Should I test or just have ovaries out?

doggylover

My onc is suggesting the BRAC test.  At first I declined since I'm essentially an only child with only half siblings and I have no children.  The info would be for me only.  I'm pretty sure my insurance would pay for it but why waste anyone's money if I don't have to.  Another of my reasons not to do it is that I'm 52 and my breast cancer was caught very early.  ER+ and PR+.  I just finished my last round of TC chemo and am starting radiation very soon.  Even if the test were positive, I would not have a mastectomy.  I had a hysterectomy in Jan and should have had my ovaries removed then, but told the Dr. if they appeared healthy to leave them.  It's sort of a cart before the horse scenario.  Had I know what I know now.  Anyway I'm scheduling an oopherectomy, but now I'm thinking I should have the BRAC test.  If it's negative then I won't have to go through the surgery.  Any advice out there?  Thanks, Lisa

rgiuff

I would have the test rather than just removing possibly healthy ovaries for no good reason.  I think the surgery would cost more than the test if it's money you're thinking about.  Besides, latest studies have shown it's better to keep ovaries until well into the 60s as removing them can potentially shorten our lives.  Even after menopause, they probably serve a beneficial purpose.  I plan on keeping mine.

Wondering why your doctor recommended the BRCA test though?  And why you are planning an oophorectomy?  I'm in a similar situation, age 49 though, diagnosed 2 years ago, early stage cancer as well, no chemo, did do radiation, now on tamoxifen, and nobody ever mentioned doing the BRCA testing.  I have thought about it, but don't feel any real need to do it, no family history to make me even think that I'd be positive.  

rgiuff

I would have the test rather than just removing possibly healthy ovaries for no good reason.  I think the surgery would cost more than the test if it's money you're thinking about.  Besides, latest studies have shown it's better to keep ovaries until well into the 60s as removing them can potentially shorten our lives.  Even after menopause, they probably serve a beneficial purpose.  I plan on keeping mine.

Wondering why your doctor recommended the BRCA test though?  And why you are planning an oophorectomy?  I'm in a similar situation, age 49 though, diagnosed 2 years ago, early stage cancer as well, no chemo, did do radiation, now on tamoxifen, and nobody ever mentioned doing the BRCA testing.  I have thought about it, but don't feel any real need to do it, no family history to make me even think that I'd be positive.  

louishenry

Hi.

It's interesting how Docs differ with their opinion. Mine did recommend the test for me, even though my DX was a minimal amount of DCIS. At that point, I had zero history of any  breast issues in my family. The reason was that I was under the age of 50, even with non-invasive disease. I thought about it for a bit, mainly because I have a daughter.

I went and saw a Geneticist and she said that the chances with very unlikely, so I decided to not test. A short time later, my sister was found to have LCIS. Really odd- just us, in a huge family of woman.

I did the test and it was negative. A year earlier, I had a total hysterectomy ( unrelated to my DCIS) for other estrogen related problems. Shortening my life?? I heard that and asked my ONC.He said that the jury is still out on that. In Europe they remove ovaries as a treatment for cancer- have been for a very long time. Their stats don't show a shortened life span yet.

We'll see.

doggylover

Thanks ladies, your responses are helpful.  They have helped me think through this more deeply.

I look at my situation as a cart before the horse kind of thing.  I had a hysterectomy because of huge fibroids in Jan. 2010. and chose to keep my cervix and ovaries since they were healthy and it seemed like the healthy thing to do.  I was 51 at the time with regular periods and it didn't seem to make sense to go into menopause over night.  In April is when I had the suspicious mammogram.  I am just now finishing 4 rounds of TC (monday was the last) and am preparing for radiation.  My oncotype score was 23 so I chose chemo therapy.   My sister (half sister) had an identical cancer 10 years ago and only had radiation, has her ovaries and is doing fine.  The reason for the BRCA is that my family is Jewish and I've had a couple of aunts on my dad's side who died of Breast Cancer.  No one, except for my sister on my mom's side has had any cancer of any sort.  That's my story.  I'm now looking into the BRCA because as I was scheduling the surgery I started thinking that maybe if it came back negative I wouldn't have to have any surgery.  That makes the most sense to me. 

pod1257

Personally, I agree with Rgiuf. There was just an article yesterday, in the USA today about possible benefit, to those tested positive for BRCA, but no indication of benefit for the majority of br. cancer survivor's who don't test positive. If you are negative, why take the risk of unecessary surgery and lose your ovaries, which have a positive affect on a women's heart health, bones, mental health, sexual health, among other things?

I have read that women that are hormone positive are rarely BRCA +, as BRCA+ is generally associated with a more aggresive cancer. In other words, most likely you are BRCA- but would be worth knowing before considering an ooph.

From my experience, I regret having my ovaries removed. It's a long story, but when I was dxed in 2006, at age 48, I had a low-grade IDC, oncotype of 10. BLM, no chemo and tamox. My onc was very aggresive in rec. I have my ovaries removed. - I think this might have been d/t family hx. Anyway, I didn't want that and had a 2nd opinion from a top cancer center. - they said I was doing more than enough with tamox. I also had the BRCA test and as I suspected, was negative. Despite all the sign's that I didn't need an ooph I was so scared regarding "recurrance", I did it anyway.

Result" Instant menopause!" Severe joint issues, severe hot flashes, sexual issues, sudden high blood pressure, some wt gain and the little spare tire I never used to have. but more important what was this doing to my bones, cardiovascular health?

Last yr with my onc's blessing I dced the femara. And although it is to say the least controversial, I researched carefully and started a low dose of bioidentical hormones and several supplements recommeded by my gyn. I continue to get checked and feel confident this is the right choice for me.

Good luck with whatever you decide.

Julie

While this route would not be considered by most, I wanted quality of life.

pod1257

I think I pressed submit before editing. Just wanted to add, I feel so much more like my old self with no hot flashes and joint's have improved so much. Even though I have always been active, I could hardly walk before with estradiol lab of 2 and femara.

Julie

Anonymous

For those wanting more information on BRCA testing here is some great information on the pros and cons for testing-

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA 

Not sure if this is true everywhere but I found out in Arizona that if you are tested and found to carry the gene they will test other members of your family for a hugely discounted price. (Most testing can run up to $2,000.00, which your insurance may cover, and then additional family members would be $400.00.) 

chinablue

Thank you, thank you, thank you for the very informative link!!!!!!!

lago

BRCA test is a lot less expensive than removing your ovaries. If finding that you are not BRCA+ will change your course of action then do it. If it won't change your mind about anything then I I understand your reluctance.

Originally my BS did not recommend the test. There is no history in my family either. Then I read there is a slight increased risk for Ashkenazi Jews (80% of Jews are Askenazi, even more in the US). When I mentioned this and the fact that if I were I would have both breasts removed (and most likely my ovaries too) then my BS highly recommended it. Granted I also have a sister, brother, nieces & nephew.

I ended up not testing positive but had to remove both breasts anyway but my ovaries are staying put.

AnacortesGirl

Julie,

The information who read about hormone postive cancers rarely being BRCA + is not completely accurate.  Statistically, it is much more common to have a triple negative cancer (ER-/PR-/Her2-) if you are BRCA 1+.  And the BRCA 2+ women are more likely to have a hormone recpetor postive cancer.  But that's just the odds - anything can happen.

Mutd

Doggylover, your doctor must be talking about "Multisite 3" test for the 3 Ashkenazi mutations, which is much cheaper that the "complete gene" test Katie was talking about. And faster to perform too.

A good point about not having to worry about the mutation passed to a child. But on the other hand your half siblings also have 1 in 4 chance of having the same mutation is G-d forbind you have one. If they are also concerned about their chances of  cancer, then it may be too high odds to shrug it off?

lisa210kuk

hi, my nan, her niece, my cousin all died from breast cancer so i was under going genetic testing to see if i had any off the faulty brca genes i decided that if i had the gene i would have a d.masectomy, whilst waiting for the genetics test i found a lump which was breast cancer, so i had a double masectomy, then i my results came back from the genetics test that i do have the faulty brca 1 gene.i am now having chemo followed by radio. my point is, i wish i had know about this genetics test 6 months earlier then i wouldnt be in this sitution now. i hope this helps a bit, good luck with your decission. p.s. i was 29 when i was dignoised, and once my chemo, radio etc have finished im seeing about having my overies removed too.

pejkug3

I'm set to see a medical geneticist on Tuesday at the Mayo Clinic.

I'm on the fence about whether I should be tested of not.  I feel like I may be opening a sort of "Pandora's Box" if I test positive.

Family history - my great aunt had BC 2x, her daughter died from BC (but she refused treatment at first and then it was too late), different great aunt has had ovarian cancer 2x, great grandma died from ovarian cancer.

But my mom and her 4 sister have no cancer history.  My gram had stomach cancer.

I'm ER+/PR+/HER2+++

My gut feeling is that I'll be BRCA negative.

But I don't know...

angelinac

I don't see why we wouldn't want to test ladies? Besides the expense factor if you don't have insurance or your insurance doesn't cover it. Fight them if they don't like I did. Its worth a try.