Pressured into BRAC testing and/or extreme surgery?

Melmes

Hey, all - some of you already know that I have been diagnosed with stage 1, grade 3 IDC and some local DCIS. The IDC tumor (8 mm) was removed, I have clear margins, my CAT and bone scans are clear and I'm having an MRI done on Friday "just to make sure".

My aunt and grandmother on my father's side both had breast cancer, no recurrence, long-term survivors (over thirty years, I think, for both; my aunt is still alive at almost 70 and my grandmother lived to 91). I am going through chemo and radiation over the next six months.

 I am being called by sa local cancer center working with my team about the BRAC testing. I don't think I want it. What will it really prove? I already know I have cancer, I already know there are several forms of cancer in my family, and I am deeply concerned about the cost (which is ridiculous and which my insurance will only pay some of) and about the implications of a "preexisting genetic condition" for my two daughters when they need to have health insurance as adults (I know, I know, we have hippa,but then again, we will also have several health reform bills between now and then).

 The only conceivable thing that having the testing can do is that if it comes back positive, they can give me a double mastectomy and remove my uterus and ovaries. I'm 37 years old. I know Tamoxifen is going to slide me closer to menopause, but that would toss me right into it, and I just don't think I want to put my body through that right now. I'm not saying "never", but I think I want to get through the chemo and radiation, get my body to a stable place, and THEN make such important decisions. I don't feel it's warranted to go SO extreme, we are already being VERY aggressive with the cancer as it is, 4 rounds of Taxere and Cytoxan and 35 rounds of rads. I don't believe that a double mastectomy and hysterectomy and what-have-you is necessarily the right choice, or at least not right now.

 Anyhow, my point is, I'm feeling like they are trying to pressure me into getting the gentic testing and going the extreme makeover route, and I'm really not comfortable with that because it feels like they are preying on my fears. I don't know if they are or not, but the thing is, they are making me feel uncomfortable with choices Iwas very comfortable with prior to this, and it's upsetting. If I DON'T get the testing and the surgeries, and the cancer comes back then it will be all my fault for not doing it. If I do, and the cancer never comes back, I'll wonder if I really needed to put myself and my family through all of that time, expense, pain, and suffering. So now I feel like I almost HAVE to, and I'm uncomfortable with that. (

Has anyone else gone through this?

Anonymous

I wondered the same thing too. My mom's side has a lot of different kinds of cancer. Do you go ahead and have the testing done and then worry if something never happens? What are the chances?

Del11

They shouldn't be pressuring you at all, one way or the other. Are you going through a genetic counselor? If not, you should find a certified genetic counselor, talk to them, then decide if you want to test.  You should only test if you're going to do something with the information, and if you know now you won't make different choices (which are very personal choices) then there isn't a huge reason to test, for you.  And you can always do it later.  fyi, if you are positive, the only formal medical recommendation will be to have your ovaries out by 40, or after childbearing is complete. There isn't a formal medical recommendation regarding breasts for surgery vs. surveillance vs. chemoprevention (meaning, not one over another. the recommendation will be to do one or more).

Your insurance should cover most of the cost of the test, you can probably find out how much ahead of time.

As far as discrimination, you would be protected by GINA if you were positive. It only applies to group health insurance however, so not life insurance or private health insurance policies. Although, with a cancer diagnosis you're taking a hit anyway on those.

You can find a genetic counselor here: http://www.nsgc.org/

slinky

I totally agree with Jeskachi.  Since I tested positive, my whole family is getting tested.  My mom has the same thought process as you - she doesn't know what she will do with the information if her test comes back positive.  One of my sisters also doesn't want her breasts cut off if she is positive.  I told them there is surveillance and medications that might be recommended if they come back positive.  I am surprised you are getting pressured into getting the test.  My family is getting alot of resistance from their doctors to get tested.  Until they show their doctors my results, then the doctors agree that testing should be done.

Melmes

To clarify - I don't think they are actually pressuring me to get the test; I just feel that way. I feel like, I was really comfortable (OK, as comfortable as I could be, given the circumstances) with where we were and the decisions we had made for my treatment plan, and I felt really confident that we were doing the best thing and my chances of never seeing it again were very strong, and my oncologist and doctor were on board, and now this seems like "well, we're not as sure as you thought we were  on the best course of action" and I feel very uncertain and overly stressed. Does that make sense?

Del11

Yes, that makes sense. Welcome to the world of BRCA   The decisions you have to make are basically choosing what route sucks the least for you.  It's all about quality of life, because no one has a crystal ball, and having the mutation doesn't mean you'll get cancer. *Knowing* you have a mutation, however, means you have to do something with the information. If you don't want to do something (hypothetically, not you specifically), don't have the test.That's why it's good to talk to a genetic counselor first, so you understand the options and decide what your next step will be if you take the test and it comes back positive.

Will having regular screenings and other surveillance make you crazier than having mastectomy?  Or vice versa?  Will worrying about ovarian cancer (and the lack of reliable screening for it) cause anxiety?  Or will going through menopause at your age be worse than the worry? All the options suck, you just have to decide what will suck the least for you, and then go forward trusting that you made the right choice.  Genetic screening is the wild west, and we're the pioneers.  It sucks, but for now these decisions are personal decisions, and based on quality of life measures, not medical certainty.

pejkug3

I'm 35.  My great aunt and second cousin (her daughter) have had breast cancer and another great aunt had breast cancer.  My great grandmother died of ovarian cancer long before I was born.

I went to the Mayo Clinic to discuss things with a genetic counselor.  I was pursuing a BMX and my surgeon suggested genetic counseling before I did something that drastic.

The genetic counselor said that or all cancers, only 5% have a genetic link.  And I had a 9-18% chance of fitting into that 5%.  She believed that there may have been a genetic component to cancer in my family, but it appeared to stop with my grandmother.  She's 73 and doing well - no BC.  And no BC in any of her 5 daughters.

She also said something about most genetic cancers being Triple Negative...but I can't really remember which BRCA that she said was almost always Triple Negative.  Too much info coming at me during that time.

I didn't test.  It would have really thrown everything in a tailspin if it was positive.  I haven't completely ruled out testing in the future.  For now though, I'm not testing.

Del11

80% of BRCA1 cancers are triple neg.

Abbey11

Melmes,

 I was not as young as you are when I was diagnosed, but I was still premenopausal.  I did the BRCA testing because, had I tested positive, it would have changed both my surgery and treatment plan.  I had bilateral BC, so it was highly recommended that I have a double MX.  But, a positive BRCA test would have led to an oopherectomy, also.  I would then be instantly post menopausal and could take an AI instead of tamoxifen.  That's why I did the test.  I turned out to be negative, so I've kept my ovaries and am on tamoxifen.

I would recommend that you meet with a genetic counselor before you make any decisions about testing or not.  She will spell out the reasons why you should (or shouldn't) test.  I found it helpful.  You can meet with her now, but could choose to postpone the testing until you're through chemo.  I don't think anyone should feel pressured to get any testing done.  You should decide what's helpful to your mental and physical health and do what's best for YOU.

 Good luck with your decision.  What I think I've learned now, a couple of years past my diagnosis, is that nothing is as urgent as you feel it is right now.  You can take the time to ask questions and consider your options.  A little thinking time will not affect your prognosis.  

Good luck to you. 

hydeskate

Cancer breast and ovarian is all over my mom's side of the family, when she got ovarian cancer 10 years after her older sister died from it she decided to get a BRAC test, which came back postive.  It was recommended the entire family get tested, only my sister did and she came back negative.  I put of the test, then I ingured my breast at 29, which led to the discovery of Stage IV Triple negative breast cancer, they tested me and I came back postive for BRAC 1.

Needless to say it scared the crap out of my aunts and cousins, majority have gotten tested some coming back postive and others coming back negative.  One of my cousins who is only three years older tested postive, and the doctors are keeping a sharp eye on her, she has MRI yearly.  Some have opted out becasue of implications of health insurance, pre-exisiting conditions.

I opted to get a DMX, the doctors just wanted to cut one off, I told they where taken both.  My Onc brought up oophorectomy but was over ruled by the expert on TNBC at the hospital, ther thoughts were due to my young age, and the fact that my mom and aunt didn't get ovarian until there 50's we could put it off for quality of life reasons. 

I would talk with a genetic counselor and get all the facts and then make a decision. 

Fearless_One

Considering that something like 85% women who carry BRAC are expected to develop BC, I would try to have the test.   My apologies as I don't know the exact percentage, I am sure your BS can tell you - and it's high.

bcincolorado

I have no family history and by breast surgeon gave me a video to watch to decide if I wanted the testing.  I personally decided against it.  I know the majority of people who are diagnoses have no family history and I don't think it will make a difference to my daughter, who was already grown.  I asked her about it and she said she didn't want to know anyway.

Bottom line....it is YOUR decision.  Don't let anyone "bully" you into something you don't want.

Fearless_One

I don't know why anyone would not want to know.   There are steps you can take if you do test positive.   I don't get all the apprehension.   What's the big deal?   It's a simple blood test.    Unless it's money - I realize it can be costly if one's insurance does not cover it.