NOLA in September?
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YAY Ro!!!!! So happy for you!!! Just remember to stay ahead of your pain (take pills when clock says you should) and that will keep you in good spirits and able to move...enjoy the quiet time at the center, I truly think that is one of the best things..no beeping ,people walking the halls etc...rest up ....YOU DID IT!!!
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Ro, so happy to hear from you and that all went well How long was your surgery?
Welcome to the other side! The hardest part is behind you!
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Just got our plane tickets to NOLA, praying I can get the $2000.00 together before the 8th of June!!
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Thanks ladies getting the right pain med has been a challenge. I just got the catheter and walked the hall. My surgery was a little longer as Dr D. Diep2. The procedure took 9 hour. Praise God feeling better after that walk.
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Yay, Ro! You got up---you are doing great! Doing what the nurses want you to do helps keep you on track.
Dragonfly, how exciting to have the tickets! I'm sure the remaining funds will had in time. I lost my big toenail once (hiked 11 miles in apparently not well fitting boots), and I managed to survive. Good to know to stay on top of the nausea meds.
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test
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Yeah, mine would probably have hung on, it was loose but... I rammed my big toe into the wooden leg on my couch
Now that hurt!! The port procedure is pretty simple too. I was surprised that you just get a local, and are basically awake for getting it put in. No one told me that so I was super nervous. I did shave my head when I noticed it coming out. That was good and bad at the same time ya know? A tip I like to tell people is... with buzzing it, those little hairs still come out. So I was super itchy for a week or 2 because it felt just like when you get a hair cut. So I got out my lint roller, and the sticky paper worked AWESOME!!!! My daughter got such a kick out of me rolling it around on my head to get the loose hairs out. Kind of gross but you do what you need! Good luck with the chemo, it's really not so bad, and the drugs for nausea have come SO far!!! I also did get heartburn during the A/C just a heads up.0 -
ugh I keep trying to post but then I think I must hit something wrong and it disappears. I am loopy since I am back on the pain meds due to a pulled muscle that last night hurt worse than any pain I have had since the surgery. I think I pulled the muscle pretty early on, like on day 2 or 3 when I coughed, and then may have reinjured it yesterday and I tried to go off the Lortab completely yesterday before I realized that, and then last night was a disaster. Anyway, Laura, Dr D's PA thinks it is a pulled muscle and nothing more serious and I hope she is right but I am ready to have my mind back, thank you. I do not like this loopy feeling . . .
Anyway sorry to ramble but wanted to say hi to Ro and glad you made it through to this side. And also, Paula, regarding the port, I declined one when I had my cytoxan and taxotere 4 years ago, and now when I look at my bruises on my arms from all the problems with blood draws and IVs when I was in NOLA, I really have to question my wisdom at the time. I have always had bad veins as far back as I can remember, but since the chemo, they are really shot, and every blood draw or procedure is a challenge. In retrospect, I think the port would have been a good idea.
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oh, but my last drain came out yesterday, so that is good news. (maybe I posted that already?) Probably injured my muscle again when I was doing a little "happy" dance!
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Amy, you DIDN'T post that, congrats on being drainless!!
Ro!! You're on the other side! the first few days are a journey, just be kind and patent with yourself! Tool around the hall if you can. My surgery took 11 hours, so don't think yours is extra long!!
I wish I could say I loved my port, I really wanted to. I had a friend who cried when they took hers out and she keeps it in her jewlery box! I wanted to feel that way. But I *hated* mine. The best thing for me about stage 1 was getting that port out! My body just hates foreigh objects. I never had an issue with it like infections or anything, but I hated the way it felt in my when I moved. I hope anyone who gets one has the experience of my friend!!
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Paula... My blood pressure has gone down on TC, so I stopped taking my meds for now... one side perk of the chemo. Also Paula... a micromet in a node is a really really small amount of cancer. Mine was .38mm.. if your doctor didn't say it was a micromet, then it was probably bigger, and a full-fledged positive node.
About the port, I don't love mine, but I am glad I have it... but will be glad when its out too... but more because its a reminder of my cancer, not because I feel it... I don't... and my veins are healthy.
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Betsy I just looked at my path report and the node was greater than 2mm, sooo not micromet. That clears things up for me. No one says much about my blood pressure beyond 'keep an eye on it.' Mmm..kay. I guess I'm keeping an eye on it.
Can I swim with a port?? As in lap swimming.
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Cider, you can swim with a port, it's totally inside your body. No problem.
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For those just starting chemo, check out the Thread - Tips for getting through chemotherapy There are excellent suggestions there. Even in you don't do the cold caps, ask about the mittens, they help protect your fingernails. I have had zero problems with my port. Finished chemo last year, but my onc likes you to keep it for one year after chemo, so I still have it. Other than getting it flushed every 6 weeks, I forget it is there. And be sure and get the cream to rub on to deaden it before chemo...it is great! Most times I did not even feel them put in the needle. Just make sure you give it enough time. Think the box said 15 min before, but worked best for me if i gave it about 30 min......0
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Thinking of NoWords! Good luck!
Ro - Hope you are feeling a tad better today. Maybe a shower??
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Morning all, am wondering how many of you went to have a consultation in NOLA prior to surgery and how long would you advise to meet with docs, including Stolier ? all possible in one day??
I am deliberating about this, they seem to be pretty relaxed about it, but in my case prob do need to go down first to evaluate if i can get away with just diep or need to add another area in there, also the big ? for me is whether to do bilateral or unilateral....and i would like their opinion on that sooner rather than later so I can prepare myself...including possibly eating more...
btw, my surgery ( either bi or uni) would be first or second week of August..am getting insurance clearance now, rosemary
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also...can i ask for any feedback on pros and cons of uni vs bilateral when the second side is prophylactic
i realise that is a completely personal decision and governed by many things..... but just wondering about things specific to flap surgery and also NOLA docs expertise...i read somewhere that you can only do flap surgery once..is it harder to go back later and do other breast if you need to?? are there any aspects to this decision that are not immediately apparent? rosemary
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Rosemary, I just had bilateral 2 wks ago (left side was prophylactic nipple sparring) as far as pros and cons...I did it for me (wasn't med ness) I felt that because of my dense breast and having to do chemo because of other breast that I would lessen my chances of something coming back. that was a big pro for me....as far as con...well although I still have my nipple the feeling is gone..the only way I can describe it is ..when you go to the dentist and have novacane, you can still feel your cheek (like pressure) but not same sensitivity. I am still very swollen,so that might have something to do with it. I did notice last night when I was taking a shower that my nipple was erect (sounds stupid) but I wasn't sure if that would happen and it did, although the only reason I knew was because I looked (makes me sad but knowing my tissue is gone helps)
And as far as meeting with the drs...I didn't have any time and didn't consult..I had Dr Stollier and Dr Dellacroce and they were both great...I'm sure you could send betsy(bdavis) a pm and she could give you some answers about consults as when I was in the hospital, that's what she was in town doing.
It's a very hard decision and there are pro's & con's to either path you choose, but get all your questions asked and go with your gut..that's what I did and even though having to even make this choice sucks, I am happy with what I decided and I'm looking forward...best of luck to you on your journey Rosemary
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Rosemary: regarding consults, I did one because I was close to NOLA for a vacation around the time I was making the decision (and had no time pressures since I had already had my mastectomy). It was great as it took away any lingering doubts/concerns I had, most of which came from other doctors who thought I was nuts for doing it after a more or less successful implant reconstruction. But it seems that majority do not have in person consults before hand and it doesn't seem to make a bit of difference in terms of outcomes.
As for bilateral vs unilateral, this is such a hard decision for many women and seems to be a common topic on this and other threads. I had a bilateral because I didn't trust mammogram to pick up a second cancer on the non-cancer side (had a normal mam 9 mos before I found a mass). The surgeon was also concerned about some suspicious areas on that side as well. Also, frankly, I did not feel all that attached to my breasts and didn 't feel at all bad about loosing both as opposed to just one since I thought I'd get better symmetry. And finally I thought there was a reasonably good chance I was BRCA + because of a strong fam history, and this turned out to be true (found out later though).
But I know that some women feel very different about this so I think you really have to do both a pros and cons list and some soul searching. You can have a second flap reconstruction done if they take the tissue from a different spot. Minnesota did that and I bet she will chime in.
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Had a shower today!! Walked 6 laps in the hall. Should be going home tomorrow.
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Hey ladies... I got all my funding issues worked out and the airline confirmations. NOLA here I come
Can't wait!! 0 -
Go Ro!! Go Dragonfly!!
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Hi Rosemary. I wasn't sure about NOLA and wasn't about to entrust my breasts to people I hadn't met (in spite of their great reputation.) Also, I wanted them to see firsthand what part of my body they'd use for my flap. I spoke to the clinic the first week of January, flew down the following Sunday night. Met with Dr. Sullivan and Stolier on Monday morning and afternoon (they supply a car and driver for you so it's easy to get to places in a timely manner), flew home to Los Angeles on Monday night and 10 days later I was in surgery having a BMX. Also, they were able to clear my insurance in that short amount of time.
NOLA is fantastic and the fact that they are calm about your request is really a sign of their competence. They do this all of the time and it's isn't a big deal for them to arrange it all. Put yourself in their hands and you will be happy.
I chose a BMX because I am BRCA positive. I am 4 months post surgery and (hip flap with nipple sparing) and the feeling keeps improving. Dawn, I have had the same sensation about seeing my nipple erect and not feeling it. I'm happy that I still have my nipple but feel a bit saddened to no longer have feeling.
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Hi Rosemary. I wasn't sure about NOLA and wasn't about to entrust my breasts to people I hadn't met (in spite of their great reputation.) Also, I wanted them to see firsthand what part of my body they'd use for my flap. I spoke to the clinic the first week of January, flew down the following Sunday night. Met with Dr. Sullivan and Stolier on Monday morning and afternoon (they supply a car and driver for you so it's easy to get to places in a timely manner), flew home to Los Angeles on Monday night and 10 days later I was in surgery having a BMX. Also, they were able to clear my insurance in that short amount of time.
NOLA is fantastic and the fact that they are calm about your request is really a sign of their competence. They do this all of the time and it's isn't a big deal for them to arrange it all. Put yourself in their hands and you will be happy.
I chose a BMX because I am BRCA positive. I am 4 months post surgery and (hip flap with nipple sparing) and the feeling keeps improving. Dawn, I have had the same sensation about seeing my nipple erect and not feeling it. I'm happy that I still have my nipple but feel a bit saddened to no longer have feeling.
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Kathryn, can't wait to meet you in NOLA
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Dragonfly. Awesome! I'm so happy for you and can't wait to meet you too! Less than 3 weeks!
Ro - so happy to hear you're doing so well.
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I knew it would work out, Dragonfly!
Ro, I'm so glad you've been walking. When was practicing the little flight of stairs one of the other nurses chuckled, saying she'd never seen that before! My nurse was delighted when I said I needed to practice stairs the first time. The little things.
Rosemary, I did not have a consult before. I talked with another woman from my city who went to NOLA. I got a ton of info from her, and then from this board. I felt confident that I didn't need to meet the Drs. Talking with Liz and sending in all the paperwork confirmed that I was a candidate....and I knew I had plenty of belly skin and fat for DIEP. I send photos like they asked and I never heard anything about it. I think you can send photos to see what flap you are a candidate for and probably talk to the docs if anything is questionable. Another aspect was that my cancer was active. I did not have time to schedule an in person consult. I'd already met 3 other plastic surgeons in my area and I simply *knew* NOLA was where I needed to go. One more thing: I decided that if the path was easy to get to NOLA, than I'd do it. If it was too stressful, I'd go with the PS I really liked for implant. Well, the path to NOLA opened up for me without a bump. Since I trusted the docs, I trusted that their assigning me to Stolier could be trusted. I loved him, too! The day before my surgery I was scheduled to meet with everyone. They are very good at scheduling out of town patients, so I think you'd be able to do the same for consults.
I got a bilateral mastectomy because I had 3 suspicious spots biopsied (one spot biopsied twice) on my non-cancer side. My cancer side showed DCIS as well as mucinous carcinoma. My breasts were large and dense. If I got unilateral, I'd get the good side lifted. So then my concern was what if a suspicious spot developed into cancer and I'd need a mastectomy anyway. The concern was the healing of a lift scar and mastectomy scar; I guess my local BS didn't do skin sparing mastectomy. Before I knew about skin sparing mastectomy I made my decision for BMX. I did not want to watch those 3 suspicious spots forever and get more biopsies. I'm glad I made that decision. Turns out the non cancer side did not have cancer, but lots of abnormal growth. The cancer side showed a 3rd tumor and type of cancer that did not show up on mammogram, ultrasound or MRI. So yeah, those dense breasts had to go.
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Rosemary, I did not have a consult before, though some do. NOLA was a much better option than what I had locally, and when I found out they were in network for me, I didn't have a second thought. I thought it was a God-send. I got bilateral just to have it over and done with. In NOLA, depending on how much fat you have, if they don't use the other fat flap, they have to throw it away. Seems like such a waste! (This is not the case if you are doing stacked DIEP just on one breast, or Stacked DIEP/lumbar on both - using front and back)
Ro - Glad you had a shower! And are up walking! You GO GIRL!!
Dragon, glad to hear your issues worked out!!
Wonderful for you! I know you must feel happy. 0 -
Rosemary - I am another one who traveled to NOLA for a consultation. Time was not an issue for me because I had already had a lumpectomy and was getting chemo prior to anymore surgery. Going just confirmed what everyone on this board has to say. I knew immediately that I would return for my BMX. Prior to my BC diagnosis, I had 5 excisional biopsies of benign lesions. I've spent too much time anxious about my boobs so, I'm doing the prophylactic side to decrease worry. I'm scheduled for August 3rd so if you decide on NOLA we may be there at the same time!
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THank you so much for all this feedback, it is all very reassuring and i have to say that NOLA and this option only became apparent to me BECAUSE of finding and following this forum...so,.i have decided am def going to go down in next weeks, bit of a problem for me about mondays but am working thru that..altho surprising, i can see that it is not necessary but increasingly am realising that discussing with the docs there is all part of my decision-making process re one or two breasts as well and i need to make that decision and come to terms with it in the very first place... i am hoping that i have enough belly fat for both if deciding to go bilateral route, but am 38D and feeling my belly roll it feels more like only one there..in past 18 months i have put on a lot of weight and ironically in our family my stomach has been jokingly referred to as my third breast..so careful what you say! unfort much of my abdomen fat seems to be above my belly button, but am gathering from all your posts that is not going to work but gets hopefully lipoed after....Springtime, what do you mean throwing away the other fat flap? are you just talking about the other side of your abdomen? toomuch, your story pretty much is mine...hope we do cross paths, altho i may be more like second week of august and kathryn, i figured their calm/relaxed manner must be a sign of competency, but it was kind of disconcerting at same time in the context of what is being scheduled.. anyway, am completely at sea about one or two breasts at this stage, change my mind daily but i guess i have a bit of time to work it out. anyway, thank you again, i have been reading all your posts and following your stories and outcomes voraciously, and am always hoping for the best for all, rosemary
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