NOLA in September?
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Vinnie- I had emailed you about an artist in Chicago but do you do other tattoos as well as nips? Maybe my foobs could be your canvas in 2012? (c:
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Or...how about tummy tuck scar tattoos? I have been looking at a lot of photos online and I think I would like to do it. The scar is so HUGE. A nice little vine or something that curves right along the scar, making it more art than scar (scart???) would be great and having it done at the center would make me feel so secure, though I am guessing that would not be insurance-covered like nipples! Still, I want one. Does anyone know how long to wait? A year? Never thought I would show my stomach in public again and I wouldn't want to flash anyone this scar but if it was a cool tattoo....even just for private, how sexy is that? Not a word I thought could ever be associated with this set of abs but after we go through all this, why not get it the best we can?
Also, about plication....I think I had that done. I asked right before surgery about sewing the muscles together and he said ok. Not sure I would know the difference, though maybe like springtime, I will notice later? I am very tight in the ab area but it sounds like everyone is post-SIEA/DIEP surgery.0 -
Scart!
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I had my ovaries out in Feb but dr Stolier thinks since I'm 41 I should so some hormones so I'm gonna have a hysterectomy w dr Von Almen at secod stage.
Also, I'm sure other people know this. But I started to get that weird tingling feeling in my chest that feels like after you have a sunburn. And touching it even w my clothes gives me chills. Soo irritating. I went to a physical therpist who knows a lot about mastectomy. And she said it's my nerves coming back and I should lightly massage it to desensitize it. And it really helps. When I called nola Laura told me to take ibuprofen which did nothing. And this simple solution really helps. Also she said when massaging your scar to go perpendicular to the scar not w it. I am not at that point yet but I thot I'd pass that on.0 -
Adey... I can do whatever you want...V
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Hi ladies. The sun shining, the birds are singing - yes, that's right, got my last drain out today!! It was really driving me crazy, with the skin being very irritated (though not infected) and causing pain, and the output running along the same for weeks. It finally lightened up a bit and slowed a little, so ouit it went. I am lucky to have a friend who is a doctor who pulled it for me but it didn't hurt at all and I am sure I could have done it if I were less of a wuss. Today makes five weeks post-op for my hip flap.
A question re Stage 2. I am getting the impression that Stage 2 can be a pretty big deal and have a high rate of complications. I think a lot of posters here had post Stage 2 difficulties. I am asking bc if it is a big ordeal, I think I will wait till next year. I would love to hear feedback from anyone who has had their Stage 2, especially comparing it to Stage 1 in terms of pain, recovery time, and any complications like infection, swelling, thrush, etc. Thanks in advance for helping me with this decision.0 -
Yay Sonya!
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Sonya - Good for you!
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Running, Stage 2 can be as big or little as you like. I had a huge stage 2 (somebody here called it the caddilac version!) and it was still a million times easier than stage 1. Just my 2 cents.
TooMuch - thinking of you!
Question - Does anybody here have Anthem Blue Cross / Blue Shield? My insurance is moving from CIGNA to this BC/BS thing. Cinga was in network at the center. How was your out of pocket with Anthem? I am done, so just wondering.... Any info appreciated...
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Hi Running, I think there are two ways that Stage 2 can be a big deal or not. One certainly has to do with "how much" stuff you have done. This translates to length of surgery, new incisions from fat excision, revision of old incisions, extent of lipo, etc. These will all bear on your post-op -- drains and drain care, wound care and dressings, pain, swelling. The other way, I think, is less predictable...and not necessarily a direct correlation to "how much" is done. Fatigue, sleep disturbance, degree of discomfort from pain and swelling --- These seem, from these boards, to be very variable. One would think it might have to do with how well recuperated you are from Stage 1, but I don't notice that here.
Why I got thrush from this round of 3 antibiotics, but not last time...don't know. I do think that I headed back to work too soon, and that has made me kind of miserable. Resting up is not my forte, but I pay for it every time. I think that one gets weary of all that is involved in daily care -- the compression garments, nipple care, dressings, etc, and it is hard to start that all over again. BUT, light at the end of the tunnel... we are all moving toward the finish line, and the final outcome is very exciting!!!0 -
So... My plan is to have surgery Monday Nov 14 and potentially go back to work for two days one week later and then full time two weeks post surgery... and when I go back full time, its the busy time at work, so long full days... I sure hope it is doable... And since I had hip and DIEP and both breasts need a lot of work, I think I will be worked over.
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@Running -- I AM SO JEALOUS!!! I am almost exactly at the 8 wk mark and still juicy as ever!! ARGH!! I am sure the sun will be shining and the birds singing for me if I ever get my last drain out!!! Perhaps the earth will move and the angels sing! LOL!
@Spring -- I have BC/BS and I only paid my out of pocket for the year. The Center and SCSH are not in plan providers, so the check was sent to me and I forwarded it endorsed to the hospital. NICE check, but so big I didn''t wait for their FedEx # -- shipped it off myself before I was tempted to head for Mexico! LOL! Vicki is a real champ at this and you should send your info to her!
I guess I want quite a bit done (balancing, shaping and lipo) but I had a hip flap, so it is butt lift and fill time and I don't have ab scars that need fixing, Wonder if I should start a conversation with Dr.D. to see what he wants to do before I start on my "wish list"! I also agree, it may be a big surgery again, but it is mostly all over but the shouting after that, so I am keeping my eye on the eventual goal, managing the discomfort and medical daily "chores" (not without grumbling, but with the help of this list!). Trying to be patient to be whole ... and patience is NOT my strong suit!
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I was wondering what other peoples' experience is w dr Von almen
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Today marked 3 weeks fom my stage 2 and after 24/7 nipple guards, I took them off as instructed. I wore a bra that was not tight in the cup and even made a little gauze pad with a hole cut out to put over the nipple to keep pressure off. Well, I got home tonight and one side already looks squished! EEK. How did this happen so fast? Is this just how it goes? Do I just let them do their thing? I would love to hear what other women have done. It seems almost impossible to keep all pressure off of them - bra, cami, even just clothing. And at what point do you go ahead and just wear a bra that actually fits? And what about at night??? Poor babies, I just know they are going to get crushed when I roll onto my side....
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I hope I can get to d cup size! Ready for Nola !
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Hi Celtic. For my stage 2 I decided to keep my mouth shut (not easy for me, just ask my husband!), and see what Dr. S had in mind. He found every area that I was thinking about and then some! So my suggestion is see what the maestro says first! Good luck.
Rogam - hope you can get as much as you want!
PS - added a new photo of myself - it was taken the night before my stage 2, after Dr S marked me up. If you can't read the writing, it says "fat" on each breast. BTW, only about 50% the fat he marked to add in stuck!
We'll see if I get any more in Stage 2B.0 -
Semper I had a consult with Dr. Von almen when I was there for stage one. He was thorough and aware of BRCA needs. He went over several options with me and when he wanted to change the date of surgery for his convenience I hesitated and said that is my son's birthday and he said he would rearrange his schedule for me. I don't know which option I am going to do yet but feel comfortable with him either way. Dana had her surgery with him as well.
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Great Pic Kathryn!
Re: Stage 2's - I've had two breasts reconstructed, each at a different time. I think that with my first recon, having stage 2 at 3 months after stage 1 was just too soon for me. I wasn't recovered adequately, plus I had the plication. That added significantly to my recovery time from stage 2, also. (But I am one who is very, very happy with my results from that, and I've had no problems with discomfort there after fully recovering from my surgery.). With the second recon, I gave myself an extra month to recover before stage 2. I felt so much better going into it! I was even able to do a little running before the second stage and re-establish some stamina. I believe it made a huge difference in my recovery from that stage 2.
I know we're all anxious to get this recon business over with, plus we worry about getting it done in a year. But if you can, I say give yourself a break and don't feel like you have to have that stage 2 no more than 3 months out from stage 1. Also, yes, so much depends on how much you have done in the second stage. I guess we all have lipo, and that really does make you feel like you've been hit by a truck. But the horrible-looking bruises and associated pain really do subside very quickly. I agree with Springtime that stage 2 is no where near as bad as stage 1 - no matter how much you have done!
Rogam - You can have those girls any size you want!
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Jerusha,
What happened to your nips is just exactly what happened to me and many (if not all) of us. I'd say that 3 weeks is too soon to just go back to normal bras. And it's so easy to have gauze or whatever be displaced during the day and your nipple gets compressed. It's shocking when that happens! Like WTF?! But you'll find that it will pop back up after it has some freedom. My solution has been my Big Bra. I got a bra with a cup size one size bigger than I wear. It was an underwire, so I just took a pliers and pulled out the wire (since we're not supposed to wear those). So the cups have a lot of foam structure and forms a nice protective dome over the breasts, without touching the nipples. I came back home to having to wear heavy winter coats that totally pushed down on my nipples - forget little gauzy supporter things or even those weird plastic nipple protector things - they were pressed down! So the Big Bra has been my nipple-saver and has also been great after tattoos. The nips get to be free inside that protective dome with nothing that is going to press those babies down!
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Minnesota, thanks soooo much. These freaky little things seem to have a life of their own! At what point did you stop wearing the nipple guards and switch to Big Bra? And then how long did you wear Big Bra before letting anything press against you? What about at night? BTW, I am so appreciative of the help you've given me. You seem to be a night owl, also...and I'm really glad to find you here during my late night fretting
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Sonya: hurrah for being drainless!
Celtic: hang in there, your turn will be soon.
Minnesota: Would you say you recovered quicker after waiting 4 months for Stage II the second go around? I was hoping to be able to work out also before Stage II but Stage I will take longer than 6 weeks for my wounds to heal because i still have an area open right under the naval. I can't stay still and I am almost going crazy from sitting around and just walking. Hopefully this will heal in another two weeks.
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Surfagrl: have you seen someone about wound care? They can probably help get that open area healed in 2 weeks. They usually have all sorts of dressings and ointments regular docs have never heard of. I had 2 small open areas, one of them the bottom of the navel where it spit a stitch, and they healed in 2 weeks or less.
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popping in quick, on the road for work, didn't sleep a wink last night, stressed and crazed but wanted to get your feedback on this interview i did...they editted me heavily and left out my mention of this site as well as my mention of super-Marcia, but most of the rest of it is there. would love your feedback
http://blisstree.com/live/i-got-my-breasts-removed-at-35-even-though-i-didnt-have-breast-cancer-539/
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Jerusha,
For whatever this information is worth - here is my past experience the best that I can remember. It was a while ago so I can't remember some of the details. In my non-NOLA DIEP reconstruction, which was very problematic but the reconstructed nipple didn't flatten. I don't know if this was because I was just lucky or if it was because of the instructions I was given. I was told to fold small gauze pads in forths and then cut a triangle off the corner that connects all the quarters. (You end up with a square with the center cut out.) The gauze pads were stacked and placed over the reconstructed nipple to completely protect it. I think I used surgical tape to hold the gauze pads in place. It was a while ago but I think I protected the reconstructed nipple for a long time - possibly a couple of months maybe longer. My recollection was that it was a long time before I started wearing bras and also I slept on my back for quite a while.
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Dana, great interview! So well-spoken. A lot of what you said are things I've said myself... "After I picked myself up off the floor, I got what I like to call my "Master's Degree in Cancer." It was a long road filled with more information than I ever wanted to know about this disease."
I love this: "In fact, they were bored by me; I didn't have an active cancer, I didn't have previous surgery to correct...I was easy!"
Great article, thanks for doing the interview and for doing such a great job!
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Dana,
This article is very good. It's engaging. You touched on so many relevant issues. I bookmarked it so that I can pass it on. I can especially relate to having to figure out the path on my own. Finding that to get good care you absolutely have to research the medical issues and advocate for yourself. One question - shouldn't the book they mention be "The Breast Reconstruction Guidebook" by Kathy Steligo (not "The Breast Reconstruction Handbook")?
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Wow, Dana, when did you find the time to write that?? Great work. So informative for those unfamiliar, and like reading my own thoughts for those of us on the same trajectory. It's great.
Called the center today. Finally got to 40 ml and now they say it also has to be chicken broth colored! I wish the doctor would never have told me I would definitely not be going home with drains. Such disappointment. Not that I want to risk a seroma, I just want it gone!
Asked about several drugs listed as drug allergies on my discharge form that I did not tell them. Did I have some reaction while I was there and if so, what? Hoping they will call me back with this info.
Also got a prescription for Ambien and had my husband buy me melatonin. Will try melatonin first I guess. Maybe I just don't need sleep? Aside from a few moments of tiredness, I generally feel ok during the day with very little sleep at night. I can't nap even if I try. And believe me, I used to be a great napper.
Plication--- apparently I did not have that. Nurse said that would only be done at stage 2. I had thought I would though. Is it really that bad? I may have to rethink.0 -
Dana - Awesome article! You are an excellent spokesperson for both BRCA and NOLA. You inspired me as well.
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Ok WOW!! Fate has intervened! I get out of the shower and my bulb will not suction. Two hours later I get a call back and she says wiggle it and if there is any play in the tube, it has to come out. Well I could spin it back and forth until the suture stopped me. She said clip the suture and pull it. I called my surgeon friend to come over but he was in the middle of something so I did it! I looked away, took deep breaths and pulled and pulled!! There was so much tube in there. But it's gone now. Now let's hope no fluid accumulation.....I am so happy!
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KBodie - I feel your joy! Congratulations!
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