2018 DIEP Surgery
Comments
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Thanks Bella! Good to hear from you! I started massaging a couple of days ago and I’m like hmmm am I really doing anything? Haha. I will keep at it! I remember back last year the PT telling me to massage the scars a few times a day and a good time was while driving on my commute.. aybe I’ll keep the breast squeezing confined to when I’m home 😂.
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Teaberry11, it does improve over time...it’s not immediate. It is important to remember to do this in private (LOL) 😂😂
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I had my surgery on Monday, they did have to use muscle from the left side. Because I have reactions to so many medications the first 36 hours were torture. They finally decided that I can take dilaudid as long as I take benadryl too, I feel so much better. For some reason the most severe pain is right above the pelvis, the surgeon is not sure why, ge thinks it may be the work he did on my c-section scar.
They took the catheter out this morning but my bladder has yet to cooperate . I have had my 3rd iv infiltrate, waiting for the PIC team to come and find another vein, I have horrible veins so each one that infiltrates is a huge pain. My whole body is swollen, but the left arm is the worst.
Tomorrow I start PT, hoping to be out of here quickly.
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Teaberry, I have a necrosis lump on one side post bilateral DIEP. It has gotten smaller over time (8 months) but is still there. I haven’t had stage 2 yet.
Brandi1616, I have the same issue with sizing. My non-radiated side is a DIEP poster child - grew a bit after surgery and is soft and full. Ms Radiated Side is about 1/3 smaller and not as full, though soft. Radiation does a number on everything inside our breasts so this outcome isn’t surprising. My surgeon said the longer I can go before stage 2 the better. I have a boob prothsesis I use when I care who sees me, otherwise I don’t fret. I’m fine with smaller boobs at this point.
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I had my diep yesterday. 6 hour procedure - 2 hour recovery. They want me only on oral medications. No IV. I’m in pain in both my chest and abdomin.
Still have the catheter. They want me walking but the pain makes me cry
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Hi Simbobby, The so-called "opioid crisis" is sure making for painful recoveries for surgical patients. Hope you are doing better soon.
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bella, if memory serves me correctly you are also the woman who loves looking at her new breasts! Your posts often lift my spirits.
Simbobby - i know it hurts but trust me walking really will help you get past the hurt faster. Frequent short walks. You can do it.
Dipaquette - sorry to read that you are having a hard time. It will get better. I know it doesn’t seem like it now but it will.
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Poppy_Spruce, I was a G cup and went to a B. I told my PS to take them. I have had lower back pains for years and welcomed the chance to go smaller. I'm still only 3 months since my Diep flap in December but very happy.
Can someone tell me what kind of things get done during Phase 2? I go back to my PS in June and he said we will discuss it then.
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Has anyone else had trouble peeing after this surgery, I am 4 days post op and my bladder has yet to cooperate...
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I had no issues peeing. Constipation was an issue. You definitely need to let doctor know so they can check bladder and possible infection from catheter.
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It took me a day after the catheter out before I could pee. The nurse told me to run the sink faucet while I was trying and it worked.cant hurt to try it.
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Simbobby, I hope the pain is easing up a little bit so you can get your walks in.
Dipaquette, I hope your bladder gets back on track very soon!
Sending you both good healing vibes.
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lmdtm23,
Phase 2 varies woman to woman and is not a requirement. I could have skipped it but chose to do the following:
Donut lift on my natural breast so that both nipples were aligned
Lipo on the DIEP breast to reduce the “side” breast as it was uncomfortably full
Slight extension of the ab scar to eliminate the small dog ears
Small incision in the center of the ab scar to remove some fat necrosis. But I still have some 😬
Mine was outpatient and i think I took a week of sick leave. I was running again within a month I think. I was fuzzy from the anesthesia for almost a week having not been bothered in earlier surgeries. I think there is a cumulative effect of having general anesthesia four times in under two years.
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Hi! I am new to this site. I had a recurrence after 15 1/2 years of being cancer free. I wanted a double mastectomy, was refused, told they won't remove a healthy breast. I wanted NO reconstruction, but was talked into it for valid reasons. (DIEP) My issue is that 9 weeks out from surgery I still have two rather large open wounds and a small hole that all seem to be starting to heal, but are still oozing and pink. Originally the large areas were black and hard. I used Santyl cream which worked wonders at breaking up those black areas. Still using it on the "yellow slough." These were caused because I was severely burned by radiation in 2003 when I had invasive ductal carcinoma..
Has anyone else experienced this? I am still on disability from work and eager to get back. I know it takes time, but I feel my PS is not in a hurry. He originally prescribed Silvadene cream. It is my home care nurse that visits once a week that asked him to give me a script for Santyl which isn't cheap but does a great job!
Would love to hear from anyone with similar experience. Thank you!
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It took 5 days but my bladder finally decided to wake up, I was worried I was going to have to go home cathing myself. I know that I went way beyond the normal time without being able to urinate, I was doing the running water and sitting on the toilet every time I got out of bed and again before getting back, my bladder is just stubborn.
I got to go home yesterday, they had planned to have me stay an extra day for better pain control, but I was anxious to be home. I have found the lower back is what makes it hard to walk or stand more than a minute or two, my back was bad to begin with but adding the walking bent over to the fact they removed an abdominal muscle and my back is shot. I can't believe how exhausting even the little things are. I really hope week 2 is easier.
I also bought underwear that would hit different spots hoping one style works, but when you add the incision, drains and the burns on my stomach from a tape allergy there is no good spot. Paper tape is not my friend!
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Dipaquette— I bought a spray that helped with the adhesive removal. It was used at my PS office— I got it on Amazon Sensi-Care sting free adheasive releaser. It really helped, even have used it at chemo to remove steri strips from port and a tough tagaderm covering.
Also, I didn’t wear undies unless absolutely necessary when I first came home. I wasn’t going anywhere so it just was. Made it much more comfortable.
Glad to hear your bladder cooperated! I have the opposite issue, a very nervous bladder so peeing all the time!
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Hello everyone, i haven't posted in here yet . Just hanging around and reading all of the info from you guys, which has been tremendously helpful. I am 41 and was diagnosed with DCIS grade 3 in the right breast at almost 10cm tumor on Jan 9th with positive margins. i had a surgical excision because my initial core biopsy was negative. I then found out i am positive for the BRCA II gene mutation. I will be having a double mastectomy with immediate diep flap reconstruction April 17th. I have been dealing with this since Oct 2018, i am extremely nervous ready to get this cancer out of me. Anyone here have issues with kidney failure pre cancer?? I am a diabetic with kidney failure(i am not on dialysis), but my PS has not said there would be any issues due to this. I know i have to keep my blood sugar in control to help with the healing process.. Just wondering if anyone has any insight on this type of surgery and kidney failure thanks in advance.
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Stephanie, I think it is imperative that you have a nephrologist on your cancer treatment team. I don’t know if the PS can determine if kidney failure is a risk
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i have been seeing a nephrologist on a regular basis well before my diagnosis. She's aware of my upcoming surgery and diagnosis. i am actually seeing here the week before my surgery. just curious about others experience and outcome with kidney disease.
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Maverisksmom - So sorry to hear about your recurrence after such a long period. Re the open spots, I am 5 1/2 weeks out from a unilateral DIEP. My abdominal incision opened up about 4 inches at 2 1/2 weeks and another spot of about an inch a few days later.
They are still open, but slowly healing. The 4 inches is now down to about 2 inches. My surgeon said it would take 2 to 4 weeks to close on its own, but I think 4 to 6 weeks is more realistic. I just keep them covered with gauze and antibiotic ointment, changed morning and evening. They do ooze and occasionally bleed, but my surgeon said this was all normal and part of the healing. Wouldn't close up as it could trap bacteria/infection in the wound. Now that I am used to it, mostly this is just really annoying as it has slowed down exercises and sleeping in a bed - I am still in a rented motorized recliner chair for the nights, trying to not put any extra stress on this area that could open it up more.
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Hey - I wanted to ask about people's experience with and/or doctor's advice about binders to support the abdominal area during recovery. My surgeon was ho-hum about them, said I could wear one if I wanted to but he didn't think it was strictly necessary. I used one only during walking for the first few weeks or so - mainly because my back would hurt then - but not much since then. I'm 5 1/2 weeks out from surgery and not even using it for walking now (up to about 3 km). If you see my comment above however, my lower incision opened up about 3 weeks ago, so whether that is related to this or not, I can't say.
I have 2 friends who each had a unilateral DIEP last year: One used the binder round the clock for at least 6 weeks, then switched to spanks. She ended up with herniation and just a few weeks ago had to have a major surgery to repair the lax fascia in the ab region. I have wondered if the binder played a part in this outcome. The other didn't use a binder at all and she is well healed, all is well, a year out from surgery. She was told by her doctor that they were old-hat, no longer recommended.
Anyway - Thoughts? Experiences with binders? Doctor's recommendations?
TIA!
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it seems different doctors have different approaches to binders and bras post DIEP. Mine never mentioned a binder (and I never read about them) and my doctor was clear - no bra for 4 weeks.
Pre surgery mine mentioned the risk of the ab incision opening and said if it did, it would heal on its own. He said some do and most don’t but studies had shown no benefit from the surgeon going back to close it. He said it’s a bear to deal with but it would heal. Fortunately mine did not open.
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My PS mentioned nothing about a binder. I have a herniated disc in my lower back and it killed me the first couple weeks walking bent over or standing a long time.
My adominal incision opened up after the 4th week and my PS said let it heal by itself and it didn't heal. In fact it got larger. Two weeks later He gave me a choice let it heal on it own (which would take longer) or surgery. I was not very comfortable walking around with the large wound and was afraid of infection so i picked surgery. He scheduled me for surgery to clean out the wound and stitched it up. I developed a seroma after the surgery which was a pain.
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Hi, I am new here. Quick run down on me. I am 65, I had a 1cm invasive ductal in 2003, treated with a lumpectomy, re-excision for clean margins, 4 rounds of A/C, and 28 rounds of radiation from which I got severely burned. I tried Tamoxifen for a brief time, hated side effects and stopped with my oncologist acknowledging my reasoning.
Then 15 1/2 years later (12/4/18) I was diagnosed with invasive lobular breast cancer in same breast. This was only picked up on an ultrasound, mammogram missed it. I had a left breast mastectomy with DIEP reconstruction. As of now I am opting not to do Aromatase Inhibitors, I wrote the reasons on the Letrozole site.
When I got the phone call that I had cancer again, I literally went into shock as I thought I was cured! I know now that no matter what I do, I will never be cured.
This time I was treated at a cancer hospital vs the first time when I was treated at my local hospital. I won't go into all the pros and cons of which is better other that to say they exist and neither was overall better than the other.
I had the 8 1/2 hour mastectomy with DIEP reconstruction in January. When I went home from the hospital no one warned me of what my body would look like. You can only see so much from a hospital bed. Out of curiosity, did any of you go home with antibiotics? My surgical report which I requested claims I was given a script for pain medication and one for an antibiotic. I never received the antibiotic script. I didn't get the report until after my last visit with the plastic surgeon but I am going to mention it, only because if it was a mistake, they need to be more careful moving forward. I didn't get any infection.
When I looked at myself for the first time in a full length mirror, I cried. I have always been fat, now I looked grotesque and huge! I was literally 20 pounds heavier, fluid build up that did go down considerably in the following weeks. I did get down to my pre-surgery weight, then gained about 5 pounds which I attribute to my inactivity while on leave from my job. It would have been nice if someone would have warned me of this prior to my discovery! I ended up writing an email to my nurse navigator that I was so upset at how I looked now that I wish I had died on the surgery table! I never realized that she shared that email with my entire "team." Thankfully I had enlisted the help of a social worker prior to surgery and she called me and calmed me down. Still, it was very upsetting.
I was able to move on from that, but the other thing I was told about but didn't fully realize how it would impact me, was the areas of skin on my newly constructed breast that turned black and hard because of being burned by the radiation the first time. I am 10 weeks out of surgery and still have open wounds and a small hole in my reconstructed breast! I wouldn't even be this far along if not for my homecare nurse who sees me once/twice a week. My doctor prescribed Silvadine cream. My nurse thought I should have Santyl cream, but she didn't want to over ride the doctor. After two weeks of little to no improvement my nurse called the doctor and he prescribed the Santyl which started working immediately. It still took many weeks for all the black to be gone, now I'm just working on the yellow "slough" but all three areas are showing progress. I still have to cover the areas and I found buying non-adherent 3X4" pads, 100 pads/box, from Amazon saved money.
What I am really having a hard time with is my new body shape. Being heavy set, I now have nothing to keep my pants up at my natural waist. Nice to have a flat stomach, but not so much with a fat upper abdomen! Anyone else having problems or am I the only fat women to have the DIEP surgery? I am so worried about what I will be able to comfortably wear when I go back to work. I don't wear dresses because I hate my legs and I am on my feet all day at work so my shoes tend to be practical and not "cute." I am leaning towards elastic waist pants as I have been living in sweat pants at home. While "what to wear for work," certainly isn't even close to a serious worry to have, it is adding pressure to an already stressful time in my life.
Any comments would be greatly appreciated.
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Mavericksmom,
I’m sorry that you have had such a traumatic experience with your DIEP reconstruction recovery. While your PS team could have warned you, what you experienced is not always the case. I had no issues with swelling such as you described nor the black hard skin you described. My PS did use belly skin on the lower portion of my breast, replacing some of the tight radiated skin but most of my breast skin today had been radiated 8 months before reconstruction.
I hope your healing continues.
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Thanks Runrcrb, I appreciate your response! I was pretty sure what I am experiencing is not the norm. For me it has always been "what can go wrong, will." I feel very much alone in my cancer journey even though I am surrounded by supportive family and friends. I haven't found the medical contacts I have to be supportive with the exception of my home care nurse. I think I am going to push to go back to work at my next doctor visit even though I won't be fully healed by then. I need to get back to a world that isn't based on cancer.
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Mavericksmom, I'm sorry you've had such a rough time! There are few things more annoying than the doctors telling you that what happened to you is "unusual" -- after all, if it happens to you, it happens 100% of the time. If possible, I'd try to not be too discouraged about your new body yet, I had my DIEP in February 2018 and it changed for months and months, and I had one revision and expect another. It's a process, for sure. When you're healed enough you can discuss with your PS what your options are for refinement.
I went back to work about 5 weeks after, also wasn't fully healed but like you thought it would be good for my mental health to have a cancer break. And it was! Work has been incredibly stabilizing and "normal" in the swirl of cancer's chaos, which is funny, because I never would have described it that way before. In different ways, I bet we've all been where you've been at some part of this journey. Sending hugs.
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Thank you 2002 chickadee! Your post lifted my spirits a lot! The problem I'm having with my body image is due to the flat lower abdomen. When you said you had revisions I assume you mean to your breasts? Ironically I only wanted a mastectomy, I didn't want reconstruction but I was pressured into it by the breast surgeon. His reasons weren't wrong, but he got the plastic surgeon in to see me at my first visit and I never had time to think clearly about it. I have never had a beautiful body, now that I am older, to a large degree, body image isn't really important to me. My plastic surgeon mentioned more breast surgery as he was examining me before my surgery but in a way it sounded more like he was talking out loud, not talking to me.
I am struggling daily to find pants I can comfortably wear. Thankfully the blouses I wear are long and I don’t tuck them in. If I tucked my shirts in, everyone would see how badly my pants fit at the waist....or what was my waist! I’m not even sure where my waist is now!
I have had other major surgeries, but the mastectomy/ DIEP is the only one where the surgeons didn't explaine what they were going to do using pictures or drawings. I can't do anything about that now so I am only focused on moving foreward.
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Thank you 2002 chickadee! Your post lifted my spirits a lot! The problem I'm having with my body image is due to the flat lower abdomen. When you said you had revisions I assume you mean to your breasts? Ironically I only wanted a mastectomy, I didn't want reconstruction but I was pressured into it by the breast surgeon. His reasons weren't wrong, but he got the plastic surgeon in at my first visit and I never had time to think clearly about it. I have never had a beautiful body, now that I am older, to a large degree, body image isn't really important to me. My plastic surgeon mentioned more breast surgery as he was examining me before my surgery but in a way it sounded more like he was talking out loud, not talking to me.
I have had other major surgeries, but the mastectomy/ DIEP is the only one where the surgeons didn't explained what they were going to do using pictures or drawings. I can't do anything about that now so I am only focused on moving foreward
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Hi Mavericksmom, I can relate somewhat to your troubles with body image and clothing. I am 6 months past my double DIEP surgery. I will do stage 2 to “beautify" things but for now I'm working with what I have - which is very uneven boobs and no real discernible waist.
As far as pant suggestions, you might try thicker leggings and longer less casual- looking tunics. I've had great luck with slim, higher rise/higher waisted pants (that stay up!) with a line on QVC called “Women with Control". They're inexpensive and easy wash, slimming and are comfortable to wear. XS-3X, petite, regular, and tall.
Like many of us, your body needs to settle into its new shape. If you go for stage 2 (which is likely what your PS was mumbling about), you can have him/her refine your waist (via liposuction)and overall shape as well as make any needed fixes to your breasts. Sounds like it would give you peace of mind to have a mtg with your PS to go over future plans.
Best wishes! Lanne
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