DIEP Flap Reconstruction 2017
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I am two months away from DIEP flap surgery and am counting the days. While I understand the choice each woman makes is the right one for her, I am grateful every day that I went with a single mastectomy. I had nipple and skin sparing mastectomy followed by chemo and whole breast radiation. My description for radiation is BRUTAL as that was the roughest 8 weeks of the past year. I'm now 7 months out from radiation and looking forward to the removal of the tissue expander. I feel the expander every day, I have swelling along my trunk that my lymphedema tech and I attribute to blocked flows, and I feel my pectoral muscle pushing on that expander every time I close the lift gate of the car or do a pushup. I'm still trying to understand what to expect after the procedure, what many of you refer to as Stage 2 but for now, whatever pain I'm in during December will be worth it to have a hope of a breast that isn't hard and a muscle that is back where it belongs.
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runrcrb- you will be so happy to get the relief that the expander removal will bring! Since your harvest/tissue graft procedure was delayed and expander put in place, your stage 1 seems to be happening in 2 steps - so a stage 1A and a stage 1B. Even still, you should feel a huge difference painwise.I was able to do an immediate DIEP at time of bmx and can't even imagine the struggle you're having. I know you can't wait. Well wishes coming your way!
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Hi tnd22. Fatigue, depression, reduced mobility. Sounds familiar and quite normal after major life altering surgery. I started Prozac to fight the depression months before surgery. I can't imagine surviving a BMX and DIEP without it. There were some very very tough days early on after surgery. Around week 5, I recall starting to feel better, just a little better everyday. It's still early in your recovery. Hopefully, you will turn a corner soon and start feeling just a little better everyday. You'll look back and congratulate yourself for getting through.0
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Hello ladies - I've been reading this forum for a while, and you've all been such a blessing with all that you've shared. Thank you! I had BMX with immediate DIEP at Univ. of Michigan on Sep. 7. Overall, I'm very happy with the surgery and results thus far. I do wish that I'd known before the surgery to wean myself off caffeine (including chocolates!) and to strengthen my lower back (help prevent pain from walking hunched over after surgery).
One thing that I'm struggling with is my abdomen. The incision has healed well, but I've had problems for weeks with abdomen feeling like a hard basketball, and it seems to be getting worse. After just a few bites of food, I'm very uncomfortable. I've been treating the issue like its gastro-intestinal - frequent mini-meals, stool softeners, probiotics, prebiotics, etc. However, I'm having regular BMs, and the "bloating" doesn't seem to be gas. Recently, I noticed that if I sit for more than 20 minutes or so, my abdomen feels painful like it's compressed, and when I stand up, it hurts but not like the tightness from the incision. Not sure that makes sense or not. So nowI'm wondering if it's large seroma or something else. Anyone else had experience with this issue? Any help would be appreciated.
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Jeanarino
I joined this forum as one of my queries was on this topic too!
I had surgery beginning of August so I’m about 5 weeks ahead of you.
My stomach felt so abnormal for ages and unfortunately I had healing issues on my abdominal incision for a while that prevented me doing the exercises I should have been doing. I think if I had been doing some of the exercises sooner then the “pregnant-with-football” feeling might have eased sooner!
As part of my post-surgery recovery, I visited the physiotherapist in the hospital; she started me off on very gentle exercises and also got me to gently do circular movements on my scar, above and below it - to work on the scar tissue. I also use a soft exercise ball to roll it over my stomach, again working on scar tissue. I have now progressed onto working with a local physiotherapist privately who does pilates specifically for people with back/hip/pelvic problems. She started me on 2 simple exercises and I really really think it’s working. My stomach still spasms if I stand up after sitting down for too long but not as intense and the spasm dissipates quicker now too.
I hope this helps and continued healing to you x
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lula7,
Thanks for the note of encouragement. This too shall pass
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Thanks, Encee! I'm headed to see the PS's physician's assistant tomorrow and will ask again about massage and physio. Asked a few weeks ago and was told not yet.
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jeanarino- I had the same thing and I took Gas-X with every meal for a week and I've started taking 1 Florastor probiotic a day (florastor has different probiotics in it than the others). Then all of a sudden the belly bloat was not nearly as severe. Yes it got worse as the day went on and seemed to reset overnight. I'd wake up with flat tummy then look like I was 6 months pregnant by bedtime. Now I look normal at bedtime but not quite as flat as in the morning. Don't know if it was the gas-x or the florastor or something else entirely. I'm 8 months out from stage 1
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jeanarino - you could ask your surgeon to look at the abdomen area with an ultrasound machine. Ultrasound should show you whether you have a seroma or not. I had an ultrasound and it showed for the 2nd time my skin was not adhering to the abdominal wall, and I had a large cavity filled with thick fluid, it could not be drained. My surgery, stage 2, was August 4. I am now scheduled for another surgery this Friday, Oct 20 to clean out the thick fluid and the surgeon will stitch my skin down to abdominal wall. Hopefully, this will correct my problems. In stage 2 he put biological mesh in my abdomen area hoping it would help but it did not because I also had a large cavity from stage 1 on March 3.
I’ve had similar issues with pressure in my abdomen. If I sit for too long, I get indigestion. I eat small meals and nothing too spicey. Your surgery was not very long ago so you may be healing still. I’ve heard a lot of people say that it can take six months to a year for swelling to go down. I would let your doctor know about your issues and ask him or her to look at the abdomen with an ultrasound. You can look at the ultrasound with them and ask questions. Ask if they see fluid and if the skin reattached to your abdominal wall.
Good luck
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thanks Pam, keep us updated on your progress.
I may look into further testing. My Flaps were done in 2014. My revisions have been spread over the prior 3 years the last one this past February.
I did have a laparoscopic surgery to remove my gall bladder just 10 weeks after my second flap surgery in Aug 2014. I think blowing up my abdomen May have not been good for my healing abdomen. Of course, my PS does not agree with me. The only scan I had since then was a CT scan of my abdomen with contrast. This was requested by a surgeon looking for a possible hernia, he said my only problem was I needed to lose weight. I am 5'6" and weigh about 150 so I do have a little weight I can lose. I will ask about an ultrasound next year.
My youngest daughter is getting married the weekend before Thanksgiving then Christmas right behind that. I am going to enjoy the holidays this year.
I hope everyone is healing well and thinking of everyone preparing for their procedure.
Monday Afternoon i have my annual mammo and ultrasound then see the MO the next Tuesday. I also have an appointment with my PCP Monday morning. I guess I need to get my flu shot. I did a lipid panel last week and a CMP for him to review. He apparently did not request an CBC so now I probably need to have it run for my MO appointment. I also am going to ask for a vitamin D test.
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jbdayton - congratulations on your daughter’s wedding! You deserve to enjoy the wedding and holidays this year!
Good luck with your doctors appointments. Why are you asking for a vitamin D test? Is that because you are on Arimidex?
Jenarino and jb and everyone - Did you guys wear a binder or Spanx after your DIEP surgery and how long? Did you start wearing it right after surgery?
Thanks,Pam
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Pam,
I had the DIEP flap surgery 4 weeks ago. I wore a band for about 3 wks. It was on me when I woke up from surgery. I'm not sure how they decide you don't need it anymore. It still feels like I have the band on, btw.
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Jb- hope all went well today with the mammo! Congrats on your daughter's wedding. Yes, you are going to have fabulous celebrations this year! Well deserved!
Pam- I did wear a corset type binder for about four weeks. Once I started exercising again it was helpful to keep my back supported. Good luck!0 -
Thanks everyone I had clear mammos and ultrasounds. Yeah! Just a few oil cysts found but no change.
I will see my medical oncologist next Tuesday.
I wanted to check the D levels since I am taking an AI. I take a calcium and D3 supplement. I want to make sure I am taking a good strength to maintain good bones. My bone density scan right now looks good and I want to keep it that way. My mom and her sister both had osteoporosis.
I had my blood drawn this morning for testing the D my PCP had no problem writing the script. I also got my flu shot this morning.
Hope everyone is recovering without complications and prayers for those preparing for their procedures.
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JB, YAY for your good news!!
To answer earlier question - I did not have anything. Not even bandages.. just the glue on incisions and clear strips that wear off in shower.
I am now wondering about stage 2 in 2weeks. Lift on good breast and fat grafting on Diep breast. I assume the lift breast will need support and any lipo area will need compression. Will ask the doctor.
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jeanwash-I'm having stage 2 in 2 weeks too. Where are you having yours
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Hi Lula, I am having stage 2 in Chicago northwestern memorial
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jeanwash- I'll be down in NOLA. Good luck with your surgery! I'll be thinking about you and sending warm thoughts your way!
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hello everyone. One week until my surgery. Very excited and apprehensive. Tired of having a mutiliated chest. Septic shock and tissue expander removal left me with bizarre looking craters. Any words of wisdom or advice appreciated. I have been reading this board for months, following everyones healing.
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Hi Kat! Good luck with upcoming surgery. Since you, like me, didn't have immediate recon, I'm wondering how you did after the first surgery. Pain meds and anesthesia hated me, so I remembered to have a high fiber diet starting about a week before surgery to keep things moving. I definitely bounced back faster as a result. That's myexperience second time through!0
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Yes! What Falconer said! I had serious issues with constipation after surgery, and I've NEVER had that issue before, so I was definitely caught off guard! Any preventive measures that you can take....,do it
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Hi Katjad & hi all;
Hoping you are all good & life is treating you kindly.
Katjad, wishing you every luck with your upcoming surgery - hopefully in a few weeks it will all start being a blur to you!
You will probably have seen some of the fantastic suggestions and advice here that was given along the way; apart from the usual light clothes (it will be hot after surgery thanks to the tropical environment they will have created for you!), button down tops, anything to prevent constipation, hand wipes, etc., the one thing I wish I had brought along to hospital with me, is one of those grabber things (like what you see people picking up rubbish with) just to bring things closer and pick things up - oh, and maybe download one of those Netflix series that you always said you must watch but never had the time - you will have a little of that time now so it’s a great chance
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Kat, sending good wishes for your upcoming surgery. I know you have had a lot of time waiting for this event. All you have to do is show up, the team will do all the work, you will wake up a new person.
I remember the waiting was the hardest part. We will all be with you in spirit.
Pam we are keeping you in our hearts as you prepare for your upcoming revision tomorrow
Jeanwash and Lula thinking of you as you finalize your preparations as well.
Jeanarino have you gotten any answers. I still have the hard stomach/football problem after three years. It is very annoying. I am hoping the procedure Pam s having done could be the solution.
To those still recovering, I hope you continue getting stronger and getting life back to your new normal.
HUGS to all.
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I had my original bilateral mastectomy June 22 of 2016, thought I would be doing expanders and implants afterwards because they thought I had no cancer beyond the lump. Unfortunately my sentinel node was positive. They then wanted to do an axillary node dissection which I am glad I did because there was another positive node with extension outside the capsule. Probably saved my life. The downside was that it meant immediate chemo and then radiation...and also tamoxifen. So I went from running 6 miles and in pretty good shape to flat scarred chest, lymphedema in my left arm and hand. I cannot even wear my wedding bands. I have tried sleeves..make my hand bloat even with a glove, manual lymph drainage, wrapping, etc. My scapula is also pushed out of place by the scarring from the dissection scar so that when I lift that arm it pops out like a wing. I have also gained 15 pounds from the Tamoxifen. To say my self esteem is gone is reality. I used to be thin, big boobs, beautiful hair...Now I feel like a blob. I am scheduled to go in to see my ps again in November to finally get this diep flap surgery scheduled(it had been delayed because of the chemo and radiation). Have any of you had success with the Diep helping with lymphedema, shoulder and scapula displacement improvement?? I now have a fat belly for the diep which I didnt before tamoxifen....feeling down but hopeful.
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Help3, we can all certainly relate to your situation. I tried a two fold approach post surgery - physical therapist with 25 years of experience treating patients with lymphedema and a certified oncological masseuse who also did reiki. This approach worked for me. Even when I thought it was not doing any good, I kept going and finally saw results.
There are new surgical techniques whereby lymph nodes are transplanted from one place to another. If you search under lymphedema + micro surgery, you should find more information.
Hope you feel better soon and good luck with your surgery.
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I think my PS at Penn, Dr. Kanchwala, does lymph node transplants but I fortunately didn't have lymphedema so didn't get info. but it's a thing!
I just got back from a pre-surgery consult and I feel so much better... AND it turns out there is a two-step process that he has been pioneering the past few months and it is working out really well. SO I signed up for that! will explain more later
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okay home again and quiet for a moment...
Six years and one week later after the "exchange" surgery, and 5 months after the first revision consult (5 months of daily worrying), this morning I had the big 45 minutes long consult with Dr. Kanchwala. I was so nervous and emotional. My two page list of questions was answered and explained in every detail and I feel so much better. I really like my doctor and trust him and I am optimistic for good results.
The good news: he thinks to have about the same size I am now, it will be about 1/3 implant and 2/3 tissue, he will use the smallest implant they offer 150 (?) so I hope to look good for now and later when I am older if I want the implant out I will still have something going on. Also: he doesn't have to push the limit on how much tissue to take, this way he can leave a bit and it will look more natural. If didn't want any implant he would be more aggressive on that.
AND the implant can go on TOP of the muscle. The muscle fibers that had been expanded will just resume their shape and go back against my chest. What a relief that will be!!!! That was the best news.
He explained the two-step process they have been working on in an effort to reduce the pain of the procedure. After he explained it I said what's the down-side? He said: only that you'd be like the 18th person to have this not the 1,000th, but it's been working really well.
So first surgery, Monday Nov. 20, is outpatient. The CT scan would have been done prior to surgery to locate the blood vessels. Instead of the usual process of accessing 2 to 4 vessels per side to take the transplant and re-attach it, during this surgery they snip 2 or 3 and leave only the 1 largest one per side. Then this one takes over and serves the area and gets really bulked up!
Second surgery, two weeks later, Dec 4., they only have to cut thru the muscle in two places to get these 2 vigorous veins, not up to 8. He says the hospital time should be two days, much less pain, and quicker recovery, say 4 weeks.
So i have to do a CT scan, two pre-op visits with blood work, two surgeries, drains twice, two post-op visits one of which is the Friday before my Monday second surgery. Luckily for me this is manageable because I only live about 5 miles from University of Pennsylvania.
Oh and he said he has done about 150 such layered surgeries but that is a very small percentage so no surprise I haven't found anyone to talk to. Hopefully anyone else who comes along after me will find me out here!!!I am going to go drink some wine soon. Whewf. It's still scary but I do feel better and look forward to getting beyond this.
(I sure am glad I have good insurance and good doctors.)
Best wishes to all you!!!!
Michele
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LMichele, I'm so glad that you feel confident and you're going forward with a good outlook!
Help3, yes I know how you feel I too was a runner and also yoga teacher before bc. I'm slowly getting back to both. But I feel old old old. And that was not me before at all. Ugh.
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Help3 - I feel your pain. I had cording down my arm after my first surgery and ended up with some lymphedema in the right arm and along the trunk after radiation (breaking my elbow one week after my radiation finished did not help). If you have access to one, seeing a lymphedema therapist weekly helped me a lot. Got it under control, taught me some techniques, and my insurance covered the Flexitouch and compression sleeves. Yours sounds worse than mine but if you can do it, I endorse the time spent with the therapist. Mine is largely under control and I'm hopeful that once the d#$@ tissue expander is removed in December that flow will improve along the trunk. I've scheduled another evaluation and visits to start about 5 weeks post DIEP surgery. I can still run, even the distances I ran pre diagnosis, but there is walking involved and the average pace is off by 1:30 a mile. I'm not focussing too much on that since this surgery will take me back to ground zero anyway.
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DIEP flap with BMX scheduled for November 13th. Very glad the date is approaching, very scared the date is approaching. I have known of my DCIS in four ducts in L breast which pathology from Mayo stages at 0 with triple negative markers since July of this year.
First plan for surgery was in my hometown, then the plastic surgeon (woman, 46, looked 26, made me sit with her assistant for a 30 minute educational session on reconstruction, all the while knowing from my chart that I was a smoker, then dropping the bomb when she met me for less than five minutes, just to tell me she would never do any reconstruction on me unless I was six months clean of cigarettes--she only did expanders btw.) I was so upset we went to UW Madison Hospital, and a great team is assembled, I am over a month of zero nicotine, and I am having DIEP, which I believe will be a much better option than expanders for my body.
Still scared--I am 56, DD, quite a bit of belly fat--I know this is right, but the thing is I feel so healthy right now. I have never felt a mass because as far as we can tell my triple negative is still contained in my ducts, although over the last few weeks I have had a burning sensation in the left breast. Feeling healthy and then planning to so drastically alter my body
it is hard, isn't it? Never was a lumpectomy on any of the surgeons list of options, too multifocal and left has to go. It was never an option for me to choose a single mastectomy if I am going under for this major surgery....I have been stalking and reading for two months, and appreciate all of the advice on packing, your stories, thank you ladies for providing this resource and sharing so deeply. I am hopeful I am able to return to work at the six week mark. It is important for insurance reasons and because I will lose all of my vacation and sick time for the year if I am not recovered enough to return to work by December 20th. I know money shouldn't matter, but it does. I don't have disability insurance, so returning to work is major for me. I am also worried about my health with my furry friends when I come home from the hospital. Two pugs and an elderly very touch hungry older cat. How do I keep them away from me to avoid infection??? Am I at greater risk for infection if I pet them? If I go in and close the bedroom door the cat will literally be pounding on the door and the dogs will begin to bark the second I fall asleep, just like my kids used to, LOL.
Appreciate each of you, wish there was another way to do this, hope for the day when cancer can just be poofed away by an easier method....
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