel swollen, esp sides that hit arms and still feel heavy...does this go away or do I just learn to live with it.  I am 8 weeks out today.