Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: How does Breast Cancer Awareness Month make you feel?

NOLA in September?

1…545546548550551…908

Comments

  • amym159
    amym159 Member Posts: 173
    edited April 2012

    Hi Sally! Good to see you here again:) I am in the process of scheduling a stage 2B and am experiencing some of the same reactions. People seem to be much less sympathetic and supportive when they decide you are being too picky! I'm trying to ignore everyone who is less than supportive, but that isn't easy. Amy

  • cascader
    cascader Member Posts: 152
    edited April 2012

    I remember reading somewhere about those of you that had little or no support as you were going thru recon, I wasnt at that place yet so dont remember where it was. Anyone know?

    My experience is that I am travelling across the country for this surgery and was hoping for some family help, offered to pay my sisters airfare and expenses but she made it quite clear that she does not want me to do this and I must be incredibly vain, even asked if it was my husband that wanted me to do this, blah blah blah. It has been a few weeks since we talked and now neither my brother or sister even acknowlege the fact that I am going to have major surgery in less than 2 months. I dont expect them to necessarily understand but a little support or acknowledgement would be nice.  

    I am fortunate that a few friends and a sister-in-law have graciously offered their time and support, so I am set for helpers while away. I am grateful for my friends.

    I guess I am wondering how any of you have dealt with those around you that obviously do not understand. Would really love to deliver a strong(but subtle?) one-liner to respond with! 

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2012

    Karen... I am 5 months post stage II and still can't wear my some of my old pants... too tight in the belly, but loose in the lower abs... I tend to wear low rise pants and it resolves the problem... but some things I own are not low rise, like my ski pants.. I found them to be very uncomfortable.

  • KerryA
    KerryA Member Posts: 184
    edited April 2012

    I am looking for some good advice. After my BRCA 2+ results and completing my first (and what I hoped last) round of survelliance tests I had my mind made up that I would be in NOLA.

    I've filed a grievance against my HMO but wondering if I'm going to get to NOLA. I will keep going through the processes. Next is to try getting onto my husband's PPO plan which has out of network benefits. Just curious if those are plans many of you had?

    I don't feel implants are an option for me and that is all surgeons around my area are suggesting, saying it will give me better results, less recovery time, and that tissue recon make not work. Did anyone have a similar experience? After hearing this from multiple surgeons it is starting to weigh on me. I am not giving up just in need of some advice or support I guess.

  • Downey30
    Downey30 Member Posts: 199
    edited April 2012

    Hi KerryA, Don't give up on the insurance end of it....keep plugging away.  As for your reconstruction I allowed myself to be talked in to having implants.  Three surgeries later and a failure on the right side made up my mind for me.  My experience is that the surgeons recommend only what they do so you really don't always get all of the options.  My moms friend just had mastectomy with TEs and then implants.  She turned around and had a tummy tuck two months later.  He didn't do Diep.  Be your own best advocate.....I'm sure you know that.  Good Luck!

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2012

    Kerry... Everyone is out of network with Nola except a very small group of CIGNA participants and even those people have trouble. I am out of network, and yet it was processed semi-in network with my PPO... so you just never know.

    And I agree with Downey... Surgeons want your case, and will tell you whatever they think they need to to get your business... you will NOT get better results with implants. Last month I was at the radiologist and the nurse said she has never seen such good reconstruction. Even my MO who poo poo'd my going to NOLA admitted they looked good... I say you need to listen to yourself, and maybe read some threads about unhappy implant patients. I have plenty of friends who wish they did not get implants and it was one of them that suggested DIEP to me last year, since her implants are somewhere under her armpits...

    You will also hear that DIEP doctors tell some women they don't have enough fat and have no other options, when in truth, they are capable of performing the surgery. My local PS said I did't have enough fat, and said I had no other choice blah blah... and in truth, I didn't have enough belly fat, but did have plenty of buttocks.

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2012

    Sally, your boob should totally stay inside your bra!!!! I mean really!

    And Amy, even if it's small things, it's YOUR body. If it's worth it to you to go through another surgerya and recovery, then do it!

    I agree with Downey, totally. The surgeons will recommend what they know and discourage you from DIEP or GAP, and will tell you don't have enough fat. It's ridiculous. They have no clue is all I can say.... 

  • kcshreve
    kcshreve Member Posts: 349
    edited April 2012

    My oncologist told me my breasts were some of the best work she's seen - and you know she's seen it all.  DIEPS rock.

  • kcshreve
    kcshreve Member Posts: 349
    edited April 2012

    Kerry,  I used a PPO, but each plan is different enough that you have to do the extra work to figure out what is covered and who works with that plan.  A royal pain. 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited April 2012

    Kerry, my younger sister wants prophylactic mastectomy in NOLA and she's a nurse on an HMO.  She plans to switch to a PPO when she is mentally ready to proceed.

    I don't think anyone should interfere with our quest to feel whole again.  I never thought that I would be picky about my reconstruction, but I think I became highly critical of myself and little imperfections really bothered me.  I had six surgeries with Dr. D -- he kindly obliged me until I felt that I was finished.  The last surgery turned out to be way more than I'd planned for because a few days prior, I noticed that my ab scar was really loose due to some weight loss.  Also, my first surgeon had placed my umbilicus off-center and all along, I'd wanted that fixed because I'm someone who really doesn't like asymmetry.  I knew that in order to move it, Dr. D would have to leave a scar and he had been so particular when I had my hysterectomy that it be performed through my DIEP scar that I think he really would have preferred not to.  However, he let me make the decision and my desire to be symmetrical won out so I woke up to find that I'd had another full tummy tuck with more plication, lots of lipo, plus the breast revision that I thought I was there for.   I always left NOLA elated that things were improving so much with each surgery, but I have to say that it feels good to not be planning another one.  If I ever lose the weight that I want to lose, I might return and have a bit of lipo to even up my waistline and address a spot on one thigh, but for now, it's not bothering me.  Maybe by then, I'll need a bit of volume added to the uppper pole of each breast and can try to justify it with that.  Regardless, no one is going to be allowed to criticize me for wanting to feel good about myself.

    I have to say that I've never seen implant reconstruction that comes close to looking as natural as the results that Dr. D and Dr. S are achieving with flaps.  Not to mention that implants never feel anywhere near natural.

  • tigsun
    tigsun Member Posts: 162
    edited April 2012

    Today is my tattoo appointment with Vinnie.  Laughing  I will report back how it goes.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited April 2012

    OK, annual check-up at Roswell Park Cancer Institute -- ALL CLEAR!!! Whew ... why is it that we get SO anxious!? Doc had never seen an autogenous recon, so I became "show and tell"! Probably was groped by about 9 people all together who were duly impressed. Rosewell only offers implants. At least the doc had heard of Drs. D and S!

    Looking at IIa in late fall. Dr. D says small implant (Maggie says NO!) so probably have to have a baby flap as the left one (natural) is really sad right now since I have lost weight. I am having a hard time in most of my clothes and my pants suits that I wear to work I have to wear suspenders or they fall down!! Into clothes that I had shoved to the back of the closet as "not in this life-time ever again" but I am wearing them!!

    I agree with all the others here ... it is YOUR body and what you think is right for you IS right! Period. Those who haven't walked in our shoes should not pass judgement. Period. And if they do, tune'em right out!!

  • tigsun
    tigsun Member Posts: 162
    edited April 2012

    Tattoo is all done! It didn't hurt at all! Vinnie is wonderful!

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2012

    Jealous!

  • Adey
    Adey Member Posts: 2,413
    edited April 2012

    Me too!  (jealous)

  • sallym
    sallym Member Posts: 180
    edited April 2012

    Nice to see you too Amy wouldn't it be a trip if we were at NOLA the same time again.

    KerryA, I am in an HMO thru Aetna and of coarse out of network, but see if your plan has what is called a Three Rivers Physician Plan( no idea why it is called that  or TRPP) and is what that is  is if there is not a doctor within 50 miles of your location willl do the type of reconstruction you want then you can go to any location to have it done. I have had all surgeries at NOLA and I live in NY and other than some minor lab tests I have not paid anything. It is worth a shot, alot of insurances do have this plan but alot dont publicize it. I believe a girl at NOLA told me to ask about it ( she has since left NOLA) But possible ask Insurance dept at St Charles. Worth a shot what can they say besides no

    Thanks for all of the support girl, really appreciate it. Just waiting to her from Jeanine with a date

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2012

    I have Aetna and Three Rivers also...I had no idea I had TR, but the people at NOLA told me about it... and did all the leg work for me.

  • tigsun
    tigsun Member Posts: 162
    edited April 2012

    Adey and Betsy - you guys are too funny.  I know you are jealous and happy for me at the same time.  I know I was jealous when it seemed like everyone could stand up straight and I couldn't.  Betsy I know we were supposed to go together but you will get there.  The tattooing was great.  I have a needle phobia but it went wonderfully.  My mom watched Vinnie do the whole procedure and told him he was a great artist.  He is!

     It does feel good to be completely done.  I started exercising again and am pretty much back to life as it was before all the surgeries.  It seemed like I would never get here.  My Nola journey started with surgery  May 11, 2011 and I am happy to have it end today with the tattoos.

     I had an HMO that has POS (point of service care) which means I can go anywhere but they will only pay out of network prices.  I didn't even realize I had that because I had always seen in network doctors before.

     Everyone hang in there!

     I told Vinnie today outside of having cancer for the second time that my whole Nola experience has wonderfully amazing.

  • KerryA
    KerryA Member Posts: 184
    edited April 2012

    Thank you for all the info. My grievance letter has been sent out and now I will be preparing for the hearing. I manage my company's benefit plans so I am trying every avenue possible. The NOLA insurance specialists have been supportive as well.

    I also appreciate the feedback on the implants. After doing my research on them and being advised to go that direction with my area surgeons I came across the NOLA facility. I just knew the implants were not the way to go.

    My family has been very supportive and today I decided to tell my co-workers. Makes it more real and felt good to finally tell people what I've been holding onto over the last several months. 

    Thanks again!! 

  • Nordy
    Nordy Member Posts: 1,106
    edited April 2012

    Hi all! I hope everyone had a wonderful holiday!



    Kerry, I had tissue expanders in forever. They never felt good. Ever. And my hip flaps are a hundred times more natural looking and feeling than those expanders ever were. My PS I had in Tx is a breast cancer survivor. She had implants, and she hated them! So I think that says something.... ;)



    Sally... Whatever makes you feel best, you know that. Let me know on that date!



    And Amy, I may be going this summer, would love to see you again. I always love when there is a BCO party in NOLA!



  • Nordy
    Nordy Member Posts: 1,106
    edited April 2012

    Caitlin... If you are reading this, is it green panty Wednesday tomorrow? I think it is... Got them ready to wear in the AM. :)

  • annalive
    annalive Member Posts: 286
    edited April 2012

    Going to NOLA! The center's feedback on my upgraded insurance was good news. I am set up for consultation with Dr. Sullivan on May 17, bilat DIEP tentatively July 17. DH will drive me there and stay the whole time.

    The reason for waiting until July is that it will be 4 months after I finished rads, their minimum wait, which also catches the last month of DH's summer break -- he is my caregiver.

    I'm already a little worried about the skin on my L side where TE was removed. It's still inflamed almost 6 weeks out of rads. It seems to calm down, but if I wear a bra all day, the skin gets pink again. It needs to shape up before recon! The area is low, where the IMF should be -- can't imagine how a flap would join this skin, but these docs are the experts.

  • annalive
    annalive Member Posts: 286
    edited April 2012

    KerryA -- praying you'll get the insurance worked out. I was sweating it for a couple of months after mine was rejected by the center for no out-of-network coverage, but upgraded during open enrollment (DH's plan) Apr 1, not knowing the outcome, but the center is amazing at making it happen.

  • Momma2four
    Momma2four Member Posts: 133
    edited April 2012

    hi all...been a while.  Trying to catch up.  Insurance  blah...sorry girls that are dealing with it.  BS that we get cancer than hate to fight to try to get a part of ourselves back to normal. 

    Anyway, i have been really tired this go around.  DIEP for me was much harder than my GAP in December.  I am just now getting some energy back this week from My 3/21 surgery.  Wow.  I am used to bouncing back each surgery... not this time.  My drain is killing me.  Hits me right on my hip bone.  my other hip bone has something on it that moves when i touch it.  No drain there anymore so not sure what it is..did they leave something in there???  Yikes. 

    Any of you Dr. Marga girls have stage 2 in Chicago or Charleston?  I am debating on which to go to.  Obvisoulsy Chicago would be closer but Dr. M mentioned something about a pre-surgical fee???  Something to do with the lipo.  I prefer to go to Chicago as i live 2 hours south but if there is a $1,000 fee then i feel like dropping that on plane tickets to Charleston to see the city.  I have never been there and would love to go.  I can always go back to NOLA:).

    Happy Wednesday.

    Michelle

  • Nordy
    Nordy Member Posts: 1,106
    edited April 2012

    Momma, I am sorry to hear you are having so much pain and fatigue! Maybe all these surgeries are starting to add up! I do think they have a cumulative effect.
    Ann- congrats on getting your insurance squared away and on your surgery date! Woohoo!



    Everyone, if you haven't decided on your panties today, I am 99.9% certain it is Caitlin's chemo day. So, that means green panties! Caitlin, we are thinking about you!

  • Del11
    Del11 Member Posts: 398
    edited April 2012

    Momma- DIEP was harder for me too. Still is.  Having a hell of a time fighting this scar tissue up front. Feels like I'm wearing an iron bikini :)

    I've had surgery in NOLA, Charleston and Chicago... If you're looking at having a lot of stuff done at stage 2 I would go to Charleston over Chicago, personally.  At Charleston you at least have the option of being admitted if something comes up.  And I'm guessing the Charleston hospital is in your network.  Between NOLA and Charleston, I would choose whatever's cheaper for you. 

  • Momma2four
    Momma2four Member Posts: 133
    edited April 2012

    Brenda, I forgot you had both!  You are right about going to Chicago and not being admitted and considering that i am full of complications I had probably better stay clear until i know it is going to be an easy one...ha ha.  So, i need to figure out which would be cheaper and better for me.  Yes, Charleston would be in network as i have BCBS but then i would have to rent a car and flights seem to be a bit more expensive going that way.  HOWEVER, I have always wanted to see Charleston and know that i will not get my whole family out there as we are more Florida vaca people.  One last thing I worry about is risk of infection, isn't Roper Hospital a general hospital? 

    I have the iron  bikini also!!!!

  • Del11
    Del11 Member Posts: 398
    edited April 2012

    Roper is, yes, but I think the flap patients have their own floor there, or at least the nicest part of the OB floor.  Not too many sick people around (I don't remember there being many people around at all, actually).

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2012

    Michelle... I had both also, and the DIEP is definitely harder than the GAP... and I sort of have the iron bikini... is less noticeable now...

  • Springtime
    Springtime Member Posts: 3,372
    edited April 2012

    Happy you are done Tig!!! :)

    AnnAlive, Yay!!! Glad things are working out! The rads skin may calm down after a bit...let's hope! I think I waited 6 months after rads...  

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.