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roadrunnerdm [userpic]
Words to a family member
by roadrunnerdm (roadrunnerdm)
at June 9th, 2006 (01:20 pm)

Thought I'd pop in here again with a personal status and a recent conversation I exchanged with a family member.

What you may want to pass along to a family member reluctant to get tested.Collapse )

roadrunnerdm [userpic]
by roadrunnerdm (roadrunnerdm)
at February 9th, 2006 (05:02 pm)

My sister and I are both carriers of the BRCA1 mutation, which we inherited from our father. We learned of the mutation after my sister recieved her diagnosis for breast cancer at the age of 38. Her doctor recommended genetic testing prior to surgery so that she could make a better informed decision about whether to choose breast preserving surgery or a full bilateral mastectomy with oopherectomy. With positive results in hand, she chose the radical surgery. It may have been a very wise move. The pathology results after surgery determined that she already a second tumor growing in the other breast that had not yet been detected. Since then she has completed treatment and remained cancer free for 3 years.

As soon as my sister tested positive for BRCA1 I had myself tested. After testing positive, I had a dilemma to face, since I had not yet had children and was not yet ready to face losing my ovaries. I set a time limit by which I determined that I would have to be done with childbearing and then go ahead with preventive surgery. I knew that waiting was a risk, but I was willing to take it, for a few more years, in the hopes that I could still have a child first. Wouldn't you know it? As I was in the process of preparing my work schedule and home to pursue a pregnancy I was diagnosed with ovarian cancer. I have just completed the first phase of chemotherapy and will soon be entering the "maintenance" phase. My tumor marker tests are well within "normal" range again.

Learing that I was BRCA1 positive was frightening, but not nearly so frightening as it would have been to be completely blind-sided by such a cancer diagnosis in my thirties. In fact, it was knowing that I was at high risk and knowing the early symptoms of this disease that both led directly to a swift diagnosis, which is usually not the case. Though my symptoms were still mild and inconsistent, I was able to direct my physician to run the approriate tests, just in case. Had I waited until my symptoms were truly problematic because I didn't know about the dangers... well, I'd rather not think about it.

As it stands, I have a year's worth of maitenance ahead of me, but now that the heavy phase is over I'm already getting my new running shoes broken in and planning to celebrate the completion of all chemo next winter by completing my 4th marathon.

clownfish13 [userpic]
by clownfish13 (clownfish13)
at November 23rd, 2005 (08:28 am)

Hi Erin, thank you for setting this up, great idea. I am 30 and BRCA 2+. I have known for about 5 years now. Sorry to hear that you came back positive but FORCE has a great group to give support.

The Artist Formerly Known as Irish_Lily [userpic]
by The Artist Formerly Known as Irish_Lily (kellygreen)
at November 23rd, 2005 (02:12 am)

Well, since I started this community, I suppose it's only fitting that I make the first post. I guess I'll start by introducing myself.

My name is Erin and I'm a 22-year-old university student from Guelph, Ontario, Canada. I was recently tested for a hereditary BRCA1 mutation, and on November 14, 2005 my results came back positive. My father is a carrier of the mutation, and so is one of his four sisters. My dad and his siblings decided to be tested after they realised that the rate of breast and ovarian cancer in our family was really high. My oncologist tells me that I am very young to have been tested, but it's something that I knew I had to know. A cousin of mine was diagnosed with breast cancer (she's BRCA1-positive as well) when she was 28, and that terrifies me. I know that having positive results for a BRCA1 mutation is far from being a death sentence, but I'm still scared. And that's why I'm here.

My oncologist and genetics councelor gave me a few pamphlets when I met with them last week to get my test results, but the pamphlets weren't really of much help. There aren't any support groups in my city for this particular issue, and so I thought I'd create my own. I hope that I have created a community where people feel safe and comfortable to discuss their own hopes, fears, and experiences. I want this community to be open and accepting, and above all else a place where we can help one another process new information regarding our health and well-being, deal with personal tragedy, overcome feelings of fear and depression, offer hope and advice to others, and face our risk of developing breast and ovarian cancer together.

I welcome you all with open arms and an open mind.

Erin x

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