NOLA in September?
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dijfro - Wow in terms of scheduling things didn't go as planned. It can make things stressful but you seem to have handled it well. I scheduled an appointment with Dr. D between stage 1 and 2. I wanted to know what the general plan was for stage 2 and also to have a chance to think about any decisions that I would be asked to make. The Center was really nice about accommodating me. Your experience makes me feel that the appointment was a good idea. I am just not very good at "going with the flow" when I am facing a surgery.
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Debbie... I didn't get a chance to meet with Dr D before my stage 1 surgery, but had had a consult 2 months prior, so I felt it was ok... and he did see me before surgery that morning... For stage 2, I have my pre-op with him at 9:30am and surgery is at 11am... I guess it doesn't matter if its the day before or the morning of... you will and should get the same attention either way... For my upcming surgery, I wll only have a post op with Laura... wish it were with Dr D... but it is what it is.
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this is it for me, I don't think I can handle anymore. I did not have nipple reconstruction, going to do a tatoo later. I don't know how women do this kinda stuff voluntarily, it hurts and is uncomfortable, and I just want to go home
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Don't get me wrong, everyone there is wonderful and I don't think that I would get any better care anywhere else, I am just tired of being in pain. I just got off of the phone with Laura and am taking my last drain out in the morning before we leave for the airport. Just feeling sorry for myself tonight
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chin up... you are on your way to the finish line!!!!!
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Djfrro stay strong my sister! This pain will be all over soon. Hugs your way- bless you!
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DJfroo, get more pain meds!
Betsy, I will be in East Windsor and I am working too during the day. I have something Weds night for sure and reunion on Friday. When is good for you?
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djfrro - how you're feeling is so understandable. It's hard. You had surgery, you're away from home, your body has gone through a big ordeal. It's a lot to handle emotionally and physically. Thank goodness time allows us to heal on both those fronts. And, you are done! I know I feel the same way. I've had enough. No more revisions for me. Whatever it is, it is, and I will be happy for it. No more breast reconstruction surgeries for me! And you're right - this isn't about the center, the people, the doctors or anything...it's about how much one person can take. Everyone has their own point where they say enough. You have reached yours. Embrace it...and know you'll feel so much better when you are home in your own bed!
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djfrro - nothing to say, just sending you a lot of hugs (((((((((((((())))))))))))) Hang in there
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difrro - A big hug from me also. This is a lot to go through and no matter how talented the surgeons and how good the care you can get worn down. Does the center know the pain meds are not controlling the pain for you? They may be able to order something stronger for you or up the dose. You will get over this and the pain will go away.
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I am going to be at NOLA next week for stage one and I am scared to death. i really do think I may pass out before I even get there. Is anyone else going to be there? I think I am most scared about waking up and feeling I made a huge mistake. Don't get me wrong, I went to a lot of consults and Dr. D is by far the BEST--he was the only one who really listened. My head feels the BMX is right for the long run but my heart is really worn down by all the surgeries, poking, prodding, etc. All of you are giving me courage but I am still so nervous and I have never been away from my young kids this long. And the drains, do you have to pull them out yourself? Or do you have to go to a doctor where you live?
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@djfrro -- I found I was particularly vulnerable right after surgery and for a couple of weeks after. Then a brief relief and a curching blues 6 weeks after. For me, it was the meds, not healing as fast as I wanted (LOL!) and a number of late-at-night "boogeymen" who made me a pretty miserable person. I did find it helped to talk to the Center staff -- too much pain, they WILL help, but they haven't yet mastered mind-reading (wish they had! I am pretty bashful about some things!). As to your internal feelings, I believe they will acknowledge and validate them for you and that is a big deal. Today, I am hoping that things are a little brighter for you and sending all the strength and healing energy I can muster!!
Beginning to get antsy about Stage 2 for me! Have made flight arrangements (that I already have to change), got a vacation rental and am trying to make arrangements for caregivers while they are needed. So hoping I don't get one of those "we need to change your surgery" calls. I will jump off the top of my three story Victorian Queen Anne!!! LOL!
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VictoriaB - Moving toward surgery is scary. Anticipation can be way more difficult than the actual surgery and recovery. I have to say after surgery I felt relieved (my bc risk is now so much lower) and when I looked at the reconstruction I was happy with what I saw. For me it was - "yes, I made the right decision". In terms of drains, if you are having DIEP they will most likely be pulled at the Center before you go home. If you are having hip flap you can either have someone at home pull them or you can do it yourself. I had two different doctors at home lined up to pull the drains in case I needed it but in the end I pulled them myself. They showed me how to do it at the Center before I left and I also talked to Janine (at the Center) when I was at home. For me it was painless and absolutely easy to do - a nothing.
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I love the Center and think they do an outstanding job but they could really benefit by having a psychologist on board to check in with each patient. One of the nurses and I had this conversation after my Stage 1 when I burst into uncontrolled tears and couldn't stop. Most of the patients have been on an emotional rollercoster and even though this may be the last stop for many, the emotional impact remains. Having someone knowledgable to talk to is invaluable. Apparently the nurses agree that it is an unmet need and hope that more women will speak to the docs about this.
Sorry djfrro for all you are going through. I hope your support at home can help you though this. You have been through alot and it takes time to heal both physically and emotionally. Sending hugs and wishes for better days.
celtic_antique: Like you, I intended to do this next surgery solo -- finding out the Center's requirements to have a caregiver upon release and during flight home caused some frantic changes. Good luck getting caretaking set up and making new arrangements. It's easy to understand the Center insisting on this -- the unexpected is always possible.
So .... no one has any feedback on Vinnie??
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Victoria... When is your surgery? I will be there Nov 13-18... surgery on the 14th. Have Spring add you to the list
And Beverly... I am busy Thursday night for sure... some other driving around for my son here and there... when are you in town?
Betsy
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What does one do when there is NO ONE who can be there for the "required" times? Hire help? I will be staying an additional 5 days, so the flight home should be less problematic. The Center never checked last time. As to release from hospital and after post-op, I hope I can get some assistance there from NOLA friends. I am feeling so beaten up at this point, I can't even address this right now. Think I have a seroma on my hip donor site (mostly on the buttocks, so am staying in the DOM till forever, I guess. Will call Monday and send photos. Aspiration is not an option without anesthesia ... Down day following a couple cranky days. Do we really ever get back to being the bright, happy women we were before someone dropped the "Big C" word on us? I feel inutterably changed and for the worst at that ... HALT -- I think it is T.
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djfrro - Adding my wishes for a brighter day! I hope that your pain is better controlled today!
celtic - I had planned to fly home alone 1 week post Stage 2 when I learned this wasn't permitted. Since I was depending on the Center car service to get to the airport, I wasn't sure that they would let me leave alone. I didn't want the car to arrive and say if there's no one with you we can't transport you to the airport! Is that crazy? I definitely could have flown alone as long as someone met me at the other end. But I am grateful for the doctors concerns. They actually feel responsible for us, our safety and our reconstructive outcomes. Since you have friends in NOLA could you convince one to fly home with you?
Re: the seroma. I had a big one after stage I. I did get it drained because it felt heavy and uncomfortable. It was done wiith local anesthesia and for the most part the draining was pain free. It did get painful at the end at which point I pretty much said, "ok, you're done." and the PS complied!
Hope you're feeling less cranky today. We all experience those day! Hugs.
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I will be there till Nov. 16th late in the day. Besa thanks, I realized I am more focussed on my fear than on getting the cancer OUT. And I think a psychologist is a GREAT idea too! I can say that all of my friends and acquaintances who have opted for BMX have no regrets. Some had no choice. I have a choice, and I am opting to be aggressive which is probably why I am second guessing myself.
Celtic_antique, I agree, we are changed by bc. Someone in another forum was talking about that, and saying we have to move to the acceptance that we are changed as a result of bc. I am sorry you are feeling beaten up and mad that cancer has taken your happiness today. Breast cancer is a thief!
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celtic- there are medical escorts for hire. Don't know much about them. You can google it. Maybe the airlines could provide someone for travel to meet you when you arrive at the airport. Hopefully your NOLA friends can assist you after discharge, and until you leave.
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Victoria... I opted for the BMX.. and no regrets here... even after all the surgery, some complications and more surgery next week... It wil be over before I know it...
Maggie.. It is indeed a pickle. When I was there the first time, I had a friend (local) who cared for me, but had my husband fly in to escort me home... BUT they wouldn't have known the difference since I did not use the car service. You could skip using the limo... BUT if something goes wrong, it would be hard to come back to them and admit anything... How long after surgery are you flying? Maybe it is long enough that it doesn't matter. When I flew back down to NOLA for my complications, I flew alone and that was less than a month after surgery.. but then once I got there and had the DIEP, they insisted I get an escort to fly me home... and believe me, I begged...even suggested first class for pampering.... and it would have been cheaper for them then paying for a friend's ticket at $1200...
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hi all: It's been a year and a half since my simultaneous BMX and SGAP surgery (May 2010) with Dr. D in NOLA. I've felt great, have a really great set of knockers, and healed really well. I went in for a routine MRI the other day. It was the first f/u I've had since the surgery. I'd put it off for awhile (they said to get one done about a year after the surgery, so I was a little behind) since I hate MRI's so much. Well, what they found surprised me and I'm wondering if any of you have had the same thing happen: they found some leftover breast tissue in my right (bad side) axilla. It is sort of an island of breast tissue, so it wasn't connected to anything from before, and there's a margin of tissue between it and the flap. The tissue is a bit "enhanced", which is concerning. My issue is: why did they leave it, what to do with it now? Has this happened to any of you? I originally decided to do a BMX because I just didn't want to ever have to deal with any of this again - the poking, the prodding, the monitoring, etc. Ugh! I'd love to hear from anybody who's had to deal with this. Thanks so much!!
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Betsy -- The CENTER paid for your friend to come and escort you? I will have surgery on the 20th, post-op the 23rd, but will be staying thru the 28th. And it isn't Stage 1, but Stage 2. My friends in NOLA will be checking on me frequently (landlady who is a breast cancer survivor said she will send her cousin to check on me!). That is all well and good, but when do I rest with all this "checking"? LOL! I didn't use the car service except to take my husband back to the airport for the ride home and then paid the driver extra to take me out to Thibodaux. Actually, considering it cost us $150+, I guess we paid for airport AND the extra out to the country! Anyway, I am going to try to stop worrying about it ... there are enough REAL things I need to pickle about -- can you say Bed and Breakfast renovations! AARRGGGHH!! I am just hoping that after all the $$$ outlay for flights (eating one leg), lodging and a flight home that they don't up and cancel it!!
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Maggie... They did pay for my escort because this was a complication and I had to return... That is their policy... They would not be paying for stage I or II for anyone...
Melissa... That is by far my biggest fear. As a matter of fact, I flew to NOLA to meet with Dr Stolier to assure myself that he would take ALL tissue possible. Dr Allen in NYC uses Dr Stolier in NOLA when he comes to NOLA, and he said he asks his BS to retain breast fat... This comment concerned me and I asked my local BS if that was even possible without compromising the MX, and she said NO... So I asked Dr Stolier directly and said I wanted it ALL out.. and he said that that is what he does. I have to trust that is what he did, but of course there is no way for me to know. AND I have asked if I can get an MRI at some point and my MO says it isn't necessary... How did you get one? And did insurance pay for it?
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Re: Vinnie----it's http://vinniemyers.com/home.html There is discussion about him starting in NOLA on this thread. I guess the docs heard about him (how awesome he is!), met him and hired him. I think he goes to NOLA once a month. I don't know the details. I think Donn is still there and I'm guessing if one wants Vinnie, one would have to request and schedule accordingly. He's posted here before, too. Can't wait to meet him! Check out his work on his website.
Victoria, the anticipation is MUCH worse that reality. I've been told this all along my C journey and it's true. Work on relaxing whatever way you can. For me it's deep breathing, getting enough rest, prayer, meditation, exercise, writing...I really have to work on it! I also have to admit I kind of enjoyed pulling my one remaining drain! It was easy. I did (do!) have to do a lot of planning regarding my young daughters when I'm gone, but it's do-able. I did get suggestions here to leave a note w/Hershey kiss for them each night, stuff like that. If my memory serves me, I think someone even Skyped! I went for BMX when I only needed one side done. But my non-cancer side had a lot of atypia (I had 4 biopsies) that I could not handle monitoring until it turned into cancer. Plus if I was doing one side, I might as well do the other! That's my take. No regrets. Reading this thread also calmed my fears.
Djjfro I hope you are feeling better now. I'm a little worried about hardly seeing Dr S for my stage 2 next month (surgery on a Thurs as well), but it will be what it will be. I have planned a post op visit on Monday instead of leaving right away.
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Betsy... you were way more proactive about this issue than I was. I did a TON of research and asked a lot of questions ahead of time (I'm a nurse, so the medical part wasn't difficult for me), but the consideration of breast tissue being left behind never even occurred to me, so I was shocked to learn it was still there! ugh!
In terms of follow-up, there seems to be some controversy, about whether or not to get mammo's or MRI's going forward. I've researched this and asked a lot of radiologists and consulted with a couple of different oncologists in my area, and the general consensus seems to be that mammo's would be dumb, but a yearly MRI would be a good idea. There is always the potential for some creepy little cells to be left behind and lurking around somewhere, no matter how hard they scraped at the chest wall and the anterior portion of the breast. I did a skin- and nipple-sparing BMX. I ended up having to go back and remove my R nipple, since there was more crap in there they found later. Not a huge deal, just a bummer, since my breasts looked so good with my nipples intact - ha!
Anyway, I'm just so bummed out about the leftover breast tissue. I called and spoke with Dr. D's nurse, Jeanine, who asked me to send hard copies of my MRI and ultrasound, and the reports, which I did. Dr. D. is going to consult with the BS there and then they're going to call me next week, to let me know what they think.
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Sorry for the bad days (weeks) some are having. Celtic, djffro....it seems unfair that we give ourselves over to the physical pain and discomfort and then have to be bombarded by the emotional as well. I hope you have a better week. It will pass but while you're in it, you don't know when and it fels crappy while you're there. Keep on the boards. And if it lasts, get a referral for a psychologist. I met one a couple of times before surgery to make sure wasn't spending so much time planning in order to avoid the emotional work. And we did talk about coming to terms with being given this body to walk the earth with and how to cope when this body isn't what I want it to be in terms of health.
I felt like I did make some progress but got sidetracked by other issues like dealing with unsympathetic family, etc. And victoria, this might be good for you too, to know that I, and many of us, just have moments of panic and sadness as surgery nears. After my pre-op, as I was getting dressed, I just lost it. They had gotten me in late and I am sure I was tired and it felt rushed and I even had to ask my husband to leave the room so I could bury my head and cry and sob. When I finally came out, Stacy said oh honey you don't have to do it if you don't feel ready. And that just wasn't the problem. I was ready and had waited so long and really just wanted to get it over with. I never doubted for a second that I should do it. I just felt sad and overwhelmed and vulnerable. And I just had to break down and cry. Happened again day 7 after surgery when I had a pre-op with the GYN in NOLA and after he got done examining me, I cried all the way back to the hotel. Just sad that I had to deal with this.
And I did wake up the day after surgery and think, omg I can't believe I did it. I just had my breasts removed. It wasn't regret but amazement that I had the courage to do it and that when I looked down, there were warm soft breasts still there. I don't think regret is common but that doesn't mean there isn't sadness that this issue is facing us. I really worried about my kids and planned and prepared. I skyped0 -
I have great news. All my tests were negative. There is hope in Christ!
Adey-I am out of network too. I applied for a Citi credit card that is 0% interest for two years and placed the balance on another card.
Got to go! Weekends are so busy with kids in sports. But, I wanted to check in and catch up with everyone. I also watch Korean soap ops on Sunday evenings! i know it's crazy but it's addicting.
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Melissa... I am curious what they say. It is common knowledge that getting 100% of the tissue is extremely unlikely, but of course we hope they get as much as they can... I had a RO tell me I should get MRI afterward for 5 years, but my MO disagrees, so I am unsure who I could ask who would agree with me (and my RO, who I didn't use).
When you say ENHANCED, what do you mean? There is something suspicious? I don't see your stats, so I am unsure what else you had done. I had a 1.9cm tumor at 11:00 right under the skin surface, and had one microscopic positive node... had 6 tx of TC, no radiation... Of course, I asked about regional recurrance not having the radiation, and was told not to worry about it.. that chemo would have taken care of any rogue cells... I believe that to a point, but if that is totallt true, then why would I have needed rads had I not had a MX? And with tissue left behind, there opens the door for local recurrance. Dr D told me that he had a patient come in after a MX who had significant amt of tissue and they had to redo the MX... this was inresponse to my concern about getting it all.
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sorry that posted without my permission...getting too long-winded... but I did skype quit a bit. It was a pain to get it set up on the computers and ipad but worth it in the end. Video calls for free! The kids got busy and didn't feel like chatting a couple of nights but they really liked chatting in the hospital. My husband carried the ipad all around the room and showed them the photos of them and what the hospital looked like and he carried it down the hall to the nurse's station and they all said hi to them. Anyway, long story short it, they did fine. And I was uncomfortable enough that first week that I didn't think to miss them too much and my in laws kept them going on their schedules that they were busy too. Not sure how old your kids are...my are 11, 9, 6.
Also, I am world's squeamy-ish person. I cry when an IV goes in. And when they said I could pull the tube, I tried to wait for my dr. friend but thought I should just try it and as I started pulling I realized I was numb enough I couldn't feel a thing so as long as I didn't look, I could pull it all out. Shocking that I could do it as I never imagined I could.
One more product recommendation...order a pack of Pink Pockets. They stick to your clothes and hold drains. They can be washed several times and NOT lose their stick. I put four on four different tank tops (one on each top, only had one drain in going home, but pockets easily hold two), right at my side, rib level. Fish the tube up the side of the compression garment, out the top of the girdle, put on the tank, pull bulb through armhole of tank, and tuck in the pocket sitting right there on the outside of your tank. It sits below your arm a little so there isn't as noticable of a bulge. Wore those tanks tops under various other tops, shirts, jackets, and popped the drain right in there. Washed them 5-6 times each and very much enjoyed peeling them all off once the last drain was out! No stick left behind. Much better than the belt pouch thingy after the first few days and I breezed through security. Won them at a drawing at the FORCE conference-- loved them. Pink-Pockets.com
My two cents for now!
Keri
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mchas - Before I left NOLA after my Stage I, I asked about routine follow-up after my hip flaps. Dr. S said yearly MRI. The BS said that the vascular pattern is different on breast MRI after flap surgery and to be sure that the radiologist is experienced at reading MRI's after flap surgery. She said otherwise there are often things picked up that aren't really a problem. Here's hoping that's the case with your MRI. We all know that all the breast tissue can't be removed but one usually thinks that what will be left behind in microscopic. It sounds like what you're reporting is a significant amount. That's scary. I'm trying to envision it but I don't understand how there can be an island of breast tissue, then a margin of other tissue and then the flap. What would the margin of other tissue be? Please let us know when you hear back from Jeanine.
Betsy - I am still being followed yearly by my BS from my lumpectomy. She ordered a breast MRI in July right before I went to NOLA to be sure that my other side still looked clear so I could forego the SNB. She asked me to come back in 6 months and told me that she would be ordering yearly MRIs. I confirmed with Dr. S that this is what he recommends. Maybe you can follow-up with your BS and they can order an MRI for you. If not them, maybe your gynecologist. That's who always ordered my breast screening tests before BC. I'd try both of them. I definitely wouldn't wait 5 years for an imaging study!
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