2018 DIEP Surgery
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my DIEP was one year ago yesterday. I get some tenderness on the side, along my trunk, occasionally but that’s it. Nothing like what you described.
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Hi Kelly - I had terrible burning sensations shaped like a breast harness after BMX. It was almost gone a year later, but then I had DIEP surgery, and it started again, but not as bad and now 5 months after DIEP, it is there (more whole breast than harness) but I don't think about it too much - but by the end of the day I can't wait to get my stretchy bra off.
Tumeric definitely help with the pain. If I miss a day I can really feel the difference.
Lanne
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Question for those of you who had radiation ...
I had BMX with implants (DIEP wasn’t suggested then) then radiation to right breast 3 months later. DIEP was 9 months after rads ended. I’m now 5 months past DIEP and my radiated breast is about 2/3 the size of my non-rad breast. Lefty Boob went gangbusters after DIEP and grew quite plump (even a bit bigger than I want to end up with after phase 2) but poor Righty Boob just did not keep up and it’s a wee bit smaller that what I want.
For those of you who had radiation before DIEP, did thus happen to you?
If you had BMX/DIEP all in one go followed by rads, did rads affect size?
My DIEP surgeon said at the time that the longer we wait to do phase 2 the better - and since I’m on a new and crappier insurance plan, I’m in no rush or position to pay my deductible so am willing to give it more time. Dr thought Righty would eventually catch up but I’m doubting that.
Lanne
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lanne2389,
I’m not a doctor nor am I super knowledgeable about the ins and outs of DIEP. My experience is simply mine. My DIEP breast hasn’t changed in shape or size since it was created. I had mastectomy and tissue expander prior to radiation. My PS replaced the lower portion of my breast skin with belly skin as the radiated skin was very tight. At phase2 (7.5 months post DIEP) he used liposuction to reduce fullness in the diep breast. I’m 4.5 months post phase 2 and 12 months post initial DIEP and notice no changes in size. One of the reasons I went with DIEP was to improve the chances that weight gain or loss would show evenly as I kept my healthy breast.
If you were looking for advice, I’d wait and see for a while- this cancer treatment thing has a long tail and it’s never the same impact on women. Your body may end up exactly as you wish without more surgery or you may decide after a year of stability to have another go at balance.
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my rads side is smaller but not super noticeable in clothes. but she will do fat grafting and see how it goes. My PS just did placate procedure..did any of you have that part done also?.
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I had my phase 2 surgery on Friday. I’m sore, but I think it went really. My breasts look great! I’m sure the size will go down a bit due to swelling. Initially my doctor thought I was going to need a phase 3. The results I am seeing makes me think I won’t. So happy this long journey (6 surgeries) is almost over.0
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I'm feeling disappointed after my phase 1 surgery a couple of weeks ago. Does it really get so much better after phase 2 if you had radiation first? My new breasts are asymmetrical and neither look that great. My tissue expander became infected, so I went straight to diep and had to have large belly patches placed. My tummy is flat, so not all bad.
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I am beginning to think us ladies with radiation are just out of luck for symmetry unless your surgeon is willing to compensate for it in the beginning. Once the DIEP is complete there is little that can be done, I am thinking. Of course, unless you are willing to have another complete flap taken from another area, more huge scars, loss of muscle, and further nerve damage. which I am not. I am still going to give PRMA a chance to see what they can do to help me. But, I am beginning to think, since there are so many of us with this issue that it is rather prevalent, apparently our plastic surgeons don't view it as a problem, or they would be addressing it from the get go.
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I had DIEP 12/12 on my right breast and am healing well. Prior to Diep I had mastectomy with TE placement followed by radiation. The TEs had all sorts of hard edges and in the beginning completely freaked me out because I kept wondering if I had chest wall tumors growing or if it was just the TEs. At every doctor appointment I would make the doctor feel around and make sure it seemed normal. Anyway, I assumed after DIEp that hardness would be replaced with my soft belly fat. I was surprised and perplexed when I realized that an area in the top left quandrant of my breast, actually high up more onto my chest than on my actual breast, is still hard and lumpy. I haven’t seen the surgeon yet to ask him about it, but i “hope” that it is radiation scar tissue. That seems most likely, right? Has anyone else had similar scar tissue? I am worried that it could be a growth on my chest wall, but wouldn’t that have been caught on the chest x-ray that was takenafter surgery?
Thanks!
Rebekah
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Whew! I just caught up on this thread. It does seem like radiation is responsible for a lot of us having asymmetry.
carms825- thank you for all the research you have done. What is the mammary fold? Is that where our breasts are attached? It looks like part of my unevenness is that my non-radiated side folds down at a lower spot. My radiated side doesn't fold at all actually, but where it would fold is higher.
I'm tempted to contact NOLA from all of the positive reviews here. However, my plastic surgeon has excellent reviews and experience, so I don't know if I just need to be patient. I'm 3 weeks out now. With all this sitting around to let my body recover, I wonder if I am just getting too fixated.
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Magnolia, The mammary fold is the crease under your breasts. The definition of the breast as opposed to the chest wall. It keeps the fat from falling down into your belly and under your arm. Not sure how to explain it. if someone else want to take a stab at it, please feel free.
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Hello ladies, I have BMX with Diep reconstruction scheduled on 18th. I have been following this group and also found surgery checklist on the common thread. But now getting anxious. Any specific tips from anyone who had BMX with Diep in same surgery? Thanks!
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I am scheduled for DIEP on Febuary 13th. I'm wondering if there is a surgery group for next month started? of if I can share comments with January Ladies? I'm feeling both excited and terrified. I cannot wait to get my implants out and have smaller, flesh foobs. I would appreciate any advice, lists, or inspriation shared. You all are amazing!
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Shades, if you had lymph nodes removed during mastectomy, consider a lymph node transfer as part of DIEP. It doesn't affect recovery but could be a big lymphedema preventative later on. (If you have lymphedema at all, wear one of the pink “no needles/no BP" bracelets and mention it to all the Drs and nurses you talk to day of surgery.) If you've been pregnant and your ab (rectus) muscle separated, now is the time to fix that. (But that one does make recovery more uncomfortable but is worth it.)
Also, see if they can do whatever test is available (not just a stethoscope!) to get a read on how your targeted arteries are doing (blood flow, position, etc.) especially if you've had radiation or prior abdominal surgeries. Better to have no surprises. My Dr didn't and we ended up in a 15 hr surgery. It turned out fine (although I was a blimp afterwards for a day or two) but i assume having a pre-game plan might have been better.
The 3 best things I took with me were two travel pillows to put under my upper arms while in bed and lip moisturizer. Oh, and a lanyard for the drains when I took laps around the ward. I could have left everything else at home.
Lanne
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Thanks for your reply. I have had a CTScan for a different ps. I sent that but they might do another when I do my preop stuff.
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Wow, a great board with so much awesome information. Thank you to all who posted and shared. I was diagnosed on Friday, Jan. 18, DCIS grade 3 ER/PR negative - right breast. I am 49 - will be 50 in 6 weeks and am physically fit and active.
I will meet with the multi-disciplinary team of doctors next Thursday for a plan of action. To be honest I am leaning toward double mastectomy with immediate reconstruction. I want to ensure the ‘beast’ is removed as grade 3 and the amount of necrosis they see scares me, and it would not be mentally good for me to be lopsided or just not look’right’. I know vanity is the last thing I should be thinking about, but it is the truth and I am transparent. We spend a lot of time on the water in the summer and I am in a swimsuit a lot. This is a busy year - our daughter is graduating high school in May, open house in June, and we are taking 7, 18 year olds to Riviera Maya the first week in April. I am hoping to get surgery early February (I might have too high expectations, but am a planner).
Would love to hear how long scheduling took?
How long was basic recovery to where you could go away for a week and enjoy?
When did you start working again? I am a VP of HR and have a great team, hoping to do emails a few days post and then work at home for a couple of weeks and then go in partial days for a while. I love my job and can’t see myself taking true ‘leave’.
Are you happy with your reconstruction? Any questions you wished you had asked?
Signed, exhausted and overwhelmed by this diagnosis.
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I have been planning on doing the diep flap since my implant got infected in September, I finally got in to see the PS that does the diep in December and all looked good, my heart sank when he said he wanted me to come in after my CT scan, I met with him last Thursday and he told me that I only have a good artery on one side and I was planning on having the diep on both sides. So now I will ne having a Tram flap on one side and diep on the other. I am disappointed because now I will more risks of a hernia, loss of abdominal strength, longer hospital stay, gothey scar right in the middle of my stomach, etc. I just can't do anything the easy way. My surgery is set for March 19th. I have spent lots of time researching the diep flap but do not know anyone who had recently done the Tram flap. I am really hoping this works as I just don't like any other option that is still available.
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Hi Fitgal50
Take the leave!! If you have a good team they won't let you down. Now is the time to put all your energy into your own well-being. BC with bilateral mastectomy and DIEP is not something you will want to handle part time, especially if you want to make your April trip in any kind of good shape. Said with much love and support... BTDT
Lanne
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Fitgal50:
I too chose for BMX with immediate reconstruction. I needed them both off since the non cancerous one had two biopsies already and mentally I needed to make sure I was doing all I could. It is not vain to have peace of mind. Do what you know will work for you!
I had my surgery on Nov 6, had to have a second surgery on Dec 7 since I had skin not healing properly. I went back to work part time on January 2. I am a teacher of small children, so had to be back to moving fairly quickly. I was just able this week to successfully sit on the floor with them and get up with no pain. If I had a less physically demanding job, I would have been back sooner. I started feeling good just before 2nd surgery and bounced back from the second surgery pretty quickly, I still get tired quicker than I would like.
If I can give you anymore information or insight, please feel free to ask, and feel free to Pm me!
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mncteach - thank you for the information and was nice to hear that overall you feel good. I will take you up on the private messaging after my appointment on Thursday......that can’t come soon enough.......Thank you
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Fitgal50, take the time. you will need the rest to speed recovery. If you were looking for advice, mine is to not rush treatment until you are comfortable with the plan. If the plan includes radiation, you (in my opinion as well as that of my plastic surgeon and rest of my team) will be better off in the long run to hold off on DIEP and do that 6-12 months after radiation. My stats are below; I was 55 at diagnosis and also fit and active. PM if you'd like.
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Hi There
I'm new to this forum and have really appreciated the info and sharing I've seen in the several pages I've read.
So here is my question: I'm scheduled for a unilateral DIEP to an irradiated MX site on Feb 8 (rads finished at end of July, MX was Dec 6/2017). I talked to someone today who had a DIEP about a year ago and she said the overall numbness still really bothers her. Both at the donor site and also in the breast area. I'm wondering what experience people have had in terms of numbness. Is it from the lower abdomen right up to clavicle? Does it fade, or do you get a bit of skin sensation back? Just today I read about PRMA and their nerve reconstruction technique, but I live in Canada and I don't think I have that option.
Thanks in advance!
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I can’t speak about irradiated skin and if that changes the sensation, but I haven’t had the numbness bother me once I was healed. I have some sensation but nothing like pre surgery. I’m still adjusting but overall have not found it that bad
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I am still numb above and below the tummy incision but it is slowly getting better. The skin is still pretty tight.I had DIEP in July on my radiated breast. Most of the radiated skin was removed so almost all of my new breast is my tummy tissue and skin. It’s numb but no different than it has felt since my MX.
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i echo OCDAmy on the numbness. I don’t really notice it. I didn’t realize my belly button was numb until three weeks ago when my PS injected some steroids to help reduce the scar tissue- didn’t feel a thing. Getting the tissue expander out was the best thing! And for me, DIEP surgery and recovery was easier than the mastectomy. We are all different; try not to focus on what might happen, just stay with what is happening to you. Good luck
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Thanks Mncteach, OCDAmy, and Runrcrb - this is helpful and frankly reassuring. This person I talked to made it sound like her whole torso was largely numb, which was rather alarming to me.
I just came from the pre-surgery consult with the surgeon who claims that only a triangular patch, with my bellybutton at the top and the widest section about 5 inches, is all that will be numb in my belly and that over time this will shrink to about 2 to 3 inches. If that is the case, then not so bad. And as for the breast, this will feel like a 'lump of rubber' at the beginning, but over time, he said the nerves start to 'find each other' and some sensation will return. He was not convinced that the nerve reconstruction surgery would add more than 10% nerve function at best, ie, I think he thought it was oversold as a panacea. SO - I just hope all this bears out in my case. And as for how long it all takes, I guess that is the game of 'wait and see'.
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Carmstr835 - give Dr Craig Blum at Sweetgrass PS in Charleston, SC a call. He was at NOLA and had to move back home to SC for family reasons. He may be in network or at least more affordable.
https://www.sweetgrassplasticsurgery.com/meet-dr-blum/
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Dealle, I'm not sure what "nerve reconstruction" you're referring to, but I can tell you about my experiences. I'm almost one year after mastectomy with simultaneous DIEP. My abdomen has some small areas where the nerves are weird -- mostly too numb but also too sensitive -- but it bothers me pretty much not at all. Strength and function are completely returned. Physical therapy and particularly fascia release were really essential for me, a few months after surgery I was still pretty miserable but that did wonders.
On the breast, I ended up with a second lumpectomy surgery and radiation, so some residual soreness from that I think will fade. By about 7 months after original surgery I was feeling like my breast was less of a rock and more of a breast. Radiation has tightened it up again a bit but I'm hoping that fades. In my DIEP surgery, my PS used a cadaver nerve to connect to the skin paddle that is where my nipple used to be. That area has REMARKABLE sensation. I feel quite grateful for it as it gives me a facsimilie of what my nipple used to feel like. Even my PS was a bit surprised by how much sensation I had there though, so I'm not sure my results are typical.
I have a few friends who have gone the implant route and I think overall the DIEP experience is much harder up front but easier over time. I'm grateful to not have to think about implant exchange ever! And my new breast matches my old one really nicely.
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Hello Everyone,
I am currently 52 & was DX at 45 with DCIS with micro invasion. Only to find out 2 years later that I had a fully invasive spot of 1.4 mm when I changed Drs & Hospital. I was Triple Negative, had a lumpectomy with 33 rounds of RADS. This May I will be 7 years from surgery & August will be 7 years from RADS. Because of my age I had gene testing & they found a BRCA2 variant of Favor Polymorphism. Which is thought not to cause BC or other cancers in the BRCA2 gene. But last year at this time I was just about to find out I had Thyroid cancer. So here I am almost a year later thinking when is the next cancer gonna happen??? Do I have 6 more years to go to figure that out??? So my chances of another round of BC are 30% (at least) in my life time. Are they higher because of my Favor Polymorphism???
As it stands now I go twice a year for testing & twice a year for my Drs appointments just for my breasts. I get a MRI & a Mammo each year 6 months apart. This will go on till I’m 75 at least. To the tune of $ 4/5 thousand a year. I would like to think less of all this cancer crap in a years time.
So my ?’s are what % did your BC risk go down?
How much did you pay out of Pocket for the surgery?
I have Etna insurance 😕 not sure what they will cover but know my 100% kicks in at 7,000 OOP! Money is tight so I’m looking to see how I can do this close to home.
Does anyone know of anyone who went to Johns Hopkins & their Drs for the DIEP? I know my Nurse Practisioner who is under the head of the Breast Oncology Surgeon there will recommend someone. But I would like to hear from somebody who has been through it there.
I have had 4 c-sections, a hysterectomy, insicional hernia repair, but it’s been years since my last surgery on my abdomen. 8/9 years.
Anyways I’m a hot mess & have high BP & cholesterol too.
I will keep reading as I gain much through others words. Interested in your input greatly. This will be a long Hall for me & I may not get there until next year. But I know I need to get on this for a plan & some peace of mind. One way or another.
Thank You ALL Julz
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I still have TEs in. I lost too much weight during chemotherapy to do immediate DIEP. I've gained weight since then but not where I need it. I think I would have to actually become fairly overweight before I had enough fat in my abdomen for DIEP as I tend to put it on in my tighs and hips and butt instead. I pitched the idea of doing an igap instead but my PS didn't seem hot on the idea. I guess the blood supply isn't as reliable and it's two 10 hour surgeries...but if you want to know something, I don't care if it's two 10 hour surgeries.
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