2018 DIEP Surgery
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runrcrb I did mine out of state. I seen my PS on Saturday before I left and I will email her pics weekly. I'm just having a moment im.sure tomorrow will be a better day .. Thank you for reaching out.
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rdeesides - I did not have a CT scan ... and ended up with with a much longer surgery and a vein graft bcs the vein on one side was not so good. I do remember the PS locating the 2 veins with her stethoscope at our first meeting and having a little trouble with the one. I'll ask her about it next time!
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Having an MRI is an expected part of determining if this surgery can be done and it also gives the surgeon a map of your vasculature. I had one preop.
Mucki1991 - we are here to listen to the whining! I posted on here many times just complaining about this or that (especially post op -- the ones I posted while on pain meds are especially bad!). You are in the thick of it! It gets better! One day at a time. sorry about your mom... rest and take care of yourself xoxoxo
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carmstr835: Wow- you were extremely brave to ride in a bus and sleep on a gym floor in all that heat! I am definitely riding in the minivan on the way to the conference!
Lula73-- Your experience gives me hope that I can do this! I will make sure the kids know that it will be a little different this year and I definitely will take care of myself during this trip. If all else fails and I feel really feel terrible after all this, I don't have to go
. What are all the pillows for? I'm really concerned about going through security in the airport..being scanned and patted down. Would it be unrealistic to drive from Northern VA to NOLA and back?? 0 -
Shelly beans,
You have lots more healing to do and hopefully your breasts will soften up more. My outer areas did, but the middle part of my chest at the sternum on both sides is still very hard and looks weird. He will address the weirdness in my revision but he sort of stated the hard areas are fibroid tissue caused by the radiation. This wasn't there until my DIEP and that was 6 months after the radiation was completed, so I am not sure I agree with him on that. Just worried that I will have even more scars. I am worried because of the possibility of recurrence and how will I know if there are hard areas that are tumors growing? That is where my cancer was on my right breast, so yeah, I am more worried now than I was before the DIEP, because before the DIEP I had no hard areas or lumps, just a completely flat chest.
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Pharmdgirl- you need about 4 pillows behind you, 2 under your knees and at least 1 under each arm in the bed. This is to keep you in a reclined position in the bed on your back, keep tension off the tummy incision so it doesn’t separate and to keep your arms propped for optimal blood and lymph fluid circulation. You can’t lay on your side til at least 6 weeks and no tummy til at least 8 weeks. Laying flat in the bed is a no-go. Ideally put your feet up anytime you’re sitting or if you’re in a recliner with 2 pillows under the knees again to help reduce tension on an incision. On the airport, request wheelchair service from the curb with your airline. Thank the wheelchair person letting them know how grateful you are for the service since you just had surgery for breast cancer. They will wheel you right up to the metal detector. With a wheelchair you will go through the old timey metal detector not the scanner. Try not to look too healthy or energetic in the chair as that’s a signal that you may not need the chair and you’re using it to get something past them. If they offer you a hand to help you out of the chair, accept it. (Easier to use hand sanitizer on the other side than increasing risk of a pat down. You’ll go thru the detector, they’ll pat down your chair and you should be good to go. Make sure you don’t wear anything with metal or sparklies on it. Plain cotton blousy shirt, yoga pants, the kangaroo pouch the center gives you under your shirt to hold the drains (don’t safety pin them anywhere for the airport - use the pouch), socks and lined crocs is what i wore (yeah crocs, i know...I’m not usually a crocs girl but they were super comfy and easy to slide into/out of with no assistance and no metal on them anywhere!) Give your travel companion all the carryon stuff - i just had a pillow and blanket. Limit carryon stuff to something to do on the plane (tablet, book, crochet, etc), your meds, wallet with credit cards and ID, and your post-op care paperwork. Put everything else in a checked bag. (They will give you lots of supplies to take home so make sure you have room for them in your checked luggage. I’d say reserve 1/3 of a large suitcase or almost 1 entire carryon size suitcase.) Basically don’t give them a reason to want to pat you down and you should be fine. We considered driving for stage 2 from NC but it was just so much shorter to fly and I just wanted that journey home to be as short as possible. We did book 1st class tix for the flight home after stage 1 for the extra space/comfort and comfort+ seats on the flight home from stage 2 (which is an easier surgery) for the extra room getting into and out of the row). Hope this helps! Where are you in VA?
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Lula 73--Thank you for taking the time to explain all these details! I'm truly at the top of northwest VA, in Winchester. I'm not currently on Facebook, but I could create an account if you think that would be helpful to me?
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Mucki, I think you're healing is about on track. It's a huge surgery, probably akin to a transplant or open heart surgery. At one week I would expect you to be fatigued, sore, and grumpy. You're probably tired of the whole business and wondering when you'll get your life back. Trust me, you will.
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Okay, so it's been a little over 6 weeks since I had my DIEP and I wanted to post my experiences. It's been a rocky road and I don't want to scare anyone away from that same decision, but we all need to read about the good AND the bad parts of this surgery.
I had my DIEP by Dr. Wise at the Center for Reconstructive Surgery (NOLA.) This is a completely amazing practice where everyone is hyper-focused on breast reconstruction. I also had a ventral hernia and diastisis recti (splitting of the abdominal muscles due to childbirth) which were repaired and tightened up snug during my DIEP. Surgery was about 8 hours. I usually have a lot of nausea with hours of vomiting post-op, but not this time. In fact, the only time I threw up was when they gave me a Percocet so I could get up for a shower. Big mistake! After that, no more narcotics, just Toredol!
My hospital stay was uneventful. My breasts look great. I had relatively little pain in my breasts and abdominal incisions, but a lot of pain from the diastisis repair. The muscles are pulled so tight that you don't have much support in your back. The only thing that really helped was wearing TWO abdominal binders at the same time.
Unfortunately, the night after I was discharged from the hospital I woke up with severe chills and very short of breath. I knew right away that I either had pneumonia or lung collapse, so I went back to the Center in the morning. Sure enough, a little pneumonia AND a small lung collapse. Thankfully, i didn't have to be re-admitted, but i felt all kinds of terrible for several days.
I flew home from NOLA after my 1 week post-op visit and everything went well. Of note: we chose to fly 1st class going home, to give me more space. I had to wear those leg pumps to prevent blood clots, so having that extra space was especially helpful and it was nice not to have to sit next to a stranger, with all my dressings and drains, etc.
At the 2 week mark, my abdominal incision opened up slightly in the middle, the area of greatest tension. I sent pics to the Center and followed their advice.
By the 3 week mark, the incision had opened up a lot more, so I went to my local GP to let them have a look. It was pretty ugly. They put me on an antibiotic and sent me right over to a wound specialist, who advised me to go back to the Center.
By the time we arranged for a flight, the wound was getting worse by the day. The morning we left for New Orleans I could lay my whole hand in the wound and it looked godawful. I practically threw myself over the desk at the Center when we got there and they admitted me at once. Dr. Wise was unflappable. He reassured me that although it looked bad, he knew what to do and he could make it better.
I went to surgery the next morning where for 2 hours they deep cleaned the necrotic tissue from the wound and put me back together with what looked like fishing wire. This incision was NOT going to open up!
That was 3 weeks ago and I'm doing great! Stitches and drain are out. The diastisis repair site is only mildly sore now and does not interfere with my day. I'm back at my part time job, doing the shoppin, cooking and planting flowers. I still have lifting restrictions, so no handling wet laundry or swinging a hoe. I still take a Toredol at night--usually by the end of the day all those tissues are a little inflamed.
Despite my crooked road to recovery, I am still happy with my decision to have the DIEP. My breasts seem like a marvel, after 2-1/2 years of deformity. They're so pretty! I can't stop looking at them. Phase 2 will shape them up a bit, but honestly, they look pretty wonderful right now.
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Mucki1991 I felt exactly the same way - there are just so many parts hurting at the same time it's hard to feel positive. I'm approaching 3 weeks and while I'm far from 100% it does get better. I am pretty sure I'll be at least another two weeks before I'm feeling close to my old self. So just hang in there - hopefully we will all be feeling a lot better this time next month. An I'm so sorry about all you've gone through. After last year being my "year of cancer" with mastectomy, chemo, rads, ovaries removed, the last thing I wanted this year was a surgery but I know that next year I'll be glad I got this done.
Rdeesides - the CT scan is normal and is a good way to get a nice look at the abdomen area. I was happy to see no evidence of anything new.
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I found out today that I need to switch to another breast surgeon because mine is going to be out on medical leave at the time I need to have my BMX. I had a consult with 1 plastic surgeon who said that she prefers to do reconstruction AFTER radiation. This new breast surgeon's office is telling me they prefer to do it all in one surgery. I am so confused now. Has anyone had BMX and diep and then had radiation?
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Hi all. How are people securing the stomach drains after surgery? Also are you mostly wearing yoga and sweat pants?
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Sherrylann, I would lean towards the plastic surgeon’s preference. Many women have had radiation after reconstruction but I’m not one of them. My PS said at least 6 months after radiation and mine was 8. He was able to remove a good bit of the radiated skin (tough and non-elastic) replacing it with tummy skin. I am very happy with the outcome
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I wouldn't want my DIEP breast to get radiation. I too had most of my radiated skin removed and replaced with tummy skin.
Yes to yoga pants! I also wore nightgowns/ night shirts. It felt good not to have the waistband rubbing on the new belly button.
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Sherrylann987 - I can't imaging having radiated my DIEP skin. I had 35 rounds and it's been right at a year since it ended. The radiate side changed so much - not just in the first six months but even after that. I had a BMX with TE's and the radiated side was so much higher than the non-radiated side. My dr. did as much as he could on that side but it still feels almost like leather under my skin. The other thing is that radiation really thins the skin - at least it did for me. Just my 2 cents but knowing what I know now, there's no way I would want to radiate new DIEP tissue.
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Runrcrb, OCDAmy, and Shellybeans .... thank you all for your responses! I agree that I should go with PS recommendation. Makes most sense. After that phone call, I called my daughter and we both agree that this new doctor/office is not the right one for me, so tomorrow I am choosing a doc who just came out of her fellowship. She sounds good, but most importantly her staff is the same staff as my current BS and they are AMAZING!
One more question for you ladies, if you knew you were getting DIEP after radiation, did you get tissue expanders or anything done to your breasts in prep for the future DIEP?
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pharmdgirl-there are a lot of ladies on the NOLA page that aren’t on here and you can ask how NOLA handles certain things that pertain to your case so you can answers from ladies who had similar case there. I’ll PM you with a link to my FB page. Once you’re signed up for FB, just click the link and click send friend request. I’ll add you as a friend then add you to the group. You’ll start getting posts on your FB page once you’re accepted by the admins of the group. No one but other members of the group can see and respond to your posts and photos.
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Mustlovepoodles,
Thank you for the informative post. It's always helpful to hear the good and bad so we have a realistic idea of what may happen.
So glad you are happy with your results, and wishing you well for continued healing!
Vickki
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Mucki...so sorry to hear of your mom's passing. I agree with Runrcrb, at just a week out you will definitely still be sore. I didn't begin to feel improvement until about 3 weeks then after that, it seems that each day is better. Rest and sleep all you can! Take it easy and I'm sure you will soon begin to feel more at ease.
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Sherylann, I had BMX with tissue expanders bcs I planned on getting implants. I had large breasts so my PS had breast tissue to work with to create breasts/pockets, and keep scars in the breast fold. For DIEP, I only needed the “stuffing" to fill the pockets and not tummy skin to form breasts. My PS was able to do all she needed to do (including node transplant) using the same scars. (Not sure what the scar situation will be for stage 2.) For me the TEs worked out well, but I had a miserable 11 months while they were in. I got thru radiation pretty well - my skin looks and feels fine but it has lost elasticity. Radiated side is not filling out as much as the other.
esny- Re drains - I pinned them in pairs to my bra, underneath in the front, two on each side. I made myself a drain holder to wear around my neck but it was uncomfortable and heavy so I didn't use it. Putting them all on one lanyard was too much - but doable in the shower
One thing I noticed about my BMX drains vs DIEP drains? my BMX drain tubes were hella long so that if I dropped a bulb it could hit the floor without pulling on the tubing. I'm 5'11 so with 4 drains that was a lot of tubing. Didn't have that for DIEP drains and I did drop one and almost had a heart attack but it didn't pull. I guess it's surgeon preference?
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Sherylann, I planned on getting inplants so I had TEs under the muscle. Rads did a number in my breast. Skin thinned, expander moved up to almost my collarbone and it got hard. My PS was afraid that an implant would not work soI decided on DIEP. My new breast is almost all new skin.
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Sherylann
I got tissue expanders after BMX in preparation for rads. Now am going in for DIEP at end of October. TEs have not been that bad over the past few months. Mostly just hard and dont really move but not painful.
Thanks Lanne for the drain advice.
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sherrylann,
I had a TE put in at mastectomy even knowing that DIEP was my plan. I don’t remember being given a choice. Although i felt it every day, largely due to the fact that it was under my pec muscle, I wouldn’t have wanted to be flat for 15 months. Radiation (and pushups) resulted in a very small tight breast by the time i got to reconstruction. I didn’t realize how much had changed until I looked back at pictures. Happy to share pictures via PM if you want. I’m out of town for work until next weekend so can’t get to the pictures until 10/13.
Good move on finding the right breast surgeon for YOU.
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Sherylann - same as what others said. I didn't even think I was getting DIEP - I totally expected to get implants. After I saw what rads did there was just no way - think skin and even though it was under the pec it moved up. It's so hard to be facing all of these things after dealing with the treatment of BC - I could have never gone with the DIEP early on - I just mentally couldn't have handled a surgery this big. So while I wish I was done, I know that path wouldn't have worked for me.
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Shellybeans, gosh that is so me. When my PS mentioned flap surgery at my very first consult I said no way on earth I would have that big surgery. I had to ease my way into it and I'm glad I did it.
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Me too
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Hi ladies -So today is week three and I'm increasingly frustrated at this healing process. I called my PS today and sent pictures because I do not see them again until next Thursday. My left (non-cancer) started oozing and looking a little nasty - I think because of the surgical glue coming off. The right has just looked gross to me all along. They rx silvadene - which I thankfully had an unopened container of from rads. Did anyone else have to use silvadene? Did it help? Am I just having the week 3 blues? I remember with chemo week three was just the worst - I really, really need to go back to work by 10/22 and I feel like my healing has just hit a wall. I still can't stand up straight. I am really starting to question why I ever did this.
Please tell me this is normal. Intuitively I know it is - but I'm so ready for this to just be over.
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I guess I'm a ‘Go big right out of the gate or go home kind of girl!
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OCDAmy and ShellyBeans -
I was dead set against DIEP even though I know someone in my circle of friends that had it and was very very happy with it. I thought there is no way I can go through that after chemo and rads. BUT once I was a couple months out from Rads and it was time to start thinking about exchange surgery, I knew I would be happier long term with DIEP. So here I am, looking for a good DIEP surgeon.
R
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ShellyBeans ..... yes about the silvadene. I used that to prevent any infection and to make my scab areas soft. It would get a little mushy and gross (I think I has surgical glue mixed up there & my crusty scabs... at about week 4 or 5 it was time for all of that to come off and the silvadene helped -- that stuff is great).
I'm not sure about the oozing you are describing (pus? interstitial fluid? blood?) but I had drippy blood until a little after week 3. My incisions are under my breasts (a line from the edge of the areola - or where the areola used to be - to where the breast meets the chest) and I would get some oozing of blood dripping from there. Good thing you sent a photo to your PS -- make sure you don't have any infection.
My guess is that you are approaching the space of post op and almost fully recovered (yeah!) and you are getting frustrated. I remember feeling like this.... the standing up straight just keeps getting better. Remember our mantra here: be patient and kind with yourself!! Take a rest day
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