Where does this leave my daughter?

jlmcd1509

Hi everyone,
I was diagnosed with widespread DCIS in May 2006 at the age of 49. I had a mastectomy with LD Flap reconstruction and I am currently taking Tamoxifen as the tumour was ER and PR receptor pos.

My father's only two sisters died from BC at the ages of 53 and 55 so I was referred to the genetics clinic. They have looked into my aunts' medical notes and have decided that I am high risk for developing BC in my other breast and have put my name forward for a clinical trial testing for all faulty genes thought to cause BC.

I'm not worried about myself but I have a 24 year old daughter and I don't know where this leaves her. I haven't said anything to her yet as I don't want to worry her until we get the results back. Does anyone know how this will affect her? My appointment at the hospital won't be until Feb 2007 and I want to have as much information as possible before seeing the consultant. I would appreciate any help or guidance you could give me.
Thanks so much.

Sandra1957

McJack-Can't answer any questions. Answers would be great, a cure even better. I have a 21 year old daughter. I was dx'd earlier this year, my mom, my mom's sister, my dad's sister, and my husband's sister have all had BC. That means my daughter has risk coming at her from all angles. I pray always that she never has to go through what I have (bilat/recon). I did take the BRCA test and it came back negative, so it must be some other "faulty" gene not yet discovered. I just remind my daughter to do her checks, remind her gyn of her family history when she goes in for exams, and live, live, live.

The best to you always,

lini

Fitztwins

I am the daughter of a BC survivor. I also have a sister. I got BC, my sister hasn't. I figure it was a crap shoot. I was dillegent about Self breast exams and mammos. If I could have I would have been tested 15 years ago when my mum got it. I might have gotten my breast removed to avoid this. One of those if "I knew then what I know now." I would be honest and straight forward with your daughter. She needs to take her risk seriously. My mom was dx at 49, I was at 39. It stinks.

Janis

Kasey

I am a two-time breast cancer survivor. I was dx'ed at 39 and 45. I have two daughters, ages 17 and 23. I haven't had genetic testing but my doctors are encouraging it. My younger daughter said she would want to know so she could get tested but not my older daughter. I know that could change. Anyhow, if I do get tested I probably wouldn't tell either one at this point unless it was negative. I figure the teenager doesn't need that to worry about right now and my 23 year old doesn't want to know at this point. I also worry that the insurance would hold this against me even though they're not suppose to.

Kasey

Chiahead

I was diagnosed at 50. I have 3 aunts on my father's side that have had BC. One had BC at a young age and died. The other 2 are in their 70's and have just recently been diagnosed. I have 3 daughters 27, 29 and 32. I have discussed genetic testing with them. If I were positive what would be different. I have already had treatment and am being followed closely by a team of Drs. I might opt for a hysterectomy if positive.
If my daughters were to have testing done they have all told me that they would not have prophalactic mastectomies done. They need to be very vigilant regardless of genetic testing. So the testing and knowing would not make much difference except for the mental anguish it would cause. Just waiting for "it" to happen.
I have opted not to have testing done. For me or my daughters.

tam1953

I'm 53 and newly diagnosed. Will have bil mast in a couple of weeks. I don't know my biological father. My maternal grandmother died of bc -- age 70. My mom had proph mast at 48 and they discovered in situ. My maternal aunt just found a lump and will have it biopsied next week. My 18 yr old daughter is taking my diagnosis hard. She's home from college for Xmas and is really distancing herself from me. I understand because this is what I did when my mother was diagnosed, too. I will have the genetics testing done before my oopherectomy and will decide then what to tell my daughter. Even at 53 and with all my experience and knowledge, I still have trouble looking at my mother this Xmas. I love her dearly and know she hurts for me. I am a nurse and took care of both my mother and my grandmother. Images of their mast scars haunt me. Their courage sustains me. I don't know what to do about my daughter when I have my surgery. She's always been a bit scweamish when it ocmes to medical things. I'll have to come home 2 days post op and worry it will be a harsh memory for her to carry with her back to college. I'm thinking of suggesting she stay with a friend for a few days. I tend to be very emotional and expect I will have a difficult time post op with the pain and the emotions of it. I don't want her to see me like this. I pray for a cure so she doesn't have to face this. Tam

Beesie

McJack,
Since we have an equal chance of inheriting each of our genes from either our mother or our father, if one or both of your father's sisters had a gene mutation that increases the risk of getting BC, then there's a 50% chance that your father had that gene too and a 50% chance that he passed it to you. However, coincidences happen every day, and it's probably more likely that your DCIS is unrelated to your aunts' situation. If you haven't inherited a breast cancer gene, then your daughter can't have it either, unless she inherited it from her father's side of the family. On the other hand, if you have inherited a gene mutation from your father and your BC is related to the BC that your aunts had, then your daughter has a 50% chance that she inherited the same gene from you. That still means that there's a 50% chance that she doesn't have the gene.

It's good that you will be participating in the clinical trial and will be tested for all possible BC genes. Once you know if your BC is genetic, then your daughter will be able to make a decision on whether she wants to be tested. But you may find out that your BC isn't genetic, which would certainly ease your mind about your daughter's situation.

floss

McJack. I was diaignosed at 52 whith 2 young adult daughters Neither of them coped well with my surgery and reconstruction. One was already having some issues and the other moved into her own apartment. i did what i needed to do. That i would always love them .help them but I needed to concentrate on my treatments etc.Years later I talked to my girls about it and they said they were so scared and just couldnt handle my phsyical pain and tears during treatment. Was I diassapointed yes a little but we have strong loving relationships, stronger than ever before and I am immensely proud of my girls. They were just in awe of their father and how he stepped up.
I asked for testing but I was the first member in my immediate family to get BC so was refused. I think it would put too much pressure on my children although they religously get checked yearly . Good luck Floss

sharon56

I am new and just joined I have stage III BC and stage II colon . Just finished the second of 2 surgery's on Nov 27th and start chemo Jan 8th .
I have 2 teenage daughters , in my family there were 5 girls my next younger sister died from BC 12 years ago .
My girls are full of questions and are visiting our local cancer clinic with me.
My onc has me on the list for genetic testing so I am expecting to be on a clinical trial . Just have to see how long it will take .
I am still here got lotsa livin left, so do my sisters , nieces and daughters . Any research that's done on me is a bonus for them.
I am here for them test me poke me do whatever you have to to help my daughters and sisters and ladies like you and me find a cure

blulrich

Just my 2 cents -- my mother's onc has vigorously been opposed to me genetically tested even though my mother is in the process of the testing right now. He says the laws right now are too ambiguous to not have real side affects. Insurance companies could use the fact that I get tested to deny me insurance or say that if I ever get BC that it is a previous condition.

I would love to know if I have the gene, but even if I do, that doesn't guarantee I will develop BC. I have a good GYN and PCP that are closely monitoring me and I know enough to do self exams.

Ultimately, it's up to you and your family. Take your time with your decision -- once it's made . . .

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