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Topic: OMG!!!!!!!!!!!

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Feb 27, 2008 05:57PM

jaime101 wrote:

ok maybe this isn't that big of a deal - long story short - I am going for generic testing and I have had my mom doing research on ALL of my relatives with bc. I thought that they has all gotten bc when they were over 55 or 60. Well ALL of them got it between 39 and 46. All 6 of them! Good news is my mom is still clean at 55. I am oldest daughter at 34. My head just started spinning when I heard the news. Going to have discharge tested on Friday and until now I thought it was probably nothing. Crp (excuse typing on my iPhone)

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Feb 27, 2008 07:38PM otter wrote:

jaime101,

You are doing the right thing by getting this investigated (both the discharge and your medical history).  It must have been quite a shock to find out about all those early occurrances of BC in your family.  I only have 2, besides myself, and that was scary enough.

At least your mom is helping you with all this "studying".  It sounds like she will be a good person to be with you.

Let us know how your test comes out on Friday, and write whenever you feel like you need someone to "talk" to.

Hugs, 

otter 

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Feb 27, 2008 09:11PM Beesie wrote:

Jaime, while the news that you got is worrisome, the fact that your mother is 55 and hasn't had BC may be very good news for you.  Have any of your siblings had BC, or only cousins / aunts / grandmothers?  Who are the 6 family members?

This is a gene that we inherit from either our mother or our father.  So the way the genetics works, if the BRCA mutation is in your family, it's not necessarily in all branches of the family.   For example, let's say that a grandmother had the BRCA genetic mutation.  If she had 6 children, each child had a 50% chance of inheriting the gene - some will inherit the unhealthy BRCA gene from their mother but others will inherit the healthy gene from their father.  So you might end up with 3 children in the family who inherit the BRCA mutation, and 3 who don't.  Those who inherited the gene have a signficant risk to get BC (and a higher risk for ovarian cancer and, for men, prostate cancer) and their children have a 50% chance of also inheriting the gene.  But those who inherited the healthy gene have no increased risk of BC.  And because they don't have the gene, they can't pass it on to their children.  So this means that some branches of the family have the gene and may continue to pass it on, while other branches of the family have been completely spared. 

So, it could be that your mother's siblings have the gene, but your mother doesn't.  And if she doesn't, then you can't inherit it.  The genetic counsellor will be able to explain this to you much better than I did, but please, don't take the news about your family as being a sign that you are doomed and your test on Friday will turn out to be cancer - it doesn't mean that at all.

Good luck on Friday.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 28, 2008 08:50AM jaime101 wrote:

Otter, thank you for the hugs.  They have been much needed recently.  And yes, mom has been great!

Beese, you are my hero.  This is the type of knowledge that I have been craving!  The tree is like this

Great Great Grandmother Deceased -66 - BC

Great Grandmother - bc - 57

Grandmother - bc - 39

Grandma's sisters - both bc - 41 and 46

Mom - still ok -  :-))

Aunt - lumpectomy - dcis - fine now after treatment

Fathers side is clean

I am oldest in family at 34.

So maybe Mom missed the gene and in turn I missed the gene.... 

I will still have everything checked out this friday and at the genetisist on April 8th, but maybe at least I can get a little rest with the ray of hope you have just provided!!!

Thank you both!  I will definitly let you know how things go.  Otter, I would bet that Beese's comments gave you some comfort as well.  I am not sure how to read the diagnosis at the bottom of your message, but I will pray for a clean bill of health for you. 

Thanks again!

Jaime

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Feb 28, 2008 10:39AM - edited Feb 28, 2008 10:55AM by leaf

I know this is very hard for you. Know I am thinking of you and wishing you well.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 28, 2008 12:26PM Beesie wrote:

Jaime, that's quite the family history.  I can appreciate why you are concerned.  It certainly appears that the BRCA mutation might be present in your mother's side of the family, but if so, hopefully your mother inherited a healthy gene from her father rather than the BRCA gene from her mother.

With all this family history, has your aunt gone for genetic testing?  This could be a really important piece of the puzzle when assessing your results.  It's often preferred to test someone in the family who's already had BC, because if the BRCA gene is present in a family, there's a greater chance that it will be found in someone who's already been diagnosed with BC.  For example, let's say that you are tested and don't have the BRCA genetic mutation. That would be good news, but it wouldn't explain what's been happening in your family.  You wouldn't know if the history of BC was caused by the BRCA genetic mutation or if there may be something else going on.  However if your aunt was also tested and she was found to have the BRCA gene, that would explain the high presence of BC in your family, and that information, in combination with your results, would confirm that you are in the clear.   So if your aunt hasn't been tested and you have the chance to influence her about this, it would be a good idea for her to get tested too. 

Good luck tomorrow!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 29, 2008 01:07PM jaime101 wrote:

OK Ladies, I don't know anything yet.  They extracted the fluid and put it on a slide to have it analyzed.  BUT!  He didn't think it was something to worry about.  He says with all the activity I have in my boob, or lumpcakes, as I lovingly refer to them, it is probably just an inflammation.  They also had a counselor come in to speak with me.  She was awesome.  She basically said look, you are "that" girl.  Your going to have to be tested every six months.  Now, you need to decide how you are going to handle it.  They offered anxiety medicine.  She gave me her direct number, offered to talk about my choices, told me she REALLY wants me to do the genetic testing, but not to worry about it.  All of this information is just that; information.  Its what I do with it.  Just b/c I do or don't have the gene, doesn't mean I will get bc.  Even if I have a bilateral mas, it doesn't guarantee I wouldn't have problems in the future. 

So basically it came down to this.  Dr. X, gave me a hug and said get used to seeing me, every 6 months, we can do this together, because it is what needs to be done.  Don't panic, we are doing this for preventative measures and even if we tested every week, you will probably be fine statistically speaking, but he is not willing to statistically take that risk.  He would rather be safe and know that he and I could sleep at night knowing we are doing everything we can, to prevent and to attack, when and if needed. 

HOW AWESOME IS THAT!!!!!  I am so happy to know that there really are fantastic doctors out there who really have your best interests at heart.  AM I being gullable?  I don't know any more than I did yesterday, but they really put things in perspective for me and I feel 100% better! 

I guess I will be sticking around here - knowledge is power and you guys have all been so awesome - why leave and have to just introduce myself again in 6 months when I test again. hehehe

Oh and I will let you know what comes of my slide, but for this weekend, I WILL NOT BE WORRYING!!!!! I will be praying for a b9 report.....

Thanks and hugs to you all!!!! 

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Feb 29, 2008 01:36PM - edited Feb 29, 2008 01:39PM by Beesie

Jaime, it sounds like you had a good appointment today and that you have doctors who you like and can trust.  That's great!

I can identify with your situation.  My family history wasn't as strong as yours (and I ended up testing negative for the BRCA gene) but I've had problems with my breasts since I had my first fibroadenoma at the age of 16.  Since my teens I also had extremely fibrocystic breasts - any symptom of fibrocystic breast condition, I had it.  Over the years I've had 3 excisional biopsies, 3 stereotactic or ultrasound guided core biopsies, and more cyst aspirations that I can remember.  So I'm another one who regularly saw the breast surgeon.  In fact, although my family doctor usually would order my mammograms, I never went to him for the results - I'd always go directly to the breast surgeon.  And if I felt a new lump (which happened a lot during the years when I was getting cysts regularly), I'd just call to set up an appointment with the surgeon.  So I know the routine.

Some women panic every time they have a call-back after a mammogram.  I never let it bother me.  Maybe because I had call-backs after almost every mammogram, it just was part of the routine for me.  I worried a bit with biopsies, but truthfully, I didn't worry much.  There wasn't anything I could do - it would either be benign or it wouldn't be.  Worrying wouldn't change the results.  And once I got through the mammogram, the call-back and the biopsy, I put breast cancer completely out of my mind until the next round of tests or until I felt another lump; I didn't live my life waiting to get breast cancer (although I sure checked my breasts regularly).  I'd breathe a sigh of relief and go out and live my life. 

What gave me that peace of mind was knowing that I was being well taken care of.  I was high risk for BC and I always suspected that I would get it one day, but I felt that because I was being watched so carefully, when it happened, it would be caught early.  So I wasn't going to worry about it until it happened.  As it turned out, I did get BC, and it was caught early.   Maybe I was just lucky, but the way I look at it, it was my 'high risk' status, and all those false alarms that led to my early diagnosis.  And that in turn may have saved my life. 

So.... are you being gullable?  No, I think you are being realistic and thoughtful about your situation.  You're heard that you are "that" girl, but you aren't panicking.  Good for you! 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 29, 2008 01:46PM jaime101 wrote:

You couldn't have said it any better!  Thanks! 

One question - Did they excise every cyst?  Or just suspicious ones?

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Feb 29, 2008 02:36PM - edited Feb 29, 2008 02:37PM by Catherine

Hello, I also have a strong family history - both grandmothers, two aunts.  They told one grandmother she only had "weeks" to live.  Well, she lived 20 more YEARS and died at age 80.  The other grandmother lived 35 more years and died at age 96.  And that was before treatments were as advanced as now.

I was diagnosed with DCIS nearly 5 years ago and I'm doing fine.  So hang in there! 

Catherine

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Feb 29, 2008 02:44PM Beesie wrote:

Jaime, my surgeon would aspirate every cyst.  Since I had such lumpy bumpy breasts, it was good to get rid of any lumps that we could.  And it's so simple to aspirate cysts.  In fact, whenever I'd go to see my surgeon with a new lump, before sending me for a mammogram or ultrasound, the first thing he would do is pull out the needle and try to aspirate the lump.  If liquid came out and the lump dissappeared, we were all done and nothing else was required.  This saved me from having to go for a lot of unnecessary tests.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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