Genetic test results... not what I wanted to hear.

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Thu, September 10, 2009

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My youngest daughter turned 30 this year. She's been through some rough times. Her 4 year marriage turned into a nightmare. It was really hard to get out, but she finally did it. The divorce was final at the end of July. There are no children involved to keep her tied to her ex and his family. Stress and overwork have taken their toll, but things are starting to look up. She has a wonderful, supportive new man in her life, she loves her job, she's planning on finishing her RN courses and go see the world as a traveling nurse.

When your Mom has had breast cancer and all three of your Aunts died from breast and ovarian cancer... you need to know. Test results came back this week... positive for BRCA1. Yes, I know it's better to be forewarned so you're more aware and take preventative measures...blah blah blah. It still makes a Mom sad that my baby will worry about every symptom, every bump. Sadder still... she may decide not to have children.

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PJ Hamel

9/10/09 3:46pm

Melanie, I'm so sorry... PLEASE get the book "Pretty is What Changes," by Jessica Queller, and have her read it ASAP:

http://jessicaqueller.com/description.php

I think it will really resonate with her, and may help her make some very tough decisions. Yes, better to know; but still awfully hard to know. Our thoughts are with her, and you. PJH

Melanie

9/12/09 11:43pm

Thanks PJ. I know my oldest daughter read the book after my test results came back positive last year. Thank God she tested negative. She has a 3 year old son and is pregnant with her second baby boy. She was determined to have surgery immediately if she'd been positive. She's the kid who has always over-reacted... can you imagine the sleepless nights she gave me as a teenager!

I don't know if my youngest has read the book yet, but I'll make sure she gets a copy. I watched the PBS special about Jessica Queller... as I was recouping from my mastectomy. Not exactly light comedy. I've sent my daughter the Facingourrisk.org (FORCE) website as well as the BRCA Umbrella website http://brcaumbrella.ning.com. I hope she'll connect with the young women facing the same thing. My first cousin's two daughters were tested several months ago... one is positive and the other negative. My uncle is waiting for his test to come back to see if his kids and grand-kids will need testing too. There were five siblings in my Dad's family. We know he and his youngest sister were BRCA1 carriers for sure. I'm glad he never knew...

Phyllis Johnson

9/12/09 6:56am

I'm sure you both are devastated about this news. In addition to the book PJ mentioned, another good resource for you and your daughter might be a group called Facing Our Risk of Cancer Empowered (FORCE). This group is specifically for women who have genes for breast and/or ovarian cancer. A member of another support group I belong to who has both BRCA 1 and BRCA 2 has found the information at their website helpful and was enthusiastic about a conference they ran. The URL is http://www.facingourrisk.org/.

Melanie

9/13/09 2:19pm

Can't imagine having both BRCA1 & 2. That's a double whammie. I found the FORCE website a while ago and get notices of local chapter meetings. Unfortunatley they are in Seattle at rush hour and I'm in the suburbs... the traffic is so ugly I've not made it to a meeting yet. I also checked out the BRCA Umbrella website and that is helpful too.

Elva

10/ 1/09 11:53pm

I googled bilateral mastecomy and clipped on your entry, I thought to myself as I was reading this I want to have that same attitude the day after my surgery.

Hi my name is elva and I am 13 days from a bilateral mastecomy. Pretty scary but reading your entries I thought to myself I just have to write and say "WOW"

I hope to be just as strong you as. I hope you are doing well. God Bless

Melanie

10/ 2/09 3:17am

Oh dear... I really feel for you. I hope you're getting rest and letting people take care of you. It's so hard to be the one who's sick. Women are usually the caregivers so we feel a bit out of our element when we're the one that needs care. Please let the people in your life help... it's how they cope with your illness.

Well, it's one year after my surgery and I'm glad to be looking back from this vantage point. I imagine you're about to get your drains out and check back with your doctor to decide the next step. Hope your pain meds are working well. I felt like I was wearing a steel wool shirt for about 8 weeks. This too shall pass, but it wasn't a heck of a lot of fun at the time! Waiting was the hardest thing to do... and wading through the reams of info to make a treatment decision was overwhelming. Pray about it and trust your gut instinct. No one knows as much about you as you do.

I'm not really a particularly brave person, I just put one foot in front of the other and kept plugging along. Writing about the whole experience helped tremendously because the friends and relatives I sent updates were so supportive. Friends I hadn't heard from in years came out of the woodwork. That was such a surprise and marvel to me. It makes me grateful for every day and every person I meet.

Keep in touch and know that there are a lot of people who care about you. It helps to tell your story here because we've all been there and we know exactly what you mean. Best wishes for a long and heathy life... Melanie

elva

10/ 2/09 11:55pm

Hello Melanie ~ Thank you for responding. it is so true what you said on letting people help you because it is their way of helping you. It actually feels kinda wierd.

Making those decisions is so frightening, not know if you made the right one. Second guessing yourself - is so exhausting!

thank you for your kind words and wishes! Oct 14th is my big day :)

Genetic test results... not what I wanted to hear.

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