23, mom, brca+ now what

jenamae
jenamae Member Posts: 47

Well im back on here, Im 23 BRCA+ and really kinda scared out of my flippin mind. I have had a  mamogram year half ago and it was good not doing mri this week and that really scares me. I got a new doctor the last one didnt really give a crap it seemed like probably because im so young , well my mom died when she was 30 so im a tad worried. I just want to know what my options are in the future, DR said somthing about having breasts removed, is that possible without them lookin disfigured and how long does that take and wehre would i be able to find an amazing doctor? Im in montana and dont want some random doc touchin my boobs :) ugh im just worried and have a million and half things going on in my head  and dont even know where to start. kinda feel alone i guess. oh and i have had this lump toward armpit for a while and getting bigger last doc wouldnt even look at it but this doc will with the mri i swear if its somethign im gonna sue that last doc for not looking ugh!

Comments

  • sanbar8771
    sanbar8771 Member Posts: 281
    edited November 2011

    Go to the Dr and have that lump looked at. I had a lump in my armpit that would get sore.. yes cancer can hurt, and it turned out to be IDC. I am also brca2+ and there is no family history. I would not wait... even if you go to a breast surgeon you should get the lump looked at. Once you figure out what is going on then you can change Dr's (if needed). I hope this helps.. take care and remember try not to stress.

    Julie

  • beepbeep
    beepbeep Member Posts: 84
    edited November 2011

    i'm sorry you are going thru this stress at 23. i'm pretty high risk for bc and have been dodging testing for some time now. from what i understand (please correct me if i'm wrong), you are still at pretty low risk right now and vigilant surveillance is an option for you. i'd have your lump looked at for sure but try to remember that benign is much more common for your age group (even with the gene). whatever you decide will be the right thing for you. my friend just had a prophylactic mastectomy and she's doing great! she's in her 30's and said her recovery has been good.surgery is so much less invasive now that i really dont think it distorts you in any noticeable way. but i think many women choose more conservative methods and are happy with that too. just do yourself a favor and make sure you are at least getting a breast exam twice a year!!! preferrably some kind of screening once or twice a year.. even if it's just an ultrasound. best of luck!!!!

  • jenamae
    jenamae Member Posts: 47
    edited November 2011

    I am high risk im BRCA1+ and a family history, my mother was 26(or very close) i believe when she found out she had BC and died when she was 29 0r 30 I was only 2. I am set up to have a mamogram and mri once a year (rotating every 6months) but yes this lump can get annoying and it has grown and its annoying becuase the doctor before didnt do a darn thing

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited November 2011

    Jenamae,

    There are two organizations that are devoted to those who are BRCA +.

    I highly suggest you check them out. You will find many young women like yourself who have the same concerns and have walked the path you have just embarked on.

    Check out the "Young Previvor" thread on the

    www.facingourrisk.org message boards. And also www.bebrightpink.org exclusively for young BRCA+ women,

    I understand your fears and hope you can find BRCA saavy healthcare that will take you seriously and treat you appropriately,

    Warmly,

    Marcia

  • denouement
    denouement Member Posts: 192
    edited November 2011

    Hey Jenamae, Marcia sent me this thread - she helped me so much during my journey, would love to help you through yours!  I'm on FORCE as well and I highly recommend it, you'll meet a lot of people your age in similar situations.  It all can seem so impossible at times, but if you can make connections with someone who has walked in your shoes or is currently walking in them it makes all the difference!   I'm a bit older than you, I'm 35 but I am also BRCA1+ with a wicked family history - 8 out of the 10 ladies in my immediately family died of either BC or OVCA by the age of 40 - some had both!  Very scary indeed.  I took the plunge and had both the double mastectomy and the hysterectomy - very hard decisions to make for sure but I'm 100% sure I did the right thing.  I was very lucky, had no complications and have fantastic cosmetic results.  I did a nipple sparing mastectomy which if you can do it really helps!   I also used my own tissue (DIEP surgery) from my abdomen to reconstruct my new breast so there is nothing foreign in me.  I know this is a lot to digest all at once - when I first found out in January I thought, no way!  But in May I was under the knife and again in August for the hyst - long hard road but there are so many ladies who can hold your hand, give you advice, let you vent/cry/yell/laugh...whatever you need to do.  Hope this helps - please send me a message if you want to chat sometime.  Happy to answer any questions you might have or just be a sympathetic ear.  {{{HUGS}}} ~dana

  • jenamae
    jenamae Member Posts: 47
    edited June 2012

    Where did you get yours done at? I want to make sure I go somewhere good and taht wont mess me up i would rather have to pay for new breasts then die from my real ones

  • LISAMG
    LISAMG Member Posts: 639
    edited June 2012

    jenamae, do u have sonograms at all? Mammos are often not the recommended choice for imaging at your young age. Ultrasounds have been more effective along with the MRI. There are lots of great books u may be interested in as well. Positive Results by Joi Morris, Pretty is What Changes, by Jessica Quellar, Previvors by Dina Roth Port are all great reads for you. The Breast Reconstruction Guidebook by Kathy Stilego is wonderful and describes all types of surgery.

  • denouement
    denouement Member Posts: 192
    edited June 2012

    Yes highly recommend all those books as well - I went to the Center for Restorative Breast Surgery in New Orleans http://www.breastcenter.com/ who are widely considered to the "gold standard" or "Cadillac" of analogous tissue reconstruction.  I agree it was worth it to pay a little out of pocket (my insurance covered 80% out of network) and to travel to get the best possible reconstruction.  It's been a little over a year and the girls look FAB - maybe even better than before...scars are fading and the best part is that I don't have to worry about dying every day all day long...I've got peace of mind and fantastic cosmetic results...who could ask for more? 

    Happy to chat with you if you want more info.  

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