NOLA in September?
Comments
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Congrats Melanie, Maggie and Marty! I'm getting nervous! Not so much about the plastics, although I've lost a lot of weight - even in the past two weeks since I took the pictures - that I am afraid they'll tell me "sorry, you're too thin" like the docs at Univ. of Michigan said. (I'm 5'6" and 120). But my biggest fear is that they won't get all the cancer out. The doc doing the BMX is Dr Gray and he's just a general surgeon. I wish I could have had an oncological surgeon. I know that The Center wouldn't use him if he wasn't good but I sure am praying that my desire for a positive reconstruction hasn't been the wrong focus. I need someone who can get these TWO cancers out with the best margins, etc....
Does anyone know if they will do oncotype testing for me? I have a long list of questions for them! It looks like I'll get to see some of the area as I'm being taken to Slidell for my appt with Dr. Gray. I fly out Monday. Surgery - not sure which yet - will be on Wednesday. Not looking forward to the pain or the scars, either. But I have an acquaintance whose two yr old daughter has spent the past yr fighting leukemia. If she can do it so can I! Well, off to clean house!0 -
KLanders, oncotype testing is done if there is a question of whether you need to do chemo. If you already know you need it they don't order it just so you know your number. It takes a while, I think it was 2 weeks. I don't know why you are using a general surgeon, maybe has to do with your insurance. That wouldn't sit right with me either.
I'm getting my pathology repeated by VCU where I do my oncology after Nola. You are entitled to a second opinion. VCU graded and staged my first cancer higher than the first doctor I met with. They have a committee so its not some nameless lab. But oncotype is just one lab that offers that and it has to be mailed out, that's why it takes so long.0 -
Klanders,
The oncotype testing is good question. I would call the center. Praying it is extremely low for you. Thank God your nodes were negative!
How did your PT appointment go for your axillary cording?
My Mayo Clinic breast surgeon's business card said general surgeon, but she works 100% on breast cancer patients. So I'm sure Dr Gray will be fine. Be sure to get a copy of all your medical records for yourself. Is Dr Gray in your insurance network?0 -
Klanders,
I forgot to say don't worry at all about being too thin.
I was 5'6" at time of surgery and weighed 118 lbs. I chose to have SGAP alone (no stacking with DIEP), and will be a B cup. I didn't go to NOLA but I'm sure that you definitely are not too thin for those surgeons as they are equally and highly skilled as mine. If you do stacked you probably will be a C cup. I just didnt want to be cut across my front.0 -
My local breast surgeon who removed my cancer is also a general surgeon who only does breasts. She is highly regarded and thorough. So I don't think you need an oncology breast surgeon to assure yourself they are good.
About oncotypes. I did not have the test. That was my medical oncologists suggestion. He said with one node involved he wanted me to have chemo so there was no point to having and paying for the test. I agree that the test is used in mode negative women usually to determine if chemo is necessary. And it's usually up to the oncologist to order it. Not the surgeon.0 -
Thanks, Dr Gray is in network but the only reason I was assigned to him was that Dr Stolier wasn't available. Initially I was told I would have Dr Stolier but then that got switched on me this week. I panicked and called Dr Massey and she told me that he is excellent and that I'm in good hands so I probably shouldn't worry. Even though Dr Massey won't be able to do my surgery she has still been very helpful. What a neat lady!
I haven't been told yet if I need chemo. University of MI said that would come after the surgery. I like your idea of getting a second opinion on the pathology - I did that on my first tumor and I was switched from HER2 positive to HER2 negative.
PT appt went really well. She was able to stretch it out a bit and showed me some things to do to get the fluid moving. I also bought compression sleeves for flying - that was an ordeal! Nobody stocks 2 in size small! I would have called around first if I'd know it would take visits to 6 different stores! I only have one but I'm picking up a 2nd one on the way to the airport Monday.0 -
Thanks for that explanation besa because I think this is the first time Ive been given that. I just remember the nurse pushing it into the iv and I was out. I belive she did this on the way into the OR. I never even saw what the inside of the operating room looked like. For me, this is a good thing. I get so anxious!! I don't even remember waking up in the recovery room, just being in my room.
Motherandchild...I want to put your mind at ease. You get put under and it seems like no time went by at all and you are waking up. I woke up with no nausea and hardly any pain. It's like your best night of sleep without waking up once during the night. Except you will be groggy and know you had surgery. We are all different, but don't worry, you will do great!
Ok so I don't mind this garment thing I'm wearing but I keep getting urine on it when I pee and It is grossing me out!!! Any suggestions ladies? Dr. Sullivan told me I could get spanx shorts instead because I don't need compression all the way down. Is it easier to just pull of and on shorts? Then how do you hold the ab pads in place over the incisions? Fairway gave me an extra garment and a extra bra, which is great so I can keep clean easier.
I still can't believe I have boobs and they are mine! I had implants since I was 22 years old. It is amazing †hat these Drs. can do this! My ps here in Ca. has called me 3 times since my surgery and wanted updates. I know he is so curious to see me and wants me to come in next week. He is a very caring Dr. and I'm so lucky to have his support. I know I have rambled so much to you all but I know only us girls get it!! I'm so lucky to have all of you also!!!! Hugs!!!0 -
Klanders...I am 5ft 4andhalf inches and weighed 127 when I sent pictures to Dr. Sullivan and he said he could give me C cups. I was 130 before the surgery. I had that same fear. I kept thinking that they were going to have to do the body lift flap or a stacked flap to achieve this and I didn't want to be cut more. He was able to do what he said! Keep eating or drinking protein shakes if its hard to eat because of your nerves. You are in the best of hands in going to NOLA. If I knew about them when I was first diagnosed, I would have gone there to do the masectomy.
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klanders..I wore a sleeve on my left arm during flying also. No big deal. I don't have lymphadema but am high risk for it. It took soooo long for my arm to feel normal again after having 19 nodes removed. I believe I had slight cording too. I stretch all the time.
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Melanie.. I had no trouble wearing their compression garment and using the bathroom... The trick is to pull it ALL the way up. The crotch opening needs to hug your crotch. And make sure its centered left to right AND front to back. When I would put it on, I made sure this was all in place before zipping it all the way up. On the other hand, when I switched to the Marena brand, no matter what I did, I could not have a BM and not pull it down. And that was ok, because by then I didn't have drains. Having drains and pulling any garment up and down is really not practical. The pads fall out and the drains get pulled... Not good. So just pull it up snug and that should work.
I too was going into surgery thinking I was having the BODY LIFT, but Dr D got me my breasts with just GAP. Which was good for me, cause he later needed the abdomen to do a fix. It is amazing what they can do, so klanders, fear not... they are the best!!
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Hello everyone. My name is Barb and I live in Erie PA. I am BRCA1+ and will be having a PBMX on 5/21 with Dr D. I have been a "lurker" for at least a month or so and finally felt brave enough to join in. You guys have already helped me out so much. I have a journal (ok maybe not so much a journal as a lot of scraps of paper I will soon put into a journal) with all kinds of information I've gotten from your personal experiences. Everytime I have a question or concern it seems the next day it's brought up and answered by someone! I feel like I've been watching my friends from outside and I can finally join in and not be alone anymore. NOLA should include this website with the package they send you. Thank you, thank you, thank you, I am not worthy!
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Oh Barb. Welcome!! You will love Dr D... You are sort of my neighbor (neighboring states)... You are a month away from being rid of worry. Good choice!
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I am home from the hospital and doing good, scsh staff, drs and all involved really care!! What a great place that I will recommend to anyone I meet who is going thru this process. They ROCK!! 😘
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Barb welcome!!! Know that you are in the best possible place... both here on this forum and at NOLA. I'm BRCA1 and my surgery is April 30 with Dr. D. The women who have reached out to me have been amazing... and I have spoken to many on the phone too. I feel like I have made some friends for life..... wonderful women.
I will be happy to touch base with you at any time just PM me!
Melanie... thank you for the reassurance. I do have a lot of anxiety about all of this. I feel like I have done just about everything I could do prepare in advance... Mind, body, soul... but I have such trouble with the idea of being put out for a long time... and honestly that is why I have put this procedure off for as long as I have.
Leap of faith and trust is what I keep reminding myself... two things I'm not the best at.
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Welcome home Marcie...
So nice to hear you had a good experience!0 -
Barb, I am BRCA2+ and Dr. D was also my doctor. He is amazing and you will love him. I had SGAP
June 1, 2012...wow, I can't believe it's been almost a year since my stage 1.
Mother, you will do great!! My surgery took 10 1/2 hours which included my double mastectomy. I remember asking what time it was before surgery and they told me 6:50 am and the next thing I remember I was in recovery and the nurse told me it was 7pm. It was like a snap of a finger for me, but my husband said it was a long day for him. They will keep him updated every 1 1/2-2 hours.
Russell, I am so happy for you and knowing you have breasts that are yours with nothing foreign...yay!!!
Healing thoughts to prayers to all you ladies!!!!
It's a journey, but completely worth it!!!!
Hugs to you all!!!
Chelle0 -
Welcome Barb. You will be in very skilled hands. I lurked in the beginning too before jumping in and posting. It's all part of the process.
Nice to hear from you Marcie. Rest, hydrate, walk, and keep repeating this. Let us know how you are doing.0 -
Betsy..thank you for the info. I will pull it up more and center it.
Marcie so good to hear from you and glad you are doing well.
Welcome Barb from Pa. I was born in Pittsburgh:) Like the others have said you are in great hands and will find out so much here:)0 -
Well the waterbed butt is here...blah...it hurts. Last 2 nights have had a low grade fever...not more than 100...blah. Hoping this seroma takes care of itself. I had about 12 hours of bliss without pain/ drain...sadness abounds...just wanna catch a break and have something go my way...end of rant
Maggie0 -
Maggie - so sorry!
Melanie - Betsy sure gave a good description of how to get the dom in place. Hope it works. Just watch how you tug as the movement can cause some discomfort where the drains exit the slits. If the slits aren't in the best location to get the garment in place, haul out the scissors. You will get even more creative about the bathroom issues after you begin Stage 2.
Two drains out, two to go. Happy days!
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Oh Maggie....rant away. You sure have been through a lot. Two steps forward, one step back. Pretty soon it will all be forward. Thinking of you.
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Marty did you pull your own drains?
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Melanie - I have the long compression garment with the split crotch and it has truly not been an issue to use the restroom. At first I used the female urinal (Go Girl) that my daughter bought thinking I'd need it for the PAP flap I had in January) and that worked wonderfully - kind of made me a 'little boy' with a new toy!!! Amazing how easy to stand and pee.
Then after a bit I just tried standing straddling the toilet and held open the split in the crotch in my compression garment and it worked even better! Now, after a week, and using my upper thigh muscles to get me down and up from the toilet itself, I am able to sit while again holding open the crotch split. When having a bm I undo one side and am able to hold the whole garment off to the side while when finishing I can easily re-do it.
I was petrified of having a garment at all (Dr. Kline uses them sparingly only when really needed) but this has been a piece of cake. I have to say, the things I have worried about have truly not been worth worrying about at all. Like the NOLA Drs, our Drs who have trained extensively in microsurgery and devote their practice to helping us BC and BRAC+ positive ladies are so committed and very much patient oriented that they do truly what is in our best interest and our worrying is truly for nothing. They are a sub specialty of doctors that truly should be recognized for their compassion as well as their expertise.
I am home now, surgery went well on the 12th, same day as Melanie's and Marty's - was able to meet and spend some very quality time with Pinkheart and to attend with Pinkheart a Komen Survivor luncheon in Charleston on the day I was released, Sunday. My DIL took over when my husband flew back home to Atlanta to go back to work, and it has been quite a week. I worried so much about bringing cammies so that I could accommodate the various drains I surely would have (after reading other's experiences both on this forum and the Charleston Bound 2 - ) But, as it goes without saying, we all are so different and different things are required for our particular circumstances. In my circumstance, Dr. Kline didn't need to put a single drain on me this go round! My husband and I both were astounded!!! What a treat! Now, I am not expecting this on future stage 2's, but what a treat for this one! Major back SGAP revision and bunny tail repair, seromas gone, and dog ears removed - LONG incision - looks a lot like Betsy's from her photo gallery - but still getting over the shock of no drains!!!! Nothing really to do except get healed! No ointment, no drains, no ABD pads - certainly a compression garment (actually 2 - one to wear as one is cleaned and drying) but nothing! You had to know I had a trunk load of ABD pads, etc!)
I also want to pipe in and say what a very big treat it is to actually have some quality time to actually spend while recouping in a strange city the people we speak/type to so much during our journey through this process and new normal for us. I have been blessed to meet Marty, Bethcw, Sewanneegirl, Pinkheart and look forward to meeting more if the opportunity arises! You ladies rock!
Hugs and happy to be home!0 -
Cherrie - My handsome hero pulled the drains. He says I did so much better this time than when he pulled the hip drains after Stage 1. I have been very interested in how she inserted the drains this time. At the hips, instead of coming out at the end of the incision, they come out about an inch or so further behind thus eliminating the dog ear effect. She did a similar thing for the breast drains, though they came out in the fold area. To eliminate the batwings from the original mastectomies, it looks like she cut and excised the tissue as the bruising is different than bruising from lipo. The colors are sure changing daily. I do feel much freeer with only 2 drains. Can't wait to take a walk tomorrow!
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Fever is gone again...hope it stays away tonight. Feeling better...slight red spot on the sharkbite so watching it closely, laying low as we leave for vacation on thursday and I would love it done before the trip.
Russell..you sound like you are doing great. I had to wear my undies under the garment and just pull em out of the way to pee. My girlies do not like that fabric right up on em. Love how we share these intimate details. Haha...who else could we talk to about it? No one understands
Martyj you also sound like you are doing better..so glad
Maggie0 -
I am home from a successful stage 2. My initial surgery was nipple and skin sparring so I had a true lift, abdominal scar revision, plication, and lipo pretty much everywhere below the waist. I am very sore but other than that feel great. I have 4 drains....the 2 breast drains are coming out today, yay! I'm so glad y'all were discussing bathroom issues with the dom. I'm still trying to figure all that out! Thanks for all the great info...
Deidre
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I had no issues with the Dom, but I thought Spanx were impossible to keep clean! The Dom definitely has to be centered carefully before zipping up. I like Betsy's suggestion of cutting the opening more.
Liz called me last week to schedule the Stage 1 DIEP to correct my necrosis, and I panicked! It's for real? I scheduled a consultation in August instead, but now I'm thinking that a December surgery should be scheduled. It was a nice few weeks of being Cleopatra and floating down Denial River.
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Oh. Can't take credit for that suggestion. I didn't cut my opening. But did pull it up. Way up.
LA. Sorry you are in denial. LOL. But you are headed down my path. Might want to just get it over with.0 -
Successful stage 2 with Dr. D on Friday, DH drove me home yesterday and I made it to church today to hear him sing in an octet! It is amazing how much easier Stage 2 was than Stage 1. I mean I expected it, but so far it has been remarkably so. We had tentatively planned for me to stay in Nola Sat and Sun nights before my post op visit tomorrow but I was feeling so well, I couldn't justify the $ to stay when we only live 3 hours away.
Barb - welcome. I had a PBMX DIEP because of being high risk. Not BRCA positive but high risk due to my sister having passed away from BC after a 5 year fight with the bastard. She was just shy of 43. You will not regret this. Parts are scary and certainly uncomfortable but it has been nowhere near as tough as we thought it might be. I would do it again in a heartbeat. Such an amazing feeling to be virtually risk free in just one day. As you've read I'm sure, Dr. D and the staff at the center and hospital are amazing. You'd swear you were at a spa instead of a hospital if you didn't know better. I was honestly disappointed I only got to stay one night this time! How crazy is that?
Anyway, they pulled my breast drains yesterday before I left and that surprised me. I've still got two coming out my hips where he extended my abdominal incision around and removed a significant chunk of fat off the top of my hips. Hooray! I have very wide hips (structurally and weight-distribution wise) and if he did nothing more than that I would be thrilled.
I know he did at least some lipo on my thighs, rear, upper/lower abdomen and under my arms but I don't feel like it was a lot because I am not terribly achy in any particular spot. I hope it is more than I think! I know I have tons of fluid there because I can feel it...almost watched the sites swell over the course of yesterday and today. I guess that's normal? I didn't have a ton of bruising when I tool my shower yesterday at the hospital and I have not taken one today yet so I'm anxious/interested to see where and how much bruising I've got. I know my DH and I were/are very pleased with the shape and size of my new breasts. I was nipple-sparing and Dr. D moved those babies to where they are looking straight out and perky as anything! Amazing what they can do. What a blessing those doctors are to all of us...especially the BC ladies. They treat their patients like queens and they certainly deserve it!0 -
I suggested cutting a new slit for the drains, not to enlarge the crotch opening. From the construction, I think that might render it unuseable.
4my4 - love you re doing so well that you were able to go to church to watch your DH sin. That gave me my giggles for the day.0
