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Jewish Warrior Sisters

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  • rachelvk
    rachelvk Member Posts: 564
    edited November 2011
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    Goldie - That's a lot of hard news to deal with in one day. And what amazing strength to go through what you've been through without her knowing. You're both in my thoughts.

  • Leah_S
    Leah_S Member Posts: 1,929
    edited November 2011
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    Goldie, do you want to post your mother's name in the Misheberach thread or here? I would like to be able to daven for her.

    Please send her good wishes from me.

    Leah

  • karen1956
    karen1956 Member Posts: 4,522
    edited November 2011
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    Wishing everyone a good Shabbat....think its already Shabbat in Jerusalem...think the time difference is still 9 hours!!!!

    I'm going to print off the misaberach list....might copy and paste to word to make it a little bit easier to manage......

    Hugs, Karen

  • rachelvk
    rachelvk Member Posts: 564
    edited November 2011
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    Thanks Karen.

    Shabbat Shalom, everyone. 

  • SheriBell
    SheriBell Member Posts: 32
    edited November 2011
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    Was curious if anyone got genectic testing for the BRCA gene since it is more prevalent with Ashkenazi Jews.  I had it done and it came up negative and I am not sure that made me feel any better - I was hoping to have an explanation as to why this happened to me.  

  • rachelvk
    rachelvk Member Posts: 564
    edited November 2011
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    I did get testing and am brca2+. What that meant on a practical level was a) I need to lose the ovaries asap; and b) my sister should get tested.

    I guess in some ways it helps 'explain' it. However, my Mom's family is not Jewish, and her sister had breast cancer 5 years ago (DCIS). So..... I'm assuming I 'got' cancer because the brca gene came from my Dad's side of the family, but who really knows if there's something on my Mom's side? I completely understand wanting to have some answer like that.

  • karen1956
    karen1956 Member Posts: 4,522
    edited November 2011
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    Sheri....I was tested for the BRCA gene after bilat (right before starting chemo) and I am BRCA-....The explanation for getting BC is because 80% of the women with BC is just because....only 10 - 15% is genetic.  I am the history in my family for BC....1st one Dx

    RachelVK....yes, teh BRCA gene can be on both sides (mom and dad's), but non Jewish people also carry the gene.....just more prevalent in Ashkenazi Jews.....Because I was ILC and being Jewish and being stage 3 and on and on, part of my Tx protocol was to have my ovaries out.....when I asked the geneticist if anything would be different if I was +, she said no, not for me as I was doing everything they would recommend for someone +...I had bilat, chemo, rads, and ooph and AI's....its a good thing I did the bilat as the prophy side was pre-cancerous and I would be going down the BC journey again if I didn't.....The good think about being BRCA- is for my children.....

    12 years ago today, my beloved grandmother passed away....my mother and my uncle (her brother) observe the English calendar....her yarzheit is not for a couple more weeks....she passed away right before Chanukah.....But I remember her today and all the good memories I had...she was a young grandmother (I think she was 45 when I was born) and she was a fantastic lady....I miss her.....I was lucky to have her so long in my live.....I was 43 when she passed away....

  • lago
    lago Member Posts: 11,653
    edited November 2011
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    Just  found this thread. Do you accept athiest Jewish warriers too? (When I met my onc NP I told her it's a good think I don't believe in g-d or I'd be reallly pissed at her right now. I think my Irish Catholic onc NP's jaw dropped… but we eventually got to know each other and got along great. She just didn't know me or me east coast sarcastic humor.)

    SheriBell One thing I found interesting when I first started this  journey over a year ago was initially no one mentioned anything about Ashkenazi Jews having a higher incidence of breast cancer (and other cancers) or the BRCA test. When I found out and asked my nurse at my BS office if I should look into this they sent me to a genetic counsler.   Genetic counsler was useless. She really didn't think I should have the test.Then when my BS found out he insisted I have the test now that he know I was (Ashkenazi Jewish).

    Hmm if you knew my last name (and I didn't take my husbands) you would wonder why they couldn't figure out I was Jewish. Tongue out  But I guess most people don't think about who is and who in'ts Jewish except Jews and Mel Gibson. For some reason we seem to have this habbit of counting all the Jews in the room. Wink

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited November 2011
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    The last name thing is always funny. Neither my ex husbands last name nor my maiden name "sound" Jewish. Legally, I use both . Someone (forgive my faulty memory) did a comedy skit that was like a game show called "Jew, not a Jew" It was pretty amusing, especially when looking at last names. I've long given up the guessing game. Lago, you are more than welcome here. I am not very observant but clearly a strongly cultural Jew given that I grew up in a Yiddish speaking household in the Bronx. We welcome all members of the tribe!

    Caryn

  • lago
    lago Member Posts: 11,653
    edited November 2011
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    exbrnxgrl So true about the last name… I do tell people that Woopie is my sister but no one believes me.Tongue out

    All this talk about last names, who's a Jew and Chanukah… linky (note the Chicago reference)

    and one of my ohter favorite Chanukah songs: linky 2

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited November 2011
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    Lago, did you know that Whoopie Goldberg's real first name is Caryn? And, my father's family's original last name was Goldberg before they Anglicized it. I feel a certain strange kinship to her.

    Caryn PS: I love the Adam Sandler song!

  • orangemat
    orangemat Member Posts: 368
    edited November 2011
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    This has to be the cutest Chanuka song I've ever heard. And it's original.
  • SheriBell
    SheriBell Member Posts: 32
    edited November 2011
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    "Jew" or "Not a Jew" was a very funny SNL sketch - game show sketch.   I am happy to be BRCA negative because I do have 2 daughters and I am glad I did not pass anything down genetically.  I am the first one dx in my family as well.

    My oncologist is a colon cancer survivor which I found interesting but he affirmed to me that most women get breast cancer with no family history.  So weird.

    I wish they would figure out what causes cancer already!   Then we could just avoid the catalysts! 

  • hrf
    hrf Member Posts: 706
    edited November 2011
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    I'm BRCA2+   My mother and several of her first cousins all died of bc. That was in the days before anyone ever heard of BRCA. Since then I and several of my cousins have all been dx. So unfortunately, this is a big issue in our family. My mother was a Holocaust survivor - spent time in Auchiewcz (not sure of spelling). She came from a very Orthodox family -- she lost much of her faith as a result of the war and never understood "why?" Our home was very culturally Jewish but not at all observant. 

    Like SheriBell -- What's the cause? Where's the cure? I have a 4 year old granddaughter. There is a 50% chance that she carries the gene mutation. And even if she doesn't, her other grandmother recently died of bc and 3 of her 4 great grandmothers died of bc. I want the cause and the cure before she ever has to even know about any of this.  

  • lago
    lago Member Posts: 11,653
    edited November 2011
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    hrf that's interesting. My grandmother (Polish) came to this country with her mother before the war. The rest of her family perished in the concentration camps. She kept a kosher/orthodox home but didn't believie "in a G-d that would let little children suffer."
  • SAB
    SAB Member Posts: 1,121
    edited November 2011
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    hrf and lago--My mother was also an Aushwitz survivor...she felt a personal connection with G-d.  "Oh, he'll understand...after what he put me through!"  

  • hrf
    hrf Member Posts: 706
    edited November 2011
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    It's interesting that with so many who had the same experience, they either lost their faith or strengthened ..... who's to say what is right or wrong?

  • Caya
    Caya Member Posts: 46
    edited November 2011
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    I was tested for the BRCA genes, came out negative, happily for my 2 girls. Ashkenazi Jewish background on both sides, age 48 at diagnosis - my onc. kept telling me I would be negative, but I wanted to have the test to be sure.  I am the first one diagnosed in my family as well.  Lucky me!!

    My first name is Caryn also - named after my great uncle Charles, Tziviya Leah. 

  • lago
    lago Member Posts: 11,653
    edited November 2011
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    I'm the first too. Diagnosed at age  49 (but it should have been at leas 48. Damn those blind radiologist at my former imaging center). I wanted the BRCA test because I have a brother, sister, 3 nieces and a nephew. 

  • pessa
    pessa Member Posts: 137
    edited November 2011
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    Same here.  First in the family with BC.  Diagnosed at 58 (I'm 60 now) but likely had DCIS for several years before it became IDC.  I also pressed to get the BRCA test and was negative, fortunately.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited November 2011
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    Another Caryn! I always get excited as there are so few of us.

    Caryn

  • Leah_S
    Leah_S Member Posts: 1,929
    edited November 2011
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    I'm BRCA- but take no comfort in it. I have what is called an "extensive" family history. 2 aunts with bc, grandmother died of ovarian ca, another aunt died of colon ca (considered "related" - we're at higher risk for colon ca also). My onc's treatment options & suggestions for me are the same as for someone who is BRCA+ and my genetic material is part of research study to find other genetic mutations that predispise people to bc since BRCA 1 & 2 are not the only genetic mutations that do that, they're the only known genetic mutations. I think I would prefer to be BRCA+ since then at least my 4 daughters and 7  (so far) granddaughters could be tested.

    Leah 

  • rachelvk
    rachelvk Member Posts: 564
    edited November 2011
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    Hi Caryn. Good to hear from you. There actually is another Caryn at my synagogue, so I've started getting used to the spelling.

    I'm the first in my family to be tested. Unfortunately my sister has subsequently tested positive, too. She's younger than I am and just started her family, so hopefully she has a little time to mull her choices. She's got a good head on her shoulders, so I'm sure she'll find an approach that works for her. We're assuming it's from my Dad's side (Ashkenazi), especially since his grandmother died of ovarian cancer and his great-aunt of breast cancer. BUT - my mom's sister had breast cancer 5 years ago, so there's a part of me that wonders if there was more at play.

  • goldie123
    goldie123 Member Posts: 8
    edited December 2011
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    my father and his sister both diedof pancreatic cancer . he had also earlier had breast cancer. i was tested 10 years ago when my sister had breast cancer  , she was brca+ but i was brca-. i asked the genetic counselor if this meant that i didnt have to worry about getting bc and she told me no more than the rest of women

    when i was diagnosed 5 years ago my onc id that there was probably another gene involved that they just didnt know about, my extensive family history is full of cancers - breast, pancreas, colon, ovarian 14 members in all,so she told me to assume there is a genetic component and make sure that my daughteers and their children remain vegilant

  • rachelvk
    rachelvk Member Posts: 564
    edited December 2011
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    I sometimes wonder whether knowing the genetics (at least to the extent we can) is a blessing or a curse.

    My Dad is actually going to get the test - he's had a lump for a year and despite being told it's nothing (and having a mammo), a new doctor is finally going to do a biopsy and ordered the test. On the other hand, my mother has been told she's not eligible for the test, even though she has a daughter and sister with breast cancer, because she hasn't been diagnosed. Granted, we're assuming my gene came from my Dad's side of the family, but I wonder whether there's something still undiscovered from my Mom's side...

  • karen1956
    karen1956 Member Posts: 4,522
    edited December 2011
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    Racehel....not sure what is better....since I'm the "history" in my family...no one has been tested but me since I'm BRCA-...I too believe that there are other genes that we just don't know about....when I was Dx, my onc rec that my mother talk to her doc about taking tamox, but mom's doc said no to it....mom is young...only 77 (well relatively speaking as I'm 55)...My bio father's mother (guess that makes her my bio grandmother) died of cancer in the early 1950;s when she was in her 50's....possibly stomach cancer...but then again could it have been ovarian cancer...I've not had any contact with my bio father in 50+ years, so don't know anything about that side of the family...on my maternal grandfather's side there is some BC, but the relationship is not that close for me to worry about.....My "relief" in being BRCA-, is that my daughters are not at a much higher risk of BC.....they are at risk....DD's are 25 and 13...Please G-d by the time my 13 year old is grown, we will know much more about this dreaded disease.....my 25 year old is very big chested, so in a way I worry about her...she is a 32DDD!!!  Even when I had boobs, we never got our bras mixed up!!!!

  • SAB
    SAB Member Posts: 1,121
    edited December 2011
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    Shabbat Shalom sisters.  Have a peaceful weekend!

  • rachelvk
    rachelvk Member Posts: 564
    edited December 2011
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    Thanks, SAB. Echoing those greetings for a peaceful and restful Shabbat.

  • SheriBell
    SheriBell Member Posts: 32
    edited December 2011
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    Shabbat Shalom Girls.  I had a titch of good news I think.   I had a check up from my PS (I am 2 months out from exchange surgery) and he has decided that I need some fat grafting.  So of course I inquired what this entailed - apparently he is going to take some fat from my abdomen and graft it into some thinner dimpling areas - they look pretty good now but that should make them look great -yes you read it right - TAKE FAT OF MY STOMACH and it will be covered by insurance - I guess if there is a silver lining here.....yes I am vain!  ha ha

  • rachelvk
    rachelvk Member Posts: 564
    edited December 2011
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    SheriBell - Go for it! We need those siver linings.