I am a twin. What does she need to know?

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bedo
bedo Member Posts: 1,866

 (My sister?) I was diagnosed with IDC one month ago. We are fraternal not identical. Also,  what does my daughter need to know?  There is no other history of breast cancer in our family. We have no other risk factors. There are no other women in our family that are with us.

Thank you

Does it matter if you were pre or post menopausal when diagnosed?

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  • DiDel
    DiDel Member Posts: 1,329
    edited August 2011

    I am a twin also..identical. My twin had a breast MRI following my diagnosis. She could go on Tamoxifen as a preventative but of course who wants to do that. I did not have the genetic test done since I was sick of test and going broke from medical procedures. If you have the genetic test done it works as a base for your family members to get tested and the costs is less once your genetic profile is done.

    Good luck to you and your sis..hang in there.

    Diane

  • beacon800
    beacon800 Member Posts: 922
    edited August 2011

    My mom had IDC at age 54. She had an identical twin who never contracted breast cancer. It's quite unclear what the risks are for a twin absent a known genetic mutation. I guess she should do close monitoring.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2011

    Bedo--I'm an Identical. My twin had estrogen supported BC in 1996. I'm a nurse. I had a Hyster / bso(ovaries out). I suggested she do the same. She did and is now a 15 year survivor with chemo and no further treatment. It was not the recommended treatment of the time. It know has much support , but I gather that it is still controversial. My BC was dx'd officially by bx in 2009. Mri was DEC 2008. Clean Mammo Aug 2008. I had a horrendous fall in Sept of 08. Hit everybody part except elbows. Falls or trauma are not supposed to be associated with BC. Who knows if this had anything to do with it rearing it's ugly head.

    I was going for a bilat bmx after many years of thought. Very strong hx traced to paternal grandmother. Stats are off the chart. So our situation is totally different. What we did find out was that there was a Genetic counselor at the major cancer center in our state. There was no cost to me to go through the process. The genetic counselor was thorough, but I feel did not get that there was "something unusual about that side of the family. 3 paternal aunts------2 of three had BC, one had a ca of the thumb that should have only been found in the lung". All kinds of people came to examine her thumb before it was amputated. Of nineteen first girl cousins 11 have had cancer on my generation--9 BC. Of 24 first male cousins only one has had cancer to date. Obviously, something is wrong. I believed I avoided BC as long as I did b/c of the hyster/Bso. The women have ranged in age from 40-74. The 2 aunts were in late 60's and early 70's. The cousins range from 40 to 64. One other cousin and myself being 59 and 63 at onset, The rest were 40 to 46. (youngest is a guess) None of this started to show up until the mid 90's.

     I thought about the BMX for years. Talked with PCP for three years. Then decided to do it. Why then, so seriously. I was pushed from within, call it what you will, I call it divine intervention. All mammo's were clear and for some reason received the clean mammo letter from August after I had the MRI in DEC. ??????Unknown why the delay. Told at time of Mammo it was clear. So, I didn't worry. But there was trauma to my Nipple from a flip binder that caught it just before the Mammo, the pain persisted for months and then the fall. Since getting approval for an elective is so difficult, the ONC used the Nipple pain as cause for the MRI. BINGO there it was. The pathology report said that the IDC included a tract up to the nipple.  GO figure.  I do worry when I read off women wanting a nipple sparing MX, but I am projecting b/c of my own experience.

    See if there is a major cancer center in your state that is doing counseling. But remember what I have told you. When we had our last group counseling--I had two cousins on skype and speaker phone who are also RN's. One had a mom and sister with BC and said she had less than x(think it was about 13%) CHANCE OF OCCURRENCE. That blew my mind in light of total family hx and her immediate family hx.

     The counselor was using the chart that is most widely used in the USA. I wish the woman that produced the analysis was really looking at our family hx. Somehow I believe she would have said "WHOA wait a minute.". All that were tested for BRAC were negative. Two cousins in one family , their parents were tested and it indicated it came from the paternal side.

    My one cousin , a sister of the two in one family that had Bc contacted the woman that identified the BRAC genes. She was told that there were identical twins and that tissue samples were still available from my twin. Also, that I was willing to undergo any type of testing they wanted including BX, in the furtherance of science. I felt that if I developed BC, then a before and after look of tissue or whatever might lend to some clue. ------Two calls over several years. Each denied. Then I subsequently developed BC. Was it a scientific loss, don't know, pre BC data not available.

    You are Fraternal twins, your genetics are different. Fraternal twins are essentially two pregnancies. Two separate EGGs being fertilized. Whereas, identicals are the same Egg that at a point of splitting(the egg splits geometrically>2>4>8>16 etc) become two separate babies with the same placenta. Absent of a family history, a genetic counselor is the one to consult.

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