DIEP 2011

Snobird

I spoke with 3 different PS and none of them would do reconstruction with TRAM or DIEP until at least 6 months post Radiation. I ended up doing a DIEP 4 years after radiation because of a recurrance and decision to do a BMX. I had absolutely no skin or tissue issues post DIEP. My personal opinion is that I would wait until 6 mos. to a year post radiation in order to have the best finished product rather than risk flap failure due to radiated skin issues. Good Luck with your decision.

LuvRVing

Thanks, everyone, for your wisdom and experience.

It is unlikely that my breast will be radiated...I had Mammosite last July (2010) and I am pretty sure that means I can't have radiation there again.  I will need my axilla and intramammary nodes cooked, and I think that could wait.  I had my BMX in April so I am well-healed and slightly expanded from the TEs. 

Michelle

treesprite

ladym13: So glad to hear your ultrasound

turned out well! that has to be a relief for you!

Kay_G

It is really interesting that we've found yet another item where the PS's have different rules.  When I first saw the BS, she immediately talked about getting reconstruction done right away.  My BS and PS work together often as a "team".  I think the only reason she suggested getting the reconstruction immediately was that she just said a lot of women would like that.  I know I felt bad enough when I saw the breast with a "flap" where my nipple used to be.  I think I would have felt worse waking up and having only one breast.  Not that I couldn't have done it, just that I think this was a better choice for me.  Also, I was told that having one surgery and one anesthesia was better than 2 for safety and risk of complications.  Will let everyone know post rads how it stands up when I'm done rads.  But the PS has been doing it that way for patients who had radiation afterwards for quite a while.  I'm hoping she knows what she is doing.

bdavis

NJ.. I think and this is me just guessing, that when you have DIEP and get an implant, its like getting an augmented breast.. so wherever they put the implant on someone who has breasts I assume its the same for a DIEP breast.

LuvRVing

Kay - I agree with your perspective.  And I also think there are "regional" preferences for treatment.  That's why there is such a variety of treatments, the order of treatments, even what you can or cannot eat during treatment.  I'm guessing it's not consistent because no one knows, for sure, what's really best.  I thought my second oncologist in Kansas City was so totally honest when she said that, in the end, it didn't matter whether I had BMX with reconstruction first then chemo, or neo-adjuvant chemo then surgery and recon.  What she said is that she likes neo-adjuvant first because she is an oncologist!  And that the predicted outcome was the same, regardless of the order of things. 

Michelle

KatheW

Hi, I am new to this board and have UMX+ BiLat DIEP surgery scheduled next week. First, I have to say that I am amazed at what everyone here has gone through; your courage and resilience are inspiring! I wish I was brave, but I am very scared!

My newest anxiety: how much is this gonna cost?? I just found that the surgeon my PS selected to assist him does not contract with my insurance company. That means I will need to pay him directly for his services. My payment to him will be in the thousands of dollars. Is this normal? Has anyone else paid out of pocket for reconstruction? I am in LA-- home of plastic surgery--  but now I am wondering if I should consider NOLA. How does it work there? Do they take insurance? Please share your experience with me!

I posted this topic elsewhere, too, and am desparate for replies.

bdavis

Kathe... I went to NOLA... And I have Aetna... On first appearance it looks like I am not covered as the doctors in NOLA are only IN network with CIGNA, but apparently I also have something called Three Rivers... I had no idea..But I submitted my paperwork to NOLA and they research it... and they told me because I have Three Rivers, the hospital is free and the doctors are under contract with Three Rivers who then processes the claim for Aetna... so their rates were negotiated for me and then it was paid out at 75%, but again because of the contract, I only had to pay from my coinsurance so it had a maximum... In the end, I have had 3 surgeries so far this year with them, and one more in November.

For those who aren't under a contract, they have you fill out a form about ability to pay... so the amount you pay varies from person to person... Its worth sending them your info just to ask.

LuvRVing

KatheW - with all the plastic surgeons in LA, I would find it unacceptable that my own surgeon would select a "partner" out of my insurance network  You need to have a discussion immediately and get this resolved before incurring out of network costs.  Some insurance plans will pay a percentage of charges from an out of network provider.  My own (and we selected this option) will not cover anything out of network.

Reconstruction must be covered by insurance.  I don't know, I have to wonder about a surgeon who would do this to his/her patient. 

By the way, you have EVERY right to select the PS that YOU want.  So if I were you, I'd be looking at your list of in-network PSs and go see one quickly.  If your surgeon doesn't want to be in the OR with the PS you select, then they can work consecutively rather than concurrently.  This really is your choice.  It may mean a longer surgery, but it will certainly save you thousands of dollars. 

Don't let them rush you. 

Michelle

goldlining

So sad to be told today that my bilat DIEP (half delayed, half immediate) is postponed a couple of weeks, now into December. So I am back with my question about up-and-at-'em-ness:

With no complications, how much walking endurance did people have after 7 weeks if you had pretty good endurance before? Hobbling form car to house? Or up to walking 3-4 hours continuously?

Anxious mixed up emotions today. I have some lengthy walking planned as incentive to pull myself out of loafing and savouring the idleness. But now instead of 9 weeks, just 7 weeks to be up to the challenge... 

dontworrybehappy

i purposely kept my meds on the kitchen table forcing me to have to get up to take my antibiotics, my morning effexor, pain meds, they gave me stool softener and just my extra drinks in the fridge. i was walking upright by my first post-op appt. im an avid work out queen therefore my core and back muscles are very strong, i never had any back pain or the vicodin was working that well. i found a wesite with some very gentle mastectomy exercises, really just minor stretches. in the beginning just trying to do one gave me sharp pains on my right side, the side where the lymph nodes were removed. but everyday i pushed on and by week four i could do all the stretches without any pain. having worked out for years, when you feel pain from any movement you put your body through that means, thanks for thinking about me but im not really ready for that yet, come back tomorrow and well see what we can do. and youll be amazed how willing your mind and body connection will see you through, they both really want to be able to play again, just like the other kids.

Kay_G

Goldlining, sorry your surgery got delayed.  Yesterday, at 3 weeks post DIEP, I took the train home from my Herceptin treatment and walked the mile and a half from the train station to my house.  I stopped about half way and had lunch, so it was broken up into two 3/4 mile walks.  It took me longer than pre-DIEP, but didn't cause any pain or discomfort.  And I was not any kind of athlete pre-surgery.  I had been walking a lot, about 3 miles a day, but not much exercise besides that.  As soon as I got home from the hospital, on day 5, I was walking to get drinks or use the bathroom, etc.  Hardest things were getting up and down.  And I did walk hunched over too. 

angicpa

I want to thank everyone who has posted regarding wound care and healing issues. I started on Santyl, colleganase, on 8/24, on 3 spots along my donor site cut (yuck) and a tiny hole in my belly button (not so yuck). Like many of you, my doctor said nothing about nutrition. So yesterday I started working on increasing my protein intake and today started Vitamin C and Zinc supplements. 

Thank you all for sharing.

KatheW

Betsy, Wow-- you have been through a lot, congratulations on surviving it all.  I am curious, how did you initially decide to go to NOLA? Isn't there a DIEP reconstruction surgeon in Philly? How was the flight back? Does the $2000 you mention include your travel costs?

LuvRVing, I have been working with a BS I really like--she referred me to this PS, and I do like him as well. Thus far it has worked out fine (I had a MX with them in April), and both take my insurance. I am even covered with the assisting --but only at 70%. The uncovered expense will be between $4000 and $6000. Based on what Betsy said, I think it's too much. And you are right, I have choices. My treatment is over, so maybe I should just cancel this and start exploring them.

treesprite

KatheW: I would let your PS's business office know that you are not willing to pay the extra for the out of network PS, that is if you want to move forward with your main PS. My insurance has an out-of-pocket max, $5000 for in network and $7000 for out of network. My costs will max out at $5000. I think NOLA is worth looking into. Any PS should submit a pre-auth and be able to estimate your out of pocket expenses before surgery.

Angicpa: bromelain (enzyme in pineapple) is also good and lots of rest!

goldlining

Thanks Kay1963 -- that is reassuring. I was planning that as soon as I can, I would get on the treadmill at the slowest speed I needs it to be, and just walk for endurance. I did that after the uni-mx and it seriously cut the pain. The endorphin effect, I guess. I have no speed at all, but I have endurance for days, so maybe there is hope. Last weekend in a half-marathon, I passed a woman wearing a foot cast, so that was encouraging too. I wonder if she finished, but I was proud of her for starting.

Dontworrybehappy  Your philosophy sounds like mine. I figure, the body gives hints. My pace dropped since my lumpectomy and mx, and I can't rationally explain it, but I decided I would just pace myself by my heart rate, not my speed. My body is telling me something. It will go faster when it's ready to go faster.

I''m trying to stay upbeat. I don't want to go into surgery with bad vibes. At least the new date means I won't be in ICU on my birthday. 

KatheW

Kathy, I am dreading it, but I am going to call my PS tomorrow. You are right: I am not willing to pay to meet the out of network deductible. I do feel terrible: this cancellation so last minute! Why did they wait until the week before my surgery to drop this bombshell on me?? 

I am now mourning all the anxiety I have suffered in anticipation of this surgery. So many sleepless nights....

Anybody know the wait time for NOLA?

daisy4ever

KatheW: Are you willing/able to go out to Newport Beach? I had a NSM and bilateral DIEP in June 2011. My doctors did a fabulous job. They operated out of Hoag. I have a PPO. My breast surgeon, Dr. Helen Mabry, is amazing and down to earth. She worked with Dr. Justin West and Dr. Brian Dickinson. They worked through more than 12 hours of surgery, and now I have warm, squishy new boobs--and I love them!



Have you called your insurance to explain the situation? If your doctor is asking for an assistant, they may be willing to still cover the fee. Ask before the surgery. Ask for a special circumstance. Explain how your doctor works with this other doctor as a team, and that there is a need for both doctors. I found it helpful to call and speak to my insurance several times. Keep a record of when you call and who you spoke with for your records.

treesprite

KatheW: have faith that all work out perfectly and then proceed with whatever action feels right to you. Let the office people know that you need assistance working this out. You have nothing to feel bad about, it is unfair for them to spring this on you and no one would blame you for cancelling if that is what needs to happen, but things may work out for next week.Try to get a good nights sleep; you can't do anything tonight and you may have a whole new feeling about things in the morning. I went through a couple of crisis moments on this journey and everything ended up working out perfectly, I just didn't know it until after the fact.

bdavis

Kathe... I chose NOLA because even being near Philly and NYC the NOLA docs got better reviews... Haven't found anyone who is dissatisfied with their work... And getting to Philly or NYC means over an hour and a half door to door... So what's a three hour flight...

About expense of travel.... I paid for my round trip flight for the first surgery, but when i had a complication NOLA covers all expenses including flight for me, flight for my escort and hotel post hospital... And these were last minute bookings that cost them $$$ per ticket... They send a luxury car to the airport to collect you... Even when its not a complication... Top notch operation...

Another reason i chose NOLA is that their hospital is dedicated just to this type of surgery... They only have 17 rooms... And between both my trips i was the only patient in the hospital for a random night here and there... This is what they do... They are not a big inpersonal hospital and i love that... The chef would come in and tell me the specials etc... All very personal.

Goldlining...i am doing the avon walk next month... 40 miles... I am sure i will be walking a mile and hitching a ride then walking a mile etc... I have had a bumpy road with complications though... As far as the diep and standing upright... I was totally hunched day 1, but the nurses thought by day two i was upright... My back hurt for about 4 days, but pain meds helped... Now at 2 weeks, i am fine, but get tired and winded...

JustLaura

Kathe - I also went to NOLA (from Colorado) and am very happy with my results. They told me exactly how much it would be before my surgery - for both Stage 1 and Stage 2. NOLA does get busy at the end of the year though since many are trying to get all of their surgeries into the same year for deductible reasons. There is a "NOLA in September?" thread here if you want to check out the stories.  Don't feel bad about your current PS - they didn't tell you until just recently. You need time to digest that info and figure out what you are going to do. You are only doing this last minute because of their new information. Good luck - I'm sure you will find the perfect situation for you!

Goldlining -  I was able to start walking my dogs 2 miles in the morning and 1 mile in the evening at about 3 weeks post DIEP. I wasn't at my usual pace - but I was out walking (and it felt awesome). If I could not walk outside for some reason (weather) I was able to do the stationary bike or treadmill at home.  

Kay_G

KatheW, I just wanted to chime in.  I agree with everyone else, you have absolutely nothing to feel badly about!  They should have told you about the costs much sooner.  Nothing wrong on your part at all.  Also, doctors are so used to having their schedules change.  Patients get colds or other illnesses and surgeries have to be delayed and rescheduled.  Nothing out of the ordinary at all.  But even so, it's their own fault. 

Best of luck to you.  I am sure all will work out for the best. 

Betsy, good to hear no more complications for you.  Glad that NOLA took such good care of you both medically and financially after the complications.  All docs should do that.  It would probably go a long way to reducing all the medical law suits if they would just do that from the beginning.

KatheW

 Well, I called my PS this morning and told them I am NOT willing to pay the assisting surgeon's fee! The office manager was very pleasant--she is always very pleasant-- and told me my PS only works with this out-of -network surgeon for DIEP, but they are still trying to "make it work for me." Yesterday that meant I didn't have to pay a $4600 deposit up front, and I could follow a no interest payment plan. Not sure what that means today.

Daisy--Thanks for letting me know about Hoag and your experience there. That is certainly much closer to me than NOLA! I am so glad that your surgery went smoothly and that you got good results. I am concerned that it took the surgeons 12 hours to complete it. Did you have bmx at the same time, and, if so, were the surgeons able to work simultaneously? What was it like waking up after 12 hours under anesthesia??

How many people on this board were under anesthesia for more than 6 hours??

Treesprite--Thanks for your optimistic words; I am trying to keep the faith.

Betsy--You sound like you are happy with your care despite the complications. That hospital is truly a special place. I think I would be okay with going there even with the travel hassles. I am still wondering how you felt on the flight home, but maybe you are not home yet? You just had the surgery two weeks ago, do you still have drains?

Laura--I see you are 3 months out from surgery, and you seem happy with everything at NOLA, too. How did you do on your flight home? How are you feeling now?

Betsy and Laura--How long do they keep you at NOLA after surgery and before sending you to the airport? Or is there some sort of intermediary place to stay (hotel??) before you fly home??

Kay-- Thanks for mentioning that doctors schedules change all the time, it makes sense. I didn't feel as bad telling them I was going to cancel! I am still wondering why no one at the PS office told me about this sooner.

mrsnjband

KatheW,

The doctor I call PS#2, when I signed paper work it said I had to be sure that all procedures were within my group.  How the heck was I suppose to do that?

The doctor who did my DIEP, PS#3, said they would make sure everyone & everything involved with my surgery would be in my group.  What a difference in attitude & care.

I love my doctor & she did an amazing job.  I had a lot of damage from radiation so I tried to not get my hopes up too high.  But she did an amazing job.  I'm having some issues now but it is because of the radiated skin.  

I'm just glad I had met my out of pocket expense for the year so this surgery is paid for. NJ 

Kay_G

No problem, glad I eased your mind a little. I had three different surgical dates scheduled. I had the original date scheduled for 4 weeks after I finished chemo. Then found out I was allergic to taxol. They gave me a new scheduled date earlier in case I wasn't able to tolerate taxotere either. And a third after a full taxotere regimen. Taxotere was every three weeks instead of every two which taxol was so surgery got moved a month. I am sure another patient got my original date and they were probably thrilled to have their surgery moved up earlier.

JustLaura

KatheW - It is usually a 10 day stay in NOLA. I arrived over the weekend and we played tourists on Sunday, Monday was my pre-op, Tuesday was my surgery. Then I stayed in the hospital 4 nights (but I had initially planned 3 but had low blood pressure so stayed an extra night). Saturday I moved to a hotel (there is a Hope Lodge there free to cancer patients also, I stayed in Homewood Suites). My post-op appt was Monday. I flew home on Tuesday. NOLA supplies a car service to take you to anything having to do with your surgery (to/from airport, appts, hospital,etc) we were on our own car-wise that Sunday before surgery - but we could walk every where so we did not need to do a rental car. The Homewood Suites was downtown so we were able to walk where we needed to go there too. Several restaurants within a few blocks which I could easily get to.

Pre-op at NOLA is a full day affair (in addition to pre-op I did at home chest x-ray, blood test, urine test, and EKG). I had appts with the PT, the plastic surgeon, the breast surgeon (I was having my BMX also), the nursing staff, and they do a CT scan on everyone if you are having DIEP. I could not eat until after the CT scan but that night we were able to go out to a nice dinner (no alcohol for me) and then turn in early. I had to be at the hospital at 6am. 

I was lucky and got all 4 of my drains out at my post-op - this is quite unusual but I wasn't going to complain (and I didn't ask - the doc just said these can all be removed)! This made the flight home so much easier than it would have been. NOLA had given me a note to use with TSA explaining my drains so they would not touch them - but I didn't end up needing it. I did not use a wheelchair in either the NOLA or Colorado DIA airport (and DIA is HUGE). I was able to walk myself. We got bulkhead seats in the plane and I was perfectly comfortable. I did need to get up once an hour and walk down the aisle (to avoid blood clots) - but this wasn't a problem We had a 2 1/2 hour flight and I did it twice. I was beyond exhausted when we got home but that just made the recliner I had to sleep in even a more welcome sight. So over all it was fine. I will be doing it again for my Stage 2 in October.

How do I feel? I feel great! I went back to work part-time at 7 weeks (desk job) and full-time 3 weeks later. Sitting all day was tough at first. I found myself having to move a lot to different positions and actually found myself in some really weird ones trying to get comfortable. I actually felt more comfortable standing (which is weird because at first standing is so painful). But I'm acclimated now and sitting is not too bad. My swelling has gone done significantly, especially in the last 2 weeks. I don't know but I wonder if that isn't tied to getting my drains out so early - it took FOREVER for my swelling between my incision and my breasts to go down. I am wearing all of my old clothes now too - I wore sundresses and loose waists all summer but just recently can snap and zip my jeans! I still get tired. I still feel tight in my stomach. I still am not completely used to numb breasts - but that is my 'new normal' and I am adjusting.

I hope that this helps! 

bdavis

Kathe...

For my first surgery, I flew down and stayed with a friend one night, then stayed at hte Hope Lodge for a night (free) and then was in the hospital for 5 nights... upon discharge, I went back to the Hope Lodge for 3 nights, and then by choice stayed an extra 3 nights at the Homewood Suites, as my husband flew done to bring me home and I wanted a few days in the city with him.

For my secon and third surgeries, which were unplanned, I flew down (still with drains from first surgery) and stayed at the hospital for two whole weeks. I did not have anyone with me and they weren't lettin gme go until I had an escort... I had planned to have an escort come down 5 days after my DIEP flap, but then Irene happened, so by the time my friend could come down I was at SCSH for two weeks, and then we stayed at the Homewood Suites for two nights... The Center's car service will drive you to and from the hotel and to and from the airport.

So... with drains, I flew three times, twice with someone and once alone. It was totally fine. For the first flight I got Continental to give me the bulkhead set for free, so I had extra leg room... On my flight home the second time, it was a last minute booking due to Irene so I go the seat in front of the emergency exit and it didn't recline... I wouldn't do that again, surgery or not.

If money is an issue, the Hope Lodge is a viable option. I found the beds to be simple and only two pillows, but apparently Drew Breese is donating hospital beds... so maybe you would luck out.

RetiredLibby

KatheW, I was under anesthesia for 20 hours, but that is an over-the-top exception. I am a very free bleeder and bruise easily, and it took a long time for the PS to make the capillaries stay reconnected. That being said, I suffered zero ill effects from the anesthesia - and this was my first time ever under general anesthesia and first time having major surgery. I am 54 and have asthma and atrial fibrillation, and had no problems with either condition. Like flying, it is the takeoff and landing that can be dicey .... And I had no problems. I am 16 days out, have had 5 out of 6 drains removed, am walking almost upright. I am still tired, but that is to be expected. Incisions are healing beautifully and PS is thrilled with my progress. My biggest problem was that I am exceptionally intolerant of narcotic pain meds and had hallucinations on dilaudid. I was sick and miserable until DH insisted they stop the dilaudid. We went to Tylenol 3 after he got me out of the hospital and *poof* I was all better. I came out of surgery on a Wednesday, had my last dilaudid on Saturday following, and my last Tylenol 3 on the Tuesday after that. I have only had the occasional regular-strength Tylenol since. I had my DIEP at a hospital 6 blocks from my house in Arlington, VA, with a surgeon who trained at Hopkins & Mercy in Baltimore.

c8ndygr1

@KatheW - I had a bilateral skin-sparing mastectomy (2 hrs) then DIEP reconstruction (8.5) and 3 hrs in recovery before moving to ICU. I didn't actually wake up until I got to the ICU. That was the first thing I remember seeing following surgery 13.5 hours later. I was not aware I had been out that long. I didn't have any problems with anesthesia or pain meds or recovery. Get a PS who has alot of experience with DIEP and microsurgery. I wish you the best. You will find a ton of helpful information on this thread. Good luck to you. (My Stage 2 is Monday. I can't wait to see how that turns out.)

daisy4ever

KatheW: I had a bi-lateral mastectomy (skin and nipple sparing) and the DIEP done all at once. I have a history of DCIS and LCIS, and ADH. I wanted to do it all at once. Dr. Mabry, my breast surgeon, removed all of my breast tissue on both sides. While she did this, Dr. Dickinson and Dr. West began removing the abdominal flap for the DIEP. When I woke up in ICU the first thing I did was look at my boobs. I had new ones and I felt tremendous relief at making it through the surgery and having my boobs. I did fine the first two days. Day 3 was horrible. I think this is when my headaches got to me. I was in a car accident years ago, and I get these headaches when my neck is turned a certain way. I think the surgery was hard on my neck, and after the drugs wore off this pain made me sick. I felt nauseated. Anyway, it has been a little over 2 months since the surgery. I have forgotten all about the aches and pains of those first weeks. I love my body, even though it is different. I am happy, and I have only good things to say about the whole experience. Hoag Hospital is awesome. I received excellent care, and even had a view of the beach from my recovery room. What comes to my mind is that I hope you are at peace. There are so many qualified doctors and great hospitals, but part of this is about you being ready emotionally and spiritually--and I hope your doctors have earned your trust. I was nervous about the surgery, especially the week before surgery. I thought about my life and death, and if I could afford all of the deductibles. I hope you are getting the answers and direction you need. Do what is right for you. Please feel free to ask me anything.