Jewish Warrior Sisters
Comments
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Baruch dayan ha'emet. I'm so sorry Leah.
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So sorry to hear that Leah.
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So sorry Leah. May she rest in peace.
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Leah,
My she rest in peace and may sweet memories of her comfort you. Whether we are six or sixty, our mothers our still so important to us.
Caryn0 -
Leah - Barch dayan ha-emet. I'm sorry to hear about your mother.
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Leah wanted me to let you know that I have the phone numbers for her sister and her father should you wish to call her in LA. Please send me a pm if you want the numbers.
Leah...baruch dayen emet. May your mother's blessing be for a memory. Karen
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Leah, I am so sorry for your loss. May she rest in peace.
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Leah, so sorry for your loss.
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I had a weird experience last night. I live in a small, cohesive community in NJ. Last night was the tenth yartzeit of a beloved fellow member of the community, a woman who died of BC at age 40, with seven young children. I hesitated a little about going to the yartzeit gathering, but I admired this woman, and wanted to be there. But a lot of the women there (it seemed to me) could barely meet my eyes. Like, "oh, no, not another one."
"Hey!" I wanted to say, "I have a good prognosis! I'm planning on surviving, ok everyone!?" Of course I couldn't say that, because of course no one had actually said anything like that. I even had the positive feeling that I could ask this woman's neshama to be a "meilitz yashar" (spiritually intercede for me). But of course I didn't feel I could say that out loud either. Most people just can't handle the anxiety.
I thought you ladies would understand. Thanks for hearing.
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For as open as we all are about our bc, it is still such a boogey man for many people. I think the yahrzeit gathering was probably typical . When I was first dx'ed I went to the memorial service of a friend who had passed away from bc. I knew almost everyone there but didn't want anyone to know I had bc too because I thought the reaction wouldn't be good. Even now, I know that many people are uncomfortable talking about it and will sometimes ask me with a grave tone and a lowered voice, how I'm doing. Ugh, this just reminded me that my sister's second yahrzeit is fast approaching. The first one was so difficult.
Caryn
PS: my parents and brother all live in NJ0 -
We are very close with many people in our shul community....a few months after I was Dx was theunveiling of a woman who had died of re-currence from BC....fortunately, her lovely husband understood when my DH said that I couldn't make it to the unveiling that it was just too close to me....and about two years later someone dies from melanoma....we weren't close, but once again, I couldn't go to the funeral...her husband understood.... Thank goodness people aren't hush hush at shul....a gal who was Dx shortly before me had a second recurrence and her husband told my DH privately so we wouldn't hear thorugh the grapevine.....I'm rambling.....but as I am coming up on 7 years since hearing the dreaded words, I think people don't think much aboaut me and BC........BUT it still un nerves when I hear of a new Dx.....
Albydec...sorry that you had to deal with this.....And Caryn...my thoughts are with you as you approach your sister's yarzheit...may her memory be for a blessing and may her neshama have an aliyah.....
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I sent my youngest to Schechter. Every single year at least one mother would get breast cancer. These were relatively young woment with young children. One died. What is going on with jewish women? I know the brca gene is in the jewish gene pool but most people don't have it. I would say that these Jewish women waited to have children later in life (a risk factor) but you are describing a woman with 7 children. When I was growing up I didn't know anyone with BC. Does anyone know why it is this prevalent in the Jewish community? Pure genetics?
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I think there are mutations beside BRCA that are still unknown .
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That makes a lot of sense!
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What Caryn said! I am brca and BART negative, yet I've had primary breast tumors TWICE, the first time when i was very young. Something's going on inside oc me. Plus youngish women who are diagnosed with bc do not develop the condition because of anything they have or haven't done recently - it is my understanding that bc starts up 7 to 10 years before a lump can even be palpated. The protective action of breast feeding, for example, applies to women, who might have developed bc years later.
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I am BRCA negative too however my paternal grandmother had bc in her early 40's and my sister had uterine bc at 50. Both passed away and there are assorted other cancers in my family. I am just speculating, of course but I do think there are mutations at play in our Ashkenazi genes.
Caryn0 -
I worry most about ovarian cancer at this point, however my onc explained to me that my risk given my brca negative status is only 5% higher than that of an "average" woman. My onc and my gyno disagree about a prophylactic ooph in my case (to remove the worry component) - onc feels it's riskier than the risk of ovarian ca itself; gyno feels it's a simple operation.
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I'm BRCA neg as well...but my onc recommended having my ovaries out as part of my Tx protocol.....I had it done laprascopically (sp) after chemo and rads....it was hard being slammed into menopause, but I don't regret having the surgery...for me it was one less worry....prior to Dx,I never had any gyn problems, never had a call back from a mammo, but after Dx, I had an ovarian cyst!!!! I took AI's for 3 1/2 years but gave up after struggleing with too many side effects that were affecting my QOL.....Next Sunday (Feb 3rd) is 7 since since I heard those dreaded words!!!! I'm the first person in my family to have BC....my biological paternal grandmother had cancer in the 1950s when she was in her 50's.....supposedly stomach cancer....I have no contact with this side of the family and haven't all my life, so dont' know if there are any other cancers....but on my mothers side I'm the first....I agree that there is still much that we don't know.....
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I am still on the fence on whether to do the braca test. Two paternal aunts have had BC and maternal Grandma had BC I have invasive lobular cancer. My 29 yr old daughter's gyno says that she is too young for a mammo. I am tempted to call the gyno and insist that she order a mammo for my daughter (DD would kill me if I did cintact her gyno.)
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Why are you on the fence? Have you spoken with a genetics counselor? They can really help you explore the pros and cons and the implication of the test for both you and your daughter. This might be really helpful.
Caryn0 -
The test is just a blood draw, so its not the test to worry about, but whether or not you want the results....they say that our daughters should have first mammo 10 years younger than we were when dx....but with a strong family history, it might be important to start screening earlier.....yes 29 is "too young" for a mammo with NO family history and no symptoms, but your DD has a family history.....I agree with Caryn, that talking to a genetic counselor with your DD would be helpful for deciding on the test as well as when your DD should start screening...All the best to you....
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Definitely get off the fence and have the test done. Do you also have other female relatives on that side? Getting tested would be important imformation for them and their families as well.
Karen - That's a great milestone to be looking forward to! And thank you for being such a good support for the rest of us.
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Forgive my ignorance, Karen, but what are AIs?
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Ablydec....not ignorance at all!!! Aromatase Inhibitors (Arimidex, Femara, Aromasin)....used in post-menopausal women who are ER+/PR+
Tamoxifen is used in both pre and post menopausal women who are ER+/PR+
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I had the BRCA test for my daughters, who are young adults. I was negative but had I been positive, it would have been important for them to know. My sister died from Inflammatory breast cancer so there is likely something funky in our genetic make up but it is not the BRCA gene in my case.(My mother and grandmothers did not have breast cancer; I have no aunts). My daughters consider themselves at high risk for breast cancer, and one of them has a gynecologist who specializes in women who have had and who are at high risk for breast cancer. She searched for one after another gynecologist called her paranoid for not wanting to use a hormone based birth control. So these are issues, not only for us, but for our daughters...it is sometimes hard to know what to do.
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I was away w/o access to the computer, so I just went to look and what's up. The topic of g enetics can be very misleading. Let me explain. Our family , especially from my father's side had a heavy dose of BC cases and my own father died of colon cancer which is known to be related to BC. This goes back many years ago before there was any genetic research, and no one had heard of DNA. Nevertheless, I was convinced that there were genetic factors and my gynecologist agreed and sent me for a baseline mammogram when I was 27 or 29. Don't remember.I went once every two years, and sure enough at age 37 invasive ductal BC was found in a very early stage in my mammogram. That really saved my life, because it hadn't affected any nodes yet. I had a MX then. Later, due to problems after tamox etc, I had ovaries and uterus removed. Fast forward 17 years later, and I was diagnosed in my yearly mammogram and ultrasound with primary cancer in the other breast. My sister was diagnosed with ovarian cancer and is struggling along. She neeeds a medical miracle. We did find out that even though the regular BRCA 1 and 2 say negative, there is a mutation that many of the family are stricken with. So don't sit complacently if you get negative results form BRCA tests, if you know of close relatives that were diagnosed. There is a good chance it is a mutation. At that point prophylactic surgery makes a lot of sense, especially if you are after childbearing years. I don't want to sound like an alarmist, but knowing what you are up against can literally save your life. Especially ovarian cancer is very sneaky. By the time there are symptoms, it is usually too late. According to my doctors, BC occurs one in every 9 women, but by Jewish Askenazi women, it is even more frequent. If my letter makes you sit up and take heed, I have done what I meant to. BC doesn't have to be fatal, provided it is caught on time, but if it can be prevented altogether (and I don't have to tell you galls how great ot would be not have undergone chemo) it is definitely preferable. This is even more true about ovarian cancer. Please be informed so you can make the right decision for you. By the way, if your insurance doesn't cover extended genetic testing to check for mutations, it may be a worthwhile investment that can be helpful to you and others in your family. One more piece of information: males in the family can also get breast cancer or related cancers and even if they live out their lives w/o any, they can pass on the gene to their offspring as happened to my male cousins (one has had breast cancer and now has cancer of the pancreas).
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dassi52--to test for a mutation would there need to be more than one family member with a cancer history they are looking at? I did not know that you could do more than BRCA 1 and 2. Thanks for this information.
Mandy
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Hi Mandy,
My sister was tested possibly because I had already had BC (and then wasn't tested because they didn't have it in 1991), and most likely also because of the family history in my father's family. I didn't ask her, and doubt she'll remember. When her mutation was found, it became very simple. All other close relatives that consequently discovered BC or those that could be genetically affected, went to check for the specific mutation. If you know you have it, it's a ticking time bomb, especially for the females, and that's where prophylactic surgery might be a good solution. As far as BC goes, I thought I had already had it in 1991, so I left the other breast alone other than yearly mammograms and ultrasounds, and the oncologist. But guess what - surprise. I got it again, unrelated to the first, but directly related to the mutation! Had I realized it beforehand, I might have done BMX without waiting for CA to strike a second time. If you're going to end up having such a huge risk, at least you can escape the chemo a second time by doing prophylactic surgery. (or escape Mets etc.) You all know the regimen. Wishing all of you negative results for either BRCA 1, 2 or any mutations!
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New topic: sheitel/wigs
I have been wearing a sheitel for many many years, but it clips on with clips, or combs, which need hair to attach. Does anyone have a better way now that my own hair is slipping down the drain? Thanks, Shoshana
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Shoshana....I didn't like my wig (can't call it a sheitel!!!) so I only wore it a handful of times....but I don't remember it having problems staying on, but I do know they make caps and or bands to wear under wigs...maybe that will help.....MY oldest DD wears a shietel and I think she puts something over her hair to help keep her hair in place.....
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