DIEP 2014

lipgloss sorry to hear your left flap failed. Is the right one warm? I think even if hard a warm flap means a living flap.I certainly hope that's the case. Firm could be a fluid collection.

Hi all! Marty J that is a great way to do a post! Another  way to read a few days worth of posts and respond in one post is to have the posts pushed to your email (it is a setting in your profile on bco).  I open my email and also log onto bco.org in separate tab. I start from the oldest email post and just click over to bco and start a post and update as I read the emails. It's easy! I delete each email as I go so I know anything new in my email inbox is new that I haven't read.  I sure don't have the memory to read a bunch of posts and respond. LOL! I do love this group and keeping up with everyone. I can't tell you how many times I've come here and felt validated, lifted up and understood. I also enjoy the humor we share, something others might not get...

Ms sounds like you are doing great! What kind of exercise program are you going to start with?

JMB5 I went out and looked at the pics too on Vinnie's website. He does amazing work! Glad you got some more information. Also nice to know about the 5 month rule. Did it sound like they'd work with your insurance company and talk about cost at all? Very curious. Sounds like a wonderful way to celebrate your birthday! I have a friend who lives close to DC and wonder if maybe I could swing something like that myself. 

Lovesroses good to hear from you and your progress. Drain free is so awesome, isn't it? Sorry you had another visit to the hospital. Always good to have those things checked out though. Clots are serious. My insurance company would not approve stage 2 surgery to be done until 90 days post stage 1. I scheduled it as soon after that mark that the surgeon could get me in. I think the deductible new year depends on your insurance company. Mine is Jan-Dec. So Jan 1 starts new year for me. I had a uni DIEP so went with the nip reconstruction so they'd match. Supposedly the nipple shrinks to half it's original size post op. It is smaller but not by half but it is only 5 weeks post op today. 

Brenda hope you hear something today. Waiting just sucks and is so unnecessary, it just take a few minutes with a phone call to put a person's mind at ease or provide a quick answer and a follow up appt. if necessary. Keep us posted.

Goldie, I feel the same way about my stage 2. Like starting over a little bit but not near as involved as stage 1! I am going back to PT also. Couldn't get into my gal until end of the month but she is worth waiting for, she is pretty amazing. I had almost full ROM going into stage 2. Back to tightness and decreased ROM post stage 2. SO happy you've found a support group. I hope you find it helpful and are able to connect with some nice folks. My headlight is still prominent...but less than it was right after surgery!

tlbradyful yes new profile pic. Thank you! A new one with more hair now! Taken at a wedding recently. Glad the docs agree that the curious area is from trauma. When will you get the biopsy results? Good luck with your appointment today at NOLA. 

pzercher, you crack me up! It is all about us!!  I have been perusing tattoo pics for both reconstructed breast and tummy scar.In fact I've got a pintrest board started...I don't have any ink on my body sans the radiation tattoos...But part of me is really thinking about at least covering up the big tummy scar. I saw a picture of a gal who had both nipples tattooed with 3 or 4 leaf clovers. LOL! I can't remember how many leaves now...Are you coming on Tuesday? Hope to see you if your schedule allows.

Lipgloss let us know what PS says today.

XOXOX

pzercher, I considered zinnias instead of nipple tattoos for a while.  Now I'm used to nothing at all.  The scars from the nipple reconstructing are a little pink and I like wearing no bra under thin shirts. 

Well, I have finished a draft of my attempt to summarize the important things we have learned from each other here at the DIEP forum. I wanted to create something helpful, a brief overview of the kinds of things we all wish we had known beforehand. It may be that it's just not possible to summarize! I don't know, but I wanted to try. Please let me know if there are things I left out (almost certainly!) or things you feel I spent too much ink on. The purpose is to be a brief introduction. The best thing about this forum is that we can ask our specific questions as they happen! Please feel free to let me know what you think.
DIEP sisters: I have put together this summary as a general reference for new or potential DIEP patients. There is so much information about the surgery and recovery, I wouldn't even begin to try to cover everything. There is plenty of information on this forum, but with over 5,000 entries as of this writing, I thought it might be helpful to put some of our main points all in one place. This summary is all about the patient perspective and is not intended as medical advice. Your best source for that will be your surgeon. I have tried to focus here on the things a lot of us didn't know, and wish we had known, going in.

(I) The decision

DIEP is a procedure only a small percentage of plastic surgeons perform. Even among those who do, there seems to be a tremendous difference in their level of experience and confidence, meaning that one might tell you you are absolutely not a candidate for the procedure while another will tell you you are an excellent candidate. So, keep trying until you find someone who feels confident doing a procedure that will accomplish what you are after. DIEP is only one alternative for breast reconstruction, so even if you find that you truly are not a candidate for DIEP, there are always options.

(II) Expectations

My feeling is that the most important expectation to be realistic about is what your result is going to look like, both immediately after the surgery and in the months to follow. This is another area where surgeons seem to differ quite a bit in what they tell you. The truth is, for the first couple of months, you're not going to like what you see. The amount of swelling and distorted shape can be tremendous and takes a few months to quiet down. Second, most surgeons seem to want to show you only the photos of their best ultimate results. It would be more helpful to see some of the less perfect results, so we can remember there are no guarantees. Finally, be prepared for a multi-step process. Stage Two surgery is almost a given, involving contouring and flaw correcting plus nipple construction, usually done as out-patient but also requiring significant recovery time.

(III) The hospital stay

DIEP patients are usually hospitalized for several days, because the newly-grafted blood vessels are so delicate. That is what will be closely monitored while you are at the hospital. In the event of a problem with blood flow, you will be returned to surgery to fix the problem. The rate of blood vessel failure is currently between 1-2%, according to the doctors mentioned in these forums. In those cases, the entire flap fails and you are back to the drawing board. You don't need to bring much with you to the hospital because it is likely you won't be up to much of anything until after you return home.

(IV) Recovering at home

This part is usually just as the doctor will tell you. You won't be able to lift anything over 10 pounds for a few weeks. You are allowed to drive after two weeks but a lot of us aren't comfortable with that until four to six weeks after surgery. You also won't be able to reach above your shoulder on the DIEP side. We are all unique, and your doctor should be able to give you an idea when you can hope to return to work or other normal activities.

You'll read here a lot about the Week Three to Week Four slump. For some of us this stage is severe. My surgeon told me to expect a period in which I will regret having the surgery altogether. That's how common it is. It helps to know this in advance, but it can be very disheartening despite trying to prepare.

The lower abdomen incision is the biggest part of recovery. It will be hard to get comfortable sleeping for the first couple of weeks at home. You will probably need medication to help, for pain and for anxiety. You won't be able to stand up straight for several weeks, because your skin has been stretched from your rib cage down to your pelvic area. You will almost certainly come home with drainage tubes that you will have to empty periodically. The doctor will remove them when they stop producing excess fluid, which can be anywhere from a couple to several weeks. Our bodies are all different! You may or may not be allowed to shower for the first few weeks. Some patients also have wound issues. Incisions open up, and fluid seeps out. After a few weeks, a lot of us find that stitches start popping up through the skin along the incision lines. Usually, the issues that arise can be remedied at home, but some may require medical intervention.

You may or may not come home with compression garments. You'll find lots of advice here about clothing and compression. You won't want anything around your lower abdominal wound, not even your usual soft underwear, and you won't be comfortable in your regular bras for a while.

Swelling and redness will go down over the first few months. Scars will continue to fade for a year or longer, until you will hardly notice them anymore.

(V) Joy

Mark your recovery week to week, rather than day to day, and you will see continual improvement. One of the greatest feelings, even immediately after surgery, is to have that warm, soft breast as opposed to an artificial implant. Another huge selling point is the fact that this is now a natural part of your body that will change with you as you age, gaining or losing weight, even eventually drooping, so the symmetry you have achieved will probably last a lifetime! I think for a lot of us, this is hopefully the end of a long journey after losing our breasts to mastectomy. We will never be the same again, but the DIEP procedure feels like the next best thing.
Hey, maybe we should all try to write a few paragraphs about what we would say to new patients considering DIEP. We could put those all together. I plan to put some kind of finished document on my web page. Thanks everyone. You have made my journey so much easier to bear and I will always be thankful.

Thank you so much, MsW2012, for your thoughtful summary!  It's so hard to make the DIEP decision!  It seems so daunting at times.  Yet, because I've had rads, the DIEP is pretty much my best natural tissue option.  Reading your summary confirms I will need Valium to get thru the first couple of weeks. . .oh how I hate cancer!

I look forward to other women's summaries. . .MerrellGirl

Well put Msw, I think I will wait to post about my diep experience until I am months out, because I am def at that stage of, "What the hell was i thinking?"

And thank you for answering my questions ladies, it's so hard to keep up in here, especially on pain killers,

Lipglossmommie, you crack me up. Good to see you can put the slump in perspective. One more week and I bet you'll be seeing things quite differently, yay!

re Vinnie and insurance- they do not take insurance in MD, but will give you some info to help you file  often insurance will try to say that they don't pay unless done in a medical setting.  Currently $600 for United and $800 for bi  there is a thread on bco for gals hunt to Vinnie.  In NOLAN they will file insurance but I have heard there is either a deposit or copy and they favor NOLAN patients, understandably  

Scars-my PS told me it can take up to 2 years and that I should be patient.  We all tend to be anxious to put it all behind us.  I have had success with pulse dyed laser and plan to do that once I get closer to the 2 year make for all scars  even though my DIEP was 2 years ago, the ab incision is only 15 months.  Some breast incisions are fresher than others  my cleavage incisions are only 4 weeks so I am going to plan carefully  the PDL usually tabes several visits and is not covered by insurance.

jmb5, that's a great question! It's probably a matter of perspective. Remember when we were teenagers and 30 was so old? Ha! Now I'm 54 and still not "old." "Older," maybe! I don't know. When I picture older skin, it's thin and papery. I'm on my way there for sure. I figure that means my scars heal faster. Let's give ourselves a few more months and just see.

On way home from a wonderful painting class at the Cancer Community Center of N TX and a guy rear  ended me. I felt the seat belt pull across my chest and was frightened on several levels. The adrenalin made my heart race and the belt was tight across my breast...panic. All is ok now. No bruising or pain anywhere. Minimal damage to car but I need another relaxing painting therapy! 

Teacher how frightening for you. If you are like me I tend to treat my new girls like newborns and fret over every bump and jar. Hope all is well with you on all levels

MartyJ and Georgie - BRILLIANT

Lipglossmom - I have firm / soft / firm areas too. Some days I can feel a lot of firm areas and some days they are soft and I can't stop feeling them. I know it is hard not to assume flap failure since that happened to you before, but try to hang in there. Can you put on your soft surgical bra to give them a little "hug". I find that helps the firmness to go away. I have graduated to a soft sleep bra (Soma) that doesn't add pressure, but holds them slightly. 

MartyJ - In my pre-op yesterday she said I could be ready for nipple in next week's surgery. I'm afraid. I don't know if I want it yet or not. If you are saying it's hard to hide the protectors, that may be a good excuse to wait until December when clothes are heavier/thicker even here in coastal Alabama. I'm very curious about the tat options. We will have to talk in February.

jmb5 - since I am 48, I'm going with you're a younger patient. 

julieho - YAY for a date!

Teacher - Yes, you need a redo on the painting class. My friend just had a wreck and that was her first thought too, my breasts! I'm glad you and the boobs are ok.

Georgie - I still have my pre-chemo photo on here. I miss my hair. I have a pixie now and it just won't grow.

IzzyB, I'm glad my idea was helpful. I would still love to hear from others with their own ideas about what we wished we'd known. I confess I haven't read all 5,000+ posts! Working on that. -Elizabeth

I'm a little over 2 weeks out from my stage 1 DIEP. My PS told me to massage vaseline on my breasts the last two weeks before surgery 4 times a day. Now he's saying to go back to the vaseline massages or cocoa butter. Do any of you have a preference?

I had a funny moment yesterday. My "girls" are starting to settle in a little and I noticed on my left breast a flattened area. I looked more closely and discovered that it is my appendectomy scar! What a hoot! I would be the only one who noticed it because it is very faint:) I needed a good laugh!

Lovesroses, yes, that is a first, love when we get a happy giggle from something.  I noticed when shaving my underarms for the first time after my surgery that the hair was not where it used to be under my arms.  Was bizarre to shave in front of my underarms instead of directly under..... 

Teacher hoping you are doing better on all fronts, between the absorbing of the bulge post surgery and then the scariness of being rear ended.  Grateful things weren't hurt.

Marty, I am researching all the colors people select for tattooing, it is amazing how widely it varies.  Mine will be done Dec 2. 

As far as the protectors I did not use them post nipple surgery, but instead had makeup remover pads with circles cut in center (someone here gave me that idea) that had ointment on the part facing me so there was no sticking.) Mine have never flattened but surgeons all do different things.  

I had company over, newly met cousin's wife who waxed eloquent about breast cancer recurrence and they finally shut up when I said "I had breast cancer".  Note to self:  Speak little and listen much since you never know what is going on in people's lives.....