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NOLA in September?

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  • Trishia
    Trishia Member Posts: 361
    edited March 2010

    Nordy~I brought my old surgical bras and cut holes in the nipple area and then wore them.  And loose shirts or a jacket to go over your shirts is a must!  Also shirts with prints worked really well. 

    Melinda~so glad you are doing so well and that your mom has come around.  I know Allen will be there soon and then all will be perfect for you!!!  

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited March 2010

    Nordy, I wore short-sleeved loose hoodies in prints over something like a black tank top.  I got a couple of peasant blouses in prints too, and those were great for camouflaging the nipple protectors and later, the nipple guards.  I've been in the guards now for 4.5 months and wear bras with a bit of padding to hide them.   When I work out and am wearing bras without padding, I wear tops with patterns so the guards don't show.  I know of one gal who wore a sweater over her shoulders and let the sleeves hang down over her breasts to hide the protectors on her trip home from NOLA.   At least once, I took nursing pads and taped them over the protectors, to give a more rounded contour and hide the protectors.

    I talked to Stephanie and Bobbie today, and they were hoping to meet up tonight, possibly in the craziness of Bourbon St. on St. Patrick's Day.  Stephanie does not have a computer with her, so she said that she will call me tomorrow and I can post and update for her. 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited March 2010

    Nordy, I forgot to mention that I am wearing the guards for six months to maintain as much projection as possible, and I actually swam with them tonight because I didn't want my bathing suit to squish the nips.  I guess I'm limited to swimming after dark for the next six weeks.

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2010

    hmmmmm.... I do have one short sleeved hoody that my very good friend gave me... but not much else! Looks like it might be time to go shopping... what a bummer... (NOT!). I am going to have to ransack my closet for loose fitting shirts! And I thought about using the post surgical bras! Thanks Tricia and Sandy! Also - when were you allowed to swim after stage 2?

  • MargitN
    MargitN Member Posts: 73
    edited March 2010

    Holtbolt

    I think I had/have what you are describing. From the moment I got out of bed post surgery, I had tremendus heaviness/discomfort in my left leg. I was really apprehensive about it, and had lots of morbid thoughts that I would never be able to do long walks again.I can tell you that it has improved steadily ever since, but the progress has been gradual. Once I got my hip drains out at week 6 and my left side developed a large seroma, I became convinced the pain and heaviness was related to drainage problems, but now that I remember that it bothered me from day 1, it is more likely a result of surgery. Why does surgery affect some people like that and not others? I don't know. I can tell you that at 10 weeks out I can now walk a half mile or more --this would have been impossible a month earlier. Going uphill causes more discomfort than going on level ground or downshill --different muscles I guess. I started seeing a Physical Therapist last week and she assessed my legs/hips --could not find any significant difference in strength, etc. She gave me exercises and stretches to do, which I started last night. I do the 3day 60 mile BC walk, so going 1/2 mile seems pretty paltry to me, but I am no longer in a panic mode. I hope this helps.

     The red breast story . So, does anyone have telangiectasia (a benign process of vessel dilation/webbing). That is what I have been told is going on in my right breast. The dx was actually made my a dermatologist they called in to look at me.The Hopkins PS as well as the dermatologist said not to be concerned, but I am concerned, because it clearly is not a typical post op complication. Now that I know how to describe it, I am going to contact Allen's group and NOLA and ask if they have ever had anyone who developed this.

  • Dejaboo
    Dejaboo Member Posts: 761
    edited March 2010

    Thanks everyone for you Happiness for me : )

    Margit- I have never heard of that- let us know if you find out more.

    Melinda-I am glad to hear you are doing good & that your Mom is feeling better about this big surgery too!

    Sueinfl- So glad they could fit you in. I remember crying when I got the Call about my Stage 1 date.

    I pretty much forgot all about Nips until 2 days ago...Wasnt on my mind for this surgery date.  now it is.  Im not looking forward to having to dress in loose clothes for them.

    I think Minn Said A Bigger bra worked for her..?

    I dont fill out any of my padded bras to the tip- Will that work ladies?  How much room do you need for these guards?  1/4"? 1/2"?  Bigger?  LOL

    2tzus- Hope you are feeling ok this morning.

    Stephanie & Bobbie- thinking of you today & tomorrow.

  • Leah_S
    Leah_S Member Posts: 1,929
    edited March 2010

    Saw the PS today. He said I could do DIEP, I have enough tummy fat, but suggested that I eat more! I like this guy! OK, I did tell him that I'd had my colonoscopy on Monday and had lost 3 lbs from the prep - I really did see a difference in my stomach! We're talking about surgery probably Sept-Oct (I finished rads last Aug). I was pleased with the way he answered my questions and explained things.I now have to set up an appt for the CT angio, and I'll be seeing the breast surgeon at that hospital for a consult in a few weeks. The only down side is that I did like my BS but he doesn't work out of Ichilov Hospital (where I'll have the DIEP) but a friend of mine had only good things to say about the BS he works with.

    Margit - did you have rads? I've heard of telangiectasia as a delayed reaction to rads. I've also heard that it's more a cosmetic issue than a health issue. If you have "spider veins" in your legs that's basically the same thing - hereditary tendency is another reason for this to develop.

    Leah

  • Jaimieh
    Jaimieh Member Posts: 925
    edited March 2010

    Suzanne~ I was out of the surgical bra as soon as I got home.  The band gave my blisters :(

  • mileha
    mileha Member Posts: 48
    edited March 2010

    Okay-another of my dumb ?s. Is gaining wait before surgery a good thing or a bad thing? background is that I have to have the stacked as i don't have enough to make 2 nice perky foobies. :)

  • Jaimieh
    Jaimieh Member Posts: 925
    edited March 2010

    mileha~ I gained some but now I wish that I had not because I can't get it off...lol.... 

  • Del11
    Del11 Member Posts: 398
    edited March 2010

    Gaining weight usually isn't recommended because when you lose it your new flaps will get smaller too. They will gain and lose with the rest of your body.  It's usually best to be at a stable weight at the time of surgery so the surgeons have an accurate picture of what they have to work with. I'm kind of surprised your surgeon even made that comment to you... I can only assume he was joking and assumed you knew he was joking too.

  • ccbaby
    ccbaby Member Posts: 503
    edited March 2010

    I called the center yesterday and asked if it was time yet to remove my drain (it was only putting out 9 cc's in 24 hrs) and they said definitely. So, I was anxious and didn't want to wait for my hubby to get off work to help me like last time, so I removed it al by myself. It was a breeze and I am so glad to once again be drain-free!! And hopefully, I will never again have to deal with those drains again in my lifetime!!

    Nordy...The nurses put me in a bra after stage 2 because I had implants put in also. They cut a hole out of the bra for the nipple.

  • Springtime
    Springtime Member Posts: 3,372
    edited March 2010

    I've seen this Question about gaining weight on the "Ask the Doc" site, and Doc D says he is not in favor of gaining weight. I guess if you keep on the extra weight, your boobs will remain, but if you lose, your boobs will shrink. Might be best to be at a healthy weight and go from there??

  • holtbolt
    holtbolt Member Posts: 302
    edited March 2010

    Margit - thank you for the hope about my leg... it has definitely gotten better but it's weak/sore and sometimes I swear my toes are numb.  I wonder sometimes (and I'm no doctor) if the drain in my rear is pressing on a nerve or something).... still waiting to hear from the center... Janine said she would talk to Dr D about it .... but.. on that note.... good news to balance the bad...

    I LOST a drain this morning and I have one to go... my BMX surgeon agreed to remove it for me.  He wanted to see the "work" and I had to flash like 4 nurses and employees as they had never seen an SGAP in person... they all thought it looked terrific but I think they might have been secretly horrified by my butt indentions...they asked questions like "where will they get the fat to fill in there"... which.. heck I don't know the answer to that.. upper hip... who knows... it's all amazing that any of this can even be done... but rave review from all of them on the breasts.. especially my "radiated side" as I guess they have seen some recon on radiated sides that don't look as good as mine...  that morale boost was very important to me today... :)

    Anyway, I wanted to run something by you girls who have had gene testing.  I came back NEG on the BRCA 1 & 2 which was very surprising as I have a strong family history (mom 2x dx, a few of her sisters, one cousin, etc.)..... now.... today... my BMX surgeon wants me to do the BART gene test which I guess is an add-on to the BRCA 1 & 2?    I guess the BART identifies another mutation the BRCA 1 & 2 does not?  They said I am the perfect candidate and they have already found a few ladies in their practice that tested NEG on the BRCA 1 & 2 but POS on the BART.. anybody else been approached with this test?? Your thoughts?  At this point with me having b.c. twice and mom now with b.c. twice... my two sisters must be really worried... I would do anything to help them... so I'm going to have the BART now.. just curious if anyone else has had it ?

    Deja - I am absolutely 100% thrilled by what has happened to LEFTY... and so so so happy for you.....  I guess you are a lesson for all of us not to give up hope when we have hard spots or problems...... that's hard for many of us who have little patience (like me).... but yours is a good story and I hope Stage 2 goes off without a hitch.. you deserve it!!!!

    Melanie - so happy to hear you are happy and mom is happy and things are going great!!

    Here's a drain question: I have been told that regardless of output (even if it's under 20cc's for more than 2 days).. that we still have to wait for the color change to go from dark red to yellow... has anyone had a low output drain that remained dark red for a long time?  CCBaby.. congrats on losing the drain!!

    I was laying in bed trying to find that comfortable position to sleep and thinking about my scrapbook page.... and I had a funny thought.... wouldn't it be funny if we all saved a drain and made a Christmas ornament out of it... with glitter and themes.with our names and surgery dates.. the hook could go in that little loop...and delivered a tree with all drain ornaments from the bc.org girls... is that sick or funny... I was loling picturing it..... ok... I was on ONE pain med at the time.....  it seems extra sick this morning as the drain I just lost had a flesh floater in it... and I saw no way to get it out.....lol

    BiLat 12/2/08, Completed 4 rounds of TC on 3/24/09
    Diagnosis: 11/22/2008, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-

  • kcshreve
    kcshreve Member Posts: 349
    edited March 2010

    Holt - I need to do some gene testing, too. I had heard that many with a familial pattern still test negative for the BRCA's, and that there will be more tests coming out in the future.  I did not realize there is a new one. I'm glad they are moving forward with this.  Why are you reluctant to do this?  Is it expensive? (probably!)  Or is it more of a hassle?

  • holtbolt
    holtbolt Member Posts: 302
    edited March 2010

    I'm not reluctant.. I'm doing it.. I just wondered if anyone else was.. it's just a simple blood test and I'm sure Anthem will pick it up as they had no problem with the other one... (this one is $650 if insurance decides not to pay)....

  • laughlines
    laughlines Member Posts: 115
    edited March 2010

    Nordy - Hooray for your dad! I'm so glad things are looking better for him.

    Pam - Great news about lefty! What a relief for you.

    HoltBolt - I am cracking up over the Christmas tree. Those are definitely the deranged kinds of "great ideas" I have late at night too! I hope your leg gets better soon - that sounds so frustrating.

    Margit - I am glad you have some kind of answer - I'll bet NOLA or Allen will have a clue about it. How are you feeling now otherwise?

    Everyone else! Melinda, 2Tzus, Bobbie - thinking of you now!

    Hmmm . .  and thanks for the responses about gaining weight. That is something I was wondering about too.

    I made jambalaya last night to get my taste buds primed. I am looking forward to meeting some of you in NOLA in a couple short weeks!

  • camiam
    camiam Member Posts: 66
    edited March 2010

    sueinfl- Sue, I have been reading this thread for quite some time as I prepare to go to NOLA for surgery, and I never intended to actually post, until I saw your posts last night. I am also in the Pcola area (Pace, specifically), and I'm scheduled for a right mastectomy & SGAP with Dr. Sullivan next Friday, 3/26! At Fairview! How crazy is that? So...hi, and I'm glad to "meet" you, but sorry you have to be here going through this. 

    To everyone else- I guess I should introduce myself now, huh. Embarassed I've been reading for weeks but never intended to post (I'm way too shy normally), until I saw Sue's posts and realized we're not only from the same area but will be having surgery within days of each other. 

    I'm actually a former NOLA grad, from EIGHT years ago! :) I had a left mastectomy & SGAP reconstruction done in NOLA back in Nov. 2001, performed by Dr. S back when he still worked in Dr. Allen's practice. Is there anyone else here who goes that far back? Dr. D was either in training back then, or had just completed training...I met him in the hospital while Dr. S was out of town and he removed my mastectomy drain for me. I've found it interesting reading how differently Dr. S's practice does things now than when I had my GAP done 8.5 yrs ago. For instance, my GAP drain was removed at my 7-day post op, even though it was still draining. All was fine, though; no complications. I've been happy with my reconstruction and have had no problems over the years. I do have numbness over my GAP scar and always have (I noticed someone asked about that a few pages back), but it doesn't bother me. But I walk/run 3 miles most every day and have never been limited by the surgery I had. I've chosen to do it again now for my right side...

    Which brings me to my current situation. I planned to have a prophylactic mastectomy this year, so I could stop worrying about the "what-ifs". Unfortunately my routine mammo in January found a cluster of calcifications, in a linear/branching pattern on my right side. Excisional biopsy was recommended by my radiologist & local surgeon, but I decided that since I've wanted a mastectomy anyway, now is the time to just go for it, and let the mastectomy be the biopsy. So I called the Breast Center and they've gotten it all set up with Dr. S & Dr. Lagarde for next week. I'll have a mastectomy with SLN biopsy, and hopefully the pathology on all the tissue will come back clear...and if not, hopefully any cancer will be "in situ" like it was on my left side 8 yrs ago. 

    I've enjoyed reading and hearing everyone's stories. 

  • swastew
    swastew Member Posts: 110
    edited March 2010

    Mileah - No need to gain weight!! I also had a sgap - and was expecting a "b" if I was lucky - due to my thin build. I came out of NOLA with a full 'C"!! Dr. S said they are finding with thinner women, they are able to harvest more tissue than they initial thought......so, don't gain weight - let them do their magic!!!

  • Jaimieh
    Jaimieh Member Posts: 925
    edited March 2010

    LouAnn~ Dr S was right he was expecting 400 maybe 500 CC's with me and got out 600.  I have always said I had a lot of fat back there.  I just went into it with make me as big as possible and Dr. S thought that he would for sure get me to a B but I came out a D :)  I have a very odd build and I do not look like I am going to fall over with D's but I know that I would have been fine with B's also. 

    I can not wait for stage 2 to get rid of some of my new contoured thighs.  I am tired of wearing the same 2 pair of jeans over and over.  My shorts do not fit, pants don't fit..... BUT I am still in love with my new girls :) 

  • trainertam
    trainertam Member Posts: 114
    edited March 2010

    ewwwwww, I'm picturing the Xmas tree with drains and some poor "newby" in the waiting area wondering what it is!!! Let's stick to the scrapbook pages! 

    I had a weird thing happen....my drain broke! Like when the cork gets stuck in the neck of the bottle. I spoke to Jeanine and shee's FEdEX a new drain to me. I only drained the right one this morning, decided not to mess with the left till I spoke with someone there.I thought "Oh no, now how can I purge the drain?" But I forgot, they are all over anything that can happen!

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2010

    Holtbolt - I was also negative for the BRCA 1&2 test. I thought I was in the clear and that maybe it was just a fluke that I had other relatives w/breast cancer until my sister was diagnosed w/breast cancer a year after I was. I had not heard of the Bart test - I think it is great that you are going for it. My docs just look at me and say, "You know, there are a lot of gene mutations out there that just have not been identified yet." So...

    camiam - welcome! There are a bunch of us there next week! Many of us will be in the hospital when you are probably coming in for your pre-op. I think we are all posting our screen names on our doors. Come on up!

  • Leah_S
    Leah_S Member Posts: 1,929
    edited March 2010

    I have a family history of both bc and ovarian ca but tested negative for BRCA (both 1 & 2). My genetic material is now part of a research study trying to identify other gene mutations that leave a person vulnerable to these cancers.

    Leah

  • Cat1
    Cat1 Member Posts: 128
    edited March 2010

    Holt - I have a mother and sister both who had breast cancer before me and I tested neg for the BRAC.  Wish was a big surprise!  No one ever mentioned another test that could be done.  I'll have to mention on my next visit.  Thanks for sharing!

    Love the drain x-mas tree idea but would definately freak others out! 

    Camiam - sorry you had to join us but definately stop by and visit during your pre-op.  My screen name will definately be on the door! 

    Jaimieh - I'm in the same boat!  I've been wearing the same 3 pairs of jeans all winter and I refused to buy any new ones!  I've got a ton of smaller jeans I'm just waiting to get back into. 

    It's getting closer and closer.  I leave Sunday for NOLA!  Happy Dance fpr New Girls!  Woo Hoo!  

  • mileha
    mileha Member Posts: 48
    edited March 2010

    Thanks everyone for your responses. I guess I should put down the icecream drumstick now. Darnit..

     I just got a call from Sally and she said my UA came back witth high levels of signs of infection, but I don't feel anything....I'm kinda freaking out..could it be something else?

  • sueinfl
    sueinfl Member Posts: 105
    edited March 2010

    Camiam, I am going to PM you with my cell number. I meet with Dr. S at 1 after your surgery and will ask about you. If you are awake, I will stop by. I hope our rooms are close and we can "pace" the halls together. ;-> It would great to have a walking buddy once we are finally back up to speed, too. I am so glad you decided to post!

  • MargitN
    MargitN Member Posts: 73
    edited March 2010

    Welcome Camiam

    Update on the red boob issue --I called Dr Allen's practice and asked if he had ever heard of this. He said he had and asked me to send photos. I was so impressed --he didn't have to do that --he could have insisted I come up for a consult, which frankly, I would be willing to do.

    Maybe it was my telling him that Hopkins didn't have a clue ..... :)

    I'll keep you posted.

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited March 2010

    Stephanie called me a couple of hours ago, and unfortunately I was at my appointment with my nutritionist when she called so I couldn't answer.  She said she's doing great and has been up and around all over the place pretty much since she woke up after surgery.  She saw Bobbie today, and also said that Melinda is good. 

    I also heard from 2Tzus' husband today, and she is doing well too! 

    camiam, I haven't seen anyone from eight years ago---that's great!  And you breastfed both babies---how wonderful is that? 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited March 2010

    Nordy, I think it was six weeks for swimming after the nipple recon.  I'm not sure though...I've had so many stage IIs!!!   When I had the nip re-do in November, the pool wasn't heated so it was a non-issue, but I remember gazing longingly at the water after a couple of my surgeries.

  • camiam
    camiam Member Posts: 66
    edited March 2010

    Thanks for the welcomes! I'm glad I posted. :) 

    Sue, I got your pm & will get one back to you with my cell #. Yes, we have to say hi to each other at some point during our stays...I'm not sure yet if we'll be at the homewood suites or the staybridge, but I think we have it narrowed down to those two at the moment.

    I will also write down your screen names and will try to peek in & say hi to all of you who will be at the center when I'm there for my pre-op consult on the 25th. 

    Sandy-MomsDaughter- I was wondering if there has been anyone from that far back, but I guess not. Yes, I did breastfeed both babies very successfully with my remaining breast after my first mastectomy. I was SO proud of that and it was so empowering to do it after having had to lose a breast. It also makes it a little sad that I'll be losing that dutiful nursing breast now...but I'm okay with it since hopefully doing so will allow me to be here for the rest of their growing-up years. :)

    You're all such a nice group. Glad to meet you all. 

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