DIEP 2013

A couple of thoughts on gathering together for a retreat....sounds like some people want their own rooms...others may want to double up to save money....So a hotel may be a good choice. Also, it's likely going to be less expensive and give greater flexibility to fly into a large city, like Vegas, that has lots of flights going in and out. How do you feel about a long weekend? That works better for me....I have been away from work a lot in the last 2 1/2 years!

Bailey, a long weekend sounds great, and you're right, flights to Vegas can be reasonable.  We don't have to do the "strip."  I actually very much dislike Vegas because it feels like sin-city to me, but we're gathering to enjoy each others' company, not gamble!

Mammalou, a keloid scar can happen to anybody.  They can be very much reduced with steroid injections into the scar itselt.  Not comfortable, I'm told, but it doesn't last long. 

Thanks for reading Cherrie.  Like a lot of what we do, I didn't have to be brave, and I wasn't!  I just had to show up!

The wound care nurse said my boo-boo is looking better.  I gazed at it with a magnifying mirror and it sure does.  Deep red, with healthy granulation tissue filling in from the bottom.  Hopefully just a couple more weeks with this machine that sounds like a bubbling rice cooker and I'll be finished.

So....this seems to be a good day for a "poll"....and timely too. I have just received a request (from a previous 2013er) to add her (now 2014) date to our list. I will certainly ask the mods to do that, as she has been with us in the past, and had to reschedule. 

However, going forward, I will be turning over the "thread management" reins to someone else for the coming year. In fairness to the mods, a thread that is built around an ever-evolving list, should be started and managed by someone willing to commit to the time and constant "connection" it deserves. I'll leave it up to the mods, and/or someone else, to decide if it would be best to start a new thread, or continue with this one, perhaps by somehow condensing the 2013 list, to make room for the 2014 gals. I don't mean to imply I am stepping away from the boards altogether, because that is not my intention, but I am looking for a little more "emotional distance" on a daily basis. To the future "flappers", it may be more relevant to start fresh, with a new date and title. 

The other alternative, that I am strongly considering, would be to start a new thread that is not "list/date" focussed, and just evolves on its own. Soooooo.......feedback time ladies.....I don't want to lose any of you....but don't want to find a "list" thread become orphaned again, like ours was earlier in the year.

Good Evening, ladies!



I just found this today(I tend to be one of those ridiculous "I don't need anyone's help" people). I have been reading off and on for a few hours and feel a little better already!



I just had my bilateral mastectomy and DIEP Flap Reconstruction or "double dip" (my babies picked this name and it makes me laugh) on 9/25. My PS was highly recommended and has excellent stats but is a man of few words and his office staff act as if I am "high maintenance" if I call with a question. I have been very lonely in this experience for the last week. The hospital sent me home with just a med list. I didn't even get the standard recovery instruction papers. I did get dc'd on a Sunday though.



Moral of the story is that I don't know if I am doing anything right or if what I see is good or bad. I don't see PS until next week.



I will do my homework and read through this discussion as best I can. Would anyone be willing to give me some quick tips from their experience? As I said before, I am feeling very lonely in this. I have extra people around me to help but none of them know anything about mastectomy, DIEP, or BC in general.



Thank you!

Stage 2 question please:  

I saw the PS today. I'm almost 3 weeks post-op from stage 2 - lipo, fat grafting, creation of new left nipple, revision of the abdominal incision edges, and today remaining stitches were removed. The issue is the new boobette is much larger than the natural breast. The PS doesn't seem concerned,told me several times to be patient, that it might take 3-6 months for the new boobette to settle down and settle nearer to the size of the natural breast.

He said it is likely time will be all I need, but if we need to "tweak" anything, he could do another small surgery to even out the sizes. What? Isn't that what this last surgery was about?

Has anyone heard of or experienced more surgeries to even the symmetry of a natural breast and a DIEP breast? How many? 

How long does it take a DIEP boobette to settle down and the swelling to minimize? Is he correct at 3-6 months? Of course he is, he's the expert...but I'm just having a day of doubt...

Thanks for all the posts. I really appreciate all the honesty here.

NYTX, first I have to ask, are you a New Yorker that has been transplanted to Texas, because I am one of those.

I haven't had my surgery yet, but most have, and everybody is welling to answer any question they can.  Nothing is off limits.  We get pretty graphic and intimate here, so don't be embarrassed by anything you need to ask. 

The only think I know now is that you had your Diep, your doc sounds like a bit of a jerk, even though he is a good surgeon, and you are a wee bit clueless if everything if going as it should.  You didn't mention any uncomfortable complications, so I assume you are doing okay on that front.

So, everybody is here for you.  Ask away.  Somebody will answer, promise!

My cancer was found during my annual mammo, I have very dense and fiberiois breasts. They found micro calcifications, went back for more pictures, then biopsy for confirmation. I had no idea, the DCIS ran from the breast bone to the nipple.



Katy, thank you for sharing the article. Your story ran me though every emotion, and in the end i settled on happiness.



Jennie57. That's great news for you. If you can, please keep us posted on you stage 2 journey. Do you expect to have another surgery after? Or is this your last?



Carmel and nytx -made sure you get plenty of rest, drink lots of water,and take care of yourself.



Klanders. Glad your doing okay after stage 2.



Have a great day fellow flappers...

All the best Bailey! It'll be clear! *hugs*

I have my rescheduled PS appointment in a couple of hours... the redness is spreading right up the side of my noob and there's now a bump (like a huge zit that's not a zit) right where the hard bit is and the redness starts. I'm wondering if there's a leaking seroma in there or something and I'm just full of infected yuk.

I found my cancer myself in the shower. Because I was under 35 at the time they would not do a mammogram unless ultrasound indicated a need for it. So I had ultrasound then mammogram 5 minutes later!

A long weekend in Vegas sounds great- only problem will be finding one that is shared by Canada and the US. Will we just decide on a place and make our own arrangements or would you like me to look into getting us a deal ?

Have a good day flappers!

Goldie4040 - I have a long history of breast issues, starting with lumpectomy at 23.  Long story short, I had biopsy in July 2012 (one month after I tested neg for BRCA 1/2).  The BS said since I was so high risk (personal plus family history) he wanted to do an MRI as a baseline, in 6 months.  In Dec, two days before my MRI, I noticed a large dimple/pulling on my breast when I raised my arm.  I KNEW what it was.  The day of the MRI they did a mammo and an U/S since I had a dimple.  The mammo showed nothing, U/S a cyst.  MRI picked it up.  I had a biopsy in January.  A week later my DX.  Two days later i got my happy "congratulations, your mammogram was normal.  See you in a year" letter...go figure.

Just a note, even with the pulling, no one could "feel" the lump.

Where in NY are you from? I am in VA, transplant from NY.

Cherrie  - I am soooo excited.  But nervous too!  I keep thinking "what if there is not enough butt", what if it fails.  But, I need to do this.  I told my hubby that if it works, he should be very happy...none of his friends will have a butt/boob to hang onto -

sharon1942 - Awesome article!  Thank you so much for sharing!

Good luck Bailey!

Question for ladies that had SNS MX with their flaps....sooo, do they insert the flap WITH the skin under your existing skin? so you have double layer of skin? I know I can ask next Tuesday, I am just so impatient.

I have started taking B12 (in addition to all my other vitamins/supplements), and I know by the time I get home (I work 10 hour days) it is hard to get a long walk in, so we have been walking 2-3 miles a day during work (we go twice, and call it our smoking break).  I am still sooo tired, but feels better to get up and move. I still do my free weights and resistance training at home every day for the legs, arms, buttocks.  I have weights in my office, nothing crazy, just 10 lbs...If I am reading, I do curls and other exercises at my desk - my co-workers laugh at me

(Edited to say "Good luck Bailey")

I say see what you can find for a deal, Sherry!



Well that was my first PET/CT scan. Wow. So much better than a pounding MRI. I slept through most of it (thanks to my friend Ativan!).

Bailey.....good to hear you had a "scan nap"...why can't all the tests be like that, eh?

lahela..yikes!!! Get thee to that PS ASAP!!!!! I can't imagine going through all this with a Language/comprehension hurdle too. Do you think some of the lack of info being passed on to you is related to that???? I've got everything crossed that this "gloob with attitude" settles down quickly...

NYTX....at 4 weeks post surgery, your body has a whole lot of changes to go through. How things look now, is not indicative of how they will look in a few months....if that helps you.

re: oval boobs....sounds like (as per most of us) there will be some level of shaping/reshaping in the future for you.

re: compression....there are a zillion options out there for you. Some ladies have contacted a company called Marena to get a high quality garment, and maybe some of them can give you more info. I wasn't required to wear compression by my PS, but wanted to. I found a garment that worked for me, at Walmart. Sears (Canada) also sold the same garment. If you go shopping for one....measure yourself first, and leave your ego at home, cause you will not be the size you think you are. The first garment I wore, was actually an XL....I've never worn an XL anything in my life. I tried on about 6 different makes/versions/fabric before I found something I could tolerate. My garment was a Maidenform brand, that suited my body....others might not have found it as good. It really did help me.

Once your tummy above your incision settles down, you still may find it "bigger" than you want. Stage 2 lipo may help with that. Also....even if your swelling resolves well..as you get more active..you may likely find you start swelling again. Normal phase, apparently....but frustrating. Keep your surrounding skin and healed incision areas well moisturized with a neutral product, and do lots of massaging. Helps with the swelling, helps with the de-sensitizing, helps with scar maturation, helps with the itching....helps.

You haven't mentioned if you are ER+....but the estrogen patch question I can't answer for you, sorry. Best to ask that of your onco and surgeon.

You'll straighten up as time goes along. It happens easier, if you make a conscious effort to spend more time lying down or on your feet, than sitting. When you sit...you are bent over. When you are standing...your back, side and core muscles are all working hard to keep you upright against gravity. It's very hard to ask a muscle that is "working" to relax and stretch. When you are lying down, try to gradually have less "height" under your knees and shoulders. If you feel "tight but tolerable", and after a few minutes more comfortable, you're on the right track. If you feel more discomfort as time passes, you're trying to stretch too quickly, so add a little height. Never should stretching cause you intense pain. All that will do is force your body to tense up and you'll be fighting against yourself.

There's some info for you....hope it helps. 

Has anyone heard anything from cstrong????? I'm concerned....Bluebird....?????

Time for me to get busy ladies....have great days. 

Lahela, you've probably had your appt with your PS by now, but your posts alarmed me.  Increased pain, spreading redness, a zit-like lump, is an infection and maybe cellulitis.  Please let us know how you're doing!

Momof5kids, when they put the DIEP flap under the existing breast skin, they "de-epithelialize" the flap, by simply removing the skin.  You don't have two layers of skin.  The remaining breast skin just envelopes the skinless flap.

Nihahi, I hear you when you say you need a little distance.  I don't know what the best route for us will be, but I know I want to keep our cozy DIEP lounge for us to come and go, sharing and rejoicing and encouraging.  Whatever you need to do, we're there!

Oh my goodness, so much going on.  All I did was go to bed, and take my time checking in here this morning.  

Bailey, the Pet Scan is going to be perfect, and you will be moving on to stage 2 cancer free!!!!

Lahela, prayer's going out to you that if it is infection they caught it early, and you are going to be fine.  We are all waiting to hear from you.

jbloom, you are one of the few that actually had their cancer found on a routine mammo.  I really wonder if MRI sound be the way to go, and I believe there is no radiation involved.  I have several friends who are very high risk and they get yearly MRI.  

NYTX, 2 years!!!  That's all?  You have way to much going on.  Culture shock!!!  2 new babies!!!!  BC!!!  Hysterectomy!!!  Menopause!!  It's a wonder you can put two words together at this point. Bless you. I am in the Arlington area.  Moved here from Queens 30 years ago, and I am still in culture shock sometimes.   The worst is over for you, I believe. Your body is going to seem foreign for a while. If your PS is good he will make everything right for you. There is fat graftings, and lipo, and lifts to be done before the final result.  Most of the women on here have come out with awesome results.  Remember, you have had an incrediable assault on your body (more than several times in the last two years), and you need time. I am really glad you found this site.  It will be a God send for you.