HIGH RISK DAUGHTERS CONONDRUM

farmerlucy - thanks for your support. my daughter also had prophylactic oophorectomy, as soon as she was MBC, and also bcs Onco said that it would be easier to get different tx. She ended up having a new biopsy recently bcs the monster was eating her up, and it showed that it changed from Her2- to Her2+. So different tx.

She also had Foundation One done, and really there is maybe one clinical trial that would be good for her. That's it. She is at best stable now, not much regression at all.

My other 2 daughters, are very close to her so it's really hard and they experiencing everything upclose. I go with them to the Radiologist, and sometimes i'd like to ask her something, i try not to ask in front of them bcs i don't wanna freak them out more.

Radiologist is very competent, but i never know what it is going thru their minds. She is the one that dx my older daughter at the time, and started the ball running immediately. So she knows the history, the family, i believe she has their best interest in mind, BUT i am still petrified what should i tell you!

And being that they found with the 2 other girls stuff, i am on edge. I try no to show them, we are all very good actresses.
I do wish you best of luck. You should know the first time around, her gyno was checking her 3 months postpartum, and when she showed him the olive size lump on her breast, he refused to give her a Mamo, TOO YOUNG!!!!! Right??? Ignoramus!!!!!!! We paid out of pocket and the right is history. When it metastesized to the bones, even her dear surgeon and onco, did not wanna accept it, and said maybe she just hurt herself, their minds were not going there.

I had her go to an orthopedic and again the rest is history. Do you guys understand, why i feel i have such a responsibility? I feel i have to be on my tippy toes all the time.

inks - I have to ask re: redoing it, i would lie if i wouldn't tell you that i am cowardly trying to avoid these testings. It's simple, if it's a fluke that each of the girls has some suspicious stuff at this young age, it's one thing, but if it's in the genes, then it gets even more scary!! I am the type that likes to deal with the lemons life throws at us, but it's still a very hard step. (you know ignorance is bliss). I know i gotta do what i gotta do. I will spk to Rad Doc next wk at the appointment, thank you so much.

Mods thanks for the advice.

This is a wonderful site, i got a lot of help here, and i try to go on the Mets thread.

vlnrph so my daughter that has Mets she had BRCA testing it was negative, then recently i asked an Oncologist in a major Cancer Center, and he was not sure how I should go about my other daughters. So...I am not sure where we are at with this question.

To update everyone, my other daughter and myself went to the Radiologist Doc today, no mamo, sono only - and thankfully went great, we'll return in 6 months, she will then have a Mamo/Mri. We are thrilled, it was very nerve wrecking.

We move forward! Thank you everyone for your support.

I pray every day, that I am making the right choices, because they depend on me a lot for these decisions. They are very independent young ladies, but bcs of family experience, and my time devoted to do homework i am more able to get the info of what, when and where the best way to, how shall i say, protect them from this monster.

So for now, it's Mamo every other 6 months.

Thank you very much

3-16-2011 yep that's what we do now, interchangeable. What can i tell you, i still fret all year. We were so anxious this time around. We are very lucky, i found a private Radiologist Doc, she is very capable and caring, she was there when my daughter was first diagnosed, i use her, so she knows all family history, and it's a very nice feminine environment, being that they are all so young we all appreciate this, and the staff is great. It does not take away the fear, but it's better than rushy or rude staff. I tried going to a Hospital run mamography and they were so detached and cold, it was quite unpleasant. I have to pay out of pocket here, so that's my luxury. For real. Best of luck on your scans.

vlnrph - i cannot understand how a super top Clinical Oncologist in a top Cancer Center in NYC should not be able to give me a definite answer in the sense that if my oldest daughter showed she is BRCA negative what's the steps for the rest of the family. I tell you the truth i am usually the type to go check what the noise at the door is, but I am not to keen about testing the rest of us. Awhile ago I watched a documentary on PBS about BRCA testing, and how some sisters in a family did not wanna be checked and I thought how weird, they could be doing something about it and they are not. And now I am doing the same thing. The other 2 sisters are 25/28 single, so to be honest I am not looking forward to find out some horrific news, we might do it, just wanna push it of some. I have the original geneticist that took care of my oldest daughter, i might give her call, soon.

I will ask the doc about Prevenia, thou i am skeptical of this things.