DIEP 2014

Hello, just checking in. I am happy to report that now 8-1/2 weeks after DIEP I feel wonderful! Like pzercher, I too have started running, well, jogging for me. Haven't been able to do that since my last child was born so major yippee! All that remains is a little feeling of rawness from chest down to lower ab. I still have two very different girls but like Teacher64 said, I am loving my new, warm breast! It's real, alive, warm, soft, comfortable! I look fine in a bra and in clothes and that's enough for me. I haven't forgotten about writing an article about all of our experiences before, during and after DIEP. I figured out I need to let go of my normal writer's perfectionism and just get something done so it can help women here and elsewhere. So, I will post what I have, hopefully by next week, as a draft and ask for suggestions. I love feedback and I think the more suggestions I get the more helpful the finished product will be. Of course it's all patient feedback and not medical advice, I will make that clear, and try to include as much humor as possible. Plenty of that here! Like many others here, I am extremely grateful for the forums here at bc.org. From chemo to rads, recon and finally DIEP. I wish I had known about it from the beginning but glad I found it early in the chemo process. Have a good weekend. I love what pzercher said about not being too hard on ourselves: We do the best we can with the information we have. That applies to life in general, doesn't it? Parenting... so Happy Weekend, speedy healing and recovery to everyone.

Hi everyone,

It has been awhile since I posted on this board but I have been periodically trying to keep up with everyone.  I can not thank you all enough for all the help you provide in my considering the DIEP surgery.  My chemo brain SUCKS so I am not good at targeting my responses to each of you because I can not retain who said what without continually scrolling back to see what each of you wrote - and then I fear I will forget one of you and you are all so great I would hate to do that.

So I address you all collectively in saying thank you.  And good luck and good healing to all those actively in that process.

I am going to Beth Israel Boston to meet with Dr. Lee a week from today.  I had a double mastectomy July 3rd 2012 with immediate reconstruction using tissue expanders.  Had a post op infection three weeks after, hospitalized for 6 days and had left tissue expander removed.  After chemo was done the end of 2012 and my blood counts were good I had a tissue expander put back in on the left side.  (The right tissue expander was filled back during the summer months and just remained in during chemo)

Then after my left expander was filled, the third fill gave me another infection - this time not as severe and they treated me for two months with antibiotics.  I was not getting worse but the infection was not going away.  Finally they cultured the fluid around the tissue expander and discovered what the bacteria was and we decided to "chance" removing my expanders (which I believe my body just did not ever fully accept) and my surgeon scrubbed out the chest wall and placed my silicone implants in.  I was then put on IV antibiotics to treat that specific bacteria for two months.  After two months - I was finally good to go.  Infection was gone and I finally had my implants in.  BUT, I HATE THEM.  UGH

I am in constant pain across my rib cage and having my pectoral muscle stretched over the implant is just incredibly uncomfortable.  Additionally, my two breast are VERY lopsided because my PS said that the right side, which was only removed once had a much smaller pocket and the left side is tight.  Anyway, fast forward to my now wanting soft, warm, natural breast that will grow, move and shrink and even sag with me.  Yes, I miss them sagging.

So, I see the surgeon to find out if I am a candidate for the surgery.  I have to have the surgery out of state as I live in Vermont and no one here does the DIEP.  So, my question for all of you is what would you suggest I ask the surgeon.  Some of my major concerns are having the surgery in Boston and having to drive home to Vermont (4 hours) for the recovery and how I can do all the follow up etc from such a long distance.  Other concerns are time-line.  I have my daughters wedding next June and want to be healed and as fully recovered as possible by then.  I am targeting having the first stage done the first two weeks of November, then the second stage sometime in early February with the hopes that I will be healed, have my stomach muscles somewhat back and ready to dance at my daughters wedding in June.

So, suggestions, thoughts, questions - please give me as much as you can.  I SO value all of you and your experience.  Nothing better than going to the source.

Much love,

Julieho

Hi KB,

Great to hear you love your new boob.  Itching seems to be a common complaint.  Also, you need to keep moving.  Take small walks many times a day.  I assume you are still in the hospital?   The drains are removed beginning approx 1 week after you are discharged.  This sometimes can take longer.  I think I was 3 weeks before they took the last two out.  Keep the positive feelings flowing!  You still have a few more weeks before you start to feel close to normal again.  It may feel like forever to you but it will be over before you know it.  I'm 3 months post now and feeling great.  Just started taking Tamoxifen - so far so good.

Trish

Marty j :   Watermelon?????   Hmmm.  Have to give it a try.  No, I'm out of hospital and at hotel.  I actually have been walking since 4 hours post op.  Every hour.   Now I am going slower, longer and every other hours.   But good golly I probably have an extra 20lbs of fluid that is not going anywhere but my legs.  I Will keep working it. Thnx

Hi, Kb, welcome to the other side of DIEP!

1.  Generalized body itching is frequently caused by narcotic pain relievers, and it doesn't mean you're allergic to them.  They just cause some people to itch.  If you're itching around your surgical sites, you may be sensitive to adhesive.  Whenever I have Tegaderm applied, I can count on it itching like crazy, and I pull it off myself before it can give me dermatitis underneath it.

2.  Do you have a fever, or are you just warm?  A fever is important.  You need to call your doctor if you're feverish. 

3.  During a surgery like this, you're given buckets of IV fluids.  They seep into the body's tissues, especially the legs, if you're up walking  a lot.  It will take a week or two for your body to normalize the fluids.  If you were to weigh yourself now, you'd flip over how much weight you've "gained."  It will go away.

4.  Drains are generally removed when the are collecting no more than 30 mL in a 24-hour period.  Usually this takes at least 10 days or a couple of weeks.  Don't push to get the drains removed early--a seroma, a collection of juice that could have been drained by the drain, is annoying and can lead to an infection.

Best wishes for your recovery!

So I just received my Hospital paperwork and it says Left breast reconstruction with Tram. Has anyone here had that? 

Hi all, I had diep reconstruction, right side on Aug 26th. Was just wondering if anyone had excessive oozing at tummy incision? All 3 drains have been removed, but there is one area, about 2 inches in the middle, that keeps having to be cleaned and re dressed! The rest of the incision is clean as a whistle.  I am going to see ps tomorrow, and am dreading he might suggest more surgery! I know everyone says it's worth it in the end, but I'm finding it most uncomfortable at the moment, beginning to regret making this decision. Would love to hear that this is "normal" in the healing process, and will just take time......thanks in advance

D

Mary, that sounds really helpful.  After my SGAP, I made a little "nest" of pillows in that shape with some larger pillows under my head/back to keep me slightly elevated.  I didn't have to worry about a belly incision for that surgery but lying flat was uncomfortable because of swelling.

Kb33: I am almost three months out, and I am still distended with pregnant-like belly. No one knows why? I did a complete cleanse yesterday: colace, miralax, and some other laxative - all clean and no relief. First, do you meet with PS before Tuesday? Second, it will take time for bowel movements due to all the meds used during our surgery and recover; and Third, can you change your departure day? I am so sorry that you are so uncomfortable .... The belly will not change for awhile ...but I know you will feel better once you can "go".

Sarahbb: How are you doing? I had a hysterectomy, and since it involves your abs, you are probably still very sore. Hugs!!

I hope all enjoy the "best" Sunday night.

Stay the course......

Lisa

yep, I'm very sore! Been sleeping since I came home. My husband and one of my kids are now sick. So that's helpful. Why can't things just work out better? He hardly gets sick, and right when I need him...

Surgery went smoothly, nothing detected abnormal. I woke up in recovery room begging for help with my pain, just crying and saying help me, it hurts. Seems like it took a long time for pain relief. 

Be back when I feel more up to writing.

http://www.target.com/p/boppy-bare-naked-pillow-with-slipcover-30-bonus-gift-wildflowers/-/A-11118115?ref=tgt_adv_XSG10001&AFID=google_pla_df&LNM=11118115&CPNG=Baby&kpid=11118115&LID=9pgs&ci_src=17588969&ci_sku=11118115&kpid=11118115&gclid=Cj0KEQjw-dSgBRDb0oOl9MzxqMEBEiQAkHqy-eqXQVgBQq8uINVjsAAuObTwQG_tMf2QOBB7AcAD7w4aAjbQ8P8HAQThose pillows you are talking about are called Boppy's.  My DIL loved hers when she was nursing both grandbabies.  I am adding a link so you all can see what they are.

Mary: The pillow idea sounds great. I also made a "nest" with pillows under head and on either side under the arms; I felt like I was in a cocoon! Very helpful.

Kb33: Ugh. I feel your pain. Why is bowel management such a challenge??? My problems hit on day 7 post surgery, and even though I was sore, I forced myself to get up on the treadmill and walk, which helped get things going. Exercise stimulates the bowels. I was on a stool softener but didn't try the Miralax and stronger stuff soon enough. Hang in there.

Sarah: Husbands plan their illnesses at the most inconvenient times! In some beautiful instance of karma, my physician husband hit himself in the sternum during home repairs this weekend, and now has pain in the exact same site where they remove our rib for the DIEP. Everytime he groans I give him the stink-eye. Bah ha ha ha!

DeeMay: My belly incision just had one angry looking spot that needed anti-biotic ointment and oozed for several weeks. It is healed now but the scar is quite a bit darker than the rest.

Hi all! Happy Monday. Sarah/enjoy thanks for the encouraging words on scar/nipple healing. I went today to the local P.S. and she said she could make some modest modifications for better symmetry in size and shape. It all has to go through my insurance but they said they usually have good luck getting things approved. I am torn about another surgery but this would be outpatient 2-3 hours, and would take care of the dog ear on my lifted breast and make things a bit more even. I still have some side breast on the recon side and the shape and size of the breasts are different. I am so pleased I did the surgery and I really think after going through all of this, it would be worth the last tweak.

KB glad to hear you are doing so well and pleased with your results! I had my last drain out after stage 1 at 3 weeks but everyone is different. I did have itching but it was related to the pain meds. I took benadryl and then we ended up changing meds. Itching stopped after pain med change...What did you find out about the heat and swelling in the legs? 

Sky78 I had radiation and then a delayed uni DIEP reconstruction and mine turned out well. The great thing about reconstruction of this nature is much of the radiated skin is cut out and replaced by the tummy skin. I did not have any healing problems after stage 1. 

Lovesroses, pzercher summed it up so well. I hope that this week is better for you. It is a roller coaster ride emotionally and you have been through alot in such a short period of time. Pls. come here often and lean on those who are close to you. We are are all here for you!

Lilith it was good to see your update and sounds like you are considering all of your options. Pls. keep us posted and prayers your way for discernment for what is best for you.

Brendarj have you heard anything back on your ct? How are you doing? Maui? Sounds amazing, you have some great kids! What a wonderful gift and something so lovely to look forward to!

Julieho your time line for the DIEP sounds doable for your daughters wedding in June. The travel for surgery can work well with some planning. Questions I would ask potential surgeon, how many have you done and how long they've been doing them, success rate, pictures, ask to talk to 2-3 pt's PS has completed work on, what will follow up look like, etc. Best of luck in your search for a PS!

Marianne, what did you find out about your pre op paperwork and having listed TRAM on there? Aren't you having a DIEP?

Pzercher, you are the first person I've heard use the word stink eye besides me. LOL! Love the humor found here. Good medicine!

Teacher how are you doing? Are you patch-less yet? How is the vision?

Well! After all my concern re belly incision, my ps was more concerned about oozing from breast flap today, and I underwent a procedure called debridement. It was done under local anaesthetic and took about 45 mins. Basically, they cleared out most of the ooze and sewed it all back up again. Apparently it makes for faster healing......here's hoping.  Thanks Pzercher for the uplifting words......helps to know there is light at the end of the tunnel. I have to learn patience.....thought I'd be bouncing around the place by now. In all the surgery I've had since diagnosis, this has by far been the most challenging.  Onwards and up tho......                                                     So grateful for this forum.

Stay well everyone💐😃

went back to work yesterday. Having terrible back pain right on the lower spine. I stand for my whole 8 hour shift. It starts hurting about 30 minutes after I start. Anyone else have this problem. I'm 5 weeks out from surgery today.