NOLA in September?
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LizR,
Don't I wish I had the answers to your questions! I did get my ins. co to say they would cover NOLA as in network. I still have no answers to reasonable and customary. My ins. co. gave me what they consider r&C but in the same breath said that they are not guaranteeing payment of these r&c charges. So ...what does all the ____mean? I don't know. I am going to NOLA Feb 2 and I am having this surgery.
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Sassie, I am also feeling like I need some fat injections too on one side (the rads side), and could use more lipo.
Sandy, how does that work past Stage 2? Do you just send pics to Liz and ask? I was wondering if I could combine this with Tattoo.... Will insurance pay for surgery touch ups past phase 2?
CCBaby, I've had both donor site areas, front and back. 20ccs or below for breast and tummy, 30ccs and below for backside (lumbar, GAP, etc). HOWEVER, I've been told to keep my drains way past this several times. I think if you dry up fast, (I do), they are nervous to remove them even when the numbers are met. I had one butt drain in stage 2 that was down to single digits! Best to call, best to call, best to call !
If you can't get a call back, tell them you are wanting to REMOVE A DRAIN. (Ha, I got calls back fast with that, he he). Spring.
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Best to all of you. I don 't have much to offer other than that and to say a big thanks for all the information I've garnered here, especially this thread.
My husband took out one drain yesterday and I have one left. I got my path report from surgery and margins are clear and I'm Stage 1....thought I was home free until Dr said I need to see a medical oncologist. Does this mean I'm headed for chemo? That scares me more than the surgery did. Husband says I might be on tamoxifen from what he reads here and elsewhere. Does that make sense?
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Warrior, I put this in earlier today, but it is not here! Must have gotten lost! This is my third time trying to post this! ahhhhhhhhhck!
If anybody is interested in Iodine as a cancer preventative, go to www.breastcancerchoices.org and click on the Iodine tab across the top. You can sign up to be in an investigational study and get your first iodine loading test at about half price. After the Iodine Loading test, you can get a free consult for 10-15 min with Dr. Flechas who is an iodine expert. There is also a thread on this on BC.org.
I see a local Osteopathic Doctor for all my other supplements, vitamins, minerals, diet, etc..
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Mississippi, you need to see an oncologist to figure out the next steps. Since you are ER+, you should ask for the Oncotype Dx test - this can help you determine if chemo is "worth it" for you. Hope this helps.
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Sassie, many people have more than one stage 2. And it IS an opportunity to get more lipo if you want. I'll be needing another stage 2 to even out the girls. They are essentially the same size, but with different shapes. I didn't think that would bug me, but it does. And my fat necrosis needs to be readdressed. So--maybe in the spring, before hiking and biking season--I'll do another surgery. But not nearly as extensive.
I think the thing to remember about flap surgeries is that it is a process.Rarely do people just have one or two surgeries and then are done. Espeically if there were problems to be fixed in the first place. And certainly if there are problems that occur in Stage 1.
TrainerTam, I am not sure about getting lipo in Stage . The docs need to see how things settle out and heal up before they know how to sculpt you, and to know if a breast needs lifted, or fat grafts are needed. But some people are happy enough with Stage 1, and do nothing beyond.
Anne
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trainertam, they can't do lipo during stage I because it greatly increases the risk of necrosis/healing problems at the donor site. I was able to go back to work 6-7 days after stage II, and I had a LOT of lipo, tummy incision nearly completely reopened, rectus muscle repair, major breast revisions...but I do have a desk job and can work as many or as few hours as I want. I didn't need pain meds despite the lipo, so I was ready to go back to work right away.
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Actually, there are now women having nipple-sparing mast/flap surgeries in NOLA who are happy after stage I and aren't even needing a stage II. As far as additional touch ups, my insurance has paid for all of my 7 surgeries. Just contact Liz or Celeste and they'll have you send photos and set it up.
I'm heading for NOLA in two days, and in two days, it's supposed to be snowing there! I just heard from another patient that it's 26 degrees currently. It's been in the 70s here all week and we've been enjoying the beach over the holidays, so I am going to miss California this time.
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One more post, and then I'm heading out to shop for a down coat!
Spring, it's way too early for you to know if you'll want more lipo. It can take 6-9 months to see the full effect--things just keep getting better and better!
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TrainerTam stage 1 is all about making sure you have viable flaps and nothing more. Stage 2 and after is all cosmetic.
Sandy you have been dieting and exercising (and look great by the way) have you noticed any change in your breast size ?
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I've got my hot cocoa, I've got my fleece cozy pj's, and I have my popcorn.... off to do some serious reading of this thread (8 pages worth?!!!)... Be back shortly... LOL
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Hi everyone - I'm new on this board. I plan on going to NOLA for a consult (just faxed over my paperwork today and waiting on a call back to make the appointment). Just wanted to see what everyone's experience has been with them. Is there a certain PS I should request, did you like the results, etc. Any info would be greatly appreciated!
BTW, I'm thinking that I would like to do a DIEP w/implants - Have any of you had this procedure done?
Thanks in advance!
Pam
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Wow. It only took me 2 HOURS. Now here comes a really long post to comment on everything... and believe me when I say that I took notes!!!
Gin - I am sorry you are having trouble with your counts being low. Is this your first Neulasta shot? I am sure people have told you that it will make your low back and pelvis throb. The most trouble I had was sitting to standing and standing to sitting. Once I was up and about or settled in, the throbbing stopped. I was only able to use Neulasta once however... because I am an outlier and had an anaphylactic reaction to it... but was able to use Neupogen thank goodness.... Same type of med, based on a different protein to make Neulasta longer acting. Apparantly I am allergic to that protein. I looked like Will Smith on Fletch when he had his allergic reaction... accept I was bald...
Teel and CCbaby - My CT scan from the center also showed some areas of concern on both my left kidney and my liver. They ran a repeat scan here in Nov. which so far is showing all benign cysts and a hemangioma. My doc wants to repeat again in May - I may want an MRI instead so that I don't have so much radiation. Likely everything is okay for you - but always good to get checked out. And Teel - I had the same thoughts - I was going to be so p*ssed if I went through all of that surgery for reconstruction only to find that I had cancer elsewhere!!! Also Teel - if you have to have chemo - it will all be okay! It is not fun, but it is do-able.
Mel - SO sorry about the itching! If I had been on here earlier I would have totally recommended the Benadryl - but it seems the Center got to you first! It always helps me with itching! I hope that it is better by now. Also, I think it is hysterical that your 14 year old got you wearing make-up! Have fun with it!
Warrior!!! I am so sorry to hear about your ER visit on Christmas day! Boy, as if this wasn't a year to remember already - just to have that added on at the last minute! I hope that you are resting up and feeling better!
Sassie - What in the WORLD? It makes me crazy to hear that someone hit you with his suitcase! What an emotionally immature idiot. I hope that you continue to pursue this and file some kind of complaint and press charges. AND I agree - the flight attendant should be held responsible as well. SWstew can correct me if I am wrong, but I believe it was the flight attendant's duty to ask him to lower his stereo anyway. I know if I bring the dvd player for my kids - they have to have earphones on so as not to disturb other passengers. If she cannot take responsibility for doing what should have been her job - maybe she needs to find another line of work... Just my opinion... and you all know I am not outspoken or anything...LOL Also - I have to agree with you on the whole scar thing... now that I have 5 new little scars from my hyst/bso, I REALLY look like I have been through a warzone. My husband laughs everytime I step out of the shower and he takes in all of the scars!
Trishia!!! Your pic is beautiful! WOW. Is this the same pic from Timtam's site? For some reason, I am thinking this is an even newer pic? I LOVE the results. Okay, now on the pregnancy and BC thing - you know we all agree to disagree on this topic, right? And you know I love you, right? Okay, I agree that if you already have a breast cancer that pregnancy will make it grow. Mine grew like crazy with my pregnancy and I really should have been dx'd during pregnancy, not 3 months after my baby was born. However, there is no real evidence linking pregnancy to causing a new breast cancer or a recurrance. Believe me, I researched and researched before I tried to get pregnant with my second daughter. The main thing I ended up doing was making the docs make sure I did not have a breast cancer already growing (as best they could) prior to getting pregnant. In fact there is even one study on here that says that pregnancy has been shown to reduce the risk of recurrance: www.breastcancer.org/tips/fert_preg_adopt/new_research20061208.jsp However, I do think that this is a decision that each person has to make in conjunction with their Onc and really, one has to do what is best for themselves. So, after having a BC grow like crazy during pregnancy, I totally understand your decision not to have more children - I chose the opposite. But it doesn't make either of our decisions right or wrong - we each made the right decision for ourselves. And isn't that what it is all about anyway? Doing the best that we can with the information that we are given - and trying to live as long as possible to raise our children and spend as much time with our families as we can... Okay - sorry to get philosophical... must be that I forgot my estrogen cream today... LOL Which, by the way, is from Whole Foods and is a phytoestrogen (for if/when you ever might have to take something!).
Laughlines - My daughters were 1 and 4 when I had my stage 1 in August. It is very do-able. If your little one is not in a toddler bed yet, I would recommend that change about a month before surgery so that she(?) can get in and out of bed without you lifting her. Then it is just a matter of explaining that mommy has had surgery and that you have to be really careful for a few weeks so that you don't have something go wrong. My kids were great after the first stage - and overall very gentle with me. They have not been so forgiving after my most recent surgery, so we will see how they do on stage 2. I also had all of the same feelings as you about undergoing a surgery that is not totally necessary and the time it would take away from my kids (I worry about it with stage 2 coming up)- but you know, I wasn't happy in my body before... and we all know, if mama's not happy, nobody's happy! But in the end, you have to do what you feel is best for you and what you are comfortable with. We are here for support either way.
Marcia - HUGS(((((())))))))) Sorry I missed your call at Christmas - we were at the in-laws for a week, then they all came to our house for 4 days! ...still cleaning....
Minnesota - I had a D&C last Dec after a miscarriage. I don't recall being in too much pain or having a long recovery. I was mostly tired because a miscarriage involves the loss of a lot of blood. I don't know if that is the same for a d&c necessary from other causes?? Good luck in your procedure - I will be thinking of you.
Sandy and Spring - Thank you again for all the info on the supplements. I just ordered calcium w/vit d and strontnium from a company called algaecal (I think - sorry, late, chemo/menopause brain). Supposedly these two supplements work great to decrease osteoporosis. Will let you know.
Holtbolt and HellofromCT - Good luck to the pair of you on you stage 1's. I find it interesting that you both have the same primary on the same day for stage 1, but I think where they are so comfortable with their assisting surgeons, that it makes it easier for them to do this?
Anne - I cannot wait to go to Timtam's site to see your pics!
Wpld - I am sorry that you have had a hard time. Wow - a second stage 1 - I bet you were not geared up for that. I hope that everything settles nicely this time around and that the next stage if necessary is all contouring!
Mack6 - I had bronchitis too!!! FOREVER!!!! I think it took 2 and a half months to go away and a prescription of Cipro (finally - after I had coughed my brains out). And I was still coughing post hyst/BSO, so was miserable! I know exactly how you feel! I am glad to hear your boys are doing well. Do you think you will still be in NOLA on the 23rd? That is when I fly in.
Pam - Bite your tongue... LOL. I do not want an incision line completely covering my butt. They had better figure out a way to make it stay 2 lines... Whahhhhh... Anybody post stage 2 hip flaps that can chime in here and let me know if this is what I need to be prepared for???? PS - I PM'd you. I hope you are doing well and I hope you get that drain out soon!!!! I am sorry that you have to be part of the juicy club! It is not fun.
MississippiQueen - I am glad you are on the other side of surgery. I hope that your onc appt goes well. Consider this a good thing. Like Spring said - see if they can give you the oncotype test that determines if you would benefit from chemo. Either way, meeting with an oncologist is not necessarily a bad thing. This way, you have a better idea of whether or not you will benefit and give you a good plan for the future.
PaminFL - I think everyone on here will tell you that they love their NOLA docs. I am a Dr. S fan, but you will find equally as many Dr. D fans. I think either way, they will do a good job for you. I don't know about the DIEP with implants, but is it size that you are looking for or just the look of an implant that you desire? If it is just size, they may be able to do a stacked DIEP/GAP flap - ask Spring and Warrior about this. If it is the look of an implant that you prefer, with the increased size - I am sure they can do whatever you want. Good luck with your consult!
Whew... it is obvious that I cannot be gone from this thread for that long, because I think it took me equally as long to write this post as it did to read the thread. Happy New Year everyone!!!
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WPLD - I just wondered how does you DIEP side compare to the GAP side? I am contemplating the reverse in feb. I had a bilat DIEP done and one side failed and needed to be replaced (TE) right now but PS would like to do a GAP. Hope all is going well. goose
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I thought I would pipe in here. I am 7 months post stage 2. I am still seeing changes in my breast that are making them more symmetrical each week. I am sure they will do a second stage 2 if needed.
sundandsand
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Nordy - I was trying to find photos of people like me.... delayed bilateral recon with hip or Sgaps (not skin sparring) and I found your pictures... you look fantastic... gives me alot of encouragement for my 2/23 surgery date.... thank you! Does anyone know of anyone else who posted photos in this category? Looking at result photos of skin sparring girls or implant redos are not really helpful because I have no skin up there to work with at the moment....
Mississippi - I thought regardless of treatment.... once diagnosed with any cancer, even DCIS... we all are assigned an oncologist regardless if further tx is necessary.. am I wrong? I was orginally dx with DCIS in 2006 and I had an oncologist..... you need an expert following you in case the beast tries to rear it's ugly head again (unfortunately for me, it did).....And, yes, with your dx... the oncotype test will help determine if any chemo will be beneficial. I unfortunately fell in the gray area with that test (score=22) and decided to do chemo for the 3-5% benefit it offered.....and after 2 dx, I was bound and determined to conquer it for good... don't get me wrong, chemo sucked... but it's doable. But, yes, Tamoxifin maybe the only thing in your future!!
Maybe Dr. D can do two Stage 1's on the same day (me and Hellofrom CT) because the surgeries are different types and one takes less time?
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Wow Nordy, Very good with the notes.
I cant take notes. LOL
Sorry, Maybe they just do lipo for the bunny tail if needed. How about asking the center or on Dr Ds Ask the Dr.
I guess I cant think of what to say this am either. I didnt sleep at all last night : (
off to read your pm....
Pam
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Ok Stage 2 Ladies - I have a question. My instructions say to wear the dominatrix thingy for 2 weeks post op. I will be 3 weeks on Thurs. I took it off on Sunday and went without it for about 6 hours, to church and then lunch out, etc. By the time I got home, I was puffy thru the mid section and felt bloated. So I put it back on and thats where its been since. Yesterday was my first full day back to work, I was all bloated feeling and puffy when I got home, even though I wore the dominatrix. Is this normal ? Have any of you experienced this? Just curious about it. Let me know what you all experienced. I know that I have got to get some exercise, but it is FRIGID here, highs not even reaching 30, so I have been a bumb in that regard. Do you think that some regular exercise will help with this? Let me know girls.
Welcome back Nordy!
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Dear Holtbolt:
I have not posted any pictures but I was delayed Diep. They had absolutely NO SKIN to work with they had to get everything from my small abdomen. They did a fantastic job. My husband is still amazed. I agree very few ladies go in needing skin. They chopped off everything on me with the mastectomies and I am very bony on my chest wall. (Thats the only place)
Now if I want to get picky here is my only complaint. I had 2 very large babies that I carried straight out in front like a swallowed a watermelon. My skin was not the greatest with stretch marks. The only place you really see this is my right breast near the cleavage. I got an area that isn't great but that is what he had to work with. I had the option of doing the SGAP. I would have been a cup size bigger and would have had perfect skin but I let Dr. D. make the decision that I didn't want to make. Diep or Gap. My husband wanted me to go for the Diep. If I hadn't worried about my lower back and my sciatic nerve I probably would have jumped at the Gap. Anyway I know you will be amazed at what they can do. I am not really interested in posting pictures at this point since I am only 2 weeks out of stage 2.
Hope I have helped a little
Well today I am going for acupuncture to see if it will help my neck and back. Thank you to all the ladies that have sent understanding thoughts and encouragements. It is really great to know so many people take an interest in others.
Lots of Love to all of you in recon land.
Sassie
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Melanie, Dr. Massey doesn't give us the Dominatrix in Charleston. I've been wearing the heavy-duty, above the waist Spanx (or their equivalent.) It's been 7 weeks now. Mostly I wear them to support a few areas that are tender and seem to pull a little when I'm without them. But I think soon I'll be okay, Dr. M's advice is to wear them as long as I can stand them. Compression is our friend...I think I could "stand" them till warm weather returns, but in reality, I'm thinking another week...
Anne
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Thanks Anne - I am so with you on the warm weather thing, I can not imagine trying to wear this thing when the tempature is rising. UGH! So you still have the puffy feeling then? even at 7 weeks?
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Good Morning!
Spring thanks for posting the info on the iodine.
Re: stretchmarks post stage 2 revisions....I have a little problem - of course on the irradiated breast......BUT I'm just coming up on the one year anniversary of completing rads...I had stretchmarks ON the breast skin and had skin sparing soooo that is my sort of weird little place that may need or get a fat injection or something? some day....It was puffed up and a bit ridged initially due to swelling and now... divot.... is a strong word ...w/ a bra absolutely cannot see but OH MAN I have NEVER been so picky!......Still very happy and still waaay too early in the healing process. Pretty sure this is also the area where he did tell me he got in and worked on it....the skin and flap was previously VERY adhered together post stage 1. Wait and see.
Melanie. I think it is still too early and that compression is a good thing that cannot hurt. I don't think there are guarantees but I don't think we'll need it forever. My PT is telling me she expects me to swell so I'm just planning on staying compressed for a while, like at least another month? or until I can resume more exercise and maybe drop 3-5 lbs. I hear ya on the weather...it was Oh so EASY to walk the neighborhood post stage 1...and I know I am whimpy w/ temps in 30's to 40's but it's just too cold. Hoping to pull the drain today then another week in dominatrix but it seems a bit stretched out? -so seriously looking into spanx afterward......for at least the next few weeks of back to work on my feet.
Mississippi queen......I was very nervous about seeing the med onc......at my home facility (UTSW) apparently the breast surgeon used to manage all the low grade post treatment hormone therapy and she and I had a 3 yr longstanding relationship. BUT I think I was part of the newer practice- referal to med onc and I had a very small very early BC. I DID question the need for both docs as it almost seemed like a lot of what they did was repetitious and shared w/ them both that it seemed almost like overkill plus really inconvenient to keep adding physicians, and appt after appt...they both agreed it was fine to streamline and alternate them one every 6 mos for now. BUT they both know I'll call and come in for issues. I think they worry because a lot of women get cavalier and sort of blow stuff off after surgery. Getting hooked up w/ a med onc is by NO MEANS a sentence for chemo. AND do NOT forget that every single treatment decision is ultimately YOURS. I felt very 'pushed' into protocols and "I have to do what they tell me" thinking, etc, esp last year. Listen to their suggestions, pick their brains, study up, educate yourself, get as much info as you can. But, esp if they start saying " you will", or "you have to' REMIND them -or at least remind yourself........You don't HAVE to do anything......these treatment plans/decisions are YOUR CHOICE....do NOT forget that. Do what is right for YOU. Ok sorry but you'll feel more empowered and peaceful when it is your decision to take or not take a pill or treatment.
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Another question from the nervous Nelly.......I am having surgery with Dr. S in 3 weeks and according to the phone consultation I will have my choice of SGap or Hip Flap. I have noticed that Dr S seems to (on this board) do a lot of hip flaps how did you decide ?? I think Nordy has told me but I haven't heard from anyone else why they chose hip over Sgap ??
Has anyone here had SGap with Dr. S ??
Gotta go find the what to pack thread....
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Stephanie, I'm not feeling like I'm looking good. I am seeing my new nutritionist for the second time today. I've gained a pound a month since my hysterectomy and am very uncomfortable due to having the diastasis repair and pressure from the internal fat. I think my breasts are a bit larger, and maybe that is why the vertical scars had stretched out. Dr. D revised them in November, so I just cannot gain another pound or it could happen again! Anyway, my metabolism will be tested today after I eat a very light lunch--she has some sort of machine that tests it. I had a thyroid test last year and it was normal, but I feel I have some symptoms of low thyroid, and my sister is on med for it, so I might repeat the test soon. I may just have to accept the fact that this is all just from the surgical menopause and work even harder to lose weight.
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Nordy...I bet your fingers hurt from all of that typing!! That was so nice of you to answer/comment to everyone!
PamFl...I had Dr Sullivan from NOLA, and the other two docs came in to my room to check on me...I thought that was nice of them....they are all great there.
Jamie...Dr S told me during my consult that he doesn't do as many of the SGAP anymore and suggested the HIP flap for me.
Celeste from the center called me this morning to check on me and I told her that my drain only put out 21 cc's yesterday and 30 the day before. She said to give a couple of days and call her back and most likely I could go ahead and pull it and trade my girdle for Spanx. I can't wait!! Melanie...Did they tell that you could wear Spanx instead of that uncomfortable girdle?
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CCBABY - No they did not, I only have the post op written instructions about wearing the dominatrix getup for 2 weeks post op (24/7). Nothing more. I am probably due a call from the center to check in on me. I will inquire about it then, if they do not call, I will give a ring in a day or two.
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Jennifer! I skipped right over my note for you last night! SORRY! Okay, on the tax thing... I know that you have to have more than 7% of your income in related medical expenses to deduct. I do think that travel for surgery is included as well as consults, etc. If you used a flexable spending account for any of it - you cannot deduct those particular expenses because that money was taken out pre-tax. That is the extent of what I know! It was great talking to you the other night! Hope you are feeling well!
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Jaimieh,
I had bilateral SGAP. Dr. D was my primary and Dr. S was the secondary. They never told me who did which side, but they both look great. I would be happy to answer any of your questions.
Sunandsandgirl
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Thanks Nordy......hmmmm7%...no flexibles.......I just may be able to deduct based on what I've paid so far!........and the rough figures I can readily crunch in my head....ok good, this is good news! and technically I made less in 2009 than 2008. I was working so much overtime in 2008 literally until a month before I was diagnosed w/ BC... go figure!
I think I feel a vacation in my future....where I can carry my own bags and I'm not the patient!
Feeling good thanks. Stacy called me back........abd drain put out 25cc this am......close but probably needs a little bit more time.....last time I had the other abdominal drain for 4 weeks so if that's a predictor I get 2-3 more days. Need more antibiotics and the off work extension for this week. Plus need to know if all does go well NO restrictions next week....ALL this paperwork for work. Forgot to ask about Spanx BUT I still have at least another week to enjoy the dominatrix.
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PLAINJANE --- Oh Yes! ENJOY that dominatrix! It actually feels better than the puffies and the bloating though. And as cold as it has been here, I am actually glad to have it on...........BITTER here this week. UGH! AND WINTER HAS ONLY JUST BEGUN.............
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