DIEP 2011
Comments
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Has anyone heard of abdominal lymphedema? Is it the same as abdominal puffiness after DIEP? Is it a lifelong side effect like lymphedema of the arm after lymph node removal?
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I have heard of truncal lymphadema.
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Just popping in to see how everyone is doing. Been so busy with back to school prep, work and finally school started for both my kids...it's been hectic to say the least.
lm almost 3 months post op and so far so good, had really bad neck pain that had subsided. I see my PS next Friday to get scheduled for stage 2, my noob healed really well, it's soft and warm. Been using Palmers intensive oil therapy for scar massage and it works really well.
Best wishes to you all for a smooth recovery (((hugs))
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Hi all, new to the thread...have 2 weeks to go before immediate uni-mx Diep on Sept. 21st. Ugh, not looking forward to this whole thing, but have read so much helpful, supportive posts on here that I feel that this is doable. Thank you all!! I have dealt with pain this summer from my lumpectomy which turned into partial mastectomy (beautiful reconstruction, however, which makes it even more sad),so I'm not too afraid of pain or the operating room, but have to wonder if my head is screwed on tight to want to take this on, lol. I also wonder if I should be doing a BiLatMX. My sister and mother have gone thru this even though we are not gene carriers, luckily. I really don't want to lose the other one, so sticking with my plan of doing the one. I hope it's the right decision. I'm feeling empowered by the amazing women that have gone thru so much more than I have already. Best wishes to you all!
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likalaw50... it is indeed a personal decision... I knew from the get go that I would do both... I didn't want to continue all the monitoring of my good breast so that was my biggest reason... Once I decided on this big surgery I knew a bilat was best for me... one recovery, not deciding next year to do the other side and have to recover again... and once they use the abs, they would have to find fat elsewhere... But in the end, for my bilat, they used my hips, not my abs (didn't have enough fat for two breasts), but then they had to re-do the right side and they used the abs for that... So, I told my doctor (jokingly) not to waste anything as I am running out of usable fat. So, was it the right choice?? For me, I think so, but I can totally understand wanting to keep one breast that has sensation and is you... and if they use your abs and later down the road you decide to do the other, you always have your hips... and the hip flap is a much easier recovery.
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likalaw50: welcome! two weeks and then you will be on the other side resting and healing. this is a great forum, a place for support and where others can share their experience.
I had a uni and questioned my choice a few times, also wondered if I was crazy to go through the diep procedure. My risk for getting BC on the other side was reasonably low and will be a bit lower once I go on tamoxifen (haven't started) and if I went bi, in a weird way, I was kind of planning on getting BC. You have to know yourself and what is right for you. I knew I wanted to keep my non-BC breast if at all possible and that I did not want implants, so that clarified my choices. I thought about myself a year in the future living with the various choices and felt that the uni diep was the best option with the information at hand. If I had gone bi, I would always wonder if I made a mistake. If I get BC in the remaining breast, so be it and I will deal with that if and when it happens but I am doing everything I can to stay healthy; I'm working to reduce sleep well, eat healthy, keep active, and stay tuned to the present moment. Who knows, if I do end up with BC on the other side maybe by then they will have perfected fat grafting!
You find that BC is so individual and varied; we all make the decision that is right for us personally and respect the decisions made by others. I absolutely understand why women choose to have bi mx even if they don't carry the gene marker. You also have the right to change your mind at any given point if you feel that is the right path for you.
I think it was about two weeks before surgery that I freaked and decided that I was crazy and that I needed to go with implants; I had myself and my family convinced but I kept having a nagging feeling that I was changing my mind more to please others than for myself, I was also freaked about the costs, even though our share was capped at $5000 . . . did I really 'deserve' a $75,000 - $100,000 procedure, especially one that was a 'choice'? By listening to my internal wisdom-o-meter, I realized that anything else but the diep would feel like a betrayal of my soul.
Betsy: how are you doing and feeling? How is your healing going and how does it feel to be home?
Southamptonmom/Rose: It is great to develop a relationship with your PS; that added so much to my comfort level.
Misszed: Do you feel like the three months kind of flew by? If you are there already, pop over to the stage 2 thread. I'm three weeks post stage 2 and really pleased so far with my outcome. I may need some additional 'sculpting' as in additional fat grafting but otherwise, I'm quite happy.
If you had asked me a year ago if I would be happy with a scar hip to hip and scars on both breasts, I would have laughed, however today, I'm good! Every now and again, I grieve a bit for a body that was relatively scar free, but those moments are fleeting. Having breasts that 'sit up' all by themselves is quite lovely . . .haven't had that for . . hmm, a couple of decades? Also grateful for this community and others that have grown out of having BC and also for a lot of gratitude and wisdom that came along with this journey.
Kathy
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Kathy... yes, good to be home, and yes healing much better than the last time. Yesterday I was kind of running around... had doctor appts and getting my son ready for school, so in and out of the car a lot and my ab incision bothered me last night. So today, rest (for the most part)... still need to do a few things.
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Betsy,
wow - running around already - you are superwoman! Our bodies do let us know when they have had enough! I'm sure your family is so happy to have you back!
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Three weeks post diep today. Yesterday, had an occupational therapist at the house. Need to get range of motion back n my arm quickly to start radiation in 3 weeks. She had me do several different stretches 10 x each. I thought it went great!. When I was going to bed, I was so sore though. Yikes. Now I'm afraid to do the stretches today, but I will. Just got home from my sixth Herceptin tx at the cancer center. Got a ride there, but took the train home. It is a mile and a half walk to my house from the train. I am tired, but not sore, so I think that was a good thing. Need to get some energy back before I do the stretchng though. Since she's coming again tomorrow, I better do it and show a little more improvement.
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We were gone out of town for the weekend to see fam, it was great to see the grandbabies! Good medicine!!!!
Had another checkup. Got a couple more stiches out. Woohoo! The open area is sloooowly getting better. She thinks it will take at least a month. Still watching for signs of infection so far so good!
Having a bit of radiation recall on my skin on the top side of the flap. Also having a bit of pain top of my sternum, she said that is were she took out a bit. Those 2 areas are really the only places I am having pain.
Drain was still putting out too much. Since we've been back home the drainage is dropping so hoping to get it out next week & then I'll be free of drains!!!!
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likalaw50: Welcome!! The time will fly right by and you will be on the other side soon.
Kathy - Yes, the 3 months seem to have flown right by, what with summer, back to school prep...sigh.. lm just thankful for this board for helping get through this. I will look for that stage 2 thread, l couldn't find it last time...l have questions..lol
Kay1963- Im happy for you and wish you speedy healing.
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Betsy...I feel the same way about not wanting to do all the future monitoring of the good breast, the fear of having to possibly go through this again. I can only hope that if someday I develop pre-BC or BC again that they will have more options than MX, with the everchanging technology. I hate to throw out good tissue with the DIEP since I'll only need 1/2 of it!
Glad you are on the other side of this and recovering! Best wishes!
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Kathy...thanks, I agree this is a great forum, and I've learned so much. I too did not want those stinking implants,lol. It felt wrong from the start when the PS put a silicone implant in my hand. I knew it would be all wrong inside my body and the thought of rupture, capsular contrapture, replacements, etc. just didn't set well with me. He leered at me, saying "women pay me big bucks for these!" I had just found out 2 days before that I had to have a MX, so I wasn't in the best mood, either!
It's amazing to me how individualized and personal all these decisions are. Never thought in a million years I'd be having to make these decisions. But I'm going with my gut instinct and reading lots!
As for the uni-mx DIEP decision, I haven't decided on Tamoxofen yet, but may see what SE I get from it and also stay as healthy as possible. Have you heard of Brocco-max supplements? My sister is taking those to help kill off cancer cells. OHSU in Portland is doing research studies on it now, but a person can buy them though Amazon.com.
Glad to hear you are on the other side of all this post Stage 2!
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Misszed...glad you are feeling well and that you healed well. I don't look forward to the neck or back pain that so many have experienced. Luckily it is temporary! It's hard to believe my way of life as I know it, will be changing drastically in a couple weeks. We got a new kitty this past weekend which as really buoyed my spirits. My husband and I had 2 and then right after I was dx'd one of our cats passed away unexpectantly. The other one is so happy now, too.
Good luck with school!
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Well, I am two weeks post-op. I had 4 out of my 5 remaining drains out yesterday and am thrilled. I still have one hip drain, but with yoga pants, it is completely manageable. The underarm drains were really making me crazy -- they irritated the skin under my upper arms so much that all the skin on my torso felt like it was screaming.
PS is thrilled at how my flaps are doing -- excellent blood flow, no sign of infection, stitches dissolving nicdly. He is also impressed with my belly button and belly incision. I am now allowed to statt standing up straighter (um...been doing that since I started getting lat spasms last week). I can sleep flat (but still on my back, so I need a pillow under my knees). I must wear the binder for at least 3 more weeks. I can resume coffee and chocolate, too - and won't need to give them up again for Stage II, so it is safe to dive back in. Pain is minimal -- really only irritation from the binder and the sole remaining right hip drain.
Re: uni- vs bi- MX.... I had a recurrence of DCIS after 4 years in my keft breast. It was also Grade 3 -- the original lesion was <1 cm and was treated very aggressively with lumpectomy, re-excision, 28 regular and 8 boosts of rads and tamox, and it still came back. A uni-mx was a foegone conclusion, but I didn't want to give the other breast a chance to kill me either. I had never had much trouble with it beyond cysts, but I didn't want to take any more risks. It only took a few days to decide that a bmx was much better for me, and all my doctors agreed (I also have an extensive family hx but am BRCA neg). The ovaries will be coming out next spring, since I apparently have industrial-strength estrogen as I am still having regular periods at 54. I was talked out of all of this the first go-round... Now I am doing it my way. However, it is an entirely an individual decision, as so many have said. No one size fits all on this one! Good luck to those contemplating it.
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L -
Libby... I am also 2 weeks post DIEP, also Aug 23... I still have both of my hip drains, which I have had since my hip flap surgery in July... so 7 weeks now... I am hoping to lose them soon, but will lose them for sure by next week, cuz 8 weeks is the maximum... but no other drains. I am wearing a girdle instead of a binder (due to hip flaps)... not sure which is worse, binder or girdle. How are your breasts? Mine are still quite firm (left breast is 7 weeks post surgery) and they feel about the same. I seem to have a bruised feeling in my upper outer rib area... do you ?
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Betsy,
Wow, the rest of my post got cut off ... Interesting.
My breasts seem to be pretty firm, but my PS explained to me that he did some internal work (stitches, maybe?) to get some projection out front and prevent them from going under my arms on the sides. I had some rolls of fat there and I think he moved some forward. I was originally a DD and it looks like I'm still about that size -- at least a D. He said that my radiated breast is smaller than the non-radiated breast, even though it got the bigger flap, so he will probably reduce the non-radiated flap at Stage II.
I have that same bruised feeling, too. It is worse on the radiated side -- I had "rads rib," as I called it ... The outer rib under the radiated breast has always been tender and sometimes pinched when I bent a certain way. When I mentioned it, that was when he said something about the "work" he'd done.
To return to my cutoff point in my post above, I decided on a BMX because it was a recurrence (after 4 years), it was Grade 3 with comedo necrosis, solid form, and I have a bad family hx even though I am BRCA neg. I am also having an ooph in the spring, b/c at 54, I am still having regular periods. I apparently have industrial-strength estrogen which overcame a lumpectomy, re-excision, 28 regular rads & 8 boosts, and tamoxifen. Out damn ovaries, out I say.
I'm glad to hear you're doing so well after your difficult time, Betsy! I pulled out of my difficulties as soon as they stopped the narcotics -- you have really had a rough road!
l -
It has indeed been a long 7 weeks... its funny cuz many women will say they hit a low point at 3-4 weeks, frustrated that they still were weak... At that point (the first go round) I was busy with bacterial infection, bleeding breast and a blood clot, I was distracted... so in my mind, it takes what it takes. Of course, I had hoped when I scheduled my surgery (in July) that I would be almost normal by now, and of course I am not... But I also have been realistic and know that SHIT HAPPENS and complications do happen... and if they do, we just need to deal with it.
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Exactly, Betsy! When I was dx with the recurrence, my PCP called me. Bless his sweet heart, he was pinging off the walls. His voice was shaking and he was near tears (his mother died of bc years ago). "We did everything right," he bellowed. "Who f*cked up?!" I said, soothingly, "Nobody f*ucked up, Jon. This goes in the box marked 'Shit Happens.' It is what it is. We all did everything right ... Shit just happens." I was grateful that he was so upset, because my (soon-to-be-former) oncologist was bored out of his mind that I had DCIS again. He is a rock star in the world of oncology and ... Well... I guess my piddly DCIS was just not worth the effort of even being upset on my behalf.
L -
You need to feel confident in your Mo's interest in your case.. You want them WORKING FOR YOU... not bored of you.
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You betcha! I was so angry that I told himsnarkily that I was sorry for "wasting his time." He then condescendingly patted my hand and told me it wasn't the end of the world and wouldn't impact my life expectancy. Feh! That's the last time I will see him. I have a recommendation for an excellent onc used by the nurse-navigator at my hospital (she is a survivor) -- everyone around here is very impressed that I have the rock-star onc, but rock-star status doesn't do me any good if he isn't interested in my case. I love all my doctors and expect to love my onc, too -- and I don't. So, off I go!
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OK all you DIEP ladies,
I have a question and I hope I like what I hear... I am having a consult with my PS next week and he will let me know if he thinks I can have DIEP. He told me back in early June that he thought I had barely "enough" to work with. If that is still true next week, he will refer me to a DIEP surgeon (he doesn't do it). I thought I would have to wait until after radiation to finish my reconstruction, but now I am wondering...
Can I have DIEP surgery before radiation? Especially if they cannot radiate my breast area (I had Mammosite last year and I don't think re-irradiation is typically done). So my axilla and intramammary nodes will be fried, I think. I'll learn more on 9/21. If I can have DIEP first, assuming I qualify, I would do it in a heartbeat.
Thoughts, suggestions, any experiences?
Thanks so much!
Michelle
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Hi Michelle.. My local PS said I was too thin and did not have enough for a DIEP... I continued my search and ended up in New Orleans with doctors who do more than just DIEP, like hip flaps (some PSs don't do hip flaps)... the plan was to have a STACKED DIEP (very few doctors do this) using both hip and ab fat, stacked on top of one another... In the end they were able to just use hips... but I then had a complication and ended up having DIEP as well... so... just because a doctor says you are not a candidate, doesn't necessarily mean that is true... It is true for me that I did not have enough belly fat for two breasts, but my local PS didn't mention other options, like the stacked DIEP.
As far as radiation, I have spoken with women who have done both, had DIEP before and after... I think the best plan is to have the stage one DIEP and then radiate and then have stage 2, but I would ask a reputable doctor... Ask my doctor (Dr Dellacroce) who has an online forum for asking questions... here's the link
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Thanks, Betsy. I might have considered going to NOLA before I left Kansas City if it were covered by my health insurance plan and if I had enough time back in April to go for a second opinion. I have moved to NH and I've got the best of Boston available to me, and I'm going to go with that. I'm a size 4 and I have no hips, so a stacked DIEP is highly unlikely. I've pretty much resigned myself to the fact that it either comes from the tummy or it just may not be possible. But if I am pleasantly surprised, then I would definitely like to get Stage 1 accomplished this year. I had assumed it couldn't be done until after radiation...but then I saw a post from someone who indicated she would be doing rads after having DIEP (stage 1, I assume). So that is why I posed the question.
Michelle
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Michelle,
My PS indicated he would not do a DIEP before rads. I had already had rads my first go-round in 2007, so that wasn't even a question for me. He still has some concerns about the skin on the radiated breast -- it remains redder than the non-radiated breast -- and he speculates I may lose part of that nipple, but for me it is small in the overall scheme of things. If you've had rads already, I'm not sure if they will do them again.
It is very individual to each doctor about what they will and will not do and how they handle things. Mine, for example, only wanted me in hospital for 3 days because of the risk of hospital infection. He is on the very low end of the scale on that, and freely admits it. I'm sure you will be able to find a PS who can help you.
Good luck!
L -
Hey Michelle, I just had the DIEP as you know. I was worried about not having enough fat. I started out first time seeing onc at 135 lbs (I'm only 5'2, so that was plenty). Half way through chemo went back at 125, and she said I had enough for one breast, which is all I needed. Ended by the time I had surgery and finished chemo I was 115 lbs. Still had enough fat for one breast. Two would have probably been a problem though. I hope to stay this weight. Will do my best.
Had my second visit from the occupational therapist today. I am extremely pleased how well that is going. I have so much more range of motion in my arm already. She thinks I'll be back to full or very close to it by next week. At just one day beyond three weeks, my stomach is barely bothering me at all any longer. When I move around a lot during the day, it gets a little tight. My arm and breast that had the mx and nodes removed, are still pretty numb. The ot told me that could take a long time to wear off and will never have all the feeling of my real breast. I'm kind of glad with this that I went with the UNI mx even though I am a little scared of recurrence in the other breast. Hopefully it will never come back and I will have made the correct decision. Also that hardness that I had in my breast seems to be getting smaller and it seems to be feeling softer. On Monday, I have my first follow up with PS, have seen her nurses in between surgery and next Monday. Will see what she says. The only thing that I think is really kind of ugly is the missing nipple. Not only do I have one Barbie breast, but the very center where the nipple used ot be is a different shade of skin. I guess that is because of taking that skin from my abdomen. Hopefully, I'll get a nipple tattoo and that will look good. The scar on the abdomen is kind of ugly too, but everyone says it looks really good and will diminish as time passes.
Overall, now at 3 weeks, really have to say I feel almost normal. Was pretty sore the first day after doing the ot exercises, but last night, not as much.
I am with sohardbnme and gee I'm blanking on the other woman who used Dr. Wu, but I am really pleased with how everything has gone.
Betsy, glad to hear you're doing so well. Happy Libby, glad you're moving on to a different onc. I am definitely with you on that. It's great that he/she is knowledgable and good, but if she isn't going to treat you right and be interested in you, dump her. My DH is in the medical profession and I was really telling him, it must be kind of boring to be an onc. It seems like for the most part there are only a few treatments that they give out to patients. Especially, my onc, she only sees breast cancer patients. It is a teaching hospital, so there are quite a few trials going on. I guess doing those gets a little more different things into the mix. I know every time she would ask me about symptoms, she'd want to give me some kind of medicine for them. Mine weren't that bad that I'd want to take medicine for them, but I guess that is also where they get something else to do besides just assigning you to AC for 4 txs and taxol for 4 txs. It seems so boring to me. But I do love my onc, but I would never want to be one.
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Michelle...I live in NJ and went to NYC and saw Dr Allen who pioneered the surgery and did not care for his lack of perfection... said he could use my abs although I'd be very tight...and said no need for stage 2... just go to the gym for contouring... SO... even in Boston, make sure you LOVE your PS, and trust him... cause I would not have had enough fat in abs for 2 full breast (that match my old ones)... and for sure want stage 2.... so I did not use Allen... my local PS recommended a doctor in Baltimore, but thats 3 hour drive... so 3 hour drive vs 3 hour flight?? I chose NOLA.
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I'm 5'2", weigh 124, and I need a pair! I really don't care what size they are if I can get rid of these damn TEs and not have to have implants. My nipples are gone - will have to consider tattoos.
Kay - you are really tiny, you give me hope!!!
Michelle
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Michelle,
Orginally my ps said that doing the DIEP that my radiated side would be a lot smaller & flatter than the bc side & said that they could add an implant later.
As it turned out the bc is almost identical to the non-bc side. But I wonder where the implant would be. With the bc implants are usually behind the muscle & I wonder if with the DIEP if it would be between the muscle & the flap. Just wondering out loud.
I am so glad I did the DIEP. I am doing well but my radiated side is grummpy but slowly getting better. The non-bc side looks awesome! I'd do it again in a heart beat!!! NJ
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Hi Michelle...My PS wouldn't do DIEP until the radiation was completed and healed for 6 months.
Just wanted to let y'all know that I had the ultrasound on Tuesday and got the results today, as expected normal results, even thought I kinda knew it would have to be, I've been worrying all weekend about it, so I'm happy to report that it was just fat that they saw on the ultrasound....whew...bit sigh of relief
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