DIEP 2013

GwennyMD

Hi ladies

Been missing for a few weeks.  I have tried to catch up but you ladies are a chatty bunch.

Went back to work. Went to funerals. Trying to find the energy to decorate for Xmas. 

Good luck to all getting surgery this weeks.  Healing hugs for all in recovery.

Ridley

Rgh and others. I will be here in the future as well. Im praying that I will be sprung today and then it's on to managing recovery at home,

Curly. If your timing was like mine, you are being visited by all types of folks now. Might have marked by the ps already. You will do great. Marty. You are one step closer to the finish line. You are both in my toughts today.

Ridley

MartyJ

I think the most difficult part is that 45 minute period after you arrive and they take the patient back to get ready and my husband can't come. I know they will bring him back soon, but not soon enough. He is my rock. This is when I get nervous. Right now. Maybe it is the hospital smell - the special one in the area they prep patients. Nurse is here. Bye.

Janet_M

Marty - Think of that smell as the things that make you heal. Soon you'll be smelling lovely Christmas things like cookies and pine needles. And looking fabulous!

MartyJ

thanks Janet. The smell has been replaced by the huge cinnamon roll my DH just walked in with. Yikes, hungry. I am better. Two sticks from two nurses and waiting for my doc to com in and mark me up. Smurf time.

jlbloom

Thinking of you ladies, MartyJ, Curlylocks, Bailey, and Sharon. ...Julie

Janet_M

So glad you're better Marty. I have a lovely visual of your hubby hidden behind a massive cartoon-size -cinnamon roll.

nihahi

marty.....I can smell the cinnamon from here! I think lots of us can relate to your "feeling" this morning. With something like surgery, familiarity doesn't translate straight across the board to "relaxation".....there is almost always that "appreciation" of what is to come. Hugs to you, girl!!!!!

curly.....you're well underway, I'm sure, by this time. I'll be looking for your first messages from flapperland.

Ridley....hope you get sprung today.....home is ALWAYS better, eh!

RHG...My next stage is Jan 8....I'm not leaving here, you can count on that!!!!! .I'm just shedding my "mother hen" feathers, not disappearing. As the "lister", I felt a responsibility to check the thread often, to make sure someone's post didn't go "unanswered" if someone was struggling, messaged back and forth with the mods (THANK YOU MODS, EACH AND EVERYONE OF YOU), and got lots of pm's from people, looking for Diep info, that I tried to encourage to join the conversation. Some did, some preferred to stay in the pm mode, and be "readers only". Time for me to allow some distance between myself and my own surgery, but that means a distance of maybe a day, as opposed to every few hours.

Personally, I hope someone does start a 2014 thread, they don't have to do it with the same mindset I used. They can be more detached if they chose....we're all different in our approach to things. I found something very "bonding" to connect with people going through the whole fandango with me. I think the list is helpful, because it gives a quick perspective of where someone is on their timeline, without them having to explain it over and over. Some of us put the date in our bio, some people don't share any bio info at all. I liked being able to spot people who had gone silent around their "date", so I could reach out to say "hey.....we're here and thinking of you". The veteran info is undeniably valuable too, yet I found as the year went on, we became our own "veterans". Each thread on this bco site is different, I think ours is hands down THE BEST!!!!!!

Zenful

Thanks, Nihahi, for making it that way. This is a wonderful group of women, and I am certain that your leadership and calm voice of reason had something to do with making it so great. Happy to hear you are sticking around!

toronto-girl

I second what Zenful has to say--Bigtime !! Thanks Toronto-girl

Miss_Mama_Bear

Hey everyone! I don't know if there is a general info page to answers some of my questions but I thought I would start here.

A little background info: I have long debated this choice as I am still a candidate for a lumpectomy. My gut says BMX though, so I am going to go with that. I have no PS in my area that does DIEP so I will have to travel 4 hours for that, so I was planning on just going with implants. It wasn't what I really wanted but as a single mom of three with VERY little help, I was thinking I just needed to get done what I could. Well, I started looking into implants and met with the PS and realized that surgery probably isnt' for me. My oldest has cerebral palsy and cannot walk. He is already 63 pounds and will keep growing (obviously) and the PS said that I could likely have a reduced lifting ability. I also saw many peoples stories that the implants caused problems and it was increased in those who used their pec muscles a lot. So, I am back to the DIEP. I should have went with my first instinct lol. Here is my problem: The doctor in KC takes up to 5-6 to get an appointment with, and I am not even sure how long it will take to get on the surgery schedule. I have not even made the appt yet. My BS office was supposed to but they didn't for some reason. I do not know if I have to have rads yet. I am having a sentinel node biopsy and lumpectomy (BS wants to take out the lump while she is there anyway and can likely even use the same incision. She said she could get better margins going in from that angle than a skin sparing MX). After the node dissection they will decided if I need rads or not. If I do, I am okay in time frame because technically I could be done with treatment after the rads. If I don't need rads then I could run into trouble. I am doubting they will let me wait at least 6 months to have my BMX after finishing chemo. So, my question is if I have to have a BMX first and delayed DIEP, will I end up with the "football-shaped" scar of transplanted tissue? Do they need to put expanders in to keep the space for the DIEP? WIll the chance for a successful transplant and posible nerve regeneration be reduced if it is delayed? Maybe I should just go ahead and do rads anyway. My sister is coming down from 700 miles away to help me out but she wouldn't be able to stay for me to have two surgeries. I am pretty well without help otherwise. I just don't know what to do =/

bdavis

mamastewart.

I had a lumpectomy first and SNB, and then chemo. I was due to have radiation afterward, but chose the BMX instead. I was able to get my appt for MX when I needed/wanted it, and I too traveled for surgery. The window of opportunity is to have the radiation within a month of finishing chemo (so once i made the decision to have BMX I was on the hook)... And my MO wanted me to have the BMX within 8 weeks of finishing chemo (I had it at 9 weeks.) So if you have a lumpectomy now, and start chemo in a month, how long will you be in chemo? Then calculate 2 months post chemo is your deadline for BMX.

If you have the BMX and no recon to start, then perhaps you will end up with football paddles. It depends. Some PSs will just put an implant in there to hold the skin away from the chest wall. If you have a TE put in, and its put under the muscle, you are compromising the muscle for no reason. I would consider finding a DIEP doctor who can fit you in sooner??

Jeannie57

Mamastewart, I'm sorry you have to be here but glad you found this thread. The ladies here are so kind and knowledgable.

I had lumpectomy with snb but cancer was found in a node so I had a BMX with axial lady node dissection. 2 more cancerous nodes were found. I started chemo within 2 months for 3 months, rads then 3 more months of chemo. I had skin-sparing BMX with TEs. I had DIEP in July and a revision in Oct. I have never heard of DIEP being just one surgery, although the 2nd one is a much faster recovery. I had TEs for 15 months with absolutely no compromise of my pec muscles. I do the elliptical, lift small weights, etc. This is only my story. There is no one size fits all in bc/reconstruction. I do recommend you get some training and advice from a certified lymphedema expert after your surgery since you have to do so much lifting of your dear son, even if you only have an snb. LE (lymphedema) is not something to mess with or know nothing about. I have it in both arms. Now, take some deep breaths! We are pulling for you.

Miss_Mama_Bear

bdavis: I have already started chemo, in fact, I have my last one on Wednesday. There was a lot of ball-dropping in this whole thing (by myself as well-damn chemo brain!). I went and talked to my MO today and he said the same- 8 weeks. I guess this means I am looking at doing a BMX and then reconstruction later or I can just forget about it and try the implants...really not what I want to do either way. I am so frustrated and upset! I just have a feeling that I am going to have issues with the implants. I can't exactly explain it, it is just the same as how I feel about arriving at my BMX vs lumpectomy decision: it is a gut feeling. So, the skin needs to be kept away from the chest wall to avoid the football paddies? I understand what you are saying about compromising the muscle for no reason, and I don't want to do that. I didn't realize they could just put an implant under the skin. I really don't think that I CAN go anywhere else. I think the next closest place I could go is twice as far. I honestly don't even know how I am going to make the trip to KC work!

Jeannie: What I meant by only having one surgery is that they could do the mastectomy and DIEP at the same time. Do they not usually do it that way? That is the reasoning behind me not having surgery yet; we don't know if I will need rads or not, and you can't do a DIEP before rads. My BS said that I could just have the BMX and the DIEP performed at one time. Is that not correct? How do I get in contact with a Lymphodema Expert? No one has mentioned this to me. Can you get LE just from MX, like on my other side where I am not having a snb?

Thank you for all your help!

goldie4040

Mama, I only have a minute, and I am so glad these great women have stepped up and told their stories. If I were you I would fight to have the immediate bmx/diep if that is what you want. Two big surgeries are not necessary, and I would avoid it if you can. Most breast surgeons and plastics surgeons will make your surgery a priority if it's for a bmx or mx, but if you are just waiting for the cosmetic part then they are known to make you wait since your cancer has been taken out. You can, if there is no other way, have expander's put in to save the skin, and keep you stretched till your diep, but that is two surgeries, and I just don't see the point if it's not necessary for rads. If you don't need rads if you have a mx/bmx then I would avoid them.

nihahi

mama....sounds like you have an awful lot on your plate already, without much "backup" support. Kudos to you for getting to your last chemo.......you must be one tough cookie to make that journey without having others to lean on.

There are so many "variations" as to what to do, in which order, that an "across the board" answer that it sounds like you are seeking, just isn't possible. Minimal scarring is of course desirable, but certainly I would put scars at a lower priority at the moment, and focus more on finding a PS that was a good fit, and as accessible as possible, to discuss the options available to you ASAP. You need a PS who has lots of flap and microvascular experience. Some PS will do Diep before rads, more of them insist that rads be first. You won't know, what you can/can't do Diep/rad/mx wise, until you can sort that out with your Onc and PS. If you have positive nodes, an mx independent of rads, doesn't typically address the bc, because a positive node means the bc cells have already left the breast and moved on. Remember that your priority (especially with dependent children to consider) is to follow the optimum tx recommended to address the bc.....life over recon. fyi....I don't believe nerve regeneration is at all influenced by timing of recon....not sure about the flap survival stats.

Whichever recon you choose to go with....or even with no recon and just mx...you will have lifting/weight restrictions for a period of time. How long is your sister able to stay with you to help both you and your kids? Do you have any access to respite care for help with your disabled child? Do you have church members who might be able to help? Asking for help can be such a difficult thing to do, especially if you are used to "toughing it out on your own".....but you realistically, are going to need some level of help, for an unknown period of time, and it usually is out there somewhere. Hope things get sorted out in the best way for you.

MartyJ

Hey y'all! Survived. Minimal vomiting. Dilauded on board. Lots of padding in bra. Got my compression from below boobs to top on knees. Life is good. Wilbur is waiting for me with s drink in hand. Can't keep the big guy waiting.

TTFN!

bdavis

Mama... As said above, you can either have the MX and then recon later OR have it done at the same time. The better cosmetic result is achieved when it is one surgery. But with most, if not all DIEP surgeries, there is a second smaller/revisional surgery about 3 months later. If you have a MX and they remove the skin, then yes, you would end up with the football scars. But there are ways to avoid this, but it depends on the PS and the way they do things. Not all doctors have the same approach. Some might want to take off all the skin and deal with it later, while others might use a TE and then others just put in an implant (as a place holder). I know of some doctors who will do DIEP before rads (they just overstuff that side until revisions), while others wouldn't dream of it. Did you say you definitely need radiation? If it were me, and you don't need rads, I would try to get the MX/DIEP done at one time. If you do need rads, then get the rads and the MX can wait.

nihahi

WOOHOO marty!!!!!!! Awesome news on the lack of PONV!!!! Go party with wilbur!!!!!!!

goldie4040

Yep, Mama....I am glad Nihani summed it all up for you perfectly. You have a lot of think about, and I am sorry you have so much on your plate, but I am glad you found us, and if diep is going to be your choice than this is the place to be.

Yeah, Marty. Merry Xmas!!!!!

Ugh, for the first time ever I have phantom itching that can't be scratched. I keep trying to do things to distract me, but it isn't easy.

christina0001

Marty - I totally agree, that period of time waiting for surgery, by yourself, and that smell... *ugh* Hope you are having fun with Wilbur tonight!

mamaStewart - I had delayed DIEP (albeit UMX) and I got good results. I did not do a TE. At the time of my mx I was not sure what I wanted to do as far as reconstruction, and I did not have the time or emotional strength to figure it out, so I just went flat (well, with a prosthetic). Immediate would have been great though I am sure! My mx was after chemo, but before rads. By the time I was done with rads, I was pretty sure I wanted to do a DIEP and had a consult with my recon PS. Her schedule was packed, and I had to wait eight months from the initial consult to the actual DIEP. It was well worth it though. I am very pleased with the results and I have posted photos on the photo forum, if you are a member there. As far as nerve regeneration goes, I was under the impression that just about everyone who has a DIEP (delayed or immediate) is pretty much numb. I can feel pressure on my DIEP breast, but there's no real sensitivity.

sbelizabeth

Hi, gloobsters. Mamastewart, welcome, and I echo what these knowledgeable ladies have told you. I had a delayed DIEP after lumpectomy, chemo, umx, rads, several haircuts, a skinned knee, and a couple of colds. Anyhoo...I am thrilled with the results. And I'm a big believer in going with one's intuition, so if a bmx is what your gut is telling you, it's worth a listen.

Today was my first day back in the office after surgery on 12/6 (a touch-up surgery, Mamastewart, which is very common, and not nearly as big a surgery as the first). It was mostly meetings but I was still glad to check-out at 2:30 for my daily date with the lobster at 45 feet depth. It was a nice, 2-hour nap for me--but I can't wear my "work" make-up in the chamber, so I was glad to have brought my Neutrogena mascara remover and a washcloth! Two more hyperbaric treatments and I'll be officially finished.

Christina, I checked out your posting on the pic forum. You had beautiful work, girlfriend. Thanks for sharing.

I have bike shorts on already. It was 80 degrees today, a full moon tonight, and we're going for a night ride and look for "nightjars," a small, owl-like bird that squats on the trail in the dark until it's almost under your front tire. When it's right in the headlight it flies straight up and scares the bejeebers out of you. Good times!

Jeannie57

Yay, Sbel! You sound great and I'm glad you seem to be healing up well and having fun, too.

Marty, glad you are recovering happily. I kind of miss Wilbur.

Christina, saw your photos and you look so great!!!! Thanks for sharing.

Mamastewart, I found my LE therapist through my cancer center. I see mine at a hospital so you could probably call your hospital and see if there is a PT or OT who is certified in LE. There is also an organization called the National Lymphedema Network that might be able to help you. Some bco.org ladies started a website with LE info, too. I can't remember the name but if you go to lymphedema threads on here you could find it. You are at risk of lymphedema if ANY nodes are removed and it is a lifetime risk. Radiation increases your risk if nodes have been removed on that side. Many women don't get it, many women do. It's a crapshoot--I landed in the crap! Many ladies here have not, though, so hold onto that. It's so weird that different PSs have such different opinions on how to proceed. My PS is conservative, I guess. He put TEs in during my BMX and doesn't do immediate DIEP. He thinks there are too many complication risks but many women here have done that successfully. He didn't want to put permanent implants in radiated skin because of complication risks. Thankfully, I wanted a DIEP anyway. I am very happy with my results and every nurse/doc has been impressed with his work. I like having soft, warm boobs. DIEP, implants or no recon., it's a personal decision sometimes dictated by circumstance/anatomy. No decision is a bad one. I think trusting your intuition is very wise.

Miss_Mama_Bear

Thank you so very much everyone for the info! This IS a great board!

I do know that everything is different for everyone- UGH, I have experienced that with chemo for sure! Last one, last one, last one! lol. I keep telling myself that. I called the BS office today and the regular nurse was out and the sub was not helpful at all. I just cried. I've been crying all day. I think I have the post-chemo blues already.

The PS in KC is my only option for DIEP, although I heard a rumor that there was another one hired on there. Does anyone on here know that?! He would be working with Dr. Beuscher. I have heard nothing but good things about her, but nothing about him so far, or if there even is a "him". Maybe with two docs it might be easier to get in. Hopefully my BS will be able to pull some strings and get me in sooner. This has all sneaked up on me...my sister is coming down to help and hopefully 8 weeks will be enough time for her to get her things in line to do so.

I did know about the "touch up" second surgery and I think that I could have my SIL help me out for that. She lives 2-1/2 hours from me (and halfway between me and KC) and she could possibly take some time off work and leave the kids with dad. I hate to do it, but like you all said, it has to be done. I didn't think that the recovery time as far as being able to drive and such would be nearly as long.

I plan to do a skin-sparing and I won't know about rads until after my SNB. That is why everything is so chaotic and out of order, I guess. I went and met with the RO and he was confused as well lol. I have heard from both the BS and RO that I shouldn't do rads after the DIEP, but again, I won't know until after surgery if I even need them. It is all a waiting game and then a hurry up and get it done situation. Oh, and I definitely am going to follow whatever it is they recommend as far as getting rid of the cancer. That IS first and foremost! My MO told me today that he was glad I was going with a BMX and the made me feel even better about my decision.

Okay, totally rambling, sorry lol.

Another question: The PS that I saw locally (who was a serious JERK and told me to just get a lumpectomy and if I get cancer again to deal with it- can you believe that?! I think he was mad that I was considering the DIEP and he doesn't do them) anyway, he told me he thought I had just enough belly tissue to create the same size breasts that I have now (small B cup) What happens if I lose weight? This belly I have has only been here recently since I have been sick with the cancer (I started feeling "off" about 9 months before I discovered the lump) and I am thinking that once I recover from all this, I will get back to my old size pretty easily. What happens if I lose all the fat from the DIEP? Are implants under the flap (not under the muscle) an option? Also, I would really like to have larger breasts if at all possible. I mean, I don't want to be petty about it but if I have to go through this crap anyway... I always figured I would get implants eventually, just not this way lol.

Oh, and where is the photo gallery? I have looked for it in the past but couldn't find it. I never thought I would want to look at other womens' breasts so much lol, but I sure do.

goldie4040

Mama, I look at all breasts now. I was even looking at the breasts on the mannequin at Kohls today. I hardly ever paid attention before unless somebody was really flaunting them, and making them very obvious.

I was told (haven't had my diep yet, living with implant for now, a very long story) that you can put implants under a flap but not under the muscle like a regular boob job. I know we have one woman on here who had that done, and there might be two. I also am slender and don't have much belly fat. If you are thinking seriously about diep you might want to try to keep the weight on for a while longer. It will make the surgery easier for the surgeon. If you lose the weight after the surgery your flaps will lose weight too, but then you will know how big of an implant would need to go under the flap.

You have so much info to digest. I give you a lot of credit. Three kids, and one with special needs. That's a lot to deal with. You sound like a strong lady. You can do this.

nihahi

goldie.....I keep hearing you comment on "implants for now....hope to get a Diep in the future". Actually, there are many women who do great with implants, have no complications and are very happy with them....and since you are now on that path, I hope you become one of them. From personal experience, I can tell you that implant failures (had several kinds myself) are exactly what the name implies....failures. They come with their own sense of loss, and emotional and sometimes physical pain. I wouldn't wish a failure of any kind on anyone.

The "happiness" that many of us chat about re: flat tummies post flap recon, is for many of us, (in my opinion) our way of putting a positive spin on a long, exhausting journey, that for many women, is the ONLY option. You've been with us long enough to know that flap recon comes with it's own set of hurdles and heartbreaks, and certainly doesn't come with any guarantees of success or "happiness". So....please celebrate that you made it through the TE time (not an easy thing to go through!), had a successful, non-complicated exchange, and have your feet well planted on the path to putting recon behind you and enjoying life in your favourite jeans. Sometimes the phrase.....be careful what you wish for......are some very wise words!

lahela

Nihahi, again with the words of wisdom! Seriously, you are the wisest person I have ever encountered. You are so, so, so right about the positive spin - my own comment about not caring about the ooph scars because my tummy is flat again came straight into my head when I read that!

mamaStewart, the most awesome women hang out on this thread and I see they have been giving you great advice and guidance. I hope you can find a PS who can give you what you want.

Deb, thinking of you today, honey. Sorry you have to go through all this extra cr@p.

sbelizabeth

Hey, Lahela, I can't sleep. What time is it in Switzerland? It's 2240 here.

Jeannie57

Deb!! Thinking about you!! Hoping for the best. You are not alone!!

Moviemaniac

not sleeping either......long, exhausting weekend over-filled with obligatory Xmas parties.....too many errands that had to run today, and I feel something not good coming on.....

Mama, good thing you landed here....these ladies are the absolute BEST! Pay attention to those gut feelings...they mean something! I am sure you will get it all figured out...you've gotten great advice here....couldn't add anything more, except that my football paddles disappeared after my stage 2a (I honestly thought my new boobs had disappeared as well, but that is another story....) however, two weeks out of stage 2b, and the girls are back......my PS is a magician! Best of luck as you make your journey.....you will find lots of support here.

Marty, glad you had a nice visit with Wilbur.....hopefully you will get more than a one-night stand.....

Keeping my fingers crossed that I am not getting sick.......

Love you ladies......you are my rock! XO