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twins and genetic history

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bearsilu2 View Drop Down
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    Posted: 08 Nov 2011 at 10:42pm
Hi guys, My identical twin has Triple negative and it is coming up on her one year since diagnosis. I have been vigilant with the mri's as Nancy was before her diagnosis. She has gone back to work as an elementary school counselor but has alot of stress since they moved her job while she was out for Chemo. I Wonder if she should just go out on disability. I read all this stuff about stress and how it is no good for her. As it is she and another teacher are suing the school district for moving them while they were out sick and not even TELLING them. Nan had already worked there for 15 years! She had not too much trouble with the chemo or radiation that was HORRIBLE but she was out of work for almost five months. I worry for her, I worry for her 14 year old son and I worry if I will get this dreaded illness. Is there anything else i should be doing to help her out here? We both get terribly depressed, yet i try to treat her like usual so she doesnt despair.  I am going for my check up again in December as is she. I want to help her out but i dont know what to do!!!
Barbara A. Wild
Identical Twin Sister of TNBC diagnosed 12/2010 stage 2 Grade 3 Lump. 1/2011, Chemo 2/2011, Radiation completed July 2011. 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: 09 Nov 2011 at 2:08pm
Hi Barbara,

I am sorry that you and your sister have to deal with this. My sister who is two years younger than me is my best friend. She has been one of my main sources of support through my cancer journey. Although she lives in another country (3 hour-flight from here) she managed to come couple of times during my treatment to be with me and she also came to help me take care of my son when I had one of my surgeries (he was a year and a half then). I canít tell you just how much her help has meant to me. And beyond her physical presence she has been there for me all the time. She is one of the people that I can easily talk to about my fears. I donít like doing it with my parents as I hate to worry them but she is always there to listen and to understand.

One thing that has helped me a lot in many levels is focusing on alternative ways of fighting this and my sister has been very supportive in that sense as well. She actually gave me a book called Anti-cancer a New Way of Live by Dr. David Servan-Schreiber right after I was diagnosed. It brought a lot of hope to me as it opened a window to things beyond the medical treatments that I could look into to help me improve my chances of surviving this.

I guess Iím just telling you this to show you how much you can do by just being there for her and listening to her. My sister always says that she would like to do more for me but the truth is that she does a lot and I am incredibly grateful for it.

I have a genetic mutation that makes me prone to breast and ovarian cancer; it is called BRCA1. There is a heavy cancer history in my fatherís family and sure enough we found that I inherited the mutation from my father. You have a 50/50 chance of inheriting it from one of your parents and I donít know for identical twins how these percentages workÖ It was a huge relief for me when my sister got tested to find out she didnít have it. Her genetic counselor at UPenn actually told her that by being negative for this known mutation her chances of getting breast CA were slightly lower than those of the general population. Has your sister been tested for one of the genetic mutations that cause cancer or received any genetic counseling? I guess this would be a good step for you to take in order for you to find out your risk. Unfortunately not all of the possible mutations that could make you prone to breast cancer have been identified yet but there are several that women are being tested for currently.

Finally, regarding your sister issues with her job maybe she wants to explore her legal alternatives? At a conference last year I met an attorney that works for a program called The Cancer Legal Resource Center which offers free information and resources for cancer patients and survivors facing legal issues, including employment related ones. Hereís a link to their website in case you are interested:

https://www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm

Best,

Natalia
Natalia, 36 years
Dx TNBC 10/22/08, BRCA1+
Double Mx 11/20/08 with Recon.
3/37 nodes
Rads 7 weeks done 8/09
ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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bearsilu2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bearsilu2 Quote  Post ReplyReply Direct Link To This Post Posted: 10 Nov 2011 at 7:44pm
thanks so much for your help and response. I have forwarded the link to my sister and have been reading about the legal aid on the site. So much information. I can't imagine having cancer when my kids were little, there is so much to do and so much to learn. Maybe i can be Nancy's info search sister!
Barbara A. Wild
Identical Twin Sister of TNBC diagnosed 12/2010 stage 2 Grade 3 Lump. 1/2011, Chemo 2/2011, Radiation completed July 2011. 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote steve Quote  Post ReplyReply Direct Link To This Post Posted: 11 Nov 2011 at 8:45pm
Dear Barbara,

Nataliaís post is a very important one. Your sister should be tested for the BRCA mutation and as her identical twin, if she has it you have it....but to be sure you should test, if she tests BRCA+.

I am the dad of fraternal twins. My daughter was dx with TNBC and inherited the BRCA mutation from me. Her twin may or may not have the mutation because they are fraternal.

good luck to you...

welcome to our family and sorry you had to find us but glad you did.

all the best,

Steve
I am a BRCA1(187delAG)+ grandson, son and father of women affected by breast/oc-my daughter, inherited the mutation from me, and at age 36, was dx 2004 TNBC
75%invasive quandrantectomy,PBM,LAVH/BSO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bearsilu2 Quote  Post ReplyReply Direct Link To This Post Posted: 14 Nov 2011 at 11:00pm
Steve, Nancy and I were tested for the genes and her genes came out negative so im assuming i am too. I have fraternal twins of my own that i need to worry about getting this too! Im going for my pet scans and things in december and am afraid of what they might find. I cant see how she got it and i wont. To keep from worrying im making her a scrapbook of her year since she was diagnosed to show her how proud i am of her. She might like it....Are there any studies out there that actually test identical twins and breast cancer?
Barbara A. Wild
Identical Twin Sister of TNBC diagnosed 12/2010 stage 2 Grade 3 Lump. 1/2011, Chemo 2/2011, Radiation completed July 2011. 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote steve Quote  Post ReplyReply Direct Link To This Post Posted: 14 Nov 2011 at 11:35pm
Dear Barbara,

I must confess that I am a bit confused...

from what I have read...your sister has TNBC but you havenít had TNBC? is that right?

your sister has tested negative and therefore...you would be negative...so your children are not at risk. If you are negative as long as their father does not carry the gene you children will be negative as well. You should not consider them to be high-risk...

all the best,

Steve
I am a BRCA1(187delAG)+ grandson, son and father of women affected by breast/oc-my daughter, inherited the mutation from me, and at age 36, was dx 2004 TNBC
75%invasive quandrantectomy,PBM,LAVH/BSO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: 15 Nov 2011 at 7:46am
Barbara,

Are you worried that since your identical twin has TNBC that you will be more likely to get it to?  Genetics affect many cancers, but so do the environment we live in and exposed to every day.  I'm not aware of any studies where they looked at identical twins and cancer.  It would be interesting to find out if nature or nurture plays a bigger role.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED8/12,CT NED 11/13

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Post Options Post Options   Thanks (0) Thanks(0)   Quote steve Quote  Post ReplyReply Direct Link To This Post Posted: 15 Nov 2011 at 8:29am
Dear Donna,

in the case of the BRCA mutation...with tiny, tiny exceptions....if you are an identical twin and your twin in BRCA+ you will be BRCA+ as well with all the risks that confers...but if your twin is negative you will be negative as well...

familial (non-BRCA) breast cancer remains an enigma wrapped in a mystery.

actually, there have been several studies regarding twins and breast cancer..But I have not read these studies completely to see if most of the twins were identical or fraternal.

hereís one-


and 


also please look at the related articles on the side of the page.

my eldest daughter (who had TNBC and is BRCA+) is a fraternal twin so I have always been interested in the topic. Her twin brotherís risk is the same as any of my other children 50-50. Only way to know for sure is for him to test.

all the best,

Steve
I am a BRCA1(187delAG)+ grandson, son and father of women affected by breast/oc-my daughter, inherited the mutation from me, and at age 36, was dx 2004 TNBC
75%invasive quandrantectomy,PBM,LAVH/BSO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: 15 Nov 2011 at 9:19am
Steve - Correct.  But, Barbara states her twin has TNBC but has tested negative for BRCA. She also tests negative for BRCA.  There is nothing that says she will ever develop triple negative breast cancer just because her twin has the disease.
This is what I'm reading. It seems the post got a little confusing, or am I seeing this incorrectly?
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote steve Quote  Post ReplyReply Direct Link To This Post Posted: 15 Nov 2011 at 10:22am
Barbara wrote that both she and her sister tested for the BRCA mutation and her sister tested negative so she  (Barbara) assumes that she is negative, too...

Barbara, with all due respect and consideration, can you please clarify. If you tested at the same time as your sister you should have received your results so you would know that you are negative not assume that you are...

Barbara, I am assuming that you do not have TNBC?

To repeat, if you have tested negative and have not had cancer I do not believe your children are at high-risk. But please do not take my word for it...Please speak to a Certified Genetic Counselor...I can help you find one if you would like..

all the best,

Steve
I am a BRCA1(187delAG)+ grandson, son and father of women affected by breast/oc-my daughter, inherited the mutation from me, and at age 36, was dx 2004 TNBC
75%invasive quandrantectomy,PBM,LAVH/BSO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bearsilu2 Quote  Post ReplyReply Direct Link To This Post Posted: 19 Nov 2011 at 11:01pm
Thanks for all your help! My sister Nancy DID have the genetic testing and had negative BRACA 1 and 2. After she had the test, the genetic counselor said that if i wanted to get the testing it would be ok, but not likely. YES im terrified that i am going to get TNBC! I wait every day to feel a lump and my breasts are black and blue from me trying to feel one. (yes i am very wierd!) I have participated in several twin studies for identical twins and know of four sets that have had one or both twins have triple negative, though two were in England. It is so hard, i cant really talk to anyone about this because they arent a twin! Seeing her go through this is awful. Seeing her not in control is awful. Not being the twin with the disease HORRIBLE .. i cant do anything to help her for the first time in my life if i wanted to. We were adopted at four months so she has always been more than a twin to me she is my family. I dont want to complain to anyone because they just say she is going to be fine. I wish there was a discussion group that i could find for twins that have their sibling in this particular situation. Thanks Steve for your help. If its any conselation, i had cervical cancer when i was 34 but ive been fine ever since. Strange, we lived together most of college, after college, worked in the same colleges, in the same fields so who knows how this came on.  I would love for us to BE a study to help someone else out ...
Barbara A. Wild
Identical Twin Sister of TNBC diagnosed 12/2010 stage 2 Grade 3 Lump. 1/2011, Chemo 2/2011, Radiation completed July 2011. 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote steve Quote  Post ReplyReply Direct Link To This Post Posted: 19 Nov 2011 at 11:33pm
Dear Barbara,

for whatever it is worth...probably not too much...in your situation, I think you should consider getting tested..the problem is that your sister tested negative so you will have to have the full panel which is an expensive test. You should call Myriad and see if your insurance will cover it due to your sisterís TNBC and your cervical cancer. I doubt that they will but you can try.

The reason I think you should get tested is because this is making you very upset and perhaps if you know you do not have the BRCA mutation you will rest slightly easier...

Your situation is complicated by a lack of family history, also, so it is a very unusual situation.

Feeling guilty that your sister has TNBC is very, very understandable. There is a film called In The Family about the BRCA mutation and there are three sisters..they all meet with a Certified Genetic Counselor and two have the mutation and the other doesnít and the one who doesnít have it was extremely upset. On some level she wanted to have the mutation because she wanted to be like her sisters...I have dealt with a lot of families where some of the women have it and some donít and brothers with and without..It can be very, very difficult.

If you decide not to test, I would ask the Certified Genetic Counselor if it would make sense for you to be in a high-risk surveillance program. 

Can you come to Memorial Sloan Kettering Cancer Center in NYC to see a Certified Genetic Counselor. They see a lot of high-risk women and they are very smart. Maybe they can give you some guidance?

all the best,

Steve




Edited by steve - 20 Nov 2011 at 1:44am
I am a BRCA1(187delAG)+ grandson, son and father of women affected by breast/oc-my daughter, inherited the mutation from me, and at age 36, was dx 2004 TNBC
75%invasive quandrantectomy,PBM,LAVH/BSO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: 20 Nov 2011 at 1:10am
Hi Barbara,

How fortunate your twin sister is to have you for a sister.

Just a thought............
Are you aware of the TNBC Helpline staffed by experienced oncology social workers?
I have called the the Helpline and found it most helpful.
phone: 877-880-8622.    M-Th: 9am-7pm EST     Fri: 9am-5pm EST

Lot of good information posted above.
The TNBC forums are very supportive.
For some people, a call to the Helpline can provide additional help and support.
Just sharing information........

With lots of caring thoughts to you and your sister,

Grateful for today..............Judy
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