NOLA in September?
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Warrior, ditto on the wanting to be healthier this year. Yes, w/ this supplement not sure what I'm really called? just paid the fee so I can get the stuff at cost....I think a one month supply of just the basic is 40 something...but they like you to take 2 other supplements that are meant to go w/ it to get the best benefits, one of which is a fiber product that MANY swear by....personally since that is not my problem I have no personal convictions on that one.....The lady who hooked me is a stage 3BC survivor and nurse lawyer who swears by it and my Physical therapist is a big promoter as well. BUT yes, Spring is very well versed and studied on nutritional info....I want to learn more about iodine too. Actually just KNOW I need to resume more plant based. Was pretty much doing so then honestly after stage one started cooking/baking and had numerous wine, cheese, dessert get togethers so REALLY fell off the wagon....throw in the holidays- turkey, prime rib, casseroles, smoked salmon yesterday w/ brie....BUT even the diehard plant based folks tell you it's ok to have 'holidays' during the holidays. I think my holiday has lasted 3 mos tho! Sort of like what Melanie said " hard to stop shovelling!"
Ginnie! ARGH! Frustrating but what are ya gonna do!.......is your stage 2 timed so close that everything else has to stay or is there wiggle room? deep breath.....Hah! easy for me to say but my body isn't doing things as fast as I want either.
OK, sun supposed to come out today, cold, but will be nice after all the rain/snow/slush.
Happy New Year!
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PJ - Yes, I was without make up.........never wore it. Tried a couple of time when I was a teenager, not successful, takes a long time and I am a 15 minutes, to get ready including shower kinda gal. Oh well we will see how this make up routine goes, I have it on now, 2 days in a row, my daughter is grinning from ear to ear. The things we do for our kids. Anyway, I always forget something and I have no clue about the order inwhich it all goes on...ARRGGH! 2 days in a row, I have forgot the mascarra..........must run to put it on before Courtney finds out.
So PJ, you will have to help me with the vitamin thing, I have been trying to get my calcium down, but have found that it is REALLY stopping me up, at least I think it is that. SO laying off for a bit to try to isolate what it is, I take a multi, D, C, AND CALCIUM TWICE DAILY RIGHT NOW. Just stopped the calcium today to see if that is culprit. Also take these in the morning and at dinner with food on my stomach, but I always get queasy and have to take a zantac. This only started when I added the calcium....HOWEVER, it has also been since stage 2 and sometimes it takes a few weeks for tummy to feet normal. SO let me know what you think "consultant". Later tater, off to make my blackeyed peas and collards and Zea's corn grits! Enjoy your day. Will check in later.
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PJ -NO BRA, EVER. HA! Actually cannot wear one for 4 weeks per Dr D because of nipples. (which are beautiful BTW, the scars are already fading to light pink and the blue ink is almost completely gone!)
I have to wear the nipple protectors (the madonna cone look) for 3 weeks, one more to go. But unless my Mom and my Daughter dress me in something silky and tight, I will probably NEVER wear a bra again! Mine are small anyways,and I really enjoy the freedom and frankly the bra is a little uncomfortable since my surgeries. So there you have it............xxoo Mel
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Melanie, if you take the Calcium with Magnesium, you should "go" just fine! Sometimes I take plain magnesium supplements to get things working. That's what's in laxatives, you know...
ALL: I finally got my pics up on TimTam's site--"My SGAP Journey". For those of you who aren't familiar with that site, it's a private, protected site that TImTam hosts. To access it, locate her name in the members list and send her a PM. For protection, she usually asks that you be a "regular" on bco, i.e. have a steady posting history. Once she okay's you, she'll give you the website and password.
My goal for the New Year is to maintain (or improve on) the gift I've been given through this amazing reconstruction (read:lipo!)
Anne
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Sassy - Re: the tamoxifen - I was told that for me, anyway, the issue was prevention in the other breast. As far as I know, I don't have the gene (tho I am going to be tested), so don't have the increased risk for ovarian cancer. Also, it had not gotten to my nodes. I've had concerns about this very issue, because another onc told me that whatever I do, DON'T stop the Evista. So I have asked the question specifically to my onc here, and he said it was purely for prevention in the other breast. I'd be interested in what other gals have to say about this, because I'm still uneasy about it all. I am counting on the trade-off of breast for ovaries/uterus, but if the drug would prevent metastasis to other parts of the body, even if the risk is low, I'd sure like to hear about it!
Sara- If you don't mind my asking, who was your primary on your first surgery? I know you said you had D and M.
Other gals - When I had my DIEP, they were only doing one Phase 1 surgery a day, I believe, but then there were only 2 docs. Since then they've added one doc full-time, and I don't know how often M is there. My surgery was a unilateral stacked DIEP. They said about 6 hours, and it took 5 1/2. My guess is that with more surgeons now, they can do more surgeries. I think T has been there quite a while and may be about ready or ready to be a primary. I don't know about M. I can imagine Drs. S and D maybe splitting up to team with the new surgeons for Phase 1's and then perhaps popping in to check on what's happening in Phase 2's where only one surgeon is needed, plus doing their own Phase 2's. I know that D is very meticulous and I would think would be supervising everywhere he could possibly be, as far as humanly possible!
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thanx Anne, will try that,....wished i would have known when i was buying, i actually picked that one up and the put it back.........
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Minnesota,
I was treated at MDA in Houston, TX. Dr. Christofanilli was my Dr. I was told taking TAMOXIFEN or an AI was the most important treatment outside of surgery. You get the most bang for your $$$ is what he said. It is to prevent the cancer in the other breast as well as mets. At least that is my understanding.
Bettye
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HAPPY NEW YEAR LADIES!!!
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Happy New Year all!!!
My oncologist is adamant that I remain on Tamoxifen, regardless of the fact that my ovaries are gone. There is still estrogen being produced in my body, and he strongly believes that it needs to be blocked from reaching any residual breast cancer cells that might be floating around--prevention of recurrence and prevention of new primary cancer. He was going to switch me to Arimidex after two years, but when I reached that point a couple of months ago, I expressed my concern about my scoliosis and fear of losing bone density, so he is allowing me to stay on Tamoxifen for the time being. He said that the studies showing a benefit from switching after two years did not take into account women who don't metabolize Tamoxifen well, and since I do, he is comfortable with me staying on it.
Here are his recommendations for optimal health:
1. 600 mg Calcium with 400 mg Vit D morning and night, as dosing once daily is inadequate.
2. Vit D3 1000 IU once daily.
3. 15 minutes of sunlight without sunscreen, daily (provides another 2000 IU Vit D).
4. Centrum Silver or similar once daily.
5. Lowfat diet (less than 20% fat) and maintain ideal body weight.
6. 4 hours of strenuous exercise per week.
7. Limit alcohol to less than 3 oz/day
8. Aspirin 81 mg daily
He (Dr. James Waisman) and his partner, Dr. John Link, have collaborated on The Breast Cancer Survival Manual and this is a list of recommendations they distribute to patients of BreastLink. I'm currently taking 50,000 IU of Vit. D once a week to try to boost my level, which tested pretty low.
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St. Charles Surgical Center also has patients having orthopedic surgeries, so there are other surgoens there at times as well. There was a male patient walking the halls when I had my surgery last June.
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Spring~ Brenda26 is having her stage 1 according to her post on Jan. 29
(just trying to see who I could meet up with)0 -
Jaimie, what day will you arrive in NOLA? I'll be there again 1/21-1/23, and Minnesota will be there the same days.
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Sassie, I wanted to respond to your question about the nipple guards. The tabs really only stick once, and then you can cut them off and use brown tape to hold the guards in place. I use two 6" long pieces of tape and criss-cross them, changing it daily. I also change the position of the tape daily, because it does begin to irritate my skin after a few days. I don't know if you saw my question to Dr. D on his board, but he said that I should wear the guards for 4-6 months if I want to preserve as much projection as possible. He did my nipple re-re-construction on Nov. 5th, and they've shrunk as much as I want them to, so I plan to wear these devices for another 4 months. I have an issue with flatness of the areola area on both breasts, (but especially the right), due to the way my stage I was done by my first doctor, and the nipple guards compress that area. I am a bit nervous about having constant pressure there for six months and feel that I will most definitely need a boost from some Alloderm once the nips settle in. So, probably one more revision sometime in the spring!
Sara, I wanted to mention that you are on my list of ladies I'm praying for. I hope another flap is not necessary, but you are in the very best of hands with the NOLA docs and can trust them.
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Sandy I come in late on the 24
So I miss you by 1 day...booo I was going to come in on the 23 but then I would be away from my babies for 12 days and that was just tearing me up. I am already trying to figure out how to use the web-cam so I can see them and they can see me. My soon to be 7 year old has a problem since my Dad passed away that everytime I go into the hospital she thinks that I am going to die . It breaks my heart. Sandy after reading your next post you have to come to NOLA when I am there
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Happy New Year Ladies!!
For those of you that have posted pictures on TimTam's site - THANK YOU! It is so helpful to get a visual, and know what to expect!
Spring - thank you for starting this thread - I will be indebted forever!
Sassie - I'm sorry the attorneys gave you such a sh*t answer! I do hope you are feeling better - and I urge you to write the airline - they are still liable - no matter what the police and lawyers are saying!!
I am looking forward to meeting Jaimie and Bettye in NOLA at the end of the month!!
LouAnn
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Happy New Year again!
Re: Tamoxifen, (anti) hormone therapy....I got the same explanation as sandy and bettye BUT I really do want to know more stats post blm? No I'm not quitting the med.....just there do not seem to be any rates of recurrance or models to figure that based on blm.......I will be studying up on this and will share what I find.
Sandy, lookin good in your new pic. AND thanks for the posted guidelines. Does anyone else have a problem finding Calcium in amounts to equal 1200mg.....seems like they come in 500mg tabs only?
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PJ - Yes I did find 600 but also noted that the multi that I take make up the difference when I take the 500 tabs. 600 tabs are not the norm, the 500 seem to be more readily available.0
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Liz, All of my scars can be concealed under a bikini. Dr. Sullivan was my surgeon and I hit the beach 4 months after my surgery in a bikini. I was lookin good!
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Hi All,
Long trip home and it's late, I didn't read every word! I made two corrections to the listings above. Just let me know if any more need to be done.
Warrior, I take a LOT of supplements and do alternative stuff, and I see an Osteopath Dr. to help me with this. I think the book "Anti-Cancer, A New Way of Life" is the best starting point.
Here is sort of a summary of what I do:
No/low: dairy, meat, alcohol, sugar. Plant based diet. Whole foods.
Low body weight/BMI
Exercise 30 minutes a day at least (generally I walk). Yoga daily (aim for this). A serenity practice is important.
Anti-Cancer supplements: Iodine (with others to help absorption - Selenium, Magnesium, ATP co-factorsy) Vit D, Turmeric with pepper, green and white teas, DIM. I also take a lot of other supplements for good general health and healing. I also do Vit C drips (well I've done one and am supposed to do more!)
Nite nite!
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Hello to HellofromCT, I am scheduled for NOLA on Feb.25 bilateral SGAP . I'm Tammy (Trainertam) from So Cal. I'll be at the Homewood after the Hospital stay. Nola just told me I'll be in the Baptist Hospital. I guess they do this in a couple of different hospitals. I look forward to meeting you and Holtbolt and Lilmissmuffit.
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Jaimie, NOLA is becoming another home away from home and we are seriously considering buying a condo on St. Charles. Maybe I can arrange to be there the next trip you make!
Jennifer, the statistics I was given for my situation were 10 year 97% survival with Tamoxifen, 92% without. I don't notice any side effects, so the five percent seems worth it. I actually stopped taking it for a few weeks because my breast surgeon feels that I'm "cured", but the more I read, the more I didn't want to go without it. I discussed it with my husband, and we agreed that I've gone to such great lengths to avoid my mom's fate by having bilateral mastectomy that if I had a recurrence or another primary after quitting the Tamoxifen, I would likely really blame myself, and I don't want to have to ever feel like I stopped short of doing everything I could do.
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Lydia,
You are about 9+ weeks out from stage 2. How are you feeling & looking?
Can you share what they did for stage 2?
Thanks,
Pam
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Sandy Thanks......By chance do you know the source of the stats? I am, as I stated, planning to grill my med onc. Hate to be so hung up on stats. Regardless, I have NO doubt that for me moving forward w/ BLM/immediate recon after lumpectomy was still the BEST decision.....I think even if my recurrence survival stats did NOT change it was worth EVERY bit if for the PEACE of mind.......I still find so many of the stats CONFUSING! survival vs recurrence? Last year this time it was all too scary to even discuss. But, I'm thinking I had VERY similar stats to yours based on adjuvant! online w/ tamox for 5 years..... It still amazes me that this beast that used to be a death sentence can now be used in the same sentence w/ cure!
I tried to call Nordy last pm......Because I was awake! and after 9pm! (But I napped yesterday). Anyways I got an answering machine....guess I have her home number. Neglected to save her cell in my phone- rats!.....I BET she is visiting family or out of town but did tell her to ring me up or POP on here to let me/us know she's ok.
Mel/itchy....are you still? I'm still cracking up about you putting on makeup for your DD! Very cute, very sweet! I bet she will happily provide you w/ listed order of application but might be simultaneously rolling her eyes....but she probably NEVER does that....esp at age 14! HAH! LOL! Ya know for the sake of time/ ease- makeup anymore or when pressed = concealer under eyes and lipstick and most of the time I can get away w/ it.
Agreed on the calcium......seems like maybe older guidelines were for 1000mg?.....starting to think they must've upped the recommendation to 1200? and maybe the 'industry' hasn't caught up? dunno....DO know I've read (I think) in the China study that there is sort of a fine balance for calcium- implying not to overdo?.......I know I need to study up....problem is so many theories which do you trust? I'm sort of leaning more towards the alternative/wholistic when it comes to nutrition/supplementation.......I TRULY believe our medical community-MD's etc are more focused on disease, surgery etc(as they should be).....and that probably most of them are NOT the best resources for nutrition/supplementation....but again not universal.
Ok girlies....it's the weekend! and it's sunny but cold! On to saturday morning fun! hah! Laundry and cleaning my bedroom! OH how many piles of clothes remain from post stage 1, every underwire bra I own, home from stage 2, unpacked but clean.....and work scrubs I haven't worn in a month now. I feel a major wardrobe purging in the future but it's still a ways off. So will make room to get this stuff outta sight for a bit longer.
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Sure Pam, They cut around one of my transplanted nipples to make it smaller. Lifted the same breast.Liposuction on the hips again. I think they did way more Lipo this time because it was more painful than the first stage two. I may enlist one more time but I am going to give myself 6 months at least before I do it again! I am still wearing stretch pants. I have a patch of scar tissue on my waist that I need to get therapy on but I cant do that until the bruising is all healed. All in all results are great!
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As you can see I am already thinking ahead.....For those of you that have had stage 2....Do the docs only lipo what is needed for the surgery from stage 1 to look right or will they do some in an area that you want lipo at if you ask them to? And how pain do you have with the lipo...how long for the pain to subside and how long off of work after stage 2?? Thanks!
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CCbaby, For me, they did lipo generously to "balance" out my body given I had the flaps taken out. I think they will do more or less depending on what you want. Never hurts to ask. go in with a wish list, thats what I did. They are experts and can advise on what will work best for you. I am not sure if you have just back done, if they lipo the front, or visa versa. I had flaps from both sides so had lipo both sides. Maybe someone else can share?
As for pain of lipo, I hurt like a mutha for 3-5 days, then it slowly got better. As for work, it will depend on how much they do. Some people have very little down time after stage 2, and no drains, etc. I had a lot done, both sides, incisions lowered, belly muscles stitched below navel, etc., and had 4 drains and 4 weeks off work. Really will depend on how much they need to do and how much you want to do. I would think 4 weeks is the max.
Ladies, do you think about 2 weeks downtime after stage 2 is "typical"?
Spring.
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CCbaby! It's all SO fresh I CAN answer you! sorry if I've told this over and over!
OMG....I agonized how to go about approaching, what to say to the docs w/o coming across like some entitled princess trying to squeeze some free 'work' out of someone whom I'm already eternally grateful to...I had DellaCroce. I am/ was overwieght...Not a ton, my BMI pre stage 1 was about 26. BUT have always had extra junk in the trunk....EVEN a few yrs ago when I was REALLY fit and at 17% body fat. Since BC, lumpectomy, rads then seroma, cellulitis, lymphedema I've just NOT been able to return to that level of fitness....each time I got back to workouts and started to progress I'd develop an issue: pain, swelling, swollen axilla that I was worried would progress, cellulitis that at one point appeared similar to inflammatory breast cancer...it was like a vicious cycle AND part of what pushed me to move forward to have BLM and recon....my irradiated breast was a painful, weird swollen reminder and constant worry....bizarre sensations and pains continued LONG after rads finished, sometimes woke me up at night and invariably my mind wandered.......are the lumps swelling, scar tissue? or is it a tumor? not to mention it was an eyesore.
I originally thought I wanted GAP....but mostly because in my mind there was just MORE donor tissue. When I went in for consult and was able to chose DIeP vs GAP.....Celeste came into my second appt w/ the breast surgeon and said " Oh, Dr. DellaCroce told me to tell you if you decide you want DIEP instead of Gap he'll lipo your hips and all for you at stage 2". of course I did NOT forget this "deal"! But was very nervous about going in w/ my own 'agenda' at stage 2 pre op appt. FORTUNATELY, these people are waaaay ahead of us..I had an appt w/ Sally too preop and she encouraged me to ask questions and NOT be afraid to ask for stuff or at least his opinion....She flat out sort of encouraged me to seize the opportunity....Remember they are PLASTIC surgeons.....They know what looks good better than we do and that is what they strive to and DO acheive....I didn't have to say a thing! He started marking me w/ that blue marker and just said " Ok these are just suggestions" to which I replied "looks good! I trust you, don't be shy go for it!" So he did. When he finished I did ask if he was going to revise a 3.5 yr old pretty faint scar from my first issue(ADH) that is about 12oclock on the right breast. He said he was worried he might cause more damage by trying so decided not to do anything and honestly it is SO faint. Then that was that....I had a LOT of blue on me. BUT he knew too I had body image issues and all about what I described above. The next morning I had noticed I wasn't marked evenly w/ blue on the thighs and asked him.......he pulled out pics of my body which to me were mortifying and started to explain something. I just said 'Ok, just curious, thank you.... I don't want to see those pics again', to which he said "You'll like the 'afters' better"!
So I HAD a LOT of lipo. Yes there was pain....At 3 weeks I'm still sore in the back/sacral area. And honestly when I woke up that was the first place I felt pain. I did ask him the next morning about that area because initially it was the MOST swollen. Again he looked at me and said "Umm, I worked you over pretty good back there". To which I smiled and replied "Thank YOU! Merry Christmas to me!" BUT...I need to update everyone and tell you MY BRUISING....at least the black and blue that was my entire backside, thighs is gone. There is still swelling and yellowish....you know how a bruise looks at the end? in that sacral area. They are generous w/ the pain meds but you'll need them. I had a demerol and phenergan PCA- BUT- my abd incision had to be completely revised too because I had an open area AND he offered to plicate(stitch) my abd muscles below the umbilicus to pull my abs in more.....not everyone needs this but being overweight and bottomheavy I did stand to benefit greatly from it.
Yes, the first few days especially....really the first week or 2 hurt but it's NOT intolerable. Day 3 or 4 yikes, slow moving give me the lortab please!.....BUT I have absolutely NO regrets and am SO grateful and hopeful.......Never would I have gone out and just done something like this BUT when they're already right there already- HELL YES! Seize the opportunity! I think in another month or so all will be very well BUT even then they tell you it takes scar tissue an entire year so to expect continued changes for 6-12 months. I'm having 4 weeks off work post stage 2 BUT I did have the BONUS version and I have a very physically demanding job.....reportedly most people only need 2 weeks off work
I know Trishia, Sandy and AnneW also have stories of lipo generosity. Spring had a lot done but she is/was not overweight. Someday I'll be able to say that too!
Sorry to drone on.......They have a reputation for being generous and VER MUCH live up to it.
Another discussion I had w/ DellaCroce way back in August.....I DID have concerns....knowing I wanted to drop 20-30 lbs.....I worried if my new breasts would 'go away' when I lost the weight. He reassured me then too that there was no need to go to extremes or do extreme dieting/exercise that stage 2 included liposuction to 'help' us out w/ that.
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Okay....I am going to be the odd ball here, but please remember, I am also a 17 year survivor! I am probably going to express some not so popular opinions! But I have always kind of gone against the grain with western medicine preferring a combo of western/eastern/holistic. I did this with my son when he was undergoing cancer treatment as well.
I refused Tamoxifen. Now, I was 21 and 22 at the time. I also have kept all my female parts. So I have had a period, and estrogen in my body for the past 17 years. The side effects from the tamoxifen far outweighed the benefits for me. Heart disease and osteoporosis run in my family. I did not want to go into menopause at 22. Plus the increased risk in uterine cancer. (funny as that is what they are worried about with me right now...but that's a different topic)
I also made the decision back then to NEVER get pregnant or have another baby again. My radiation oncologist agreed. The doc I saw in November also agreed that pregnancy was the greatest natural risk for recurrence and for breast cancer, as that is when the breast tissue changes the most. She says most docs don't voice that opinion, because it's not a very popular one. I cringe when I hear of women having a baby after a BC dx. But that is again, my opionion.
My cancer grew like wildfire when I was pregnant and had the additional hormones raging through my body. But it deals with the regular amount of hormones fine, as deomonstrated over the last 17 years. The doc I saw in November actually gave me the okay to use HRT if and when I have to lose my ovaries or when I go into menopause. Now, she was probably talking about rx, man made ones, but I will ONLY consider bio-identicals that are plant derived, and the lowest dose that still gives me a quality of life.
There are standard protocols with BC treatment, based our path reports, age and family history. But we also have to take into consideration our own bodies, our own lifestyle and our own beliefs. All cancer treatment is not black and white. So it's important to do your research, remember that your doctor works for you so to ask the tough questions, and then to listen to your gut.
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Dear Sandy:
Thanks for the info on the nipple guards. I can't believe he told you 4 months. OMG. You will certainly have to have a large supple of those brown nipple guards. Can you buy them in the stores? Yes, I was pretty disappointed when I saw the flattening around the nipple when it use to be round. I am hoping that improves. How long after surgery does the nipples start to shrink. Mine are very prominent (no complaints) and two weeks out they are the same size.
I have a question to anyone out there. I just got a questionnaire from the Center stating since I was all through with my reconstruction they wanted to know my experience with the center. I just thought this was kind of strange. Wouldn't they want to see first after everything is healed that everything is ok or that your happy. Does this mean if you want any revisions your time is up? Just wondering.
MelanieI can't believe that your scars are already fading. Mine look the same. What kind of vitamins are you taking? Are you putting anything on the scars next to the nipples? Melanie I have had the same problem with calcium. Every kind blocks me up. My only salvation is acidophilus - Pearls - once a day.
Sassie
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Thanks Spring and PlainJane for sharing your experience about stage 2. I will ask Dr S about additional lipo when I go in March. Like you said, it wouldn't hurt to ask. I don't need it on my tummy, where I would like it is my thighs and upper legs, that is where all of my fat it at. Since he did the HIP flap on me instead of the GAP, it is higher up and didn't know if he will go lower like on my thighs with the lipo.
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