NOLA in September?
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I am so happy for you Pam! Thanks for hoping all went well with me, but my stage 2 is next week!...lol. Must have been your happy drugs talking girlie! Keep us posted!
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Ladies,
I've been away for a few days, lots going on!
Pam, NO FAT NECROSIS!!!!! OH THAT IS SOOO SOOO SOOO GOOOOD!!! And no implant and no DIEP, right??? Woot!!! Thank you God!
Warrior, we are all good here. Very busy! Our youngest is picking a college for next year, lots of excitement. We will be empty nesters! I may run around the house naked!! Now that I have such a great bod and all. LOL
2T, I will add your stage 2 above. I can't believe we're into listing JULY surgeries!
I need stage 3 also. I need tattoo and I think fat injection on the rads side, which is demure by comparison! We should coordinate and get a big group, like we had here in late March, Early April. You ladies sound like it was GREAT to meet up!
Spring.
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Pam...woo hoo!! I am so glad you got wonderful news and are doing so great!!
Sara...When I had my CTA scan during my stage 1, they found nodules on my lungs which had me scared, but when I had my next scan 3 months later, it turned out to be nothing to worry about. I think at NOLA they are very thorough with their CTA scans and look at every little thing, so hopefully yours is nothing ot worry about too.
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Okay I asked this question before but I never got anything from my CTA does that mean they didn't find anything ???
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Minnesota- no way should you feel bad for posting about your post-op adventures! They don't make me feel bad at all, and I'm sure they don't anyone else, either. I for one enjoyed reading about your escapades. For whatever reason, I just haven't had good luck with feeling well after either of my stage 1 surgeries. I actually have a high pain tolerance, but it's not even pain that keeps me hotel-bound, it's that I just felt horrible (esp this last time, b/c my new breast was sooo swollen).
Thanks to all who responded about the drain pain. I was thinking it didn't seem normal; I haven't seen anyone talk about them actually causing real pain. :-( It's not coming out at all; the stitches are really secure. It also looks great- no redness or sign of infection. It's just in such a sensitive place, so that whenever I bend to sit, or move my legs at the hip in any way, it screams at me. I hate to call the Center b/c I feel like I bugged them enough this week with the crazy fungal infection thing. My drainage is dropping way down, this week it dropped 10cc per day--but the total was still at 40 as of yesterday. I doubt they'll tell me I can pull it, but I honestly don't think I can live with this for another week. Thanks for the neosporin tip (I forgot now who gave it, and can't go back to view the last page, but thanks!)--I will try that for sure!
Holtbolt- you're sooo right. And I have done that, and it sure has helped. Thank you!
Sara- I pray this turns out to be a big fat nothing.
Take care all.
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It is the time of year to decide on benefits at my job, and I just signed on the dotted line to put lots of $$ in a FSA starting May 1, so I believe I am now committed to this flap sugery. Yikes. We have even tentatively picked out a date, though I'm not officially scheduled yet.
Nordy, my kids seemed to have survived the lunch and breast talk:) Actually, I think it is really a good thing for them to see other women who have had the surgery or are planning it. It seems like it normalizes it for them and makes it less scary. They took my BC diagnosis pretty much in stride and I felt like this was partly because I have 2 close friends that the kids know well who had BC several years ago, and they see that they are fine.
Minnesota, I'm really sorry as well that I didn't get to meet you!
Dejaboo, I am SO happy for you. Even though we are complete strangers I was on pins and needles for you:)
Sarah, how nerve-racking. Good thoughs and prayers coming your way.
is the scan everyone talks about a CT scan done pre-op to locate the blood vessels?
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Greetings
Pam, I am SO happy for you. Ypou deserve a break after the past few months you had.
My stage 2 was pretty calm. I felt like I was desecrating their beautiful work by wanting my breasts smaller, but the new size fits me much better. Not that I am a small woman --I am 5'7" -- but they fit me better psychologically -- I feel more like me. (A friend told me that if I was 20 years younger, I would have kept the larger size). They also removed the dogears. Now if I can ever get rid of the compression garment and the seroma, I will be on my way!
Regards
Margit
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Minnesota- don't feel bad! I was honestly just curious how anyone could do so much. It seems like i've read more than just you getting out and about. I guess it makes more sense that you stayed in a different place so got to get out to see different things than I did. I managed to get out once a day most days so maybe I'm just crazy and really did as much as you! I know everyone heals differently, I'm glad some people are able to get up and out, makes me feel hopeful for me after stage 2!
I'm feeling like SHIT with these antibiotics. I've been feeling better and better every day and this z-pack is kicking my ass, i'm sleeping like 15 hours a day.
SO happy for those of you who got good results from path reports! Thats so scary, the waiting. I never heard anything about mine so I'm like Jamie assuming that no news is good news?
I have one drain left and am hoping to pull it this weekend. I'm looking forward to wearing the compression to be honest because I have about 2 inches of my tummy that is open and the NOLA nurses said the compression would make it go back together. It's been 3.5 weeks since my surgery so that seems about right tohave no drains finally.
I am having issues with b ras. I'm still wearing the ones they gave me, but I am about 44DD so its hard for me to find anything with no underwire ad i dont want to spend lots of money since the size will change with stage 2.
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Melinda-
I also ended up with large flaps (36G at first, now 36DD-DDD). Try the "Bali Double Support Lace Wirefree Bra with Spa Closure". jms.com has them in plus sizes. The cups are not molded, they stretch (so they fit odd-shaped flaps) and it's a relatively cheap bra. I got a bunch on sale at Macy's recently for $16 each. Do a google search for the bra and you'll be able to find the place selling them the cheapest right now.
Finding bras after surgery was probably the most frustrating part of the whole process, so I'm glad to help with recommendations when I can.
-Brenda
P.S. onehanesplace.com has them for $20 right now.
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thanks brenda!! thats extremely helpful
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Oh, I was just looking around the JMS site... looks like there are other cheaper options there as well. I never hit that site in my search because they start at 38 and I need 36. Looks like there are a couple of JMS brand bras with stretch cups for $12.99.
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Jamie....I would take it that everything is fine, but if you want to be sure, just call the center to find out...or ask when you go for the second stage.0
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((((PAM))))
So happy for you.
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I know I shouldn't be thinking about Stage 2 before I've even gotten through Stage 1, but I have a question for everyone:
Because I have summers off from work I am hoping to have Stage 2 exactly 11 weeks after Stage 1 if they will let me. I know I have to wait and see how I feel and recover after Stage 1, but do any of feel like you could have done a Stage 2 by 11 weeks or is that an unrealistic idea?
Margit! I'm so happy to hear that your Stage 2 went well. I'm glad you're back to a breast size that feels more like you. Heal well.
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Laughlines~ My stage 2 is at the end of the Month at 13 weeks but I could have done Stage 2 this week which is 10-11 weeks IMO. I feel fine but we all heal at a different rate.
I was one of the ones that was up and moving but I think it was because I kept the On-q ball. Once it was gone I was toast but I was on my way home so it was all okay. I am imagining that stage 2 is going to kick my backside.
Camiam~ I had drain issues like crazy. They felt like a match was burning me at the opening and every step was painful. Once they were gone I felt wonderful...okay well as great as I could feel.
Margit~ Glad to hear that they were able to get you to a size that you are happy with.
Melinda~ I went to a local hanes outlet and explained to them that I need a wireless bra to fit my new girls. It was a wonderful experience because I stood in the dressing room and they brought bra's back until we found one that fit. I think I am in a bali brand and while there are only a few colors it fits and feels great. I think I paid $52 for 3 bras. I am waiting until after stage 2 to buy some more.
Pam~ WHOOOO for not having an implant or a FN
I am so happy that it sounds like your stage 2 went awesome. Now rest up.....0 -
I forgot you had kept you onQ Jamieh, I bet that did make a difference!
Thanks for the tip on the outlet.
Has anyone gone and got fitted for bras after all of this? I am really interested in going for a professional fitting when i am totally done just so I know for sure what size I really am. I always see articles about so many women wearing the worng size bra. I think that after all we've been through we deserve a nice fitting bra! I honestly cant wait until I can buy aa real bra after all of this. It;s so surreal to think about doing.
For my stage2 I was thinking of doing it about 11 weeks but now am going to wait longer, for mileha to have stage 1- we're hoping to get stage 2 at the same time. Has anyone on here tried to gete scheduling like that before? We thought we could be support for each other and maybe bring a mutual friend for our caretaker and still have some fun.
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Thinking of you Pam during your Stage II. Hope all went well. Post soon so we know how you are doing.
LindaG
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Melinda - When I bought my Big Bra to use to protect my new nipple, I went to TJ Max and got a fancy pink and black one in a really big size. I couldn't find one that size cup without underwires, so just removed the wires when I got home. I don't know if that's enough to remove the problem, but then the bottom was soft and not able to put as much pressure on the underside of the breast, which is I guess what we are trying to avoid. I think you should definitely go have a professional fitting when all this is done - talk about surreal! Everyone will be exclaiming over how beautiful your breasts look and how could you possibly have had a mastectomy!
Laughlines - Maybe you could just go ahead and schedule it, and then see how you feel, and re-schedule if necessary. It seems like they are always changing the schedule around at the last minute, so I wouldn't think it would be that big of a deal, if you decided you needed more time.
Jaimie - I think that On-Q ball may be one of the explanations! I kept mine, too! When Dr. T was discharging me, he asked if I wanted it removed. I asked him how much time I had left on it, and he looked at it and estimated about 3 days! I don't know if our bodies absorb this stuff at different speeds or if it was because, at one point, we noticed the tube had been inadvertently closed off - I don't know for how long. Anyway, after experiencing my first stage 1 before the advent of these great balls, I said I would absolutely keep it! I know some gals are happy to be rid of the extra encumbrance, but I prefer that over pain! Really, I just put the strap over my shoulder and pretended it was a very fashionable Easter purse. Believe me, there were way stranger things to see there on Easter than my "purse." We didn't remove it until the day before I flew home. Jinger didn't have as much left in her ball when she was to be released and opted to have it removed. She was not out on Bourbon that night! When I saw her at our post-op she said that the ball being removed had made a huge difference in her pain level. While in the hospital, she was way ahead of me and showering herself the first morning and everything, and all dressed, and hair and make-up great, and I looked like the walking dead! And Jaimie, last time I had stage 2, I had the onc-q ball for the first time, so don't assume you can't have it then. I'm sure it depends on what you get done. If you ask for the ball again, I'm pretty sure they'd give it to you!
Pam- I hope you're out listening to jazz somewhere tonite!
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Laughlines.. I did very well for my stage 1 and Dr S gave me the choice in coming back in either 2 or 3 months for stage 2, and I chose to wait the 3 months (which was exactly 12 weeks), so I could be fully healed from stage 1. I don't think 11 weeks is unrealistic at all as long as you do well during your stage 1.0
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Hey Pam--give us the details! Lipo? Lift? Other? Hope you are totally happy and enjoying life in NOLA!
Thanks to all for the well wishes...I feel better today after I talked to my oncology nurse. A lot of folks end up needing to monitor small cysts that never would have been found if not for scans for something else...and yes, the center does the CT's pre-surgery to identify perforators.
The Center is getting more organized about getting out path reports and CT scans...They are going to start having people sign a release of information at the time of the test to be able to provide reports directly to your oncologist. If you haven't gotten reports I would call...they are tracking down my August CTA so my doc can compare it with the latest one. I also had called about my path report and they faxed it within a few days. I do think that no news usually means good news--but I learned the hard way on my mammograms to always get my own copy of reports. My cancer actually showed up 6 years earlier--but they mistakenly said the mass was from a previous biopsy (which I never had!)--and that interpretation kept carrying over year after year until a new radiologist read the films. If I read the actual report, instead of just the little postcard saying all was well, a lumpectomy would have sufficed...Be your own advocate Ladies!
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Hey Pam--give us the details! Lipo? Lift? Other? Hope you are totally happy and enjoying life in NOLA!
Thanks to all for the well wishes...I feel better today after I talked to my oncology nurse. A lot of folks end up needing to monitor small cysts that never would have been found if not for scans for something else...and yes, the center does the CT's pre-surgery to identify perforators.
The Center is getting more organized about getting out path reports and CT scans...They are going to start having people sign a release of information at the time of the test to be able to provide reports directly to your oncologist. If you haven't gotten reports I would call...they are tracking down my August CTA so my doc can compare it with the latest one. I also had called about my path report and they faxed it within a few days. I do think that no news usually means good news--but I learned the hard way on my mammograms to always get my own copy of reports. My cancer actually showed up 6 years earlier--but they mistakenly said the mass was from a previous biopsy (which I never had!)--and that interpretation kept carrying over year after year until a new radiologist read the films. If I read the actual report, instead of just the little postcard saying all was well, a lumpectomy would have sufficed...Be your own advocate Ladies!
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Quick update on my path results--it was 100% extensive fat necrosis--I know that FN often resolves itself (yeah Pam!) but in my case "extensive" equalled 11 cm x 7.5 x 5.5 and weighed 160 gms (almost 1/3 of a pound). I'm so glad Dr. S said "get it out of there!"
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Sara - What a horrible mistake by that radiologist and thank goodness for the new one! I have a somewhat similar story, tho not nearly as serious, in that my cancer type was misdiagnosed at first, changed once, then changed again. My oncologist continued to refer to it as the type first diagnosed, and perhaps because the treatment would have been the same in either case, the misnomer continued. I didn't find out what kind of cancer I really had until I finally read my own pathology report about a year later and after I had my first reconstruction. Recently I got copies of all my medical records, and eventho the original diagnosis was noted as "amended" after Mayo read my slides, every report or doc visit after continued with the original label. The change didn't start showing up until like the last 9 months, when I started visiting various docs with questions about the type of cancer I really had and that I was considering PM. Yes! We have to be our own advocates!!!!!!!
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Warrior, boot camp is going well, thanks! I'll be there tomorrow morning if it's not raining. More than boot camp though, I am loving working privately with my trainer. My back is so much more comfortable now, and she even has me running. I ran 1/4 mile yesterday without stopping, which I feel really good about since it's been about ten years since I last ran. She's really helping me with my back, which gives me a lot of problems due to moderate scoliosis. We were working on isolating the lat muscles the other day, which support the shoulders and keep you from hunching. It's sad to think about women who sacrifice these core muscles for breasts unnecessarily.
Sarah, will definitely pray for you.
Please keep Alaina in your prayers as well. She had a bunch of tests today.
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Ok that's got to be the main difference- that onQ ball. I wanted it out of there ASAP because it was annoying the shit out of me, but maybe not such a good idea lol!
I pulled my last drain last night yay!! SO I'm now in the girdle...which is good and bad. BUt the reason I was so anxious to get in it is because I have about a 2 inch opening on my tummy incision. NOLA has said to just keep iodine on it and that when I started the compression it will get better. So now that Im in the girdle I hope the sucker closes.
Sarah- that is INSANE, I've heard of people getting misdiagnosed but that one is major.
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Camiam, I had some extremely painful drains after my stage I. The pain was so bad that I was taking Percocet just for the drain pain--nothing else really hurt! I took gauze pads, folded them to about 1/4" thickness, and then taped them up against the point where the drain came out of my skin. I then taped the drain over them, and received instant relief. Seems it was the movement of the drain and pulling on my skin that was causing the pain every time I moved. Maybe you can try this and some Neosporin Plus!
2tzus, have you tried propping up your legs with a couple of thick pillows under your knees? I was sleeping on my back for almost three months, and that kept me from being crippled with back pain.
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Margit - So glad to hear all went well!!!
Pam - I am again, so happy that you did not need a second stage 1!!!! wooohooo!
Sarah - My CT scan also showed some cysts in my liver and kidney, (I started freaking out that I had polycystic kidney disease) AND a hemangioma in my liver. I had to have a f/u CT scan at 3 months, then my doc wanted to do a second one another 6 months after that. I didn't want anymore radiation this year - w/2 ct scans and 3 x-rays, so we compromised and I am having a f/u US in May for the hemangioma on my liver. My onc also said, so many people have so many of these things, but where we are being scanned more than the average population - ours get found and then given our history, they want to follow up on them! So, hang in there and try not to worry.
Laughlines - why am I thinking there was someone on here that did their stage 2 at 10 weeks??? I agree that you can schedule it, then change it later if you need to. The hard part is not changing it to a later date, it is getting it earlier, so it would make sense to have that date held for you, then you could always put it off if you want/need to!
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Pam that is great news about not needing an implant and no FN. I bet your girls look perfect.
Melinda I am so sorry that you have had a rough time of it. Nordy and I both picked up a bad case of bronchitus that hung on for a good 2 months. It was not much fun coughing with a diep.Your resistence is a bit lower after such major surgery but things will improve and you will get your strength back. Listen to your body and get plenty of rest but also try to get a walk in.
With stage 2 my drain exits were right on the zipper line of the dominatrix outfit. OUCH!! They were a pain, I placed pads around to help cushion the area and that did help.
I am really confused about the different instructions I am hearing about. When I had my stage 1 last Sept, I woke up with the dominatrix outfit and was told to wear it one week longer than when the last drain was pulled. For me that was 7 weeks since I left the hospital with 4 drains. I was also told not to pull a drain until it was below 20cc for 2 days and I had to wait another week to pull the next drain. I was also told no side sleeping for 6 weeks to ensure the flap was fully functioning. If it is not in your instructions I would call the center to check it out.
Hey Bev I think the Sept gals should have a big reunion back in NOLA and we can all go and have our tat's and have some well deserved fun.
Stephanie
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Stephanie - I agree on the Sept. reunion - but technically I wasn't Sept! It was August when I met you at your consult and I was stage 1! But, hey, I will crash your party anyway, if nobody cares!!! I have contemplated having my tats done locally, but I had so much fun in NOLA this last time, I would be tempted to go back! (Also, I IM'd you back on Facebook... did you get any of them???!!!)
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I have also had drain pain and issues. Last week (week 6) my right drain went up to 60! then they both were putting out at 45. Last night my left drain came out almost all the way and wasn't suctioning anymore (made a mess all over my pants) I called the Center nurse and she told me to go ahead and pull it the rest of the way out. I'm just hoping I don't get waterbed butt like some folks have! The drain on the right is doing all the work now, and I'm in week 7 with an output of high 40's! Yikes! Oh yeah, back to work on Monday, ugh!
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