Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

2018 DIEP Surgery

1356779

Comments

  • TWills
    TWills Member Posts: 509
    edited January 2018

    Aguilegia, thank you, that's kinda what I was thinking.

    I'm tall so I have a longer waist line so I'm hoping that helps some. Maybe I'll take a pain pill and wax as much as possible before my surgery to thin that stuff out some before surgery! Lol

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited January 2018

    Hello, I have an appointment with the plastic surgeon on Monday, I am leaning towards asking for the DIEP surgery. Any advice on what questions I should ask?

  • TWills
    TWills Member Posts: 509
    edited January 2018

    Elijahgirl, I know someone that has already had the surgery will chime in but I think one of the most important questions is how many of these surgeries have they done and do they do them regularly and successfully.I chose my surgeon because that's all he does and he's done a lot successfully.

  • Lula73
    Lula73 Member Posts: 705
    edited January 2018

    Elijahgirl-I posted a list of questions awhile back on the 2017 thread. I’ll see if I can find them.

    TWills- on the tummy tuck question...every doc does it different. Some do real tummy tuck with plication and everything. Others don’t and claim it’s cosmetic and say they won’t get paid for it. Really they just don’t know how to bill it so it will get paid.

  • TWills
    TWills Member Posts: 509
    edited January 2018

    Oh lordy Lula73, I don't EVEN know what I don't know!! I had to google that.

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited January 2018

    Hi TWills, thanks for responding that is definitely one of the questions I will ask, I am in the military however so my choices are limited.

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited January 2018

    Lula73, thank you I will definitely keep a lookout for it. Every bit of information is appreciated

  • Lula73
    Lula73 Member Posts: 705
    edited January 2018

    Elijahgirl- I finally found those questions! They weren’t where I thought and they were put out there as an answer to a different question so please excuse how they’re worded. Here’s the excerpt from the original post with additional comments/advice from that previous post at the end:

    Did they tell you that if the cancer shows up in the other breast you can't go to your abdomen a 2nd time for reconstruction (if choosing UMX w/DIEP recon)? Did they show you their before and after photos? Did they share with you how many of this exact procedure they personally do every year? How about their flap failure rate? Their infection rate? What are the reviews of this dr and their practice online? Do you need chemo and/or radiation post-mastectomy and if so how does that play with the reconstruction you're planning? Did you know that your insurance should allow you to go out area (to anywhere you want to go in the US) if you don't have anyone within a certain mile radius who does this surgery? And that they will likely cover you at a higher reimbursement rate even if the dr you choose is out of network because of the out of area stipulation?Oh and how about if you opt to travel for the surgery those expenses are tax deductible as long as you hang onto your receipts?

    I'm not trying to scare you. I'm pointing out very important questions that should be resolved before making the decision on which dr to select. Every post I've seen online where doctors hop online and respond say to ask all of these questions before making the decision. After all, you likely would prefer to have the surgeon whose done over 1,000 of these exact procedures with a very low failure and infection rate vs one whose only done 50 with 10% of greater failure/infection rate. Ideally they need to be doing this exact procedure at the very least once a week if not more often. This is a major procedure combined with microsurgery that requires a lot of skill and patience mixed with a eye for artistry with the womanly human form. And like anything else, practice makes perfect.

    Those before and after pics will tell a very good story. If they give you any excuses on why they can't show you any (including HIPPA), move on to another dr ASAP. When you're looking at the photos, don't fall into the trap of comparing them with a mastectomy photo without reconstruction. Compare them with other photos of the exact same procedure from other surgeons. I can tell you firsthand that the really good surgeons have results where you can barely tell anything has been done if at all and the new breasts look 100% natural -even with nipple reconstruction and/or tattooing. If you need direction on seeing what excellent results look like for these types of procedures, check out the Center for Breast Restoration Surgery website at breastcenter com. I'm living proof that those photos are accurate. And my recovery has been nothing like the many "standard" mastectomy with/without reconstruction stories or the "horror" stories online. I'm either the exception to the rule or the surgeons at the center are REALLY REALLY good (hint: it's the surgeons).

    I know this diagnosis is hard to take, it's scary as all get out in so many ways and I'm sorry any of us have to deal with it. But YOU are WORTH taking the time to ensure you're choosing the path that will give you the best outcomes long term physically, emotionally, mentally and cosmetically. YOU DESERVE to have the best prognosis with physical results you don't just "live with" but are proud enough of to wear a skimpy bathing suit without a coverup if you choose to.

  • jbdayton
    jbdayton Member Posts: 163
    edited January 2018

    I answered this for TWills in the 2017 thread as well.

    Idid not get plication and did not know to ask about it. I still have more upper belly than I like. Of course during phase 2 some of my fat in my upper torso was used. My original PS said that it is considered cosmetic and if done during the DIEP surgery insurance could deny the procedure. I may see about a true tummy tuck someday. With very little lower abdomen I do sometimes have trouble keeping my jeans up at the waist.

    I went to PRMA for a revision to my breasts and scar revision to my abdomen. I asked this surgeon about plication and he said they do plication, if necessary, during the DIEP but could not do it for a revision. I asked them if they could fix my bulge to the left of my belly button. They did fix it but 6 months later I got a bulge above my belly button. My OB/GYN said I appear to have a weakened abdominal wall and a possible umbilical hernia.

    I would ask your PS if they can do plication. It doesn't hurt to ask.

    Good luck and let us know how it goes.

  • TWills
    TWills Member Posts: 509
    edited January 2018

    Jbdayton, thank you, very informative!

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited January 2018

    One important piece of advice - DO NOT shave "down there" because if you nick yourself, it will open the door to infection and do not wax. When I woke up, I realized that a surgical nurse removed all hair with a straight razor. It felt great!!

    I thought a tummy tuck was part of the surgery. NOT. Even though some of my Buddha belly was used, I still have the belly. A lot of PS photos show photos of women with flat tummies, but if you have had any abdominal surgery in the past - then as jbdayton stated - the wall is weakened so ask PS



  • TWills
    TWills Member Posts: 509
    edited January 2018

    Humm, I had a laparoscopic appendectomy 24 years ago so I wonder if that will effect anything. I have belly fat for sure but not a big pooch, I mean in clothing it's not really there. I've got the typical 40 year old spread. Lol

    I figured any waxing would be well before surgery, I wouldn't do it just before. Looks like I have a lot more questions for my surgeon!

  • Runrcrb
    Runrcrb Member Posts: 202
    edited January 2018

    Twills - you are right - lots of questions for your surgeon. Write them down. If you can, take a friend to capture notes. Your pre-op instructions will say don't shave anything in the days preceding surgery. I woke up to find half of my pubic area shaved. I hadn't even thought about it prior to surgery. It was fine and actually where the drain lines were. I had assumed the drains would be in the ab incision.

    RE the tummy tuck questions. I have no idea what a "real" tummy tuck looks like/does. At one of my 3-week post-op visit, I had my surgeon re-explain what he had done (I had read the surgical report on line). In that conversation he did explain that in a straight tummy tuck, the incision would have been 1/2-1" lower but with DIEP, you need to go where the blood vessels are. Honestly, I haven't worn a bikini in over 30 years and am not planning to start now so I'm not too concerned with where the scar is.

    RE all the questions about is there enough fat to make a breast or two breasts: when discussing this with my surgeon at the beginning, when I was still deciding between single or double mastectomy, he said this: next time you're in the shower, bend over at the waist and grab the belly fat - that's how much there is. I had one hand on that and the other on my breast and it felt about the same. He had said he could do two breasts and so my follow up question was on that topic - the answer was - yes, we can do two but they'd be noticeably smaller than what I had.

    If you have breast cancer in one breast and no genetic markers to indicate high risk for breast cancer in the second breast, the decision for a prophylactic mastectomy is highly personal. My risk for recurrence is low so I opted for single, which reduced my risk of post surgical complications (fewer surgical sites).

  • Lula73
    Lula73 Member Posts: 705
    edited January 2018

    In addition to asking about true tummy tuck/plication, when looking at your surgeons before and after pics see if any of them have your shape and what their tummy looks like after. If you are more of a pear shape odds are your upper abdomen is somewhat flat compared to your lower abdomen and hips. When they pull the tissue together they are using that upper abdominal tissue which has far less fat and is flatter. If you’re more of an apple shape then odds are your upper abdomen is rounded out and your lower is rounded in. When they pull the tissue together the upper abdomen is still rounded out so the results after stage 1 won’t be as flat as a pear shape would be but should be somewhat flatter than before. abdominal lipo can be done during stage 2 to improve the appearance. Plication (if needed & provided muscle is strong enough/not damaged) would also improve it. Keep in mind that those after pics are after stage 2.

    Another component is just how much tissue they take. Obviously a woman who has a normal BMI has far less tissue than someone with an overweight BMI, and they have far less than someone with an obese BMI and so on. Some docs are focused on the whole body outcome and will likely take more while others are only focused on the breasts and will likely take less tummy and ignore the harvest area in stage 2 or just do dog ears and scar revision. Asking about your doc’s plan for how much tissue to take in stage 1 and what all he does (that is not optional paid out of pocket) during stage 2 is important to get that final result you are happy with and expecting. If you see a before & after pic that’s your shape and the After is remarkably different from others, ask if it is all due to DIEP with all procedures covered by insurance.

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited January 2018

    Lulu73 , wow thank you so much. I would not have ever thought to ask a lot of those questions. Being Military you often believe you are at the mercy of whoever is available. Don’t get me wrong, but I am grateful that my medical care is covered and I don’t have to worry about going into debt in order to get treatment. But these questions allow me to feel some empowerment and take ownership in my care. Thanks again

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited January 2018

    jbdayton, I currently live in San Antonio and have checked out PRMA’s website. Do you know if they except TRICRE? Since I am in the military I normally receive care at the military hospital here. I believe I would have to have a referral to go there

  • TWills
    TWills Member Posts: 509
    edited January 2018

    Thank you Lula73 and runrcrb, much needed info! I learned early on not to assume I would get the best outcome without advocating for it. I'm still blown away by that.

    I'm definetly a pear 🍐, and I never thought that could be a good thing lol. I never held weight in my belly until recently, damn 40's. My BMI is within normal range but I guess having two kids and my love for food has allowed me enough belly to make two smallish breasts, I feel like I'm leaning that way but still have to decide for sure. PS said we could add implants if needed, he also mentioned I should have a great outcome on my belly he actually said "nice and flat" so hopefully he could tell from my body type.

    Runrcrb, I can see there probably being enough belly with the "bend over" check. I only had one side effected but did prophylactic on the other side. I lost one of my TEs during rads due to infection so I'm also concerned with the skin that will need to be replaced on that side and how that will look. Loosing it during rads was not good. No bikinis for me either

  • Lula73
    Lula73 Member Posts: 705
    edited January 2018

    just going to throw this out there...bikinis after 40 & DIEP are the bomb! Try it...you just might like it!

    image

  • TWills
    TWills Member Posts: 509
    edited January 2018

    You look awesome Lula, I didn't even wear them when I looked great in them. If I knew at 20 what I know at 46, I'd have lived practically necked' then. Lol

  • Runrcrb
    Runrcrb Member Posts: 202
    edited January 2018

    Twills - I won't be posting a bikini shot (looking good Lula73!) but here's a picture of the bottom half of my breast at 5 weeks post DIEP. The skin between the two incision lines is from my belly. There are lots of shadows due to my photo taking ability in the bathroom following a shower but the skin is very similar to the rest of my breast in look and feel. There's more than I expected but my surgeon did tell me he removed a section of damaged skin as well as the original mastectomy scar (mine was at the fold). And he sent all for evaluation of cancer - clean. (I assume it's ok to post breast shots :) )

    image

  • TWills
    TWills Member Posts: 509
    edited January 2018

    Runrcrb, thanks for the photo, I'm hoping that's about all he has to replace. I would be happy with that:) He did say he would be removing my original BMX scar also in the fold,

  • jbdayton
    jbdayton Member Posts: 163
    edited January 2018

    Elijahgirl I would just call tomorrow morning. They are very quick to get your insurance info and let you know. I don't know about tricare but there is a possibility.

    Here is some excerpts from their website.

    Insurance Coverage - Frequently Asked Questions

    One of the most common questions among breast cancer patients is, Will my health insurance cover breast reconstruction? In the vast majority of cases the answer is YES.

    While insurance coverage varies on a patient by patient basis, there are some things that are pretty standard. The Women's Health and Cancer Rights Act (WHCRA) mandates insurance to cover breast reconstruction surgery if you have had a mastectomy. Breast reconstruction after prophylactic (preventive) mastectomy is also usually covered as long as the patient is deemed high risk for breast cancer (significant family history or BRCA gene positive).

    Let Us Take Care Of Everything

    Though knowing your breast reconstruction is covered is reassuring, it does not take away the added stress of trying to keep up with deductibles, co-insurance rates, and out of pocket maximums. After numerous office visits, various procedures, and reconstructive surgery, it can be difficult to keep all your bills organized.

    The PRMA billing department is staffed with insurance and billing specialists to help ease this process. We have worked successfully for more than 20 years with numerous insurance providers to ensure proper coverage for our patients. We will submit your claims and follow up as necessary--keeping you fully informed along the way--until your claims have been paid. We always provide you with a cost estimate before surgery so you will know your financial responsibility up front. Below you will find answers to some of our most frequently asked insurance questions. For more information or if you have further questions, please give our billing department a call at 210-447-7829.


    Due to shrinking insurance reimbursements to physicians some DIEP surgeons set their fee and ask the patient to pay the remaining amount that the insurance company will not cover (ie the difference between the doctor's fee and the allowable). This is known as "balance billing". This can add 10's of thousands of dollars to the patient's final bill and is in addition to the out-of-pocket expenses described above. PRMA does NOT balance bill.

    Hope this helps.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited January 2018

    Hi ladies, you can add me to the club if you would like. :) I am scheduled for a uni DIEP on March 14th. I have the all day pre surgery appointment on Feb. 12th. It's starting to get real! lol

    I had a mx last August, 100% delayed. No expanders, nipple/skin sparing. Living with one breast has been interesting to say the least. I am keeping my lefty and hoping they will match up in the long run eventully.

    I will be going with Dr. Jay Agarwal at Huntsman Cancer Institute in Salt Lake. Would love to know if any ladies out there have expirence with the doctor/hosptial.


    Thanks!

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited January 2018

    GreenEyes81, here wishing you the best, I was a patient at Huntsman a few years ago and the treatment I received there was second to none.

  • TWills
    TWills Member Posts: 509
    edited January 2018

    Welcometo the club Greeneyes81! I'll add you to our list. Hopefully someone will have some knowledge about your Dr or Hospital. Welcome!

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited January 2018

    Thank you Elijahgirl, going by full word of mouth as my doctor does not do before/after pics. lol

    Sounds good TWills!

  • bella2013
    bella2013 Member Posts: 370
    edited January 2018

    Lula73, you are rocking that bikini! High fives to you. I am 20 years your senior and most likely won’t try a bikini any time soon but girl...you give me hope that there is a return to some kind of normalcy when this journey is in my rear view mirror. You go girl👏👏👏

  • newusernam3
    newusernam3 Member Posts: 1
    edited January 2018

    Hi!

    It is so helpful to read this forum, and this topic! I am scheduled for a BMX and DIEP reconstruction on 2/12. I really appreciate all the questions, answers and insights. There is so much to think about.

    I am struggling with not knowing the status of lymph node involvement. When they did my original lumpectomy, they weren't expecting to find cancer. My BS assures me that the risk is so small (1% or less) based on the tumor's characteristics, etc, and there is no value to doing a sentinel node biopsy prior to surgery. She is truly on top of her game, and I trust her, but I still worry that I will be in that 1% and end up having to radiate the reconstructed breast. My PS is also so meticulous, he wouldn't go ahead with it unless he concurred with the assessment. I know I just need to breathe; there is so much of this diagnosis that feels so out of control.

    Anyway, I have a CT scan and a pre-op the week before surgery. It feels more "real" to have an actual date. I'm looking forward to, oh, about 8 weeks (or so) on the other side





  • TWills
    TWills Member Posts: 509
    edited January 2018

    Hi newusernam3, to me the time you're in right now was the most difficult. I wanted to know the good, bad, and ugly, make the plan and GO! You'll get there.

    Let us know everything about pre-op, I'm sure its a bit different from Dr to Dr. 😊



  • TWills
    TWills Member Posts: 509
    edited January 2018

    My pre-op will be the week before surgery and I'll be told a lot then but what has everyone been told so far, preparing wise? Do's, dont's, etc.

    The only thing I was told at consult wasnot to loose any weight and start weaning off coffee/caffeine. No caffeine for 6 weeks after surgery.