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NOLA in September?

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Comments

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    Dr D pulled 2 of my 5 drains today... Yahoo! Hopefully will lose another before I depart this smokey city...Did you all know about the marsh fire?

  • BrandyB
    BrandyB Member Posts: 60
    edited August 2011

    Yes to the skin question. My skin was burning like crazy to even the softest touch, but it is getting better. Today makes 5 weeks post surgery. Everyday I'm exponentially better. For the past 4 days I've been walking and getting my strength back. Of course, I'm one year out from chemo and radiation, so my body is healing much faster than it now. I remember accidentally getting sunburned while on chemo and I didn't think it would ever heal. I look at myself healing now and just marvel.



    Best wishes. Cancer sucks.



    Brandy

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    Cancer SUCKS

  • nowords
    nowords Member Posts: 70
    edited August 2011

    Yes...yes it does....

  • celtic_antique
    celtic_antique Member Posts: 351
    edited August 2011

    Yep. No doubt about it! cancer sucks ... wish there were a stronger word, 'cause it does THAT, too!!

     And my skin is going nuts ! Can't wait for this girdle thingie to end!

    WTG on the drains, Betsy! Pretty soon you'll be able to see where you are washing! LOL! Thanks for the tip on putting the *$&@*($&!! thing on -- worked like a dream. Now will have to find a different areobic workout! ;-)

    Quiet day, but quite a bit of discomfort. I can handle it, though. And more. As my husband posted on his FB page his wife "with no artificial ingredients" LOL ...

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    Glad the girdle tip helped... You do get more used to it... Trust me, i have had it on for 6 weeks now.

  • christine47
    christine47 Member Posts: 846
    edited August 2011

    Hi bdavis,

    When I check in on the boards, I look at this thread to check your progress.  I am so glad to see things are moving forward for you!  I have been thinking about you.  Seems like the fun never ends.  I have implants, but often wonder if I should have gone the DEIP direction (I am a second guesser on everything related to my treatment).  I am sure you will be happy with your final results and appriciate them even more.

  • Adey
    Adey Member Posts: 2,413
    edited August 2011

    "with no artificial ingredients"

    Love it!  And look forward to it.  (c:

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    Christine... I have followed your progress from other threads... I think we all second guess our decisions if the choices are ours... How have you been recently?

  • toomuch
    toomuch Member Posts: 254
    edited August 2011

    %&^$ Cancer.I agree it beyond sucks.

    Betsy - So glad that you're returning home tomorrow. Wishing you swift healing ahead! Just wondering did you lose your hip or breast drains today? I'm a month out now and my hip drains are both still very productive. I'm wondering if I'm going to lose either of them before Stage 2!

    Celtic - I'm not as tough as Betsy. I became girdle intolerant 2 weeks post op and Dr. S said it was okay for me to convert to Spanx then. My drains are still producing. I did wear the girdle one night and didn't have decreased output. I wonder if I would if I wore the girdle 24-7 but I can't force myself back into it during the day!

    Amy - Good luck with Stage 2. Sending positive vibes for smooth sailing!

    I'm a month out today and really feel well. I'm back to work 30 hrs/wk. I find I feel best if I walk every day. If I don't my hip area begins to feel tight. My trunk/breast LE is the biggest drag right now. There considerable swelling on my cancer breast that wasn't there in the immediate post op period. I'm not quite sure where the drainage path will be with these long hip incisions. My LE therapist won't see me for MLD until I lose my drains. Frown I hope that once I can begin MLD across my chest I'll be able to get things under control.

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    Amy... I had one breast drain and one ab drain pulled today... So i still have both hips and one ab drain left. Hip drains picked up output when i went back to surgery. At 4 weeks it had gotten down to 40-50 cc a day, then post surgery went back to 100... Now at almost 6 weeks, they are back to 40 or so...



    I tried switching over to bike shorts a few weeks ago, thinking they'd be better than the girdle, but since they aren't crotchless, i found dealing with the drains everytime i had to use the bathroom more of a hassle.



    And also amy, i leave the hospital tomorrow, but leave new orleans friday..

  • christine47
    christine47 Member Posts: 846
    edited August 2011

    bdavis,

    I am doing well for the most part.  My hair is so slow (except in places I don't need it) and I have new silicone implants.  They looks fine, but some crazy random pains this week (7 weeks post exchange).  I will see my PS this week and discuss some fat grafting and nipples (CV flap).  I read these threads and wonder if I should have had DEIP to be done" forever" if there is such a thing.  I am taking the Tamox without any side effects, but seems like I can't loose the extra pounds I put on during chemo/surgery.  Started with a trainer at the gym today, so maybe that will help.  Sounds like you have had first class care, despite some glitches.(I thought I was the queen of it can happen it will with my anesthesia complications but you may have me beat with your crazy port, wound issues and travel fiascos)  I know you are an inspiration to the other ladies on this thread.  Hoping you continue to do well and get home safely! 

    christine

  • cider8
    cider8 Member Posts: 472
    edited August 2011

    Dana, I keep some notes regarding Stage 2.  I made note of this from Dr D's message board:

    So, I recommend 3 days of absolute compression and then out of it only to wash garment & shower for at least 2 weeks. I think there is benefit from wearing compression for the majority of the day beyond that for 6 weeks (this is the time most will begin to fudge). The first few days are absolutely critical to limit what can otherwise be extreme bruising and swelling. After that it helps maintain comfort, speed swelling resolution, and maintain a smooth result.

    I have two more chemo infusions and then I'm done!  I'm stalling planning Stage 2 because I feel so rotten from chemo.  I just want enough time to feel better, heal better and drop some weight.  I am worried my doc will start me on tamoxifen quickly, and then I won't be able to drop weight.  Bah!  I'm seeing the other onc in the practice at tomorrow's infusion; she's also a nutritionist so I have a few questions for her.  

    Keep up the healing ladies!  You are rocking! 

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    Thank you christine... I wish you luck with the implants, weight loss, and being comfortable with your decisions... I think its been a long year for both of us, and try not to worry about chemo weight til next year... Be good to yourself... And we have conversed on the hair thread... I feel that when my hair looks like something i would do on purpose, i will start to feel more normal. My new goal is march 2012 to have normal hair, soft contoured boobs, faded scars (mostly), and a bit of amnesia when it comes to this journey.

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2011

    My skin was also super sensitive, couldn't even blow air on it! It did resolve in time.

    Compression after lipo - I think the longer you wear it, the better your end result. We had a poster in here who had a doc tell her to wear hers for 6 months. I think it is cosmetic, tighter better looking result.

    Cancer sucks.

    Have any of you figured out what survalience to do on your daughters for breast cancer? Both of mine, 19 and 22 just had breast thermogram and the results are inconclusive because they have so much estrogen. I am very dissappointed b/c I thought this could be a help without radiation. Mammo didn't work at all for me (dense tissue) so I know it won't work for them. Is Breast MRI the only way to go? Let me know if any of you have  worked on this issue with your own daughters. 

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2011

    Anne, girl!!! YOU ROCK!!!! Love your nudie pic!!! :)

  • cider8
    cider8 Member Posts: 472
    edited August 2011

    Spring, my daughters are only 7 and 10, but I worry about them.  My older daughter has my body shape, which might = big, dense breasts.  My 7yo has hubby's side of the fam, which is classic pear shape, but might mean little dense breasts.  I worry about my sister, 37, now, too.  I'm disappointed to hear the thermogram didn't work.  I never had that and wondered what if I had that, or should my sister have that.  I will say the self and surgeon breast exams, mammograms, ultrasounds, and MRI never detected my 1.2cm IDC tumor.  So THAT is not helpful or very hopeful.  My take is that I tell everyone to be familiar with their breasts.  In my experience talking to friends, they AREN'T familiar with their own breasts.  That's how I found mine (my mucinous tumor).  Just feeling around like I do periodically, not a clinical calibur self exam.  If I hadn't found it myself, I could still be walking around in ignorance, with tumors growing, having not made my first mammo appt at age 40.  (I turned 40 this summer)

    Stupid Cancer!!!!!!  ! 

  • RunningforSanity
    RunningforSanity Member Posts: 101
    edited August 2011

    Hi there - I have been reading, not posting lately, but am going to be away at a music festival and away from the computer till next week.  I have been so glad to read that Betsy is doing well and finally gets to go home!  I wish you continued good healing and a safe trip home, and a wonderful holiday weekend to Betsy and everyone else!

    Re the daughter question, my daughter is just 13 (last week) and I am hoping that there will be similar advances in technology for her as there were for me compared to my mom.  She never knew that her cancer was caused by her BRCA2 defect - but I know I have it and can hopefully prevent having the same fate.  She died 34 years ago this month.  I wish she had lived to meet her grandchildren, or even see me graduate from high school.  She gave me a lot of love and strength for this life, and that is an amazing gift.  

  • toomuch
    toomuch Member Posts: 254
    edited August 2011

    Spring - I have a 19yo daughter and a history of dense fibrocystic breast too. I've talked to my breast surgeon about monitoring for her and she seemed to think that a baseline MRI at 30 yo would be a good idea. I'm not quite comfortable with that. I agree with Cider that knowing your own breasts is probably the most important but I'm not sure how often my daughter does a self exam so she'll be getting some imaging for sure.

    Dr. LaGarde did bilateral ultrasounds on me at my preop appt in NOLA and she founda small ~4mm fibroadenoma on my BC side that hadn't been picked up by mammogram, US or MRI at home during the 3 weeks prior to surgery. So, in the right hands ultrasound can be a great tool. When I f/u with Dr. LaGarde in the spring, I'll ask her the question about monitoring our daughters.

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited August 2011

    BSE every month on the 5th day of their menstrual cycle (breasts are "less" bumpy then). I suggested to a Komen focus group in 2006 to get a nationwide initiative started that would encourage young women (at 1st menses) to become familiar with their breasts.. My concern is that is some areas of the country "touching oneself" is still considered "taboo".Also for young men to examine their testicles. The theory is that if something were to develope they would immediately know to see a Doctor.. Kinda like brushing your teeth which we teach our children as a matter of course..
    Early exposure to radiation from Mammo.Mammograms must be undertaken sparingly only on the advice of a Physician as there is controversy regarding exposure of breasts to radiation during the formative years. In regards to MRI,  MRIs extreme sensitivity may lead to multiple biopsies due to false positives and at a young age their is much risk vs benefit to consider.. 

    Knowing their breasts is crucial.. Its a good place to start!

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    I too have a 19 year old daughter, with dense breasts, like me... She sees the gynocologist yearly, but i want her breasts monitored somehow, other than self exams... I know her, and self monitoring is not enough. AND i know a family whose 22 year old daughter is going thru breast cancer, so they are never too young to be afflicted.

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2011

    My daughters have an Aunt (my husband's sister) who was diagnosed at 27 and who died at 35 from breast cancer; them also me, their Mom.

    I am totally un-nerved by this and so friggin PISSED OFF that there is no good survalience for young women at high risk. The whole industry is just waiting around for them to turn 30, (or 40 or 50??) then give them mammograms that won't work. My tumor was over 5CM and was invisble to mammo and ultrasound. I have no faith in them.

    I am thinking that I need to find a sympathetic doctor who will give them breast MRI about every 3 years or so.  

  • toomuch
    toomuch Member Posts: 254
    edited August 2011

    Soccermom4force - MRI's have no radiation exposure which is one advantage of using them for screening. The disadvantage, ofcourse, is that they're expensive and insurance will not likely want to cover them for breast cancer screening for women in their 20's even with a FH of BC.

    Betsy - BC is horrible no matter your age but 22 yo. OMG, I can't even imagine what the family is going through. I've been telling my husband all year that at 21yo my daughter is having a baseline MRI, insurance coverage or not. I'm sure that our gyn will order it for her. He just can't guarantee coverage.

    Spring - I agree with you every 3 years or so beginning around 21yo makes sense. I had 5 benign lesions removed between 15yo and 47yo. None picked up by mammogram. All found on self exam. Some would argue if the lesions are benign you don't really need to know about them but I would argue that having a lot of lumps in your breast inhibits your ability find potentially malignant ones. My ILC was hiding behind a huge cyst. I first thought it was a cyst but when it didn't change with several cycles I saw the doctor. After 10 cc was drained from the cyst, the hard mass became very evident. Still not picked up on mammo 2 days later! Nope I don't trust mammos for screening.

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    I don't trust mammos either... Besides the cancer i found, at 35 i found a lump, which also didn't show on mammo... It was a fibroid, but surrounded by ADH... I also had a large cyst that did show (all left breast), and i had it aspirated last summer... Benign... But when you know what you know, that mammos don't work and cancer does not age discriminate, you worry about your daughters for sure... I agree that getting them an MRI every three years, insurance or not, is the way to go.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited August 2011

    If my daughter had waited until the "recommended" 40 yrs old, she would be dead. She has triple neg, a particularly aggressive and nasty BC. She found on reg self-exam and mentioned it to GYN. Went for vaca for one week and it hadd doubled in size. She is fine now, but it was a harrowing year. The insurance companies are out there to make money, not save lives. Most over-capitalized industry in the nation. I rank them right below sticking a knitting needle in my ear ... only the united voices of women can make any difference. And make sure that when you raise yours, it is with an org that sees it your way, not the "most popular" or "politically correct" way ... millions going to orgs that really, unless you live in a major metropolitan area (as I do not, obviously), there is little offered other than kind words -- and I am NOT negating those! Groups are only held in the city, even companions/mentors are miles away ... ok, need to get off the soapbox. Getting blood pressure up and there are more constructive things for me to do. Sorry about the rant ... obviously feeling "livelier" today! :-)

  • Momma2four
    Momma2four Member Posts: 133
    edited August 2011

    I had a friend that was diagnosed at 18.  she fought it like crazy and the cancer came back 10 years later and unfortunetly lost her battle this year.  I LOVE the idea of having girls start self exams when they are young...no reason NOT to.  I was 32 when i was diagnosed.  I found my 9CM tumor (not a typo).  My doc said it was NOTHING!!  I pushed and pushed because i knew it was cancer.  it took me 3 times to convince them to do further testing.  

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2011

    Well, the thermogram report says we should have them (both whole breasts) ultrasounded. for the one who is 2 hours from home we'll go down this path and see if we can find a doc who will fight insurance for a breast MRI. The one across the country. ugh. I don't know what to do quite yet.

    They can ultrasound all they want, but no Mammo on breast tissue this young. Radiation for nothing, no way. 

    If anybody else hears of a path to take or what to do in this situation, please let us (me!!) know.  

  • toomuch
    toomuch Member Posts: 254
    edited August 2011

    Momma2four - I just noticed that you are more then 10 years from diagnosis! I hope that you're surgery goes smoothly tomorrow. When the NOLA docs get all done fixing you up, you are going to have many reasons to celebrate!

  • bdavis
    bdavis Member Posts: 3,192
    edited August 2011

    Michelle... I just noticed your 2001 date as well... Are you BRCA positive?

  • Momma2four
    Momma2four Member Posts: 133
    edited August 2011

    I know...what a crazy way to spend my 10 year anniversary!!!  Oh well...i will get a rocking boob from "build a boob"(that is what my 5 year old calls NOLA) for my gift!!!  LOL

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