NOLA in September?
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Ann alive...nice that will be resolved befote you leave. I'd call it 1B! Also I itch from some pain meds. Fyi.
I am at airport and rwturning home (on cell phone). Esmarelda...I'll add your Oct stage 2 once home.
I totally agree with the restuffing analogy. And otherwise...i feel like a mx removing skin nipple and areola is like an amputation. Honestly. But the good news is that everyone can be restored. Thank God....0 -
Hi Ann,
Read the news early this afternoon. Sent you a PM. I'm hoping everything will work out on today's revisions before you leave to go home. Sorry you are having those problems. Praying things will be to your liking today!
Cherrie, hope you will enjoy your upcoming vacation!
Well, I now have a breast reconstruction date.
October 2, 2012, Stage 1 - left side Stacked DIEP, right breast lift, Dr. Dellacroce
I'm a bit nervous but decided to go ahead with this. I fought like hell thru a mastectomy 5 and 1/2 years ago, in having to go thru that and I will fight like hell to have my breast back in the near future!
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Naturegirl2, Jenlee, and Esmerelda, I added your October surgery dates above in our list.
There are three of you in early October, you all should figure out if you'll be at the same hospital!!:
- Oct 2 - Naturegirl (Stage 1)
- Oct 4 - Jenlee (Stage 2)
- Oct 5 - LAStar (Stage 2)
Ann, let us know how it's going. I still think this is a good thing that you are getting this addressed before going home.
Esmerelda, it is normal to be nervous. This is a big surgery. But you will be restored. Those of us here feel it is worth it! You are in THE BEST OF HANDS - the best place in the entire world, and you will have a wonderful outcome. I see over and over again, no regrets. Scheduling is good and now you have time to contemplate. If it's not right for you, you can always cancel.
Here is a consult yesterday and a surgery tomorrow. Good luck CH986, and hope it went well Sassy!
- July 23 - Sassy43 - Consult with Dr. S., NOLA.
- July 25 - Ch968 - Stage 1 bilateral hip flaps, Dr. D., NOLA
Spring.
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I'll check in on you in NOLA, Naturegirl, if you are up for visitors! The hard part is done for now -- you have done your research and made your decision. You are going to the best, and you can rest assured about that. Now, enjoy your summer! You will have a recovery period in Oct and Nov, but now is the time to enjoy your body, get strong, and get out and do some things that you've been wanting to do! Don't spend your time on the internet looking at breast reconstruction photos!!!
Love and hugs from a woman who is sick and tired of her recovery period (but feeling better every day!) 0 -
Thanks Springtime! Your words of encouragement mean a lot to me, they really do! I think I have made the right decision. I will be whole again. I can once again think about going without a bra. (I'm not very big) and will not look lopsided when I don't wear one.
LaStar, you too are very kind and encouraging. Yes, maybe you can come and see me if I'm up to it! That would really be nice! I'm thinking about what my plants will do without me during recovery time. I'm hoping we do not have any/or many freezes this winter. I grow many tropical plants. I'm a big plant anthusiast and an avid gardener! I'm hoping for you a speedy recovery period soon my dear. Let's keep in touch okay?
Wondering how my friend AnnAlive is doing. Prayers going out to her. Hope all went well Ann.
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Thanks for the well wishes, all. The quick revision, perhaps a stage 1b, turned out much better, with left side reduce to be more symmetrical with the right, including removing skin necrosis. We were out at noon and went to lunch before returning to the hotel. Wed morning we start the trip back to Florida.
Did any of you have bruised skin above the abdominal incision, below the belly button? It has been bluish and cooler today, yet I'm sure Dr. S must have noticed at surgery. I think there is necrosis at the central part of that donor incision -- looks black and he said to keep swabbing it with betadine even after a week of treating the other incisions. He didn't outright say why, and he didn't call the breast problem necrosis in our presence -- his nurse (Celeste) came back with a consent form with the skin necrosis wording.
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Ann, I'm glad your 1b went well; it's encouraging that you could go out to eat afterwards. It sounds like we have something similar just over the center of the abdominal incision. There was a scab and as it comes off, there is some blue/purple bruising underneath. I did have my abdomen checked yesterday by an interventional radiologist. They did an ultrasound and he would have drained it if I'd had a seroma. But my self diagnosis was incorrect, no fluid, nothing to drain. Still just post surgical swelling in my abdomen, not exactly flat. But he did look carefully at everything and said it looked very good, and they didn't think it looked as swollen as I perceive it to be.
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At times, i feel like my own species until I check in on this thread and get the reminder that I'm not alone! No feeling woe is me until I catch up on some of what you gals are going through, been through, contemplating doing, and on and on and on. I put my two sense in at times and feel like my two sense matters when I post here. Just trying to pay it forward because I have found something strong here to help me get through some stuff. Good golly, the internet was dial up for most customers when I went through this whole cancer crap on my shoulders in the late 90's. There were no online support boards, it was good old fashioned go to a support group meeting and I just didn't have time for that when dealing with treatment, surgery and three rambunxious little boys I was trying to raise at home back then. I keep hoping that I can bury the diagonosis that never feels like it goes away with this reconstruction choice. It sure feels like I have been restored with DIEP. I really feel like I have the gals back. It wasn't like that with implant reconstruction. I love the analogy of unstuffing and restuffing pillows and wish I had done this from the get go. I don't think it was an option then yet. I was offered tram, but wouldn't do that with a little one at home that I needed to pick up for years after reconstruction. On another note must add that I am jealous of the women that can live without reconstruction at all too as someone else here mentioned. What strength they are to me, especially today when I am feeling pouty about recovery. I am so frustrated. My house is a mess, my husband is being a jerk, my grown kids are overwhelmed with the effects of the void in our home from my recovery and it just sucks. Breast cancer and all of the treatment and surgery about it sucks. Kudos to the gals that went through this reconstruction fresh out of chemo too. All of you women have more strength than you can imagine! I know I have it too, just not today! That strength gal will be back for me soon too but I think we all deserve a day or too of pouting sometimes. There, enough said. Thanks for listening everyone.
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Anita, your surgery was exactly one week after mine and you sound just like I felt one week ago. I had HAD IT! The past 5 days have been a remarkable turn-around for me. Today is exactly 5 weeks since surgery and it was my 3rd day without pain meds and first day without ibuprofen!!! I was a little emotional today but felt like myself too. I got work done, did some light house-cleaning, cooked dinner (wow, was my husband happy about that), and went for a nice walk. I tried to drive but I need to stretch and get some mobility back. I couldn't imagine feeling this much better last week. All the ladies before us have described it, how it feels like it will never happen...until it does! Your frustration means it's close! Hang in there!0
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...54 pages of attachments and a three page letter... And insurance is still turning me down for any kind of testing that might even remotely be related to lymph node transfer...
. I am kind of.... Done.
Anita - sorry to hear you are feeling down... It will pass. But you are allowed to have a down day... Or week... Or whatever time you need! Lots of hugs. ((((()))))0 -
Anita, hang in there girlfriend. It DOES get better. I am 8 weeks out and feel about 95% back to my old self physically (except for the numb sensations, of course!) I am so sorry you are having such a rough time with husband and kids. Sometimes I think it's harder on them - that they can't bear to see us incapacitated and do they act out. As you get better, I'm sure they will too!!
I just went to a breast cancer support group last night for the third time... And it was ok. Most of the women there are between 65 and 85 years old and are in a MUCH different space then I am. They are brought to tears about me and how young (39) I am. They mean well, but I realized last night that I don't want people crying over me. I dont want to be in 2-hour discussions about how this "monster" can come back (and has for several of those members). I agree, Anita, that I feel much more hopeful reading THIS thread then sometimes interacting with other "survivors". Of course, we are not constantly talking about the devastation of a cancer diagnosis or our genetic frailties, and their aftermath. No, this thread is focused on something very important that helps us become RESTORED. And that is a very big deal. Thank you again, Springtime. (And if anyone has recommendations for other threads that do the same, I'd love to hear them!)
(((((Nordy!))))) I am SO sorry. What bullshit. I can understand why you might be "done". It's exhausting to try and prove your medical need only to be rejected again and again. If you want to talk and vent - I am here! Whatever you decide to do - continue to fight or hang up the gloves - we've got your back. I had two thoughts reading your posts: I wonder if the LE work that Dr. Massey is doing is just SO new that the insurance companies are just behind the curve still. And that perhaps waiting...another year and re-submitting would give them a chance to join the world of 21st century medicine??? I also was thinking about Dr. Massey's upcoming lecture in Arizona (I think) and was wondering whether you could get a transcript of it to then forward it to your provider as surely she will be talking about the latest findings and successes.... I'm sure you've thought of all these things and are just utterly discouraged and DONE with it all. It MUST be just a matter of time, though, yes? Our insurance companies have got to see what the future (it's actually the present!) holds regarding LE treatment... Eventually!? Does anyone know of any insurance companies that have covered lymph node transfers? Perhaps those companies would share their diagnostic/medical necessity decision process?? Damn! I'm sorry, I'm getting all "problem-solving" and you very well might be done. I am so sorry you are having to go through this (again). I am sending a big hug and much peace and grace today.0 -
Nordy,please give your attorney generals' office a call.They were super to me and were going to help me fight my HMO for out of network recon.I only decided not to fight because we can change insurance for next year.They were confident that they could help me.
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Ach, Nordy, know the feeling all too well. It sometimes feels like blow after blow for something that is logical and necessary. Never heard of an insurance company responding well to either of those things! Sort of an insurance oxy-moron. I'm not telling you anything that you don't already know, but give yourself some time and space and if you choose to look at it all again, like Jen said, we've got your back ... front and sides, top and bottom, too! You have been a pillar of strength for me since I started on the Forum ... like to think that perhaps there is some return in some small way from me to you. Perhaps it is my stubborn Scots-Irish nature sent your way, perhaps it is reminding you of Rascal Flatts most excellent song "Stand" that says it all about our journeys, perhaps it is just another ear to listen and heart to empathesize with you.
Maggie
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Nordy~
I'm so sorry to hear about the insurance crap, because I know how much you've put your heart into this, and are seriously in need of this in hopes of improving your quality life that you and other patients deserve. I second everyone's advice to maybe wait (another year??) and check out if insurance is starting to accept this EXTREMELY important procedure for primary lymphedema patients, and secondary (such as breast cancer). Do you know if insurance approves it for patients with primary lymphedema?
Perhaps you can find out through Dr. Massey or Dr. Vasile if they can please keep you up to date on insurance acceptance of this lymph node transfer procedure.
I will be possibly pursuing this as well in a few months. I will keep you posted as to what comes of my situation.
Peace & Blessings always to you!
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Hi everyone!
Just got back to "normal" after our visit to NOLA and consult with Dr. S on Monday. Everything went great. He was so nice and made me feel like a person and not a number. It was a refreshing change. Liz is checking on some possible dates for either hip only or stacked diep, depending on how much my hip fat weighs. I am 95% sure I want to go through with this, the only thing holding me back is the recovery with the pain and the hip drains. I know in my heart what i want to do, i guess i am just gun shy about going through yet another surgery.
I was wondering if any of you could share your experiences about the actual flight flying home. Were you okay sitting there for the entire flight, how was it getting through the security? I am also confused about the hip drains. I understand why i need them for such a long time, but how is it having a compression garmet on over them? Where do you put the bulb part of the drain under clothes? When you pull it out, how soon does it close and until then, I am assuming that it will leak? Im thinking that the only way to sleep while having them in is in a recliner? (I'm a side sleeper
) Any input would be awesome. I think I just need women who have gone through this to ease my fears. AnnAlive- I think i was in an examining room when you were there. You might have been Dr S. patient right before me. I'm bummed we didnt get to meet. I hope your flight home was uneventful and you are on your way to recovery.
My thoughts and prayers go out to all the other ladies going through all of this. At times I think we have all felt all alone, but then i log on and am assured that there are many of us to lean on for support! Thanks
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Why are you so afraid of the drains?
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Sassy -- I live in WNY so our flight times would be about the same. I was given a wheel chair to take me through to the gates (much quicker through security!!) and then was well attended by the airlines. Of course, you need to have someone with you, but I didn't find that the flight was unduly uncomfortable either time (Stage 1 and Stage 2), though Stage 2 I had more bruising from the lipo. That's what pain meds are for, but really, no fears about the flights. Fly an airline that will take care of you. Continental first time and didn't make that mistake the second time. Second time Southwest and they really couldn't have been more attentive and caring, even when I had to change planes.
Drains really aren't all that big a deal. Yes, they are under the compression garment, but you wear padding on top in case there is a leak (not likely) and the bulbs are worn usually in a sort of belly-pack around the waist. Many of the other ladies on this forum have had other clever ideas, and I also used the small pouches with velcro that I had had for my mastectomy (I was delayed reconstruction) to hold them in.
I am also a side sleeper, but I quicky got used to being propped up semi-recombent with pillows under my knees, sleeping essentially on my back. I didn't need a recliner. And the drains don't hang out so they are rolled on. Trust your mind and body to make the necessary adjustments!
By the time you pull the drains out, there is little left to leak and I found that my "holes" quickly closed. I was still wearing compression and used the ABD pads in case there were leaks. I was back to work with one drain still in and just wore the bulb under looser tops and suit jackets (I am an exec so had to "dress nice". Hardest was after Stage 2 when I had the long compression garment on and mostly had to wear trousers, but it was winter in WNY (you know about that in Michigan!), so I really didn't mind.
And don't apologize for asking questions. That's what we are all here for. It is perfectly logical to be nervous and to have no end of questions. I thought the Center staff and Dr. D. would think that I had more questions than a 3 year old, but everyone was patient in explaining. Everyone's journey is a little different, but you can be assured by all of the positive things you hear here ... true dat! (Little NOLA patois on ya!)
Maggie
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Sassy...
I flew Continental and had no problems.. I actually flew home and then back down 2 weeks later and then home again (all with drains)... it was fine. They tell you to walk the plane length once during the flight to avoid clots, so that wasn't a problem.
About pain, I had NO PAIN at all after my hip flaps, was off pain meds in about 3 days. So don' t worry about pain. If you have pain, they give you good drugs.
Drains.. I had my hip drains for 8.5 weeks, and the compression garment actually helped kep the drains from wiggling around. I also used ABD pads to padding. And then when I pulled the drains, the left hip leaked a little, but I kept the ADB pad there for a couple of days (still wearing the compression garment for a week post drains). I used a little over-the-shoulder bag to hold the drains.
Sleeping... I did not really use a recliner (maybe only for a night or two) but I also arranged a bunch of pillows around me, and then at about the 4 week mark, I could sort of roll to the side, even with drains.
NORDY... so sorry for your insurance problems.. I wonder if enough people submit for coverage eventually they would cover it. What do the doctors say?? They should be just as asnxious to get it covered... god for you and good for them.
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Nordy.. have you read this article?? http://www.nytimes.com/2011/06/21/health/21lymph.html?_r=1
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Nordy, the breast cancer community and LE seem to be pretty large and supportive. This might sound silly, but maybe after you've had time to process this disappointment, you might start one of those petitions on change.org to get insurance companies to cover this procedure for women. Maybe 50,000 or 100,000 signatures would get their attention. Also, you may have already done this, but have you written to the top exec's of the insurance company? State insurance commissioner? As my husband says, sometimes when things don't go my way, I can get a bit aggressive, but sometimes it works! Sorry, like Esmerelda said, I'm thinking about how to fix it and what you need now is support. You're always here for everyone and we're here for you.
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I was at my new ObGyn this morning, someone helped get me in with the best in the area. She agreed that I should be under surveillance for uterine and ovarian cancers at least twice a year, so I had a very thorough pelvic ultrasound. I also had a rough spot on the skin "down below" and needed to hear someone tell me again (2nd opinion) that it isn't cancer. Because really, the thought of having my entire "Mulva" removed (if anyone remembers the Seinfeld episode) was even more terrifying than breast cancer. Relieved to learn that she's fine! Next step, colonoscopy.
Anyway, this well-respected doctor was incredibly impressed with my breast reconstruction, and I'm only seven weeks out. She just kept saying, "beautiful work," over and over again. Nice to get validation like that... She congratulated me for having the guts to disagree with the local medical community, follow my own instincts and to seek out the best. So everyone here should get credit for doing the same.0 -
Thanks for the reminder, Jenifer! I just made my annual exam appt! MULVA!!!! bahahaha!
I just saw my local BS's PA and she was impressed with my new breasts.
She aspirated the hip where the drain failed last week and got 230 CCs of fluid! It was not as bad as I'd feared (I'm a big wimp about needles) since my hips have a lot of numbness around the incision. 0 -
Some movement forward I think.... Center called today and confirmed they talked with my insurance and confirmed my husband's new PPO plan has out of network benefits. Have to fill out financial document as I've read many of you had as well. If I had not read posts here I would be in a total panic right now after hearing the initial costs. It is still unsettling because I don't know if we can afford it until I know what they'll come back with but at least its a step forward from where we've been. They also have to get the surgery preauthorized by my insurance--those words make me uneasy as well but I understand its just normal procedure.
Taking one step at a time.
Question for the group- For those that did go through the financial document did the Center ask you what you could afford after completing the form or did they tell you what the cost would be?
Nordy- I echo the other comments here. Insurance just sucks sometimes. This thread has really, really helped me keep pushing forward to pursue NOLA. You are one of those that kept me logging in here and reading your positive posts. You strike me as a very strong individual and great inner strength to keep pushing forward. Thank you again for your posts on this thread.
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Nordy- I am so sorry to hear the outcome of your insurance appeal. Maybe when a little time passes you can try some of the things suggested here. I would also be very interested to talk to someone who had won and appeal for a medical procedure or treatment that was classifiec as "experimental" by an insurance company- to see exactly what it took. Possibly talk to the people at the "Patient Advocate Foundation." (I have not used them myself but was given their name as a resource by a friend who works for a nonprofit patient advocacy group. There is no fee involved.) They might be able to give you some advice in terms of what the next step should be. (I think they will take some cases on and advocate for patients. Even if they aren't willing to do this they could advise you in terms of what you could do yourself.) Just and idea-
http://www.patientadvocate.org/
Sassy- Pain: Like bdavis I also had basically no pain with GAP surgery and, as she said, if you do have pain they will give you drugs that work.
drains: I had drains for 4 weeks and used the blue pouch that is given to us at SCSH to hold them. I just wore loose shirts. When the drains are pulled there is a small hole remaining that closed up in a couple of days. A very small amount of liquid leaked during those few days. I wore the compression garment for at a week after the drain came out and I just place an ABD pad over the little hole until it healed.
Flying and going through security: It is easy and very doable. I used Southwest or United when I flew from NOLA to DC. If you tell the airlines you will be flying after surgery they will try to give you seats that have easy access. (Southwest will put you in the first seats in coach. I can't remember where United placed me.) Again not really necessary but nice. I asked for a wheelchair when I arrived at the NOLA airport and was wisked through security and treated like a VIP. The Center gives you a letter stating you have had surgery. During my trip after sage 2 surgery a guard wanted to pat me down. I said no, telling her I had just had surgery. It wasn't a problem at all. I was taken into a booth (right next to the screening area) and unbuttoned my shirt to show the two women guards. I offered to open up the compression bra and they told me it was not necessary. The guard told me she had had a mastectomy and reconstruction herself. Then she spent a few monents telling my husband that he needed to pamper me. I could easily walk - I used a wheelchair because I didn't want to avoid a situation where I might need to stand for a long period of time going through security.
Sleeping: I am a stomach sleeper but of course I needed to sleep on my back for a while. I just used my regular bed and pillows. I felt the surgery disrupted my sleep/wake cycle. I got a script for sleeping pills and used a pill once in a while to help me sleep.
Willy5js5- I relly like your description - feeling like your own species. At times I feel the same way.
AnnAlive- I am so glad you are happy with the results of your "1B" surgery. Like you I would rather deal with the problem quickly as opposed to waiting until a stage 2 surgery.
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Besa... I recently appealed to my insurance company who denied a MRI after MX and I hadn't had any other tests. They called it experimental and therefore didn't cover it. I wrote a letter and attached the MRI report that said follow up was recommended. My letter was not about medical research, but more about what I should be entitled to as a cancer survivor and the ability to remain a survivor. I briefly told a story about a friend with a recurrance and how without monitoring the chest wall, I was suscepitible to this too... I noted also that mammograms did not work on me, and certainly wouldn't work now that I had a MX.
In the end, my letter was really about the human side of things, and less about the medical side. And they overturned the decision and covered it. They did say that next time, I need a mammogram before the MRI... that this was a one time approval. I wrote with the thinking I needed the sympathy of the insurance agent, and apparently it worked. Clearly there was no medically necessary reason for the MRI.
Granted this was a $2800 MRI, not a node transfer procedure, but just because something is experimental doesn't make it fruitless. And if there are proven success stories, the insurance company should cover it. There was a time that nipple sparing MX were experimental, and now they are commonplace.
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Oh my dear survivor sisters, you never cease to amaze me. Thanks for your support and strength. Much better day today and I'll take it.
Nordy, the outpouring of support here for you is heartwarming. So sorry about that news.
Spring, you rock! Thanks for this group.0 -
bdavis- I totally agree that just because something is deemed experimental doesn't mean it is fruitless or not effective. I also think that getting an insurance reviewer to empathize with the situation is a great idea. One of the differences that I see is that the MRI was deemed experimental in the setting you wanted to use it in - but it is at least a test that is covered in other somewhat similar medial settings. When I read my insurance policy, the wording concerning lymph node transfer is that it is absolutely excluded in all situations - it is considered experimental and not medically proven to be effective. I don't know what it took for nipple sparing mx to start to be covered. Possibly lots of reports in peer review journals saying that there is a better cosmetic outcome and no higher cancer risk? Women writing their insurance company saying that they absolutely wanted the procedure and how much it meant to them? Did some medical organization decide it was standard of care? I just don't know how this works and what tact or combinatin of tacts is most effective. I was also able to overturn a denial of one of the preauthorization CPT codes for my stage 2 surgery. I used the same tact you used and it was resolved in my favor - but this was not a CPT code that was excluded from my policy. I wish I knew of some good "how to" book or well written newspaper article for people dealing with serious medical situation and struggling with health insurance companies. In so many ways dealing with bc has been a struggle.
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Thanks for all of your advice. I think I am letting my imagination get the best of me.
Jeskachi- I had a bad experience with the drains after my 2bx.
KerryA- We were able to meet with Vicky during my trip. She looked over our financial sheet and then asked us what we could afford. I was feeling like you when I first heard how much the costs were, but it all worked out in the end. Sending good thoughts your way:)
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Thanks for all of your advice. I think I am letting my imagination get the best of me.
Jeskachi- I had a bad experience with the drains after my 2bx.
KerryA- We were able to meet with Vicky during my trip. She looked over our financial sheet and then asked us what we could afford. I was feeling like you when I first heard how much the costs were, but it all worked out in the end. Sending good thoughts your way:)
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Good evening, Ladies.
How many and what Photo views did you have to send down to NOLA?
Thanks.
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