DIEP Flap Reconstruction 2017
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Hello! My name is Jennifer. I'm BRCA1 positive, and was diagnosed with an aggressive patch of DCIS in one breast in late 2014. I was told it wasn't anything I had to rush on, because DCIS might not be a big deal right away, but because it was so aggressive, my BS recommended getting it out sooner rather than later. As it turned out, the DCIS lumpectomy pathology said that inside the DCIS was hidden a small ER-/PR-/Her2+ tumor, and then my treatment went into overdrive, including surgery, chemotherapy, the whole nine yards. I had all my surgeries and chemo in 2015, and a year's worth of herceptin after that.
I'm still cancer-free so far, thankfully, but my oncologist and BS have both strongly advised me, because of the BRCA1 odds, to have an oophorectomy/salpingectomy and a BMX. I got the ooph/salp out of the way in 2016 (yay!) so now it's time for the BMX. I really wanted to do a DIEP reconstruction. But because I don't have a ton of belly fat, the reconstruction PS is reducing the size of my breasts first, and then in a few months, after that heals, maybe sometime in December or January of next year, my BS and PS will be doing the BMX and DIEP reconstruction as a team. I will be so glad when all of this is over and both surgeries have healed.
I'm joining this group because the breast reduction surgery is next week. When I went through my diagnosis, LX and chemo in 2015, this site was my constant companion. I've been reading all of your stories with a combination of empathy and dread ... knowing that it's always a roll of the dice when we have major surgery, but hoping for the best for all of us. And even though it's not technically cancer surgery that I'm having, it's "just" prophylactic, I'm hoping to find some friends here. I will probably be back a few times over the next few days, and then again sometime after my reduction surgery (at least as soon as I can get back on my laptop.)
Take care of yourselves everyone!
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Welcome Jennifer! I have found this site a tremendous help.
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I am almost 6weeks out and luckily no complications (knock on wood). The past few days my pain has increased, but I have been doing a lot getting my 2 babies ready to go back to college. Wondering how many months does it take till you really have no pain or discomfort at all.
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Jennifer welcome back. Just curiosity but why do they want to do a breast reduction surgery first. I just don't understand why they wouldn't just go ahead and do the bilateral mastectomy seems like an extra step to me?
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mmcmom - what type of pain are you having? Listen to your body and slowly build up, especially using your abs. It's amazing how often our core muscles are used in about everything we do physically! Your doctor knows best but I would wait until 8 - 10 weeks before doing core exercises. I started back to reformer Pilates which uses resistance springs a little too early and my skin did not heal and adhere to the abdominal wall properly. I'm sure chemo didn't help me heal either since I started chemo 7 weeks after my DIEP surgery on March 8. In stage 2 surgery on August 4, my PS had to go back into the ab area, clean it up by adding mesh and I'm starting over again on the healing process. I certainly hope it adheres this time!
Water water water! You guys might know this but I didn't. I have been swelling a lot after my stage 2 surgery. I told my doctor that I didn't understand why I started swelling three weeks after surgery, because I was drinking lots of water. He told me too much plain water may actually be toxic to the body. He said I should drink Gatorade or similar electrolyte drinks, along with some water. I added electrolyte drinks to my diet and the swelling has gone down! I think I put 5 pounds of water on my body. Now, maybe I can fit into my dress for a wedding this weekend!
Good luck everyone on your recovery! I know we are not alone because I have two friends that just recently opted for implants, and both of them have had infections. They just recently had to go back in for a surgery to clean up the infections. Their implants were removed and now they will have to do some kind ofreconstruction on down the road! I'm very glad I chose BMX/ DIEP flap!
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Hi Jennifer,
I wouldn't call your DIEP "just prophylactic." Heck, you've already been through the cancer wringer. Besides, the surgery is surgery whether or not an active cancer is complicating things.
I came into this as a BRCA 2 carrier. I did the salpingooopherectomy because I was already in my 50s, so that was an easy decision. But I wasn't so sure I wanted to take healthy breasts.
While I was waiting, I ended up being diagnosed with invasive cancer. Fortunately the tumor was so small that it was removed just by the biopsy, so I was spared any treatment.
I had always thought that if cancer did show up that I would do them both. The PS I first saw said I was too thin for a DIEP so he talked me into implants. 2 infections later I finally went out of town to see a DIEP specialist and found I was a good candidate.
A friend of my me is BRCA1 and did implants, but HATES them. She's planning on getting them out and just going flat.
All that to say "welcome!"
I also wanted to mention that this year's group, and last year's, sure had their share of troubles. When I was recovering from sepsis and waiting for my DIEP, I read the entire 2014 thread. Although 2 women that year had flap failures, the rest healed pretty well. And 100% of true women in that group were glad they did the DIEP.
That gave me the courage to plunge ahead. My path was pretty uneventful, which was good because I was don't with complications after all the grief of my implants!!
I am now over 18 months out and pretty well done. I am totally satisfied. Wish I never had to come down this road, but since I had to, this was the best route for me. All my troubles were BEFORE the DIEP!
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Pambc010417-- very interesting about the water. I have some swelling also after first Diep surgery. I drink around a lot of water during the day. What electrolytes did you add? Gatorade or something else?
Thanks!
Welcome new members!!!
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The trouble with Gatorade is there is so much sugar.
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add NUUN to your water the lemon-lime one just has electrolytes. no other vitamins or caffeine. 1 gram of sugar for a tablet you add to 16 oz of water. I actually water it down more.
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mmcmom - everyone progresses at a different rate, but FWIW, at 3 months post I am almost pain-free. My only pain is from where the rib cartilage was removed. It hurts occasionally when the car AC blows on it or the seat belt presses on it. Only discomfort is from pants waists rubbing against the abdominal scar.
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I bought nuun hydration tablets from target but they did not have lemon lime which I think I would like better. I purchased strawberry leamonade flavor which was pretty good. $5.99 for 10 tablets. My daughter said she buys it on Amazon. It's almost like dropping an alka seltzer into 16 oz of cold water. You can water it down more if you want. It sure cured my swelling within two days. I dropped at least 5 lbs in water weight real fast. My feet were so swollen I could not slide them into my sandals. I had no idea too much plain water could cause this problem and wash electrolytes out of your body. There are different kinds of nuun tablets so make sure you buy the hydration kind with electrolytes. Another option is Vitamin Water Zero is lower calories and sugar. Gatorade is higher in sugar but it provides electrolytes too.
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I am now 5 weeks out from Diep surgery. All good. My stage 2 scheduled for end of October. I am looking forward to the breast lift on good side.
I have read about gently massaging new Diep breast in earlier threads. Are any of you doing this? And does it soften edges of newbreast?
Cdv, so sorry for all the difficulties - especially so long after diep surgery. I hope things are getting better and your not getting run around. Wish you lightning speed healing.
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Greetings ladies,
I can't seem to find enough time to follow everything much as I would like to, but best wishes to all of you!
My 7 months of waiting is now down to 3 months (surgery date 12/4 Dr. Kanchwala UPenn) I am sick of worrying every day. But now it's about time to tell my employer. I work for a very small club which is undergoing a major expansion and I am the SOLO office staff. This is NOT going to be easy...! I was a stay at home mom back in 2011 when I was going through the cancer I am not really sure how to talk about it at work.
To anyone considering implants vs. DIEP please feel free to reach out to me regarding the pluses and minuses of implants. I did not have any problems with infection, etc. and I don't know how it would be for a less active person but I am very unhappy with them 6 years down the road. Hard, lumpy, uneven.
For those of you a bit further out: I have gotten so used to not wearing a bra! which is one of the upsides to implants I guess. I am going to have to have small implants covered by DIEP. Anyone know if I will definitely need a bra or not? I already have nerve damage from the BMX and hate things touching me around the armpits (so I do actually love just throwing on a tank top & thats it!!!) Also: who can tell me more about this cartiledge cut and what should I ask my surgeon? I have another consult scheduled for October I need to start getting myself PREPARED.
thanks,
Michele
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Lmichele - about the cartilage, the PS has to get into your rib cage to find a blood vessel to hook up to the flap. I've read that some PS can do this by going between ribs, but it seems that most find it easier to work in an opening. I was shocked at the size of the divot - the end joint of my thumb can fit into the hollow. I'm hoping that filling some of it in with a fat graft during Stage 2 will make the divot less visible and protect the nerves from getting irritated by light touch. I don't know what you can ask your PS - maybe whether they can take cartilage from lower down so it's hidden by the breast when you're standing up and doesn't show on your chest?
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thank you aquileia, that is good information to have. Keep us posted? when are you due for next step?
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Not til December. PS wants the scars to fade first.
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Hi all, I've read through a lot of this thread without posting, but I just had my DIEP Flap last Monday (8/28). The first few days were ROUGH, but I'm at home doing a million times better now. I got really sick from the anesthesia (even though they gave me every anti-nausea drug/patch available). Finally by Thursday morning I was able to keep stuff down without throwing up. Let me tell you, getting sick after this procedure is pain that is indescribable.
I've had my tissue expanders since 6/1/2016, and my breasts actually feel relief. My tummy and lower back are where pretty much all of the pain is. My original plan was to have the DIEP in Dec 2016 or Jan 2017, but since I didn't have a PCR with my mastectomy, I ended up doing 6 months of Xeloda prior to rads, so that pushed everything back. Although this is the most painful procedure/treatment I've gone through thus far, my psyche is a million times better knowing that I'm (fingers crossed) seeing a light at the end of the tunnel.
The only really weird thing going on is severe swelling in my right arm. I had two IVs in my right arm - one on the back of my hand, and one in my wrist. The one in my wrist was swollen and painful, so they decided to move it after the surgery and placed it in a really weird place at the top of my inner arm. The next day, my entire arm was HUGE. All of the fluid was going into my arm rather than into the vein. They took that one out and have just had me keep it elevated and said it will go down on its own shortly, but unfortunately it is still really big. Like twice the size of my other arm. Obviously I will have them check it out on Tuesday, but has this happened to anyone else?
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Hi Kelly. I was told swelling was normal. Excessive swelling should be brought to the attention of your surgeons. I was instructed to avoid caffeine and excessive salt and to drink both water and electrolyte water for swelling. Also, movement was deemed a key step as well. Easier said than done after a double DIEP!
When you are feeling better in a few weeks, you might try physical therapy. It's been very helpful for my swelling. Hang in there and I hope your swelling resolves itself nicely and you feel better each day.
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Prepping for a gall bladder surgery scheduled for the next morning,I had an IV that missed the vein in my hand and I had elephant hand (about 3 times larger than normal). Probably a whole bag of saline was under the skin. It took about a week for all the fluid to find an escape route or be reabsorbed.
HUG
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I also had an IV issue. During a CT scan with contrast, the contrast spread under skin. Elephant hand.
Good luck jbdayton! For me it was laparoscopic, with no post op issues. Just do NOT lift anything in order to avoid a hernia.
Congrats Kelly! Take it slow and everyone has different healing times - for me three months plus.
Stage 2 is October 2nd
LiLi
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Thanks LiLi but I had that surgery in August of 2014. Surgery was laparoscopic and it was just 3 days after getting a wound vac off the right breast. I had a DIEP surgery on June 2, 2014. Both incisions healed good. I remember you from back then. Hugs.
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Thanks, guys. I've been measuring my arm, and it has already gone down an inch and feels much better, so that's progress.
I'm 8 days out from surgery and am feeling so much better than I expected! I'm going to get my drains out tomorrow, which will be a relief. After my mastectomy last year, I had the drains for over 3 weeks, which was depressing and so uncomfortable.
I'm just taking it easy - walking around the house every hour or so and letting my husband fetch things for me. He's working from home the next couple weeks, which is great. My kids are staying at my parents' house and dropping in to visit every other day. Yesterday was my oldest daughter's 8th birthday, and I was really weepy that I wasn't able to wake her up with hugs, kisses, and treats. Made me so mad at cancer! I did give her a big, fun birthday party the weekend before surgery, but it was still sad. Thankfully, today is a better day and my head's in a positive place.
Hope everyone else is doing well!
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Kellychamel, keep taking it easy and letting your family take care of you. Rushing it never gets us anywhere. We celebrated my older daughter's 18th birthday in my hospital room after my surgery. I felt/feel horrible I "ruined" her big day, but she does not feel that way and your daughter is the same, I'm sure. We are so much harder on ourselves, aren't we?
I'm off to the PS. Fingers crossed that I get some answers. The hole is still there and it's still dribbling some weird discharge. I'm trying to center myself so I don't go off on him. At the same time, I need to not just smile and nod at him with my don't rock the boat nature. I hope he spends more than 5 min with me and answers my questions and that I can find out what the heck is going on with his practice so I feel comfortable moving forward with him treating me.
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Kelly, glad to hear you got through the early rough days and turning the corner. I second advice to take it easy. No matter how good you feel your incisions truly need time to heal. My day 10 I felt great, I walked outside and rolled up a very small stretch of garden hose with my good arm. Sure enough I felt Twing or mild pain in my chest on reconstructed side... it was the incisions on one corner separating. It has healed now but I have a smallindent and gap that needs to be touched up in Stage2. Patience is what is needed at this point. Good luck and happy healing.
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Cdv4251992, how was your appointment? Did you get any answers? That sounds so frustrating!
I'm still hanging in there with my recovery and taking it easy. My kids came back home from grandparents' house on Friday and have been very sweet and well behaved, so that's a plus. Of course my four year old who never gets sick came down with a fever yesterday afternoon so was unable to go to school today. My husband did the middle of the night care (which he is not used to doing!) so he's grumpy and lethargic this morning and trying to work from home. My little and I are vegging out to a movie, and my mom's coming over in a bit to pick her up and has offered to keep her overnight. Never a dull moment, but I am SO lucky to have so much support here between my parents, in laws, and friends. I don't know how people do this that have kids and no family in town.
My appointment with my PS last week was good! I got my drains out, as expected, and everything seems to be healing well. Today is the first day I have clearance to walk upright. I did a 10 minute walk around the house, which felt like a workout! Also, I've been sleeping in the recliner every night and am moving to the bed tonight. Very much looking forward to that!
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Hello ladies,
I'm scheduled for a BMX with DIEP on 9/27 in NOLA, just waiting on the insurance pre-approval. I was diagnosed about two weeks ago and it's been whirlwind of information and decisions. This site has been incredibly helpful (and terrifying and reassuring all at the same time). Thank you all for being so generous with sharing your experiences.
I have a large area of DCIS (12cm x 4cm x 4cm) in one breast, I'm opting for BMX over lumpectomy/reduction because I want this to be a thing that was part of my life but not my whole life. Fingers crossed that there are no surprises from the biopsies!
I'm nervous about the surgery/anaesthesia, but know I'll be in good hands.
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Hello Deesworld, it looks like you have ball rolling and plans in place. BMX is closest thing to knockout punch. I researched a lot but once I made my decision for Uni mx it all became less stressful. The ladies here provide wonderful support throughout the years. Wishing you peace in all your decisions and healing in your journey.0
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Deesworld, good luck with your surgery. Making the decision definitely helps lower one's level of anxiety. Best wishes
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Deesworld, good luck to you in your upcoming surgery and the weeks of waiting. I had a uni and then delayed recon. I really learned a lot from the first surgery to the second, as I'd also never had major surgery before. One thing- many of the meds make you very constipated. To avoid that the second time around I really boosted my fiber and cut out any possible constipating food. Good luck to you.0
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Hi! I'm a longtime reader (diagnosed in 2015), finally created an account. I was in great shape until my lumpectomy and radiation in late 2015/early 2016. Then all the comfort food from friends took its toll – lasagna is my nemesis.
Then this past February my BRCA1 variant was reclassified as being pathogenic and everything quickly changed – ovaries removed, more family history came to light, another lump found in May by my surgeon meant I was suddenly looking at double mastectomy and reconstruction... and here I am.
I went through bilateral mastectomy August 8th and currently have pre-pectoral tissue expanders in preparation for DIEP sometime in October or early November. I've had a fairly easy time with recovering from the mastectomies but the DIEP recovery is worrying me a bit. I think I'd like to do some yoga but not sure where to start? On my optimistic days I think I'd like to start running again (hahahaha! Ahhh, that's a good one.)
Am nervous about recovery from DIEP but also anxious to be done and get on with my life!
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