Confused

Options
Papillon1
Papillon1 Member Posts: 308
edited June 2014 in High Risk for Breast Cancer

Before I start this post I want to make it clear I do not want to upset anyone. I am not high risk. A least to according to the genetic oncologist counsellors I s this morning. Bt I am still very worried. S I hope it is ok for me to be here.

My history: mum had bc at 52, it has come back 12 years later,all over, including her brain. Maternal grandma also had bc in her 50s. It came back in her lungs 10 years on.


Paternal aunt had bc, metastases a year later (died) and her grandma also died of bc.

My paternal grandma also had ovarian cancer (which the genetic oncologists kind of disregarded as we have no "proof"!?)



So I had my second appointment with the genetic team today and they say I am low risk for hereditary cancer. It may be that my increased risk is in the 20% of breastcancer cases which are due to a family tendancy towards to disease which they can not yet test for.

I was sent away with advice to start mammograms early, yearly, and with a umber for a psychologist to discuss my "fear of cancer"..



I am afraid it is true. But I am sure it is valid..

My main concern is that my mother is HER2+. So it is aggressive. She had a mamogram when she was 51 and all was clear. 18 months ater she had a tumour of a few cm which had (unbeknown to us at the time) already spread its seed. After an op and chemo and radiotherapy she was declared clear. But the seeds were laying in wait as 12 years later it came back, already in her brain. Prognosis isn't good.

So I worry that if i have the same tendancies as my mother, that even with yearly mammograms an aggressive her2+ tumour could grow and sew its seed before the oncologists find it and remove it. My fate is then pretty much sealed give or take some very tough treatment and much heartache fr myself and most of all my family. I have three children and a supportive husband and want to do everything I can to be here for as long as I can. It is the metastatic cancer that scares me.



So I want to continue to discuss prophylactic surgery with a doctor....is this crazy?!





Kind of feel a bit defeated by the meeting today, though I do understand they can't recommend everyone who has any risk of bc to get surgery.



Am I crazy!?

· Share on FacebookShare on Twitter

Comments

  • hrf
    hrf Member Posts: 3,225
    edited August 2013

    No, you are not crazy. But if your mother has bc, that doesn't mean you will get it and even if you get it, it doesn't mean it will be the same. Treatment approaches are very different now than what they were 12 years ago. Unfortunately there is still no cure. Sounds like more bc on your father's side. However many test negative for BRCA even with family history. Certainly makes sense for you to continue to investigate but I don't think you need to be panicked.

    · Share on FacebookShare on Twitter
  • Papillon1
    Papillon1 Member Posts: 308
    edited August 2013

    I just can't really grasp that it isn't hereditary in some way. Even if it isn't BRAC.



    Guess its the opposite to playing lotto - we play despite the fact the odds of winning are rediculously low. I know my odds of getting bc may not be so high..but if it happened to mum and her mum.....

    And dads grandma, and dads sister. And dads mum had ovarian...oooh and whats that about!? - the fact docs didnt take that into account because they have no proof!? Proof?.....gosh..fmily cancer trees must be a bit pointless if we need proof at every step.



    Am thinking I would be happier knowing I did everything I could.

    I could have op and never get cancer and wonder if maybe it helped. Or I could get cancer, no op, and always wish I had..



    Maybe I do need that psychologist!!! just can't get past the feeling that it is better to act now than later when it may be too late.

    Or maybe I just need to get on with life and not worry. I just wondered what others who are from families with a tendancy towards bc but no genetic testing do.

    Sorry to babble. I know I should be grateful they consider me low risk. Even if I can't quite believe it yet.
    Kind of felt like a number in that office today. Like the statistics say no. But statistics are just that...they aren't sure fire..
    · Share on FacebookShare on Twitter
  • mkkjd60
    mkkjd60 Member Posts: 583
    edited August 2013

    Dear Papillon,  Boy can I relate to your post!  My mom got bc at 66 and died in May of this year at the age of 73.  Unlike your mom she was er+ and also took HRT for 12 years.  The only other bc in our family was moms aunt who died of bc at 75.  Still, I am panicked.  I think it comes from watching the decline of our mom's with stage iv disease.  To be honest, I was not panicked when she was stage 2.  I guess I believed then that everyone survived bc.  So now I  know I am very wrong and her death was one I will never forget, truly undeserved by a truly wonderful woman.  I am a patient of my mom's breast surgeon, even though I have never had bc or alh or adh.  She has been able to get my insurance to cover mri every year along with mammo.  It sort of calms me down, but not so much now.  I think of a pbmx all the time.  Sort of get it before it gets me.  I've always been a control freak that way.  There is a dr. in washington dc.  Her name is Christine Teal, M.D.  Her mom is stage 3 bc.  Dr. Teal is the head of breast surgery at George Washington Univ.  Anyway, when her mom's bc reoccurred, Dr. Teal herself went ahead with a pbmx even though she had no history herself and only her mom and a great aunt had bc.  Makes you wonder.  Dr. Teal was on tv a year or so ago explaining her controversial decision.  Google her and let me know your thoughts.  Much luck to you.

    · Share on FacebookShare on Twitter
  • Papillon1
    Papillon1 Member Posts: 308
    edited August 2013

    Oh I will google! Thanks! My mum is also ER+. (HER2+ and ER+, but no hrt)



    It's so tough isn't t. Thanks for your reply!

    · Share on FacebookShare on Twitter
  • Papillon1
    Papillon1 Member Posts: 308
    edited August 2013

    Mkkjd - she makes so much sense! http://abcnews.go.com/Health/breast-cancer-surgeon-makes-radical-decision-knife/t/story?id=13731902&page=2

    · Share on FacebookShare on Twitter

Categories