NOLA in September?
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Thanks Spring.
Jill_45 Good to hear from you. That was alot to have drained off your breast. I hope that next time it will be much less & then you will be done.
BreastcancerDiva- How is the pain -sensitivity on your hip doing?
Pam
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Pam - Thanks for asking about the nerve pain in my hip and thigh. It's still there, though tolerable during the day. It seems to get worse at night, or I'm just more aware of it then. I tried lightly wrapping my thigh with an ace bandage last night and that helped. Just the sheets moving (I sleep with a husband and 4 cats so there's a lot of moving going on!) was irritating.
I start back to work tomorrow, though I think I will be working from my home office. I've come down with a cold - thank God I didn't catch it 4 weeks ago when sneezing would have been a real problem!!!!
Spring - "3 months out of Stage 1 I was pretty good" -- great..... just in time for Stage 2!!!!
Thanks to all for being here. You make a world of difference.
Robyn
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You know Robyn...I didnt even think of my nerve pain when I asked how yours was. I just felt my area. I can say that at 9 weeks it is almost gone. Just some numbness now when I rub it
Hopefully yours will be almost gone in a few weeks too
Pam
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Robyn and Pam,
I still have nerve pain between/below my breasts, (from post Stage 1 Sept 3) but it is tolerable now. I wonder if I will ever have normal feeling boob skin!!! So ultra sensitive.
Robyn, yes, I was just about back to normal post Stage 1 when Stage 2 hit. But, then you get better and it is over, right????
Spring.
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I have the ultra sensitive skin on my breasts : (
Sheets & Clothing hurt.
It got a tiny bit better after 1.5 years (BLM) But got worse again with the flap surgery. I dont think it will ever be normal.
Maybe in a few years it wont hurt so bad. Thats my hope.
Pam
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Just an FYI- I have had a seroma on my leg from TUG flap since early September. I had it drained twice an dit kept coming back and was uncomfortable . I started a high protein /low carb diet and within 3 days the seroma dissipated........ I just hope that sucker is gone forever
the high protein /low carb helps your body get rid of excess fluid.......
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Hi Happy- Glad to hear your seroma is gone.
I started Protein powder drinks 3+ weeks ago. 35-55 gms a day. Doesnt seem to be helping me much. But I am still drinking it for now.
How many gms do you get a day?
Pam
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gonna PM you
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Holtbolt...I had a bone scan right before my chemo started last March. It is just like every other kind of scan where they inject a tracer substance into a vein in the arm. And then you lie very still as the camera passes over you. I can't remember how long it took, I think maybe 30 minutes or more because it scans over your entire body.0
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Ugh - sorry to post a downer message, but I just talked to Lanita and to my insurance and NOLA would be "out-of-network" for me with no chance for an exception. So Lanita told me I would have to pay $8000 up front to have surgery there, which, basically, means no new boobs for me. Then I checked all the other reputable SGAP docs I've heard of and they're all out-of-network. But the agent told me that my plan "doesn't do" in-network exceptions because my out-of-network benefits are "so good". Of course I just burst into tears on the phone while talking to the insurance agent. It doesn't seem fair, huh?
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Laughlines,
I was told the same thing by Lanita because my Blue Shield insurance has the same policy. Lanita asked me to fill out their financial paperwork to see what could be done. You might want to ask her about that. I think they will try and work out a payment plan with you...I know it is expensive, it's a $150K surgery, and that adds up when you're paying 30% (out of network). I have been saving up for it so I have some of the down payment, but I'll have to have a "payment "plan to pay the rest.
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Laughlines - that is what my out of network is this year (7500)... last year it was 3500... so it is going to be a struggle this year. I wish that I could have had it all done last year and had I known that it was going to change at the start of the year, I would have kept my stage 2 in Dec and worried about the hyst/bso for this year with my in-network docs. Trainertam is right - ask about a financial statement, although I don't know if that will make a difference as to your out of pocket deductible for out of network. BUT you can also ask about a payment plan. See what they have to say. You said all the Seattle surgeons are also out of network for you? And your insurance plan does not do in network exceptions? You can do a few things: 1. Write to the WA state insurance commissioner and see if there is anything they can do. 2. Write to Patty Murphy and Maria Cantwell - if for no other reason than to blow off some steam... lol...(because chances are you will just get some form letter back) 3. ask to speak with a senior worker at your insurance company and see if anything possible can be done! There is a lady in Oregon who actually got someone in politics to listen to her and they changed the law regarding diep surgery and being able to go out of state when it was not offered in network. BUT that was regarding an HMO and it sounds like you have a PPO... so maybe not the same thing. Good luck. I totally feel your pain here... I am right there with you and am trying to get my insurance to do an in network exception for stage 2. The good part is if you can get both your stages in this year, you would only have to pay that fee once. Really, talk to Lanita about a payment plan or financial statement - if this is something you really want - I say go for it if you can swing it. PM me if you want to talk some!
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Speaking of insurance crap... I see that my insurance company has STILL not paid Dr. S and T a penny for my surgery. Wonder how long this is going to go on????
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Thank you TrainerTram and Nordy! You're right, I should not give up so easily. I am going to follow up both with Lanita and with the state and see what we can do. I guess I was just in shock. My insurance has been awesome throughout my bc treatment so I just thought they'd be awesome about this too.
I knew you guys would give me some good ideas - so glad I can come here.
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I went to my insurance website added all of the charges for stage 1 before going through the insurance and it is $185,000! Wow!
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WOW -you stay away from here for a few days and it is nearly impossible to keep up. Let me apologize first, cause I know I will leave something off:
Nordy - LOVE THE BOOBIE HEADS! That is GREAT! Super funny. Triathilon - Impressed. Also I know how you feel about the DH not being with you. My Mom wanted to go with me for stage 2 and I could not stand the thought of him not being there....he is like my good luck charm, so he went and mom stayed home........but anyway, I know Exactly how you feel.
Jamieh - LOVE the " Mommy I touched your boobie's" story...super funny.
CCBABY - Drain Free....nothing like it! Hope you finally got the birthday dinner!
JennJane -Welcome back to the working world....its H*LL. But also nice to be back in a weird kind of sadistic way......it is weird to have all this behind us, sort of like we can actually start to live a normal life, make normal plans.......instead of working around surgeries.......Sorry about your team, I was pulling for Texas too.
DEJABOO - get it drained! Good Luck, feel better soon.
GIN52 Congrats on the 2nd CHEMO. You got it going on girlie! HANG TOUGH!
WARRIOR - Cancer -versary! YEAH! mine is coming up soon.....mine's nearly a valentines treat!
LAUGHLINES - Can you say PAYMENT PLAN!?! It will be worth every PENNY! I am sure the center will work with you. Tell them what you can pay, they will make every effort for you.
I am sure I have left something important out, so sorry.......got to run for now. xxoo Mel
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OH YEAH! MINNESOTA - so glad all went well. I said a little prayer for you on your surgery day! Take care. AND yes it is still cold here, but NOTHING like minnesota! I dont know how you do it?? Praying for good reports! xxoo Mel
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Can I just say DITTO for Mel's Messages? lol Update on USA TODAY article.....it looks like it will be next week sometime. Will keep you all posted....xoxo
I re-started Tamoxifen after being off it for nearly six weeks due to the surgery. I started it up again last week. The last two days I have been tired and a have that no "oomph" feeling...I don't know if its the Tamox or a new cycle that has me feeling that way....do you all remember feeling this way from tamox???
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If this wasn't so sad I could laugh. Yesterday my oldest daughter had to have an emergency appendectomy. What next!!! I am off to Houston to look after her. Check back with you gals when I get back.
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Stephanie, safe travels to be with your daughter and we will miss you at EnCourage tomorrow!
I had to work quite hard to get my special hotel room last week. There is only ONE room at the Marriott that is a corner room on a top floor overlooking the river and the French Quarter. This room number is TOP SECRET, only to be given out to CRBS patients, and it books WAY in advance.
I was so surprised when I had my surgery back in November, because my IV didn't hurt at all. Usually I feel a lot of pain when they are inserted in the back of my hand, but this was inside my elbow and it didn't hurt at all. Now I know where to have it done next time.
Sassie, let me know which shirt you want. I did a new design just before I left for NOLA and gave one to Alaina. We wore them to our lunch date with Liz. "Tough Chick" and a little chickie with a pink ribbon as his tail. I'll have to ask Alaina if it's okay that I post the picture we took together. She's definitely the "Tough Chick" and I told her that my shirt should have read "Tough Chick Supporter", which made her laugh. I went to church with her on Sunday and enjoyed the great pleasure of meeting her mother, sister and friend. It was quite an emotional day, for all of us I'm sure, as the church was having a healing service. Please keep her in your prayers.
LouAnn, I hope that infection is completely cleared up! I wish you had said something---I definitely would have shown you Dr. D's amazing work, even though I am not the best example, being a major repair job from elsewhere. Still, he has really done miraculous things for me. A patient I had the opportunity to meet in November happened to be in town for revision surgery and along with a local NOLA resident patient we did show and tell in her hospital room, and included Sally (SCSH nurse) in the fun. I think she enjoyed the chance to see what some of this looks like after some time goes by.
Laughlines, I agree with what the other ladies wrote. Going to NOLA for reconstruction is worth whatever it takes to get there!
Nordy, my insurance has not paid Dr. D for my surgery in June 2009 yet.
Warrior, I have not noticed that effect from Tamoxifen, but I know that my sister didn't feel so great while on it. She's on Evista now and has no noticeable side effects from that med. I'm likely staying on Tamoxifen for the full five years because I'm not having an issues with it.
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Stephanie- I am sorry to hear this about your dd. This is it for ER visits!
Sandy- I keep Alaina in my prayers. that sounds like a great Shirt!
Laughlines- Keep trying. I know the insurance end sucks!
Nordy- Im chicken to get Ass*pirated today. I think its going to hurt. The seroma feels rather low & I do have feeling there.
pam
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Pam, I hope the same as you about my boob skin! Maybe a few years of being left alone, huh?
Laughlines. Don't give up yet. Keep talking to people. Keeps saying how much you want to go there. Keep pushing every angle. When you get off the phone you can bust into tears, but try to get right back on it. Try not to take no for an answer.
Warrior, I had the same feeling when I started Tamoxifen back up again. Needed more sleep. I think this is one of the side effects. I will have been on it for one year the end of this March. One year only! UGH!!! So many years to go.........
Spring.
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Hi everyone, I'd like to jump in here and join the gang! I'm having diep in NY Jan 26th, it's coming so quickly now and nerves are starting in a bit! I'm staying up in NY in the week after my surgery with a wonderful woman who went through the same thing last year. I'm struggling with my packing list--wondering if I should bring PJs or just button up robes(that's on top of the list today!)
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Pam----- Ass*pirated... that is funny! You must GO. The discomfort from the buildup of fluid by far outweighs what the aspiration will be. Your doctor may be able to position you where he/she can place the needle to get good drainage but in a spot where you are a bit more numb. Plus - the tissues cannot close if there is too much fluid in there - in which case you will end up with a pseudo bursa - which may need to be addressed at stage 2.
Stephanie - I am so sorry to hear about your daughter. My goodness, when it rains it pours.
Bayyy - Congrats on your surgery date! I personally wore PJ's once I left the hospital, but loose fitting. BUT that is me and I had hip flap not diep, so it may be different for you. Slip on shoes, flip flops/slippers were a must have for me.
Sandy - I have heard that my insurance is not the only one that pre-authorizes then denies... where do they get the nerve???
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Warrior - I didn't have that reaction to tamoxifen, but it doesn't syrprise me. It's totally screwing with your hormones! But it's worth it to prevent recurrence, as long as your repro organs don't mind!
Pam - I a sooo sorry you're still having this issue. I'm worried about you and I'm worried about your behind and I'm worried about my behind...
Stephanie - Oh no! Not again!
LouAnn - Sandy loves to show off her most fabulous breasts and nips. She will show them to anyone who asks. Even sometimes to people who don't ask!
Laughlines and Springtime - Yes, Laughlines, you should persist. And who says you should wait to cry until AFTER you get off the phone?! Springtime - it could work!
Bayyyyy - Hi, and welcome to the ranks. Fellow DIEPster here.
Nordy - And who says there's not already rationing of healthcare! And by some company who answers to no one - unless the government tells them - like when the government told the insurance companies that they have to cover reconstruction! Government in health care can be good!
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Laighline I cried to Lanita 2 times. One when she told me the initial amount and once when I was sure I was going. I was embarassed for about a second because I hardly ever cry but the second time I was happy
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Laughlines, ok sounds like the crying works. !!!!
Use What you HAVE....Bayyy, I added you to the list above. Welcome! I wore PJ's in the hospital and loose Yoga pants once out. I found that "button down" was not so important, as I could get things over my head. However, long and loose tops were important, to accommodate and cover up those drains.
Minn!!!! How are you feeling? What procedure did you have to your repo area?? Hope all is well....
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Well Springtime, I posted this on Facebook... I feel waaaay better 1) because I finally seem to have gotten out from under this cold/fly bug after a week and 2) because my D&C results were NORMAL! I had a D&C, following a hysteroscopy and biopsy due to thickened endometrium probably secondary to Tamoxifen and Evista. While I was still out, the doc told my husband that "it didn't look the way I expected, but maybe it's because she's perimenopausal and on tamoxifen and I don't usually see that." I have gotten some laughs on the pleomorph LCIS threads by my observation that perhaps the Alien lunged at her from between my legs! Anyway, the doc showed my husband the pics and my endometrial wall looked all blotchy. So we were worried. But biopsy turned out to be normal and the doc said she was very very relieved. As was I!
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Wow Minn, sounds like you got this taken care of just in time or something! Glad that is behind you. One more step on the journey! Glad you are feeling better.
I went to Studio Yoga for the first time last night since August, before my Stage 1 in Sept! It was great! I had to be careful of my lower tummy muscles that were "stitched" but I was able to do it. I moved to "gentle" class for a bit, until I'm back to my usual self....
Spring.
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Congratulations to you Bayyyy!
Marcia
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