What are the chances?

kdholt · February 2009

About 4 years ago I had a benign melanoma removed and April 08 a lumpectomy. My dad had prostrate cancer at the age of 55. Other than the 2 of us there is absolutely no family history on either my mom or dads side of family of any cancers. What I am wondering is if I should talk to a dr. about being tested for the BRCA gene. How likely would it be that I am positive? Is this something I need to consider? By the way I was 45 when dx with breast cancer.Did anyone out there have similar circumstances and test positive?

WellWater · February 2009

I'm sure there are others that are way more familiar with this than I but I'll give you MHO. My father died with stomach cancer at the age of 55, no other cancer history in the family. I had 2 benign lumps removed one in '72 and one in '89 so when I rec'd the call to come back for another look at a lump they found during mammogram in '07 I wasn't terribly worried. It turned out to be cancer however and my diagnosis is very similiar to yours. I had a lumpectomy, chemo and radiation - I am currently on hormonal therapy tho enjoying a little break a the time.

Personally I see no need for a BRCA test for myself. What would change for you if you did get the test and it was positive? I am curious as to why you think it might be beneficial.

Trina

kdholt · February 2009

I really don't know. I guess I worry about developing more cancer and want to be proactive. I wondered if it might be good for my daughter and sister to know if there was a genetic component to my cancer. I think the only thing I might do is insist on having my ovaries removed so that I wouldn't have to worry about ovarian cancer. Probably the biggest thing going on right now is mental-I'm almost a year out and am facing mammo and paps, etc. and just find myself worrying about it all-hoping all will be fine. I had rads and am on tamox. Just hoping I did enough.

Debbie

Emily2008 · February 2009

Well, I too had a stage 0 melanoma removed, then was dx at age 35 with IDC and DCIS in the left breast. Dad died of stomach cancer at 42, but all other relatives have lived long lives. Grandma had colon cancer in her 70's but beat it, so that doesn't really play into the picture too much.

I had the gene test done and found out I'm BRCA pos. Imagine my surprise, and my doc's surprise, too! I am so glad I had it done. In my case, it changed everything! I had both breasts removed and will have my ovaries out at the end of the year once my recon is finished.

kdholt · February 2009

Emily what made you have the test in the first place? No one has ever suggested to me to even have it. I just read too much for my own good and am wondering on my own if I should have it.Also who really should be tested for BRCA -everyone with breast cancer? Who decides?

Beesie · February 2009

Debbie,

If you are concerned, my suggestion is that you talk to your PCP and ask for a referral to a genetic counsellor. In my case, I'd been diagnosed with breast cancer and it was my surgeon who suggested that I get tested. His office set up the referral for me.

The genetic counsellor will go over your family history and give you a rough idea of the odds that you might test positive. He or she will also recommend whether or not the odds are high enough to warrant the BRCA test and if you have the test, what the results would mean for you and for the rest of your family (whether they are positive or whether they are negative). Then you can decide if you want to have the test or not.

I had a lot more family history of cancer than you - on both sides of my family. There were a few cases of breast cancer on one side (my mother, my aunt, myself) and a few cases of prostate cancer on the other side (my dad & my grandfather and my brother is pre-cancerous). Plus there were a few other risk factors thrown in (Ashkenazi Jewish, melanomas on both sides of the family, thyroid cancer, and various other things). Interestingly, the genetic counsellor told me that she didn't think I would test positive but there was certainly enough risk on both sides of my family to warrant the test. I decided to go ahead with it and in the end, I tested negative. I'm relieved about that, so seeing the counsellor and getting tested was the right decision for me.

Mutd · February 2009

kdholt, the shortest answer is "talk to a genetic counselor". The long answer, the odds of having a BRCA mutation depend not only on the number / type / age of people with cancer in the family, but also on the number of women who didn't have cancer, especially in the advanced age. If your father had like six sisters and none with breast or ovarian cancer, then it becomes very unlikely that there was a mutation in the family (because some of the sisters would be almost guaranteed to inherit it). But if he only had brothers, then...

And then, the number (odds of positive test results) isn't the whole story. There is also your anxiety level, your desire to know, and your determination to act on the basis of the test result.

beth1225 · February 2009

kdholt, yes get to a genetics counselor and let her help you with a fmaily tree. Just because there are no women on a side of the family has no bearing on whether or not a genetic mutation exists. There is a 50% chance of it being passed down and has nothing to do with the sex chromosome. There are a lot of factors and the GC will discuss them with you.

Also, men DO get BC like my dad did. Sometimes, men do not get it taken care of until it has invaded other sites and progressed and the primary is not distinguishable as BC.

Most of all, go to FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org) to find out more answers and articles. It is the only non-profit that is devoted to genetic mutation and family history and the ensuing risk.

Emily2008 · February 2009

In my case, none of my docs seemed to think it was necessary for me to get tested. I have grandmothers and aunts on both sides who lived for so long without cancer, so I guess there were no red flags. BUT, something inside me just kept telling me to have the test done. I'm a research junkie, and learned so much that I felt I wanted to leave no stone unturned. So I went to a genetic counselor at the cancer department of a university hospital in my area. As we went over the family tree, she indicated that it would be unlikely that I would be a carrier. It was a very in-depth and informative session, and I left thinking that I didn't need the test. She then followed up our session with a letter that had the probability calculated of me being a carrier. It was like between a 1.7 and 6.1% chance that I would be a carrier. So, again, unlikely. Still couldn't shake the feeling that I've done all this research, why not take it one step further and have the test done.

Well, needless to say, she was surprised, as were all my docs. Like I said, I'm so glad I found out, and mainly I'm glad I listened to my gut (really prayed, too), and had the test done anyway.

Joanmc · February 2009

Like you, I had a gut feeling..... My mom was one of 9 children and at 49 back in 1983, mom was diagnosed with breast cancer & passed away at 52 back in 86' due to re-mis-diagnosis. Her sister developed breast cancer at age 60 just 10 years ago & passed away recently from reoccurrence. The genetic couselor did not feel I had a strong case of having BRCA but went ahead & tested me. Mom was 1 of 9. They are the only 2 with breast cancer & she had one brother die of lung cancer but he was a heavy smoker. I have 100's of cousins all without breast cancer or any cancer for that matter. I tested positive & she said she could have fallen off the chair. Since then, my sister tested positive & she is 9 years older than me (55) and has never had cancer. My cousins (3) all carry the BRCA2 also. So far, no breast or ovarian cancer. having the gene does not mean a person will develop cancer. That is the good news. Glad you were tested! Welcome to BRCA sisterhood!

Joan

Emily2008 · February 2009

You're right, it doesn't mean you WILL develop cancer, but the risk is surely high! I plan to have my ovaries out at the end of the year when my reconstruction is done. I can't take the chance that I'll have another cancer, not when there's something I can do about it, KWIM?

I know there are women who are BRCA pos who choose surveillance rather than surgery. But that's just not for me.

anianiau · February 2009

The odds are also different for BRCA1 and BRCA2...

karen9516 · February 2009

I saw a genetic counselor and she thought I probably didn't have the gene but my fathers family was small but had a lot of cancer. I already had the BPM scheduled and I would do it no matter what the test showed with my history of many benign tumors and ALH . I wanted to know so I could tell my family and niece's and sister if the gene was in our family. BRCA1 and 2 only make up 5% of breast cancers but if you have it your chances are >90% of getting breast cancer and a slightly lower chance of getting ovarian. She said that some women who don't choose an oopherectomy can take the birth control pill and that decreases the chance of pre-menopausal ovarian cancer. Having the gene increases the chance of having all kinds of other cancers too. I didn't have the gene and that was a relief. You probably won't either but that will be one thing you can celebrate and if not you will know.

Anonymous · February 2009

Dear kdholt,

I read the previous posts, as I will try not to be repetitive.

One important factor was not discussed, and lightly touched upon. I need to bring it to y'all's attention.

BRCA testing is expensive. Unless you fight for it, and fight for it, you are probably not going to get it from your health care provider. I say, if you want to know, fight for it anyway.

There is an overwhelming amount of data that the doctors give you about what they can do, tests, indicators, markers, etc. It is daunting (to say the least) to find out that your insurance plan won't cover something that you need/want.

Ask your doctor to be up front about that with you. Have that factor as part of your relationship as adults who respect each other.

I remember very distinctly when my surgeon went over the options. She wrote notes, I wrote notes, she gave me a copy of her notes. I said that I wanted the BRCA testing, and I was sent to the main hospital for blood tests. The thing is, it wasn't for BRCA testing. We went forward with the plan, and at one point I asked her nurse if my chart had any information about the results of those blood tests. Sure, it did, but the tests weren't for the BRCA gene.

The advances in medicine to help us live better, if not longer, lives are a welcome thing to hear.

I have to be real with you from my heart and my knowledge, there are many procedures, drugs, and therapies that your health carrier will try to deny to save costs. Speak up. Speak up and don't stop till you know you fought your best.

sessna1

What are the chances?

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