NOLA in September?
Comments
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Karen, Yes, please call super soon. I am concerned about you. Love, Tam
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Hi ladies
I have posted on this thread in the past, when I was trying to appeal my HMO to pay for out of network benefits, aka an SGAP at NOLA. I appealed all the way up the hierarchy to the Washington State Insurance Commissioner's office, but was ultimately denied.
So now I have different insurance, that does provide out of network benefits, and am scheduled to have a hip flap with Dr S on Jan 11! I'm sooooo excited! Can you put me on the calendar, Springtime?
With 667 pages on this thread, I can't imagine going back to read it all! I appreciate the tips in the "intro" page by Springtime. I do have a local friend who had a DIEP last year with Dr D, so she has good info about the Center and Hope Lodge. Liz put me in email contact with a few ladies who have had a hip flap.
Right now Katie is working on figuring out flight arrangements for me through Mercy Medical. Haven't talked to Vickie since she looked into my benefits long ago. I need to talk to her about arranging my end of payment...we have a HUGE out of pocket maximum. When I spoke with her previously, she told me, "we can work with you on that". Any tips on how to go about that?
Thanks, and I'm so grateful to be able to be a part of this thread! Can't wait to see my name on the calendar at the beginning!
Suzanne0 -
Sorry to report bit i am back in st charles hosp...my left flap has failed and must b removed today...juat waiting for them to come take me back in. I am sad but it will b ok...says they can do a gap in a few months down the road.
Maggie20 -
Maggie- I'm so sorry to hear that. It is a loss that'll take time to come to terms with, but once you start planning the next surgery I think a lot of that stress will go away. It helps to know these doctors have so many options at their disposal, and to know that they won't stop until you're happy.
Fingers crossed for quick healing from here on out.
-Brenda
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Mags, I am so sorry to hear you have a set back. Betsy also lost a flap and went on to have another that was successful. I will wish for a great final outcome for you.
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Welcome back Zandy! I sent you a PM.
Maggie, I'm so sorry to hear the flap has failed. But thank goodness you still have options. Take gentle loving care of yourself so you can heal for the next one.0 -
Maggie, Wishing you speedy healing physically and mentally. That is tough. Keep your spirits up, you have fought hard for this- you will get there!
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So sorry to hear this, Maggie. Rest well.
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Maggie... so sorry... I did lose my one flap... had nothing to do with blood supply, but due to an open incision and one thing led to another. They brought me back in and re-did the right side using my abs. It all worked out fine. Luckily for me, I had my bilat MX, GAP in July 2011 and less than a month later had a wound surgery and then DIEP... so three surgeries within a month. My philosophy is that failure or problems can happen anywhere (less likely in NOLA) but the big difference is how its dealt with.
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Maggie so sorry!!! Big hugs.
I guess I have to call because I have received no pre- op instruction and I am due up for Stage 2 before Ann Alive...
Oddly I am 12 weeks out from stage 1 today and last weekend I noticed my left hip looked really puffy and I had about 300 ccs aspirated and I am back in compression : (. DR here watching me says it will probably need another, trying to compress the heck out of it. This is the side the drain fell out on it's own after a week - never snagged nothing, just came out. I had just started to try a slow jog...
Thanks for sharing everyone.0 -
Maggie, so sorry to hear about he flap, but glad you were still in NOLA and you could be well attended to. I am sure you will have a positive outcome!
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Maggie2~
Very sorry to hear about losing one of the flaps - you have many thoughts and prayers coming your way from all.
Another one of Dr. Massey's patients (Glostagirl) also lost her flaps. But in the end, she stuck with Dr. M who is taking great care of her. You may want to PM with her.
I second what Betsy said - unfortunately outcomes don't always come out for the best (BTDT), but having a surgeon who stands by you makes all the difference physically and emotionally.
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Maggie, I am so sorry!! My heart aches for you as I can imagine your disappointment. (((hugs)))
Sweet, gentle and healing hugs to you all.
Pinkheart, I'm sorry I didn't mean to forget to respond. I still am taking pain meds when I need them but went to my PCP because my pharmacy stuck their noses in where it didn't belong, but thats another story. It took me longer to heal from stage 1, but I think the pain from stage 2 is in a different way a little worse for me. I didn't wear compression for the past two days and I can't get over how lumpy and bumpy by thighs and knees are. I seems like the skin is stretched out and I just can't see how this will get better with time.
Has anyone tried a diuretic to help alleviate thigh swelling? Or massage therapy? I'm gonna call the center tomorrow and ask some questions. I just hate to feel like a bother. It doesn't look like my butt lift and fat grafting back here took.
My work sent me home today as my legs were killing me and my abdomen was very bloated and swollen, but I've heard many say that's normal and happens to a lot of women.
I am just SO thankful for this board & all your encouraging advice and support!! Some friends who just don't get it are really getting on my nerves like this is just cosmetic surgery. UGH!!!
I'm gonna rest and get my legs up.
Again, Maggie I am so sorry!!!
Hugs ladies!!!!!
Chelle0 -
Chelle~
I hear you! Similar issues with getting more oxycodone from my PCPs office because he was on 2 week vacation and his colleagues thought I just had a simple boob job. Thankfully, my PCP apologized for them.
Also, have a few family/friends/coworkers that needed to be educated of the fact that this is NOT a cosmetic boob surgery, but that I have been beat to hell the past 18 months by BREAST CANCER. Asked them when was the last time they had a 12 hour surgery with microsurgeon repairing the aftermath of tumors being scrapped from chest wall, implant failure, radiation rot, and prior PS screw ups, then transplanting half their butt to their chest. Not looking for sympathy, but just some folks out there need to get educated and quit being so ignorant.
Don't stop until you get the results you want to feel good (emotionally & physically). Especially since going to NOLA because that is what they are known for. Your DH sounds like mine about all the surgeries, but it's still your body.
Maybe compromise and take a break from all this BC crap, go on real vacation (and hopefully not to New Orleans
), and then figure out what areas might have improved some (kee up the hope) and what else still needs work and than put surgery on the calendar in the future.0 -
Hello Maggie - Again I feel for you. I know the dissapointment all to well from what I went through with failed implants, failed tram flap, wound in my new flap and the healing and time it takes and the yearning to be whole again. But be glad your at SCSC and grateful to be taken care of right away by the BEST and knowing it will all come together. Time does pass.
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Pink, I am so very tempted to copy and paste your second paragraph above and send it to certain family members myself.
Maggie, I am so sorry as you must be on an emotional roller coaster right now. Please let time heal and let it be your guide as what or when ,you decide to do next. Be kind to yourself and know we are all here to support you when you need it.
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Maggie, I am so sorry about your flap. Sending prayers and gentle hugs your way.
I agree with the friends not understanding this "plastic surgery" that we are putting ourselves through. It seems hard to educate them sometimes.
MartyJ, I hope the casino was kind to you. Hugs your way.
Chelle, try not to stress.....take time to heal and be kind to yourself. I know that you will get things worked out.
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Maggie- I am so sorry to hear you lost a flap. This is hard. We are here to support you.
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Oh Maggie, I am so sorry. It must be very sad now, but it will be okay in the end. You will be restored - its just a matter of time. It's just going to take another step! It will happen, believe it. This whole thing is a journey.... but there is an end, and if you ask the ladies here, you'll find they think it's worth it! Hang in there honey.
Zandy, CONGRATULATIONS!!! I added your Jan 11 surgery above. YAY for changing insurance companies! Welcome. You'll find the women here full of recent info and support. ALSO, I see you are in Seattle WA. My daughter lives in Seattle and we will be out that way at the end of December. Staying on Port Townsend for Christmas week, but will be in Seattle the weekend after - if you want to meet up! (as "in person"!!!) PM me!
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I got the final word from my RO that I need radiation. I am really disappointed that I have to have my post Stage 2b DIEP breast radiated. But it is what it is. Like everyone else, I want to be DONE. I don't have a treatment plan yet. The good thing is my tumor markers are normal and my MRI was clean. The tumor board was in agreement, especially due to my age (41), that being more aggressive is the right way to go. The point is to have me cancer free, after all.
Stupid little microscopic amount of cancer cells found by dumb luck.
Springtime, I know you sometimes wonder if you should have done radiation. Just think if you would have to do it after 2b! It all seems so random and that, really, there never seems to be a right answer. My RO and I agreed after Stage 1 that there was no evidence that radiation would benefit me. And now here i am. I've been spared a lot of grief (like having immediate DIEP), but I seem to be getting a large serving of surprise a little too often.
I will say no one, not one person has given me grief about my reconstruction. I think they are all too scared that I even had to have a BMX to say anything negative. Plus seeing me go through chemo. My heart goes out to those that need to defend themselves.
Chelle, you might want to consider a bromelain supplement. It's an enzyme from pineapple that is supposed to reduce swelling.0 -
Hey everyone...good luck to this week's NOLA patients. Healing vibes to all the rest trying to recover at home.
Well it looks like I am not going to get the 2B I finally succumbed to done before the holidays. I have been on a cancellation list for about 6 weeks and said I couldnt do it any later than Nov 15 so that I will be ready for a big trip. We splurged and booked a trip to Hawaii for our family about 6 months ago. It was to celebrate being done with surgeries and to give my kids something fun since last holiday break I was out of commission after a long stage 2. It was a pretty crappy 3 week break for 3 young kids. So I told them this years break will be awesome! I desperately wanted the surgery before the trip but it doesnt look like it will happen. And since there are several trips coming up, I can't do it now til mid March. The ab lump, while considerable reduced after physical therapy work (which I am still doing) is going get some work done. I think my breasts are not as reduced or lifted as they could be. But after the FORCE conference I have certainly considered leving them as is. I never got on after to tellnyou all about it. But I was completely mobbed at the show and tell room. And when I had other NOLA grads show they were mobbed too. People could not believe how good they looked. It was very gratifying. Since I am bigger an the scars are on the underside, many people thought I had no scars at all! I am certain threre are 10-20 new people headed to NOLA and another 10-20 who were sure they were going to do implants who are now thinking differently. I referred them to this discussion thread and gave my contact info. To several people. By the time I showed in the main room, I was already late tonged to NOLAs private room where I had sent all the peoe in the main show and tell. So then I had to show and tell again. And the consults were lined up for hours waiting to see one of the docs.
Since I did all the BRCA surgeries I went to panels on post-surgery discussions and men with mutations and other cancers I am at risk for. It was sobering. To think I did all this but could still get killed by pancreatic cancer or melanoma is just disheartening. But it is always great to hang with other people in the same situation and I met several women from this board in person and that was awesome! Wish we could all have a big party together. Maybe one of these next FORCE conferences. I know we rely on this a lot when in the middle of surgeries but most of us never completely give it up so we can keep these friendships and help the next ones coming through.
So that is the FORCE update. Will likely be new sisters joining us as there always are!
Keri0 -
Paula,
Have you considered getting another RO opinion? I know many women now who don't get rads when they have small amounts (microscopic) lymph node cancer. When I look back now, I wish I opted out - I had no cancer in lymphs at all (3 clear removed) but the mass itself was "massive", so they recommended it. They don't tell you this. Rads has a permanent effect on your range of motion, muscles, etc. I wish every time I do yoga that I had skipped it. It also can cuase cancer later, down the road. You may already be decided and resigned to this, but you may find others who tell you it is not necessary for you. Just saying.
Betsy had a similar scenario, I believe, and was told she didn't need it. I have a friend locally who was told "it was up to her" she could have it or not (at which point I told her if it was me I would OPT OUT!!).
Hang in there. One way or the other, you will be DONE!!!
KBodie, it will happen when the time is right! Thank you for being such a great advocate for other women...
Spring.
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Spring, I will have to consider the second opinion. To have Dr Stolier, my RO and the tumor board tell me I need to be aggressive and have radiation....it's daunting to consider not doing it. I already have a bit of lingering range of motion issues from the BMX/ALND in spite of extensive PT. The thought of it getting worse...ugh.
Keri, thanks for sharing about the FORCE meeting. I've always wondered about the show and tell. I can't imagine what a boost it would be to have so many impressed with your results. I can't imagine what a mob scene it was!0 -
Paula... It is true that I did not need radiation by having the MX, but the difference here is that you had the MX and chemo and still had a trace amount of cancer. If it were me, I would have the radiation in this case...
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Maggie, I am so sorry about this.
Hugs and prayers for you.
TTay0 -
So today I went to my local BS for a follow up appt... and she has suggested seeing her every 6 months for 2 years and then once a year... She said that after a MX, recurrances are usually skin level, especially with skin sparing MX... So she will monitor me that way. Said that MRIs really don't show the chest wall, so its not really a great tool for follow up.
I know we had discussed previously what to do after we are all done... so that is the latest from my doctor.
By the way, she had very nice things to say about my recon... and was surprised my rebuilt nipple was rebuilt... she thought it had been spared. Good work Dr D.
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Goodness, I haven't been on in a few days and feel like there's so much going on.
Maggie, So sorry to hear about your situation! The fact that bdavis has been through the same thing and is ultimately still glad that she did it says a lot for persevering for the end result. Thank goodness that our NOLA docs are capable of doing various kinds of flaps. Many of the ladies in the DIEP thread have surgeons who can only do DIEP... if a flap fails, they're out of luck. Hang in there and know we're all thinking of you.
Paula, regarding radiation, is there a chance of using internal radiation? I read about where they can put radioactive seeds in the exact location of where the cancer was. If that's possible, I would think that'd be much less damaging to your breast. A temporary setback, but this too will pass!
Kerry, don't feel bad about posting that you're doing well and are active; that's not the least bit offensive. I know that posts like that gave me confidence when I was trying to decide whether or not to have the flap surgery. And inspired me to become active during my own healing. I liked knowing that some of the ladies (I think Nordy & Betsy) were skiing within a short time after their stage 1. Everyone recovers at a different rate, but once I knew what was possible, it was good for me to put a little pressure on myself to get moving.
Prayers and hugs to those who are healing and/or having surgery soon!
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Hi all, haven't been here in a while. I've been struggling with the decision of having a baby flap added to my DIEP (June 2012) or to just be happy with what I have, and not take the risk, which is a big factor for me as this was my re-do after having experienced an SGAP failure in 2009.
I have decided not to have the baby flap. I'll still go down for a stage 2 procedure on the same date of 11/13 but won't be hospitalized as long and can go home sooner. Yeah! I'm happy with this decision, no looking back!
I was very sorry to hear of Maggie's flap failure and sent her a PM. It is a devestating loss which takes a lot of strength to get over. Healing hugs to you Maggie.
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Betsy, On Monday Dr. D told me the same thing re: BRCA2 follow up after PBM & flap recon. He said I just need an annual clinical exam - no mammograms or MRIs. Yes!
I am still sore and bruised but am so glad to have stage 2 "behind" me. I was hoping to lose some drains tomorrow but while the output is less than 20ccs, the stuff is not looking clear; still dark red and thick.
Hope you are okay, Maggie. Thanks for the prayers Jenifer and everyone.
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Marty J tomorrow!
Nov 9 - MartyJ - with Dr. Massey in NOLA - bilateral diep, stage 1 at Fairway.
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