Friday, October 10, 2008

Our family breast cancer story

Last week, my cousin Amy found out that she has breast cancer.

This is her story of facing breast cancer, but it effects everyone in our family and it is my story as well.

Three months before I married Kyle, my Aunt Deanna died of breast cancer at the age of 47. She had only been diagnosed 9 months earlier. My mom lost her sister and my maid of honor, Amy, lost her mom. Our whole family lost a wonderful daughter, sister, mom & aunt.

Amy and I have known eachother since we were wee sweet little girls. Our moms were sisters and though we spent most of our lives a three hours drive apart, we managed to become great friends. Sometimes we email (or sent letters) every week and then sometimes we don't talk for months, but I still consider her one of my best friends, one who is always there when you need her.

Four out of six of my grandpa's sisters died from breast cancer. One died from "stomach cancer" which was most likely ovarian cancer. For years, my mom mentioned this to doctors, and each time the doctors told her "genetic breast cancer is passed through your mom, not your dad, so you have nothing to worry about".

Right before she passed away, they took a blood sample from Deanna to check for a genetic marker for breast cancer. She tested positive for a genetic mutation that is called BRCA2. Because of my grandfather's family history, we are certain that it was passed through him and it is common knowledge today that the gene can come from either parent.

A month after her mother died, Amy also tested positive for the gene which meant she had an 85% chance of getting breast cancer during her lifetime. That same week she was having a cyst removed from her breast that kept showing up as suspicious on mammograms. She remembers lying on the table with tears streaming, positive that she was going to die and leave behind her one year old daughter and her husband.

A few weeks later, my mom tested negative which presumably means I do not have it. I found out a few days after Kyle & I returned from our honeymoon. A cousin of my mom & aunt also found that she tested positive, but many in the family decided they were not going to test, at least not right away.

Those of us who tested negative felt huge relief that was nearly smothered by guilt. The first couple years after losing her mom & finding out she had the gene were incredibly hard for Amy, feeling like cancer was lurking right around the corner and that she would never make it to see her daughter marry or meet her grandkids.

This gene is also linked to ovarian cancer which is rarer, but more deadly. Our mother's cousin had this disease at age 27 but survived. Every time they found a cyst on Amy's ovaries, she had to go in for a painful, hormone disrupting biopsy. Because she had painful endometriosis and was tired of all the biopsies, Amy decided to remove her ovaries & uterus.

This meant that at age 27, Amy was launched into full menopause and she struggled for years to get her hormones balanced right again. When things were off, she describes it as a dead numb feeling - like your emotions are sucked out of you.

sigh. I know, its horrifying.

Over the next few years, Amy slowly healed emotionally and learned how to live with the shadow of breast cancer looming over her. She learned what worked best for her to handle the risks she faced and she started to have peace with the issues she had to deal with in her life.

Amy began to contemplate her options for diminishing her breast cancer risk. This summer, she attended the FORCE (Facing our Risk of Cancer Empowered) an annual forum on hereditary breast and ovarian cancer. Anyone concerned about hereditary cancer: cancer survivors, high-risk individuals, those with a BRCA mutation or family history of cancer, and health care providers who treat high-risk patients; were there.

After gathering information at the conference, Amy finally made the decision to have a preventative double masectomy on October 23rd in New York where she could g et the most cutting edge surgery available. She would have both healthy breasts removed, get implants and reduce her risk from 85% to 5%.

I can barely fathom how difficult and sad it would be to make this decision. When you have this gene, there is no one who is going to tell you exactly what you need to do. Everyone has a different opinion and a different way of handling it. Sorting through the options is an extremely hard and emotional proccess. Amy spent time grieving the loss of her breasts, but was also extremely excited to have the spector of breast cancer erased from her life once & for all.

Last Thursday, three weeks before her surgery, Amy went to the UW for a routine pre-surgery breast MRI. They discovered cancer in both breasts, cancer that had not been there in February during her last MRI. Cancer that neither mammograms or an ultrasound had detected.

Amy had a biopsy on the cancer cells this week and will find out soon what the prognosis is. It is very likely that she will still go to NY for her masectomy on October 23rd, but we don't know anything other than that.

If you'd like to hear Amy's story in her own words and check for updates on her status, you can go to her blog here. I know she would appreciate your prayers in the weeks to come.

I meant to spend this post telling you how incredible my cousin is and I sort of got wrapped up in the story and forgot to mention it. But hopefully it is apparent that she is amazing and has gone through incredible things. But my favorite part is that she is down to earth, quirky and totally normal. She is wonderwoman, a basket case, is kind and sometimes very grumpy, all at the same time. She isn't always perfect but she is amazing all the same.

Did I mention she is beautiful & had so much better fashion sense than me when we were growing up? All the pictures of us growing up that I looked through for this post, I looked like a dork and she is there looking all cool with a perfectly posed smile. But at least we both had huge glasses at the same time. And by the way Denaye, you should be happy I cropped you out of that shot, because you looked just like us. : )

Update: I didn't get this posted quickly enough but decided to leave it as is. We found out today that Amy does not have cancer! The cells were pre-cancerous and need to be removed, but are not cancer. (all the doctors that looked at the MRI were certain it was cancer) Check Amy's blog for details. This is a huge answer to prayer and makes me happier than I can describe. If I was into animated fireworks on my blog, I would insert them here. Thank you God.


Jenny said...

Kari, I was so wrapped up in Amy's story and am relieved with you at the results!!!!

I will be praying for your cousin all the same!

D said...

Well written Kari-- Good Job! I enjoyed reading this from your perspective, and now rejoicing with you at the biopsy results.


Tiffany said...

Kari, Thanks for sharing your/your cousin's story. I got all teary reading it and then even more teary reading the ending. I will keep you and your cousin in my prayers!

Jen said...

Thank you for sharing your families story. I wish Amy the best of luck!

Amy said...

Awww. Thanks Kari! Well written, you should look into freelance writing! Anyways, I so did not have better fashion sense. I thought I looked grumpy in all the shots but MAN look at my stomach in that one at Yellowstone. What I would give for that 8-10 year old pre-baby stomach. I got wrapped up in the pictures. Makes me want to take a family trip or go family camping and do a play. We had so much fun. Thank you all of Kari's friends for your thoughts and prayers.

Amy said...

By the way, I saw on Project Runway that short bridesmaid dresses are in now! I was just ahead of my time. lol.

TheFiveDays said...

Oh my goodness, I was SO happy to read your wonderful message at the end. WOOHOO!!!!

And unfortunately...we all have pictures like that, especially those of us who grew up in the 70's!!!

shawn said...

Awesome. Go Amy! And Kari, you rock a mullet.