DIEP Flap Reconstruction 2016
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Mel, someone had posted an article about a clinical trial using red dye on cancer. It was interesting, but early in the research. The thread went slightly off topic, as these threads often do. Someone named "NickSanta" started posting. First, he posted that he was surprised that the research wasn't being discussed more and that he was disappointed that the thread went off topic. Then he kept pushing the trial, posting information and was very aggressive, even rude. Another user did some research and found that he was an investor in the company doing the research! I went off on him. Unbelievable! This is supposed to be a safe place for us. There are so many aholes out there.
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Thank you, DizzParkMom. I can't believe it's tomorrow. I was so eager for it to hurry up and get here and now i'm kinda in shock that i'm having such a big surgery tomorrow. You guys all seem so prepared and informed before your surgeries where i feel like i'm just flying by the seat of my pants. Just going into it trusting my surgeon and hoping for a great outcome. I feel at peace with that, i mean, i'm not freaking out or anything. I just don't feel as in control of all of this as it sounds like you all are. You are all very strong women!!
My surgery is scheduled for 7:00am. I have to be at the hospital at 5:00am and it's an hour away. Ugh. Early damn morning for us!! I guess i shouldn't complain since a lot of you have had to FLY to your surgeries, huh? I can't think of any questions right now, but if i come up with any before tomorrow, i will definitely get back on here and ask.
Thank you all for the info you have all given me so far
Jenn
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I just found out that my surgery has been postponed (Dr. away) to end of April. This time at least I have a pre-op booked for 10 days prior. Still, it's driving me crazy this waiting and I can't do anything about it. Very frustrating. I need to get away somewhere warm and sunny.
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Gratefully: I feel for you. It is horrible when you get psyched up for a surgery date and then the rug is pulled out from underneath you.
My Feb 11 DIEP turned into another lumpectomy, in a last ditch attempt to clear the margins, because my BS and PS could not get their schedules to mesh until March 24
Sending healing vibes to everyone. Hugs
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Post op day 34 and I'm finally drain-free!
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YAY ducky179!!!! 👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻
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Sportysister, I was curious as to how long your drains stayed in with the seroma. I have one under my arm and am going on 6 wks.
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When I had the mx the last drain was in 5 weeks and 5 days. It was torture
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Hi all - I've been off the site since I last wrote about a week and a half ago (several different appointments to get drains out and with my physical therapist, not to mention different family in and out). I definitely still have a bunch of numbness, but my physical therapist (who treats holistically) has been working on blood flow and a variety of other issues - such as hypersensitive skin. I am hoping that the numbness will go away still, but I do think it's slightly more preferable than the hypersensitive skin.
Anyway, just learned the other day that a total of 10 more nodes were taken during my surgery. Unfortunately, 8 of those 10 nodes were positive. When my surgeon called to tell me about my after surgery pathology report, he was sort of trying to get me to understand the significance of this, but I just didn't have a brain ready to deal with it. Then while I was reading a book on chemo the other day, the significance smacked me in the head and I wrote my surgeon for confirmation. Today I spoke with him and he confirmed that the pathology report (and having 11 total positive nodes to include the 3 positive with the SNB) changes my staging and I'm now considered Stage IIIC.
I'm now having all sorts of emotions. While my children are adults, I've no idea if I should share this with them. Knowing this higher staging scares the hell out of me - not sure I want to put them through it. They do know about the additional positive nodes, but not sure if either truly understands the significance. I'm not sure I do or if I'm letting that level just needlessly scare me. I mean they were already planning for me to do chemo and radiation. I've done lots of research and am totally on board with the radiation (even though I'm truly concerned since the worst of everything is on my left side where my heart is) and with the staging in mind the chemo sort of seems like a no-brainer EXCEPT my Ki-67 scores are 5-10%, so the cancer divides really slow in comparison to the cancer chemo best attacks/helps. So, I guess I'll continue my research and catch up on things on the different forums in hopes of continue enlightenment until my next appointment with the MO.
From the little bit I've read so far to catch up with things - looks like a lot has happened. While it sucks to be here - it is wonderful how open everyone is about their experiences. I've learned so much from everyone. Continued healing!!
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Hi all... new to this website and group. Question... has anyone been 4 months post op and had to have a drain put back in? I had my surgery Nov. 4th. It took my drains a long time to come out. The last one actually fell out and was still over the 30cc mark. But they decided to not put a drain back in and see what happened. I developed a seroma in the middle of by abdomen and had to have it drained 3 times. Then started chemo. It seemed to be under control while I was doing chemo. I am done with chemo now, but am retaining a lot of fluid and now seem to have developed the seroma again and it seems to be worse. Has anyone else had this happen? I have a follow up with my PS on Thursday. I wonder if they are going to want to put a drain back in.
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PiNKiDC51 A lot of the information they give us is overwhelming. I don't even know what stage I am/was (still don't understand that part) I was afraid if I knew I would be more depressed. My children are grown also and I did tell them everything. My oldest daughter said it helped her to know and understand better. As far as the left side and your heart, my radiation is going to be on my left side also. I asked the radiologist and she said it isn't something to worry about that they can do a shield. Not to add anything for you to worry about but she also told me that I would get the radiation all the way up to my throat and my thyroid could be effected later on. You might ask about this. I know some Dr.s give out different information. Praying for you
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Dear cparis16,
Welcome to the community. We are glad that you reached out here but sorry about the many complications that you have been having. We hope that you will receive support and information here from others who have similar stories. Keep us posted. The Mods
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Hi Guys new to the forum. Don't have a date for my diep flap surgery but was told maybe may/june. Wondering what kind of tests I can expect to have before this is all started. I go for CT Mesenteric Angio on Thursday of this week. Just wondering if that will be it or can I expect more test to come. Ive already seen my hematologist, and know I will have to be on blood thinners. Thanks for sharing.
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cparis16, when I first had mx, my last drain was in about a month. They took it out and I developed a seroma within 2 days. Dr put the drain back in and after about 10 days my numbers we low enough that it came out. The drains are the worst part and I keep reminding myself they are there for a reason. Hang in there!
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I'm sorry everyone has had their drains in so long! After bmx, I had one in 3 weeks and it drove me nuts. For DIEP I had three out after one week and the fourth came out after two weeks.
Pink- I'm sure you are completely freaked out. I wasn't able to process what stage I was until I had started chemo. When I was ready I checked with Dr. Google on my stage then confirmed it with my MO. He really didn't seem to want to focus on staging. I have heard that staging is a little bit antiquated too, I think because there so many factors outside of tumor size, node involvement and mets. Do you think it would be better for you if you took a break from researching? Let yourself digest it all before you dig into it any more. Every time you want to search dr. Google, come to this thread instead!
Taag- the only thing I had was a CT scan to check to see if I was a good DIEP candidate. Pre-op I had to have blood taken to type it in case I needed a transfusion during surgery.
CParis, you might want to start another thread or check DIEP 2015. The majority of us on here had surgery this year, or will have it this year. I hope you get some helpful info.
A lot of stress at my house right now, and I'm not following instructions to a T but I'm not having complications so I'll take it. I feel really bloated all the time with this tightness!
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Frustrated - Thanks for that additional info about radiation. I had not heard that before about the thyroid. I definitely heard about potential problems with getting the heart and also how it can result in lymphedema, but nothing about thyroid, so I will put that on my "to ask" list when I get to that point. Also, I have been told that the 3D radiation of today is less of a threat to various organs like the heart than the straight back and forth cut-thru that was most likely used back in my grandmother's day. It's still hard not to worry, but I'm sort of resigned to radiation therapy. I've seen enough clinical studies to know that it would be foolish not to have radiation treatment.
Jlstacey - Dr. Google is not really the issue. I google very, very little cause I don't want the mis-information. I usually get my info from this site, the forums on this site, actual clinical studies that I've asked for and my doctors have provided to me, and various reputable books recommended by doctors or even women, such as BigSister on this forum. So, I don't think the research is so much the problem, but the issue is more that with regards to chemo, I sort of had a disconnect. I didn't seem to grasp the true relevance of positive nodes and what that in itself means with regards to BC treatments. I'm not usually slow on the uptake and this disconnect on my part is what I'm now trying to come to terms with now that I've truly made the connection.
The disconnect has in part had my mind trying to figure out the true difference between chemo and hormone therapy, which uses chemo drugs. These two treatments are vastly different with vastly different side effects, but in my mind they are both types of chemo and I was trying to sort out why do both when the latter is less destructive on the body. Other than to give two whammy's instead of one, it just seemed bizarre to me to agree to the riskier chemo when there was/is the hormone therapy option ~ especially when I'd been told that all my markers were good and my cancer was a truly slow growing cancer. Now that I've connected I'm sort of struggling with chemo is not so much an option, but a must because even though my cancer is slow dividing it has gone to the nodes, which makes it that much more dangerous (and thus a double whammy is much more prudent vs. an option). I guess even though I've made surgical decisions and be dealing with the diagnosis to a certain extent, I guess my mind has still sort of been in denial mode still. I can't see any other reason that I had such a huge disconnect and now I'm just trying to readjust.
All - I have to agree - drains absolutely suck!!! You can take meds, modify things so a rougher bra is not scratching you (I didn't want to deal with taking one of my husband t-shirts on an off when I was having trouble, so I cut up one of my husband's t-shirts and made a bra insert), but those drains . . .I hated how the bra seemed to put pressure on it and no matter what I did, I couldn't seem to resolve that. And mov't with them truly sucked. I was soooo glad to get mine out!! Wishing everyone well. Nite.
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Hi everyone. 3 weeks post op tomorrow. Had my 2 left drains out on the day i left the hospital. Had my 2 right drains out 3 days after i was home. I have been feeling pretty good but am also having a good cry every night. My mobility is coming along. I can get my leg on and shuffle around the apartment. We have been outside walking up and down the sidewalk for 30 mins the last 2 days.
Both boobs have random oozing which makes me worry. No blood though. My abdominal incision has some "slough" as the nurse called it which also makes me worry.
We get pathology tomorrow and also see plastic surgeon. Have a list of questions about how active i should be but mostly about my oozing incisions and my healing. Will ask them to clean up my incisions too.
As an above knee amputee with rheumatoid arthritis my toughest ordeal is losing my mobility and independence. Every day is a tiny bit better. I was off the forum for awhile just trying to focus on me. I keep reading though.
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Tanya - U certainly do rock! It is very encouraging to hear how well you are progressing. I'm keeping my fingers crossed that your path report is good news, and that you worry "warts" are easily fixed. Hugs
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Tanya - I agree with Stellmaris, U certainly do rock!!! You are inspirational! I hope all goes well with your appointment tomorrow - you're in my prayers.
I see my surgeon tomorrow for post-op and determination about work. Hoping to get released to do work from home this next week. I do not feel anywhere close enough to having range of motion with my left arm to drive (and still on some nerve meds they gave me), but I would like to be able to start to get back to some normalcy before facing the chemo phase of things (slowly coming to terms with that). Again, Tanya - best wishes and thanks for your post. Reading posts like yours in this forum does truly help with trying to keep things in perspective.
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Tanya
You are amazing!!! Getting around at 3 weeks is tough and your doing it!!! Please keep us posted on the pathology. Your in my prayers.
Hugs
G
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Does anyone on this thread know someone who has had an SGAP? I am having one next month. I am hitching a ride on this thread since it is the closest I can find. Just curious about the recovery with two sides of my body being operated on. Thanks!!
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Hi Tanya hope you get your questions answered today by Dr. Zhang and she can put u more at ease. this is a tough process and u certainly feel blue at times. if u feel u need more support in your home tell Zhang and the nurse co ordinator of your concerns. I'm thinking of you sweet girl
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Barb sorry surgery delayed again! I tried to call u this am nut number did not work. My sister is taking me out for lunch so call me tomorrow Lois
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Hello Ladies, I hope everyone is doing well! Tomorrow is 3 weeks since my diep and I have a visit with ps. I'm kind of bummed because I know he's not going to remove that last drain. But on a happy note, I feel more like my old self everyday! Starting to get my energy back and can't wait to be a little further down this road
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Just want to say thank you to all that share. Waiting and wondering just exactly how I will feel after the Diep flap surgery, and this forum has really given me some insight. Was really wondering if I was doing the right thing by having it done because I feel I am just fine the way I am... missing a breast. BUT I am really looking forward to not having to wear the big (d-cup) protheses that is hot heavy and aggravates my lymphedema. All surgery is a major deal and I feel a lot better going into this one.
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taag4: when is your surgery? Keeping you in my thoughts
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Does anyone else have more pain after eating a larger meal? I've been eating small amounts of food, but today I had almost s full hamburger and some fries. It's a really good burger place so I indulged. I feel like the tight abdomen causes pain when I eat sometimes. This is the second time this has happened.
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taag4, I'm glad you're feeling less worried about the surgery. Reading everyone's experiences on here is what helped prepare me and made me feel like I could get through it. Knowing all the recovery steps after surgery gives you strength to get through it one day at a time. Once you are out of the hospital, the drains and the hunched over/tight feeling are the worst parts. Once you lose the drains and get more 'stretchy' the worst is all behind you. Best Wishes on a speedy recovery.
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jlstacey.....i have cut down on portion size bc i get bloated like that depending on what i eat. Nothing to worry about. Happy eating.
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Shower question......how soon after diep did you face the front of the shower instead of having your back to the shower head
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