DIEP 2014
Comments
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Teacher- you have been a bright beacon to those of us who had not thought of or done PT, and you are doing great with it but I am sorry to hear that dang cording is rearing it's ugly head. I was shocked my first session of PT how much range of motion I had lost in my shoulders and actually core strength I did not have, even with a flat belly 4 months post DIEP.
Hohoma- they removed the nipples and areola with me. I do not have sensation most parts of my chest area. I do not have regrets, other than I regret I had to get cancer
If you are going to get cancer you have to make work whatever your decision is to have the best possible things that matter most to you happen. For those who do not believe in a higher power/God please overlook this statement, but I personally believe that God has it all figured out and does what He will do. So my point is that if you value the nipple sensation part of things, then find a nipple sparing surgery that works for you. There are people who had DIEP that get nipple reconstruction with skin from other areas with sensation, some get an origami type of adjustment to their "crop circles", some do tattoos only that look 3-D except or the side projection part being absent, and some just leave things alone after stage 1. Lovemyboys- if you have read the thread here, it takes a while to get through but a few pages back people answered a bunch of questions about DIEP. For me the choice was flat or DIEP due to not wanting migrating man made material in my body that had to be replaced in the future, also had friends say it was uncomfortable and that they encapsulated which was a pain. That being said, some people are thrilled with their implants, there is a soft gel type of one that one friend has and she loves the way hers turned out.
Good to hear you are making progress Optimi!
Lemon I hope you are doing better and that redness goes away!
Pzercher did you actually get your new date? I missed that somehow.
Viv glad you have seen some progress and things to rejoice! Little things like having sensation are silver linings.
Jmb how is your friend's daughter?
Goldie are you doing ok today?? I hope you have a great day
Well my menopausal mind can't remember other stuff just know I appreciate all of you and hope you are doing well. Went to walk at gardens near us yesterday and loved this flower Hugs!
Cindy
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hi all.
Well, today is day 7 of recovery. It's not been too bad. I have a few things I'm having issues with, but all in all, I'm really good. I hope to get breast drains out today or tomorrow and hip drains will be a bit longer. I'm not taking anything for pain but Tylenol ... Mobility is limited and I get tired really quick( just showering)...I hate sleeping on my back, so I'm struggling with that. One issue I'm having is my left side is a lot bigger than my right side. Some pain with it but it's mostly drain related. I've read many of the stories on here and from the experiences I've read, I'm having it relatively good! I feel like of like Frankenstein with all the incisions glue and sutures. I believe I'm going to have have at least one revision, but hoping most of what I see and feel is swelling and that goes away. Hope everyone is doing well. Check back soon.
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enjoyevrymoment - just finished walking and will have a training session this afternoon. I called my coach and he said today we will work on allowing the cord to stretch smoothly. He got me through the first time, so I know he will again. So many wonderful people have been placed in my life on this journey.
LoveAllMyBoys - I have a friend who is just as thrilled with her gel implants as I am with my DIEP. She couldn't do DIEP because of lack of fat while I couldn't do implants for other health issues.
Hohoma - that same friend was able to save half of her nipple and part of it grew back! She even has feeling in it.
I hope everyone has a wonderful week. It hit 100 here yesterday and our AC went out Saturday. I plan to be out during the day... anywhere with cool air til ours can be replaced Thursday!!
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jjlg1067- So glad you updated us! Seven days out means you probably still have a lot of swelling. I had one side swell more and drain more than the other. It is great that you are down to tylenol for pain. As for sleeping on your back...UGH! I am two months out and still can not sleep on my back. I have pillows propping me up all around but just can not seem to get comfortable. I manage a few hours here and there at night but it is not a restful sleep. Remember to take it easy and to allow your insides to heal as well. All together now: "just because you can, doesn't mean you should!" Take care and continue to heal!
Ally
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Hi All,
Sorry, I know I have been absent. It's because my head it just not in the game the last few days. I am tired. I am tired of forcing myself to move, tired of eating right, tired of talking about it, etc. Does that make sense? When my SIL called the other night she asked how I was doing, and my husband started to answer her, and I just cut him off. Enough already!!!! Besides, she is Lily's grandma, and they have enough on their plates. Maybe I need something for the grochies!!!! LOL. Because, that is what I have lately.
JLG, sounds like you are doing great~~~back sleeping is a drag, but in a month, or so you will notice less wrinkles. The only positive to back sleeping that I have found.
I found a sundress a Kohl's that I can wear without a bra and it hides that my foobs are different shapes and sizes right now. It is definately a "Kohl's" dress, but it is comfortable, and it comes in three other colors. It's an Apt 9 and comes in small, med, large, etc. I am attaching a pic.
I have my first full PT session later this afternoon. Hoping to get my tummy stretched out a bit.
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I am envious that you all seem so sure of your decision to have this surgery. I am definately leaning towards the deip flap, I just hate the idea of having more surgery and feeling so not myself, but you all seem to be doing so well. Have any of you had your surgery done at Mayo? Also, have any of you had radiation before the surgery. That seems to be where I am having the worst problem, also that is the reason they don't want me to have implants. I was done with my radiation in February, so at least my sking will be well recovered by the time I have it.
Lovemyboys: You seem to be in the same place that I am.
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goldie4040- You are certainly entitled to not be 100%...it is hard to be doing all the "right" things when you just feel wrong. That might not make any sense but I think I get what you are expressing. Anyway, you look fabulous! Love, love, love the dress!! Hope you feel great in it!! PT should definitely help...it is sort of sore when doing the exercises but SO much better later.
Hugs to you!
Ally
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Thanks Ally. My physical therapist told me the first few sessions were just going to be massage.....ahhh! She told I was doing pretty well on the stretches at home, although she said one side was looser than the other. It amazes me how they can just lay their hands on you and tell what's going on. The only up thing that has been said to me in a while was by her. She said, "well, you have very nice healthy springy ribs." Who knew...lol. I asked how she could tell, and she went into detail I won't bore you with.
Annie, a lot of women chose diep after having rads because their skin has a very difficult time accommodating the implants. There are many women on here who had their implants removed after rads because of the skin tightening, and discomfort. It's a real concern. Mayo is a wonderful place, and I don't think that should be one of your concerns. Weigh the pros and cons. In the end, only you can be the one that is sure of the choice.
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Annie- I choose DIEP because I had my right breast radiated, and my PS recommended it due to this reason plus I had a "Buddha belly". I will be 4 weeks out tomorrow, and in spite of this huge surgery - I have NO regrets. I am suffering from 1 issue as it relates to the radiated breast. It is necrosis on right. It is dead skin, which I think it means I will need some grafting. Other than that my breasts are beautiful and tummy is flat. I had Dr. Halvorson from Brigham and Women's in Boston. I am meeting with him on Friday to discuss.
My advice is listen to advice of Doctors who specialize in this type of surgery and listen to your gut.
Then, make the decision which works for you.
Lisa
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P.S.- Goldie this does suck....so we all understand when one of us has a bad day or week! It is ok to just vent....we will all listen!
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So, I guess sleeping 18 hours a day is no longer gonna work for me... I am back at work and maybe, just maybe, that is just what the doctor ordered. I am still very tired and sore, but I am not sure that 'down' feeling was from the surgery or from all the laying around.I made it 6 hours in the office today which is pretty good I think,... gonna head home and crawl under the ceiling fan and the covers. Woo-hoo
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One thing that has surprised me throughout this process is how my decision-making evolved. So many people tell you, "if it were me, I would do x, y, z" and I want to say, "That's what you think now!" Three months passed for me between diagnosis and mastectomy, and I had lots of time to read, research, and talk with sister survivors. And nothing really prepares you for the reality of the sensations that follow mastectomy. Immediate reconstruction was not an option locally, so again I have had an eight-month wait post-mastectomy. What I discovered about myself was how much I abhor the tissue expanders and the feeling of anything artificial. If my flap fails, I am not sure at all that I will try something else. (But again, how can you really anticipate how you will feel?) I also felt really strongly that I did not want to sacrifice the healthy breast. Also not certain whether I want nipple reconstruction. So I think it is highly individual and depends on your own experience of your body. I am definitely ready to get on with it; I have found it hard to "move on" with life until this is out of the way.
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Goldie, you look great! I love the dress and it looks very comfortable. I may have to make a trip to Kolh's!
Annie, when I first was diagnosed, I wanted a diep reconstruction, but was told I was too thin. I lost a lot of weight after my diagnosis, but since then have out on plenty! I had rads on my right side, followed by implants. I got capsular contracture, and had the right side swapped out for a smaller implant and the scar tissue removed. Well, I still have a lot of discomfort from the radiation damage, so now we're going to try the diep. I have to admit, the surgery is a very scary thought for me, but I just can't take the implant anymore.
Do your research and listen to your heart. I wish you the best as you make your decision.
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Pzercher - everyone hates the TEs. I told my PS he could frisbee them across the parking lot. I shared before my grandgirls' reaction. Five year old twins had been told to be careful with nana after my DIEP. Sitting next to me reading, one said, "Nana, your boobies are soft again." She then screamed across the house to her sister about this and she came running in to tell me that their mommy had told them that someday they would grow boobies. She said, "I sure hope we get the soft kind!" I assured them that I thought they would get the soft kind. The fact that they noticed the "soft" thrilled me. DIEP made the difference for me.
Today my workout with my trainer was a workout for him, not me. He spent the session massaging my neck, shoulder, and arm. Cording was better and I was able to raise both arms again without pain. He told me that we will most likely go through this again and not to think of it as a setback. It's just part of the process of recovery. I don't like it but feel better about working through it again.
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Goldie you look fabulous! I LOVE your dress! You are not weird at all for how you feel, not only cuz we are allowed to feel what we feel no matter what but also because I found out that it is not rare at all for people to have delayed coping and or venting. I thought I was doing great but now that all the worst part is over I had a meltdown this weekend and was very irritable at the end of last week. It is almost kind of a PTSD.
Teacher, glad you got the wonderful massage from the PT. I like my PT too he has a good sense of humor. Amazing how many muscles are getting used that I have not used and he even has me on the treadmill to warm up and I actually "ran" for 8 minutes without cardiac arrest. The treadmill there is really nice and made it easy.
Well off to get more steps in....
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Hohoma, remember that when you lose a nipple, you lose that part of your sexuality. Nothing can replace the sensation of your own real nipple. Maybe that's not important to you but I just had to mention it. For me it meant holding on to something that was still my own. They couldn't spare my right one but I still have part of the left. -Elizabeth
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Annie,
Mine was done at Mayo in Minnesota. My surgeon was LeMaine. There are a couple of others here who had Saint-Cyr.
If you have any questions please ask.
Mine was supposed to be Skin and Nipple sparing. At pre-op I was told that they would be inserting a fair sized piece of skin on my rads side (left). In surgery they weren't able to save that nipple either. PS. Rads were almost 6 years earlier and still caused problems. Rads side had healing trouble and the drain was in 29 days. Lost some of the diep fat on that side and it is about 40% smaller than right side. Will be evened out at stage 2.
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Thanks guys. It makes me feel better to know that it's not weird to get down sometimes. Even though I knew that, hearing it from other's makes me feel better. Physical therapy was pretty good. I am amazed at what an experienced PT can feel about your body when they lay hands on you. She could feel my tightness. Releasing it will be the trick.
The nipple conversation: does anybody keep the sensation in their nipples with a nipple sparing bmx?
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Hi
I am way behind, got busy. I have both of my nipples and at this point I don't feel them at all. I don't feel my breasts at all, I keep saying if one catches fire someone better tell me. But my PS said within a year I will know. Mine were removed and scrapped so I just have to be patient. I would rather be alive and healthy than have sensation, although it does change things in the bedroom... I am also lopsided, my left that I hated I know like and the right (radiated) that I liked I now hate, so its true they change as the weeks pass. My nipples look good and look like me, that makes me feel better. I also know we are a work in progress. My swelling is awful even my back is swollen and numb, I have had my moments or days of feeling down too. Bottom line, no regrets at all and I am cancer free, that is the blessing. I love your dress Goldie, I went shopping on Sunday and got 2 dresses and 2 Claiborne pencil skirts! And a size smaller than I was!! I tried on a lot of tops and anything solid in color showed my unevenness which was depressing. I did buy a polka dot blouse that hides well. I guess we are on the same wave length. You look beautiful already Goldie! I have a work event in Chicago, 2 weeks there so I am planning ahead with a new wardrobe.
Hope all are good and healing well. Welcome to the newbies on the thread.
XO
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Lemon, you are right. Patterns are our friend right now, and any kind of shirring, pleating, gathering, etc. I live in such a hot climate, and you try to get away with wearing as little as possible while still looking age appropriate, and figure appropriate. Not, that "we" all do that. I think they take all the pictures of the "Walmart" people in Texas....lol. But, they are not just in Walmart.
I am so sorry about your swelling issues. Has your surgeon given you an insight into what might be going on? Have you thought about PT? I started today. She did some interesting things, and I am not sure if I feel better yet, but she said I might be sore tomorrow. I used a machine I never used before (for a warm up before the massage). It was a recumbent elliptical. Really cool. While I was on it I was watching a guy on one of those balance balls. It is flat on the top and round on the bottom, and you have to keep your balance while you do other stuff, like squats. I wanted to try that so badly. I could spend all day at PT if they let me. Once my tummy heals I am going to ask if I can use the huge indoor pool they have there.
You are going to look so classy and gorgeous at your meetings in Chicago. Post a pic if you think of it.
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hey Goldie you look great! Dress looks comfy too. Hope you are feeling better....those down irritating days are reasonable I think. Just hopefully not too often.
Annib4 radiation before DIEP makes sense to me b/c the radiation will change the tissue and I didn't want it to possibly ruin my new foobs. Turns out I got a lot of radiation fibrosis which was mostly cut out int he DIEP procedure and I am SO much more comfortable. Also it is easier for the rad onc to deliver effective treatment to a flat chest. Whatever you choose to do there is no hurry and don't rush into anything. One day you will just know what is right. Really.
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Ally, haha, your comment "just because we can..." Made me laugh and thanks for the reminder! I need that one!
I'm off to the doc today for 1st appt since surgery, expect to get 2 of my 4 drains out... That will help with the " woe is me" syndrome I'm currently experiencing...
It still amazes me how tired I get showering!
I did cook yesterday(took me 3 hours to make meatloaf, instant mashed potatoes and deviled eggs), but I did it, then let somebody else clean up...
Spent time with the new grandbaby(born July 4th).. Still can't hold hold her(she weighs almost 7 lbs) and doc says nothing over 5, but she likes the little bumpy on my lap so it's just awesome, which is the best part of my recovery(spending time with her) hubby and son works out of town, so DIL and Mia are staying with me, while we recover.
The stories and experiences are very helpful to read and hope everyone continues to do well in their recoveries. To the newbies: read and ask questions... This site is extremely helpful!
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jlg1067- Hope your appt goes well today! It is a great feeling to get those drains removed, especially the last one. Each day you will feel better and better but it is a journey.
Congrats on the new grandbaby!!
Ally
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Goldie - Wow - that dress looks like it's made for you. You look fabulous. But what's with the brown hair? For some reason I thought you would have locks of gold. Either way, you look wonderful.
Don't be hard on yourself if you have bad days - it's all hills and valleys for a while - and someday the valley's become less deep and painful, and eventually the hills are higher. But as enjoyeverymoment pointed out, delayed reactions are a very real thing and meltdowns can occur after sailing through treatment, and braving it through recovery. Then the inner warrior disappears and all hell breaks loose, (which is what happened in my case).
Comparisons to PTSD make a lot of sense, and we shouldn't underestimate what we've been through, and how long it takes to absorb and adapt. I think you're doing great.
And for the newbies - please don't get discouraged. Exactly as Lemon said, I have my down days but no regrets at all.
Janet
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You guys are absolutley wonderful. I am getting so much information from you and it is first hand so I know I am getting the most honest answers. I loved the idea of throwing the dang extenders out into the parking lot. That made me laugh. I told my dr I was going to take them out myself, I am so sick of them. Evidently they frown on that. Also, it makes me feel better knowing we have have our down days. I was not having a good week last week and my boss asked if I was OK and I told him I had alot on my mind. He told me the worst was over and I should not feel that way..I almost stapled his nuts to my desk!! Oh well..I need my job...I am also having Dr Lemaine at Mayo do my surgery. I really like her, and she definately has my respect. I just want it to be over and waiting till January sucks. I have a question, do you all go to PT after this? I am surprised to hear that.
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Annie, I went to an occupational therapist for range of motion in my arm- but I wonder, since you already had a mastectomy and SLNB would you need it, since you've healed already? I do believe some go for the tummy work, but not everyone. I never did understand what cause the limited ROM- was it the SLNB or the mastectomy? or both? In any case all is well now. I still have some stiffness in the mornings and evenings but don't give it much thought otherwise.
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I just started PT Annajo and it has made a huge difference in my range of motion. Pain in the butt to go 645 before work but is making me have better posture and strength.
Saw onc today. Ca 15-3 marker is down to 8, and CEA is 1.4 so that is good news. Such a weird disease, you are almost afraid to be too happy about good news. Silly aren't I ..... Onc did not feel I had to do Biphos for osteopenia given I am doing weight bearing exercise 4 miles a day and taking Vit D and Calcium and level is up on the D. I am glad since I did not want any thing else to give me side effects, Femara is enough, and of course please know I realize how very truly blessed I am to have just that.
I have gained weight since I saw him and I am on the warpath to lose it. That was depressing but I just am going to reduce my calories more and keep working on it.
Have a great day ladies! Hugs to all of you (gently of course
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Annieb4 - I was having lunch with a friend and someone I used to work with(I'm retired now) came up and said I looked good, "that having a little cancer was becoming to me!!!" The friend I was with knows me and jumped in started talking about her daughter while I left the table before I could say what I felt. A little bit of cancer my rear!!!
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annajo: What is SLNB? I am not quite up on all these abbreviations. I am assuming it has to do with my lymph nodes. Anyway, I think most of my range of motion problems has to do with my radiation. It is real tight and they gave me a boost right up under my armpit. My PT just gave me exercises and told me to stretch.
It sounds like most of you are going to PT for your belly area. Yea...one more appointment to make !!!
and Teacher...yes some people can be so insensitive. It is like when someone passes away that is close to you, and eventually everyone goes on with thier life and there you are, left trying to keep yourself from falling apart.
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Hello all. There's so much information it's overwhelming. I was dx with bc Mar 2014. Had BMX Apr 23. Finding DCIS, ILC, IDC 7/22 nodes positive on right side/ DCIS left side. Doing 8 rounds of chemo and 28 rads.
My PS has done some diep but not many so I am researching and shopping. I am not scheduled yet. I have some questions that I hope someone can answer.
1. Recovery. How is theabdominal pain? How long time you're able to move around the house? How long till back to work?
2. How long was hospital stay?
3. How many surgeries on average for everything?
4. Does the tummy tuck also flatten your abdomen above the waist?
I realize everyone is different and will have different experiences but I just want an idea. Many thanks.
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