2018 DIEP Surgery
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BCSilverlining - like most everyone has said - you will get through the chemo. I had four weeks and then 12 Taxol - lost my hair and just went with it. I had three wigs I rotated - one long and straight (real hair, expensive) and two short. I had really long hair before (and was a runner too.) I always got compliments on the wigs. Now I have super short hair that came in pretty much the same color and texture as before and I have gone from platinum blonde to a sort of in-between now. I miss my hair - but I feel a bit like a chameleon these days so it's kinda good to have what I'm calling my "transition look." I will have my DIEP surgery next month and I have put on about 15 pounds since I started all of this My weight gain is due to the aromatase inhibitor I'm on. I also realized that I've gained weight differently since my BMX. I had C-D cup breasts before and I swear that's where I gained weight. Now that there is no breast tissue I gain weight in my abdomen - which I hate.
My goal after I heal from DIEP is to get back to running and focus on learning my new body. I hate when people tell me not to worry about weight - I'm vain I guess - but I don't like the weight. I recommend staying active - I wish I had been more active last year through treatment as I didn't expect to gain with the AI.
Oh, and I worked through chemo and rads - it is possible. My doctor told me to not let BC be the center of my life - continue living my life and find a way to fit BC into my routine. I loved that advice as BC has become something I manage - it doesn't manage me.
And...I used to leak when I run. BUT since I had my ovaries removed last year it's not as bad. I'm not sure that's why but I used to have to wear a pantyliner all the time and looked into surgical correction pre-BC. After my ovaries were taken out last year that problem has nearly gone away.
Hope this helps - and good luck!
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BC--I want to say that I was so afraid of losing my hair but really that was not so bad. I had a great wig that resembled my hair and wow was it easy to get ready LOL. The wigs now are really quite comfortable and I did not mind wearing them......just shop in advance. I am now getting used to having to style my new hair......wigs ere easier, just sayin. I had six rounds of TCHP and a year of herceptin only. I lost about thirty pounds and I remained active for most of chemo. I will admit I was down for the week of chemo. I believe that if you stay active you feel better. Also I can not say enough good about the look good feel better program. I learned how to disguise the eyebrow and eyelash loss and again that was not as bad as I feared.
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BCSilverLining...hang in there with the cold cap. I lost about 60% of my hair and eventually did have to wear a wig. I didn't want to do it, but my hair was so thin I looked terribly unhealthy. But, even after getting the wig I continued to cold cap and about halfway through the Taxol treatments, some of my hair started growing back. I only had to wear the wig about 4 months and then I had so much hair to start re-growth with. So, even with all the hair I lost, it was worth it to me personally to cold-cap because the hair loss was a big deal to me. It's not that important to everyone, but it was the right call for me. Just hang in there even when you see hair coming out. There's a great cold cap group here that can give you support and of course I'm happy to answer any questions you might have.
I didn't gain much weight during chemo, but here over the last month or so I've put on some pounds that won't seem to budge. I recently finished Xeloda and have been recovering from complications/surgery to my expanders that were cause by radiation damage. So, I've been pretty inactive. I'm anxious to get the surgery (DIEP Flap on 8/22) and recovery behind me and start getting back to exercise and eating better.
Good luck to you!
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hoping I didn’t screw something up last night. I have some major scabbing on my areolas and nipples (doctor said it is nothing to worry about). Taking a howler last night and washing them pulled one of the scabs. It spilt the nipple open on one side a little. I used gauze and tape to push it back together. It looks pretty good this morning. You can still see where it happened but it’s back together. Hoping it scans over again and will heal. I’m will be more gentle in washing those areas from now o
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Teacher01,
I haven’t had nipple recon, but the rules I had for mastectomy and DIEP were just to let soapy water run over incisions in the shower, not directly wash them. Maybe it’s the same for nipple recon? It sounds like you did a good job patching it up, though!
I’m tired of being such a delicate flower! And my husband is a big guy who doesn’t know his own strength. He’s still afraid to touch me. May be for the best for now.
L.
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It is the same for nipples. Soap and water cleaning
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Anyone know when we can sleep on our stomachs and sides? I am having a very hard time sleeping I am a stomach sleeper and I been trying to sleep on my back now for almost a month.
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It seems every doctor is different. I slept on my side as soon as I was comfortable doing so (ab drains!) and placed a pillow to support my breast. My reconstruction was unilateral. My PS is very much along the lines of do what it comfortable letting pain be my guide (just got the all clear to sleep braless after my revision surgery last week, OK to ramp up activity, etc.). If it were me, I'd sleep on my side and see how it goes. (My directions from last week's lift say no stomach sleeping for 4 weeks - maybe that is the same for diep.) also feel encouraged to call the doctor.
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I was allowed to try side sleeping after six weeks. Not sure about stomach, I haven’t aske
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Tomorrow is the big day! I am the first case and have to be at the hospital at five in the morning. Going to try to get some rest this evening as I had to work yesterday and today. Thanks everyone for all the great advice. I will let everyone know how it went in a few days
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Good Luck ElijahGirl!
Let us know and here's hoping and praying for a great outcome.
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good luck ElijahGirl! Let us know how you are doing when you can.
My PS told me I can lay on my side when it's comfortable. I've started to do that but it makes me a little nervous so I end up just rolling on my back.
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carmstr- I was told 6 weeks for side sleeping and 8 weeks for tummy sleeping. In the end I tore an internal stitch on my side one of those first nights-stung like hell. Climbed back in the recliner just as soon as I could move again. The position isn't so much about what's painful and what isn't. It's about unrestricted blood flow and preventing as much tension on the sutured tissue as possible so it doesn't rip through the stitches and/or newly attached blood vessels and undo the work the PS has done. Sleeping on your tummy will also put extra tension on your abdominal incision which could result in it opening up. Better to deal with poor sleep than deal with open incision/failed flap/ripped stitches.
Elijahgirl-good luck tomorrow!!🍀
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Elijahgirl, praying for a miraculous result for you tomorrow!
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Good luck tomorrow, Elijahgirl!
I just got back from a support group meeting-got to show some other ladies my results-they are thinking about doing reconstruction. It feels good to be able to give people some visual info to help them make their big decisions.
Tomorrow is my second post op visit-I think we look at the healing and discuss possible next steps. I know I'm doing the lift and possible reduction of my original breast to match the DIEP, and dog ear removal. Nipple recon is usually after that, right? I'm not sure if I want to do it. Part of me thinks, “You've gone this far, why not go all the way?" I just don't know whether it will be worth the added aggravation. The other part of me feels like it would be like doing a painting and leaving a blank circle in the middle of the canvas.
I was a side sleeper before, but have gotten pretty used to sleeping on my back with the wedge. I could never sleep on my stomach, so not an issue for me. I plan to stay on my back for as long as possible, as long as it doesn’t bother me.
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Praying for you Elijahgirl. I'm right behind you. My surgery is 8/22. I will be anxious to hear how you are doing.
It has been some days since I was on this message board. Thank you ladies for your input about my 4 hour trip home after surgery. Since I do have to go back for post op in in about 7 days I decided that I will stay there close by after being discharged. My mom is going to stay with me as DH has to get back to work. We found a nice hotel that is basically a mini apartment at a pretty good rate.
BCsilverlining Just was going to add my input about the chemo and that like many others here said I also ended up getting a wig before losing my hair and once hair started comimg out I just had a friend of mine shave my head. But when the hot flashes started coming it was a bit of a blessing when I could just pull the wig off and could cool down much faster. LOL. Couldn't do that in public of course. But it was super convenient to not have to mess with my hair before going to work. I really did like that. I also benefited from the Look Good Feel Better class plus got some nice free make up. The first few days after chemo were the hardest. Like flu symptoms but then would progressively feel better until next round. I learned to let my Onc know of any nausea or anything as they hve many meds that can help to minimize them. I also ended up gaining about 15 pounds or so after chemo. I was home at that time and doing rads and was hungry all the time and kind of felt like I could finally eat whatever I wanted and did so.. I looked pretty puffy and learned later that they did give me small amounts of steriods during the Taxotere I think to lessen other side affects. The pounds snuck up on me and were difficult to shed. I'm sure that is due to being put in menopause also. Still difficult but can definitely be done with excersise and good diet.
Take care and keeping everyone here in my thoughts and prayers. 🙏❤
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I have this sweet teacher who is watching out for me. She is wanting me to slow down. She tells me not to push it so hard. And no one at my school is letting me do any heavy lifting. They are all wanting to do it for me
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Good luck Elijahgirl! Keep us posted.
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I am 12 weeks out from the first surgery and 3 weeks out from the second. I am back to work full time as a teacher. I don’t know if it is surgical related but since coming back on Monday (this week is for teachers only) my back kills me.
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Hi Donna,
Are you sitting in long meetings? I’ve found that sitting for long periods is more exhausting than standing or laying down. I’m not back to work yet, but was at a 7 hour union bargaining meeting last week, and spent a lot of time standing behind my chair, a little bent forward with my hands on the back of the chair, supporting some upper body weight. It helped a lot. When we do start back, I will probably also bring a pillow or two.
-L.
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Hi All! It's taken me awhile to get on here and share my experience, while I have kept up, I felt more and more to come on and share my experience. Please know that my intent is not to scare anyone but I had a hard time. I was diagnosed in October 2017, Triple Neg/BRCA 1 positive/Infiltrating Ductal Carcinoma. Stage 1/1.7cm at 7:00 in the left breast, a small Stage 0 Insitu at 5:00. Prior to diagnosis, I had taken quite a few months off from running, I had a pesky hip flexor that was causing me quite a bit of pain, from doing several half marathons very near each other. When I was given my cancer dx, I laid down. There, I said it. My mom died of breast cancer 25 years ago, and while I understood that treatment has come so far, I'd be lying if I didn't say, I was just waiting for it. I should also add that I am not a big worrier, I don't stress doc appointments or tests. But I laid down. There is SO much to consider, what is good for one is not necessarily good for the next, and when your head is spinning, it makes it even more difficult to make a sound decision and feel at peace with it all. (I'm sure alot of you are shaking your heads yes at this point) My insurance was crap, being self employeed, we picked the most Mikey Mouse plan, to save money, because let's face it, we were healthy, active people, let's save some cash this year...BAAMM...you have cancer. So, I met a surgeon and oncologist and said, fine, let's go. Port was put in end of October and 4 rounds of chemo (AC) started the beginning of November. I was sick for a week and then pretty good, but SUPER tired on the off week. My doc kept telling me to "make myself", "even when I didn't feel like it", get out and walk. I laid down. Well, I found out in late November that my private Mikey Mouse insurance company was going to drop me and that I would be forced to find new insurance. With that came all new doctors, because the docs I were seeing didn't take any Obamacare plans. I won't bore you with more details but in the end, I ended up in a better situation with an Oncologist I adored (Dr. S. Naqvi), a surgeon (Dr. Elizabeth Bonefas) and a plastic surgeon that was a master (Dr. Sean Boutros) In January, I started the 12 weeks of Paxitaxol, every Friday. This was an easier drug, I never needed the white blood cell "booster" shot but I was tired. Dr. Naqvi kept telling me to get active again. I laid down. Finished chemo on 3/30/18. Met with surgeons to get going. Picked the DIEP flap because I couldn't see myself with implants. PLEASE know, that is not a "judgey" thing, I was HYPER aware, 24/7 of my port and after having a long convo with Dr. Boutros, I just couldn't get over the idea of something being in my body that wasn't me. Another consideration was the fact that I was turning 50 in May and couldn't see or didn't want to think about "implant health" at 65 years old. Dr.Bonefas and Dr. Boutros are like the Batgirl and Batman of mastectomy/reconstruction here in Houston, TX. They've worked together for YEARS and as they said, know how to dance around each other in the OR. Dr. Bonefas told me that she was the "opening act" in this surgery because all preop and postop would run through Dr. Boutros. I type all this to say, I didn't give the double mastectomy and how extensive and invasive it is to your body, enough weight because I was so focused on the DIEP. I took to reading through this post about that time to get good questions to ask and found that it overwhelmed me SO much that I literally had a complete melt down (again, completely unlike me) at a preop appointment at the plastic surgeons. They all do things SO differently! Stay with me, I type all of this so you understand the whole story! He reassured me, he's cocky, and normally I'm not a fan of cocky people but I have to say, I REALLY liked this about him! He has surgeons from all across the country, coming to watch how he does the DIEP and they all say that he is YEARS ahead of what some others are doing. There is no rib removal, muscle cuts are at most 2cm to retrieve arteries. He KNOWS what he is doing. I felt like I was in the best hands and off we go. I had my surgery on 5/2/18. 10 hours long. Spent 1 night in ICU, home the next day. 3 drains total. Loaded with Norco, Valium, Ibuprofin, Stool Softener and Xerelto (I think, blood thinner). I was already taking Lyrica for neuropathy from my chemo. Norco and Valium taken piggy backed, every 3 hours. Ibuprofin for break through. I had gotten a shower chair, an electric recliner, some easy pj's , the Bottom Buddy (a must for taking care of "the do"), a lanyard to pin my drains to and a grabber prior to, to be "ready". Well, to say that my hubs and I were not prepared for just how weak, out of it from the drugs and how much help I needed would be an understatement. No compression garments, Dr. Boutros said no to these because he didn't want any of the arteries conpressed or constricted. He also doesn't like people staying in the hospital any longer than necessary, due to the risk of infection. I had a wound vac on the abdominal incision for about a week. It was a complete daze. It was painful, it was hard, it was humilliating. The Norco left me wired. The schedule was basically, every 2 hours, get up to pee, take a pill, walk around the house and then get me settled into the recliner again. A portion of my flap failed. They had me apply silver salviden (?) to it for a week, to see if that would help. It didn't. It was horrible to watch, every day, the flap turn green and black. Every day, my hubs would help me shower, change dressings, oh the amount of gauze, my skin hurt from the tape, and take care of keeping track of pills and drains. I would read your posts here and think, why in the hell is this SO hard for me? Why am I not rebounding like these other ladies? I started to get really down and thought I had made a HUGE mistake, picking this DIEP. I celebrated my 50th birthday in my recliner. The good news, all margins and lymph nodes were CLEAR! Had 2nd surgery on 5/25, to cut away the dead area, even out the other breast and clean up abdominal incision, due to the fact that blood was trapped all behind it. Came home (only a 2 hour surgery) with a skin graft and alot of stiches. Back on the hard drugs, when I was just starting to wean off them. The plastic suregeon told me at the follow up, when asked, "Why is this taking me so long to recover?", that due to chemo, my body just wasn't healing as fast, it happens. Due to the setback with the DIEP, I was probably 2-3 weeks "behind" schedule of what most people experience with this surgery. So, great, I'm the lucky one with the problems! Again, sorry this is turning out SO long and don't mean to scare you BUT I felt like some may want to hear the "not so great" side of this too. I wasn't able to drive until June 23rd. And even then, it was painful to turn, so, just quick trips around 2-3 miles away. I went back to the gym on July 9th, just holding on and walking slow on the treadmill. I started easy arm exercises and stretches probably mid June. At this point, I was still taking Tylenol and Advil a couple times a day for pain. I still walk stooped over and have to constantly remind myself to stand up straight. Another problem I am having is my belly. From ALL the laying around and drugs, prior to this surgery, I gained about 15 pounds. So while it was great to getting a "bigger" result in my new breasts, when they did the tummy tuck portion, think of a pullstring. All the fat was coralled into the front. My belly, was and still is (although I'm working on it) hard as a rock, and painful at the end of the day. It's distended and I see no evidence of what you may think when you are told "tummy tuck"! Here it is Aug 9th, and yes, I am way farther than I was but I had NO clue that it would be this hard, that after all this time, I would still not be anywhere near "myself", that I would still be sleeping most nights in my recliner, because I cannot lay back or if I've slid down in bed, I wake up in pain and am like a Weeble/turtle trying to get up and out! OK. I'm going to wrap this up now! I did not intend to type this much, it was actually kind of theraputic, I'm hoping that I didn't scare the crap out of you, I wish I would've "made myself" walk and be more active during chemo, 9 months of treatment and surgery and "laying down" takes a MAJOR toll on your body. I'm hoping as things continue to soften and time marches on, I'll feel better about my decison to have this recon, would I have had an easier go if I would've gotten the implants, I guess I'll never know? Thanks for taking the time to read. Bless you all as we move through life with this wicked bitch that has taken our lives and shook them every way but right!
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As if my last post wasn't long enough (lol), I wanted to add (so I don't sound like a completely crazy, whiny hag), My HUBS! My friends and neighbors....SO much kindness shown. Overwhelming gestures, from coming with me to chemo, to dropping meals off, to gift baskets, blankets, cute socks, it goes on and on! The support and love was BEYOND! I said to my hubs, one day while he was helping me dressing and was dressing my incisions, through gulping sobs, looking like Frankenstein, "How will you ever be able to look at me again and not remember all this horrible mess?" He simply hugged me and said, "you are alive and that's all I care about." (Yes, I've teared up again just typing it!) They are living it too! Maybe I am a big whimp and needed more help than most but for those of you considering this, you WILL need some help, this isn't all just physical! It is CRAZY emotional too! OK, I swear, now I'm done! ;-p
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Ok, now I realize that I’m starting to look a little crazy! After rereading my post, I realized that I never said what was MOST important! It is this...we are all at different stages of this journey. Some have had treatment, some have not, different drugs, radiation, some may have had their mastectomy a year or more ago. We are all different and every BODY is different. So, you can’t compare your outcome to others! There, I said it. Now, I swear I’m done
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Finn21!!!
Don't beat yourself up!! I know EXACTLY what you mean.... several times I compared myself and my recovery to the reports of other people and wonder why am I such a weakling and a whimp?
You are correct - everyone is different. Different body types. Different illness. Different surgeries and circumstances. But I realize now after reading your experience is that if you read between the lines all of us here went through many of the same things that you went through but that type of trauma is difficult to put into words. NOT minimizing what you went through! Just saying try not to beat yourself up about not being at a certain level of recovery as other people.
Leatherette just reported that she had to stand and lean over a chair during her meeting and Teacher01 is having backaches and I'm sure is super exhausted going back to work. You're ok!!! You're normal! You're strong! You're doing a great job!
I think a lot of people are going to appreciate your story. I think you are right that some often point out how great this surgery is -- all butterflies and rainbows. It's not. It's hard core difficult. There were some times I wondered "why did I do the to myself!"
You've been through a lot and your posts articulated your journey very well. Everything from your cancer diagnosis being the daughter of someone who had breast cancer, the insurance fiasco (a truly American problem), changing doctors, chemotherapy, unforeseen surgical complications, the pain, the medication side effects, the requiring help from family/friends, the love and support you recieved, the feelings of hopelessness and frustration. I related to so much of what you wrote.
You will get there. I, too, am trying to remind myself that it's a slow process. I see this now as a life experience and a journey.
And regarding the belly swelling... I discussed with my plastic surgeon. That is because the lymphatic system can't flow. Use an abdominal binder now -- you will get relief!
Sending you hugs and love. You remind me of myself --- too hard on myself. And yes - people do need to be warned and know this surgery is NO JOKE! That's why we call it getting hit by the DIEP flap bus.
Xoxoxo
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Thank you so much Justkeepmoving! We call it the Shit Show in our house! I have been thinking about trying the binder! So, good to hear I’m not alone, honestly didn’t think I was but validation helps on “those” days! Peace out
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Monday we sat in mtgs all day. I had to keep getting up and walking in the back. I get no relief when it hurts until I am able to lay down it take Tylenol. Going to have to keep Tylenol in my bag for school
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Finn21 - you're the bomb! thanks for sharing your story. Each of us is different. I hope your healing continues and you can get back to that active healthy lifestyle! I'm finding that getting back to where I was two and half years ago is harder than I expected. The win is that I've realized I'm the only one who cares how fast or far I can run. And I'm slowly getting over it and just focusing on where I am today.
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Finn, I'm sorry this has been so hard for you. Hoping for your continued healing.
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Finn,
First, congratulations on the clear margins!!!
Thank you so much for sharing your story. I have been watching this thread for a while, waiting for my surgery to be scheduled (late September). Though I don't anticipate any problems, your account is another example of what I, or someone else may experience.
Justkeepmoving, that was a fantastic (and comforting) response! You're right, no two are exactly the same, and there are so many variables among us. Thank you for the perspective.
Don't think of the what ifs. I felt like you about the implants being foreign objects, but my surgeon kept pushing them. They were painful and funky looking, and I ended up with an infection that wouldn't heal til they were removed. Always go with your gut...wish I had!
Good luck with the rest of your healing journey!
Vickki
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Finn21, thanks for sharing. I did chemo first and recovering from the surgery was no picnic. I’m still dealing with a rotten post-op infection and will need a 4th surgery to sort everything out. I am a year out from the original DIEP. I do marvel at the speedy recovery of some who post on the thread and good for them. DIEP forced me to develop patience, a virtue I would not say I had in abundance before breast cancer. Things do get better. Keep on posting. I’m sure you may not realize it but you have probably helped someone else be prepared. Hope for the best first, of course. Good luck in your recovery
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