Any Northern Virginia ladies on this discussion board?

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  • PeggySull
    PeggySull Member Posts: 686
    edited September 2013

    Odie,



    I plan on being there!



    Thanks,

    Peggy

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  • mary625
    mary625 Member Posts: 1,056
    edited September 2013

    I can't be there this month. I am doing an opera with a friend, and we are holding the auditions that day. I willl miss seeing you. PeggySull--how was your exchange surgery?

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  • edie61
    edie61 Member Posts: 9
    edited September 2013

    anyone live in Sterling?

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  • edie61
    edie61 Member Posts: 9
    edited September 2013

    I AM SEE DR VIRGINIA SAME OFFICE BEEN TOLD THEY ARE THE BEST..Just found out 8/22013 have not had surgery yet next visit is Tue hope we can set the daye...Good Luck

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  • dessert1st
    dessert1st Member Posts: 190
    edited September 2013

    Odie, i plan to be there (as of right now. :)

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  • placid44
    placid44 Member Posts: 497
    edited September 2013

    Odie,



    I can't make it this month. I have a church commitment to help with Art on the Avenue in Del Ray.

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  • Cuetang
    Cuetang Member Posts: 575
    edited September 2013

    Odie-- count me in!



    Edie61-- I'm in Reston. If you can, bring a friend/family member with you to the surgeon so they can take notes or ask questions that you may miss (there's only so much you will hear).

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  • McKatherine
    McKatherine Member Posts: 300
    edited September 2013

    My son has a soccer game but I think I can come and just leave a little after 1:00. :)

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014

    Sigh, as much as I wish I could make it, I can't. Just way too far, especially on a Saturday. :( Guess my spot in PWC is not north enough to really be Northern VA.



    Anyone else from Quantico/Stafford/Fredericksburg besides me and Fredntan?



    I guess I'll bow out at this point.

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  • Cuetang
    Cuetang Member Posts: 575
    edited September 2013

    momof5kids -- how are you doing after your surgeries?  It is pretty far from you, hopefully one of these days we will get to meet!

    Odie-- I'm bringing a friend's friend who's not on BCO along.  She's having surgery in mid-October so I hope we can all help calm some of her nerves! 

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  • fredntan
    fredntan Member Posts: 1,821
    edited September 2013

    Dc Veg fest is sat. I will be there. Anyone else going?

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014

    Hi Cuetang,

    Doing well, thank you for asking...it was a 6# tumor...it was a leiomyoma.  Which they said was extremely rare due to the fact that I have not had a uterus in 7 years.  It was however, large enough (over 20cm) that they needed to make a 9" vertical incision to get it out; I ended up with a hematoma and a blood clot (they took me off tamoxifen for a month), but once I got beyond that it has been smooth sailing.  They also took one ovary. The gyn/onc said it was covered in complex cysts and looked "suspicious". But, the body being a wonderful thing, my other ovary I guess picked up the slack...I would never know I only have the one.

    So, given the fact that I had a leiomyoma 7 years post hysterectomy, I asked my onc if I can still get uterine cancer...the answer: YES.  Guess just like that mastectomy, they can't get every cell. I also have growths on my thryoid and have just been diagnosed with hashimoto's thyroiditis (though I am not hypo yet).  My onc is sending me to the genetic people at Johns Hopkins...she is concerned that I have too many growths LOL

    Anyway, I would love to meet up one day!  How are you doing/feeling?

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014

    Fredntan - I am not going, but I did PM you Laughing

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  • Edith61
    Edith61 Member Posts: 52
    edited September 2013

    Trying to find Peggy some how had to re set up a account i was edie61..my surgery has been put off for the 2nd due to my ekg waiting on calls from surgeon/Oncolgy DR they are going to see what can be done....

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  • Cuetang
    Cuetang Member Posts: 575
    edited September 2013

    Fredntan-- I have a Walk for Paws event on Saturday and won't be going.  I just looked it up and it looks interesting!

    momof5kids-- if it's not one thing it's another...  Here's hoping that that'll be the end of funky growths!  Wink.  I'm doing okay -- start Lupron next month, so I'm going to be hot flashing away!  Smile  My MO is also sending me to a genetic counselor despite my test showing negative for BRCA.  I escaped the first time, but guess I can't escape this one! 

    Edith61-- which Peggy are you looking for?  Hang in there, waiting for test results always sucks $#@%.... 

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014

    Hi Cuetang,

    I hope it goes well for you on the Lupron.  My onc never suggested that or removing the ovaries, though I was barely ER positive, so maybe that is it.  I wonder if the tamoxifen is doing anything for me. 

    Did you have just the BRCA test?  Mine was negative as well, but now they want me to do the BART also, given the strong family history of young BC.  They also said I could have cowden syndrome (I have small, flesh colored growths on my hands, in nose, etc).  Will be interesting to see what they come up with. One thing they will do is come up with a screening plan for me and the kids. 

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  • fredntan
    fredntan Member Posts: 1,821
    edited September 2013

    What is bart? Dr google didnt help me on that one

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014

    BART stands for the BRACAnalysis Large Rearrangement Test (BART).  The BRCA test sometimes "misses" sequencing for the BRCA1/2 in about 12% of BRCA1/2 patients.  So, the BART test is supposed to fill in this gap.  Why it is not part of the BRCA test, is beyond me. Being that I am the 3rd generation to have "young" (under 50 BC -me DCIS/ADH lupectomy at 23, IDC at 44, my mom had bilateral at 28, her mom in her mid 40s, plus that grandmother had 2 of her 3 sisters with bc in their 60s), they want me to take the BART test since the BRCA came back negative 7 months prior to my diagnosis. 

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  • Cuetang
    Cuetang Member Posts: 575
    edited September 2013

    momof5kids-- good luck with finding out some more of the information!  I looked up Cowden's Syndrome, interesting that they think that's a possibility as well.  It will be interesting to see what they tell you after everything.  I didn't do the BART (was too annoyed to want to pay the $700 because my insurance plan doesn't cover it), so I'm waiting until my insurance plan decides to do it before I go for the BART. 

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  • mary625
    mary625 Member Posts: 1,056
    edited September 2013

    I'm getting ready to have the Cowden's syndrome testing too.

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014

    Hi Cuetang - my insurance would not pay the first time either. I have new insurance this year (and I'm sure they hate me, ha!) and I'm hoping they'll pay. It annoys me that this is not part of the original test!



    Mary625 - when will you be tested? I had never heard of cowden's until they mentioned it to me. After looking, I do meet many of the criteria, though many of the items could be unrealated as well. I always considered myself healthy, and never thought much of lumps and bumps, but I think this past year is turning me into a hypochondriac. I just don't trust my body anymore.

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  • mary625
    mary625 Member Posts: 1,056
    edited September 2013

    I'm not exactly sure when I'll be tested. I'm talking to the genetics counselor one week from Monday. What happened to me was that I decided to do a test called 23andme. It's a $99 test and you can find more info on their website, www.23andme.com. I got my results, and there was no mention of Cowden's syndrome. There were some other things that I wanted to have a better understanding about, related to cancer and to autoimmune diseases. They have an affiliated genetic counseling service, so I decided to use them. During my phone appointment, one of the first things they mentioned was Cowden's Syndrome. They asked me if I had the lumps and bumps, and I don't think that I do. They had already asked me in a questionnaire if I have a head size that's difficult to fit in hats, and I said yes. All of that, along with my diagnosis, my grandmother's uterine or endometrial cancer at a young age, and my mother having colon polyps (but never any cancer of any type), has led them to suggest counseling for a possible Cowden's syndrome test if I decide to move forward with that. This all just happened last week.



    It really sucked because I braced myself for handling whatever would come up on the 23andme reports and dealt with that. I was not expecting something further like this. But like I always say, breast cancer is the gift that keeps on giving.



    Just to summarize for others, it seems that Cowden's Syndrome is a cluster of cancers including breast, endometrial, thyroid and colon, and is familial/hereditary. They've also noted the correlation for large head size and the small lumps and bumps under the skin which may be external, internal or both. Colon polyps are also correlated.

    Edited to say that I had the BRCA test and counseling at Georgetown. I gave them the same family history. They never mentioned Cowden's syndrome or any other hereditary syndromes that I could be tested for. I don't know who will end up being "right" or "wrong" here yet. I'm trying to do this for my sister and for myself...the latter being I would know whether I need to be more vigilant about screening for the other cancers. In general, I wanted to know what other types of diseases even non-cancerous that I might have inherited so that I can do whatever I can to prevent. I figured after Stage III BC, if the info linked out or got misused, what further damage could be done anyway.
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  • odie16
    odie16 Member Posts: 1,882
    edited September 2013

    Mom of5kids, I am so sorry and hope you will join us when we have the lunches closer your way. So Ce we are scattered all over the area, I try to vary the locations.



    Just so happens the next luncheon is next Saturday at Guapo' s in Fair Lakes at noon.

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  • mfm48
    mfm48 Member Posts: 110
    edited September 2013

    Edie61, I live in Ashburn.  Am having (dreading) my second chemo treatment this Thursday.  Would be happy to connect if I can help at all.  I had partial mastectomy in 2009 for a Stage 1 IDC which measured 1.5.  No chemo, no radiation.  My "recurrence" scores (from a test called an OncOTypeDX test) showed an unlikely recurrence.  Unfortunately for me, it did recur just under the skin in the reconstructed breast.  Go figure.  Now I have decided to do the chemo and radiation to kill all lingering cells. I love my breast surgeon and oncologist. They are in Arlington, but worth the drive.  Please let me know if you have any questions I can help with.  I'm sorry that you are going through this! 

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  • odie16
    odie16 Member Posts: 1,882
    edited October 2013

    ««««« Reminder - lunch noon on Saturday at
    Guapo's in Fair Lakes... Hope to see you
    there!

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  • mary625
    mary625 Member Posts: 1,056
    edited October 2013


    I think someone asked me to report back on Jackson Physical Therapy. I've been having lymphedema treatment there. I've been very pleased so far. I might just finish next week. We'll see.

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  • odie16
    odie16 Member Posts: 1,882
    edited October 2013


    Next luncheon is Saturday November 2nd at the Outback Steakhouse in Springfield.

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited October 2013


    yay!!! My plastic surgeon was intrigued by our luncheon. He is totally awesome. I'm starting chemo 10/24 and having my port put in tomorrow so please send me good vibes.

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  • odie16
    odie16 Member Posts: 1,882
    edited October 2013


    Sending cyber hugs and prayers your way for tomorrow..Hang in there!

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013


    thats my anniversary on the 24!! good day to start killing some cancer cells

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