Wednesday, July 2, 2008

Scary cancer post!

Today I went to my initial cancer genetic screening appointment dealie, where they told me all about what crappy things I have to do if I have this gene, and then drew some blood. In 5 weeks I have a follow-up appointment to find out the results of my blood test. The next day I'm going to a Radiohead concert, so hopefully I'll be able to celebrate not having a highly increased chance of cancer. Or trying to forget about my highly increased chance of cancer for the whole concert.

For those who don't remember, the way this all went down is this: My aunt has breast cancer, and since her mom (my grandmother) had cancer as well (breast AND ovarian, the latter of which eventually killed her), she got tested for this genetic mutation that is common to ashkenazi jews. And it turned out she had it. My dad got tested, and it turns out he has it too. The mutation is a BRCA1 mutation. Since my dad has it, I have about a 50% chance of having it. So today I went to start getting tested. Also I am getting tested for 2 other mutations (one other BRCA1, and one BRCA2) cause even though my dad doesn't have those mutations, my mom is an ashkenazi jew, which means I might have inherited something unpleasant from her as well!

Basically this is what I found out in my appointment with a genetic counselor:

I have a 50% chance of having this mutation. This mutation interferes with one's body's ability to repair damaged cells, and stop cancer growths.

If I have it:
I have a 60-80% chance of getting breast cancer (compared to 13% for the average woman)
I have a 30-45% chance of getting ovarian cancer (compared to 1-2%)
I have a 10-15% chance of getting colon cancer (compared to 5-6%)
I have a 2-3% chance of getting pancreatic cancer (compared to 1%)
and my chances of uterine and cervical cancer are slightly increased.

But with melanoma I"d be ok. yay.

If I do have this mutation, the general course of action is preventative screenings. Which means that I would have to get a mammogram AND a breast MRI every year, starting immediately. For the rest of my life.

Also, if I do have it, a recommended course of action is to have your ovaries removed after you are done having kids. Apparently if you do that before menopause, that also reduces your chance of getting breast cancer by like 50%.

So in 5 weeks I find out if I have to get a mammogram and MRI every year for the rest of my life, and also if I have to get my ovaries removed in like 15 years.

I managed to keep my composure for the entire appointment, only to pick a stupid fight with B the second I got in the car, and crying the whole way home. We made up later though. Meanwhile, I've been obsessing about how inconvenient it's going to be to take out all my piercings for MRIs that I have a 50% chance of needing every year until I die. Also about how I have a 50% chance of probably getting cancer.

This is what 3000 years of jewish inbreeding will give you :(

12 comments:

  1. Oh honey. I feel your pain. It's good you're getting tested, though. I think you're REALLY brave to do that. And smart. Very smart.

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  2. I hear you. The ethical weight that comes with a positive result for such a test is some heavy shit. I've got a lovely genetic disease up my s'fard side (thanks, inbreeding ancestors!). It's not cancer, but I understand the icky feelings. I remember asking my mom how dare she bring a child into the world, knowing it could have the same thing she does. She didn't know she was sick when she had me. Whoops. In the meantime, I know. And that totally makes me feel like no one would ever want to marry me, sometimes. (Thanks for the bday wishes, btw. Now that I'm 32, I think I'm really, really an old maid in ortholand. lol)

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  3. I don't think i can't have children if I have a genetic mutation...plenty of people have stuff wrong with them. And as we know more and more about what makes things go wrong, does that mean that no one can have kids? Cause I'm sure most people have at least one thing wrong with them, otherwise they would never die.

    Also most people don't die from breast cancer these days, as long as it's caught early (even my aunt who was like stage 4 when they found out is now doing ok). Which is why they have the early screening thing. And this cancer tends to be found in older women (my aunt/grandmother who had breast cancer were in their late 50's when they found out, and my grandmother lived till 83), so it's not like you can't live a normal life with this thing.

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  4. Eden--Do you have an e-mail address perchance?

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  5. Ugh...I just read something this week about a couple who knew that one of them had a cancer gene doing IVF & selecting an embryo that didn't have it to be implanted. You are doing the right thing by finding out now.

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  6. I am Brac2 positive and had my ovaries out after I had kids. I was 37. It was a truly liberating feeling. My mother and grandmother had ovarian cancer.

    2 sisters of mine are negative for the gene so there you go!

    I go every six months for screenings -

    breast MrIs and Mammograms - I also get the blood test CA125 which is a simple test for ovarian cancer that is only given to high risk women .

    Truth is you are right about breast and ovarian cancer - they are highly curable in the early stages so screening is critical.

    You can find out more about ovarian cancer and some new studies that have been effective in early detection by going to marsharivkin.org

    Sorry you have to go through this but I believe it is better to know your options.

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  7. dragon-

    do your kids have the gene?

    What was having your ovaries out like? How long did it take to recover? Did you go through menopause when you were 37?

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  8. I found out I have the BRCA1 gene after I got Breast Cancer, 5-6 high grade invasive tumors. I wish I had known about the mutation before BC hit. The knowledge, however, had empowered me and I was able to take steps to reduce my chance of more cancer. My children were tested and TG were negative. My sister preferes to dig her head in the sand and chose not to take the test.

    I know that right now it is very scary for you. Remember you are an empowered woman who takes charge over her life. It is a BIG step and you had the courage to take it.

    Please let me know the results.

    Hanna

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  9. hanna- my dad said the exact same thing (prefers to dig her head in the sand) about his cousin, whose mom (my grandmother's sister) died of breast cancer at around the same age she is now. She also is not getting tested, even though her mom and 1 of her mom's sisters died of breast cancer in their 50s, and her mom's other sister (my grandmother) had breast cancer and later died of ovarian cancer.

    My aunt now has breast cancer and was at stage 4 before she went to a doctor, because even though she had noticed a lump I guess she was scared and just hoped it would go away.

    It is very scary though...even though I don't know if I have the mutation yet, I'm obsessing about what having cancer is like...I'm thinking about talking to my bf's dad about what chemo is like next week, cause he just went through it (for stage 1 lung cancer) and seems pretty ok.

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  10. Oh dude, that's a heavy weight. I'll be hoping and praying for a good outcome for you.

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  11. I will answer your questions from above:

    1. I have boys and I haven't tested them - I will let them do that when they are adults if they want. Men with the gene can pass it on of course and may have elevated risks for other cancers like colon or prostate

    2. the surgery for the hysterectomy was not bad - it was laprocopic (sp??) - I spent 3 days in the hospital - have no scars (not that I'd wear a bikini anyway!) b/c the incision was through my belly button - Spent a week recuperating at home and felt pretty normal after that - 6 weeks back to all regular activity - Was a lot easier than having a baby!!

    3. I am almost 42 right now and except for hot flashes every once in a while,mostly in the middle of the night, I don't have other menopause symptoms except, of course, no period which is a plus!

    I don't take any medication now except a multi vitamin, vitamin D (2000 units) and calcium chews.

    I need to check my bones but I do exercise regularly - running, walking and swimming - this is important to maintain bone density

    Vitamin D is pretty important for us. Studies are showing that often those with cancer have low vitamin d levels in their blood.

    As far as the menopause symptoms go, I know I am lucky but remember there are lots of meds available to help the symptoms.

    As far as sex goes - no problems there - as I said, quite liberating not to have to use birth control and not to get your period and of course, not having to worry about ovarian cancer -

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