Saturday, October 26, 2013

Decoding Annie Parker: Movie about BRCA1 Gene

I am learning more and more each day about Breast Cancer. How can I not take the time to learn about something that, even though I cannot I have or have had it, affects me so very much right now at this point in my life.

What an amazing story to learn about the hereditary links between family members and breast cancer. To imagine that there was a time doctor's did not believe there was any sort of link. To a day like today, where a genetics test for BRCA1 can tell me, "YES, you are linked to your family and yes, you will most likely develop breast and/or ovarian cancer because of it." Wow!!

I actually had a OB/GYN that I told about my Aunt and Cousin being positive for BRCA1 a couple years ago. He told me, "I wouldn't worry too much, it's from your Dad's side of the family." NOT does not matter if it's your mom's or your dad's side.

Anyway, there's a new movie out that I would have probably overlooked in the past that I may take my TISSUES to and go see....if I can ever find where (so far it seems it's only been released at film festivals). Anyway, it's called Decoding Annie Parker, and I wanted to share this preview.

dap logo

Decoding Annie Parker is a feature film based on the real lives of two remarkable women.  It is the story of Anne Parker, played by Samantha Morton, a sharp witted, funny and irrepressible young woman who watches her mother, then sister, fall victim to breast cancer.  When later, she herself is diagnosed with the disease she believes that her cancer must be hereditary in nature.  She is resolved to fight back against immeasurable odds.

The film is also the story of Dr. Mary-Claire King, played by Helen Hunt, the Berkeley based geneticist whose discovery of the BRCA1 gene and it’s link to hereditary breast cancer forever changed the understanding of the disease.  Hers is considered one of the most important scientific discoveries of the 20th century.

Annie Parker and Mary-Claire King are separated by thousands of miles, by circumstance, background and education, but their lives gradually intertwine until a final, singular and life changing reckoning.

Friday, October 18, 2013

Having a Pity Party Afternoon

So I thought I was finally at the stage where things start to get better and my crazy emotions aren't going up and down. Poor Kirk has suffered through some monumental emotional freak out moments and should get an award for listening and supporting me when I'm crazy. But I've been so busy with work this week that I've felt really good and like I am finally coping. In all honesty, I thought this blog had been the perfect cure for it all...and I was in fact "cured" of my depression. But all the sadness in the world and things I watch my friends going through (kid troubles, death, money, jobs and even cancer) just hit me like a wrecking ball (no Mylie reference intended) and I lost it. I hate crying when I don't feel like I have a reason dang it!

So chalking this up to a bad afternoon...

Then I remembered reading about another BRCA1 gal on the message boards. She was complaining about having a "Pity Party" and how she felt alone. Then I remembered how much loved one of the people's responses to her "Pity Party" and went in search so I could share it here.

Re: pity party, table of one -

by crunchster » 10/2/2011, 11:43 am
Your table has always been a popular one at the Hotel BRCA1 and there are many of us who have sat where you sit. Your posts indicate that you are already enjoying the floor show, "The Tap-Dancing Significant Other" makes frequent appearances in various costumes. Watch as he nimbly leaps and evades your every attempt to lean on him, but sometimes his show does have a surprise ending where he remains solid and there for you. You may also see the acrobatic feats of the Supportive Friends who will try to lure you from your pity place by promising to carry you on their shoulders. The trick here is to realize that some of them really can't carry themselves, much less anybody else, so be prepared for the occasional tumble if you take them up on it. Same story with the "Flying Family Trapeze" some of them will reach out and try to catch you as you "float through the air with the fear of disease" but luckily, you have already set up your own safety net here at FORCE. Even so, you may be able to cling to some of them- or not.
In all seriousness, the circumstances that now surround you are difficult and scary, not just for you, but for the people in your life who really care. You will learn who you can count on. There will be some who will go above and beyond your needs and expectations and others who will drop by the wayside. Some of them will fail you because they have their own baggage, not because they don't care, but because they just don't know how to help you. The lesson I have learned on my journey is don't expect people to somehow "know" what you need from them, no matter how close they are or how much they love you, they cannot read your mind or understand the dips of this emotional roller-coaster that you are now riding. Try to understand that they, too, are riding their own scary ride in which they fear for you and for the impact that this will have on their own lives. That's a hard adjustment to make and some people will just not respond in the way that you need them to. For some, time will bring them to the right place because this is, primarily, about "you." For others, it will always be about "them." For the guys in my life, I've found that concrete tasks are what they do best. My son devoted himself to finding good DVDs and entertainment for mom during her recovery. My husband helped me set up my "nest" for post-surgery. They really want to "do" something for you, even though what you may want is for them to hold you and tell you that it will be okay. And when you are ready to get up from your table, just remember that you are doing this to avoid that other table in the house; the one that faces the "exit" sign.

Tuesday, October 15, 2013

Appointments all Scheduled...BREATHE

I have to keep telling myself to BREATHE... especially when I start to feel a bit overwhelmed. Honestly, after all my breakdowns over the weekend the past couple have days have been rather calm and free of a lot of much emotion and panic. I also think writing these posts is VERY helpful for me. Ever since I started I don't feel so out of control with illogical emotion.

So taking a deep breathe...

However, today I have spoken to the people at the Huntsman three different times. Feeling happy that things seem to be moving forward, but also a little freaked out at the realization this is REALLY happening to me. Yesterday I was thinking... maybe it will all go AWAY but it's not!

Anyway, just a quick update...I have scheduled my first appointments for the following:

  • Gynocologist - She will be talking to me and planning what we're doing for my hysterectomy.
  • Surgeon #1 - This appointment will be the one we talk to about the details regarding Bilateral Prophylactic Mastectomy. Hopefully he can answer all my questions about the pre-op, operation and post-op.
  • Surgeon #2 - This doctor will be the lucky receipient of MANY questions regarding my reconstruction options. I always wanted to say I went to a plastic surgeon, but this was not what I ever imagined. Go figure!
So happy that I can work towards making a PLAN...but still scared.

Monday, October 14, 2013

Angelina Jolie & Me

So both Angelina and I are BRCA1 huh? And my cute boss said to me after I told her my news, "This is probably the only time in your life that you will have something in common with Angelina Jolie."

Which is funny because I've had a bit of a girl crush on her for the longest time. And who wouldn't love some Brad Pitt. But as you may or may not have heard, she tested positive for BRCA1 and decided to go public about her recent Mastectomy and reconstruction. If you missed it, you can read more about it in her New York Times, "My Medical Choice." 

So like any blogger or social media addict like myself, I turned to the internet and found some useful and not so useful information about being positive for BRCA1. Here are some I first found. 

Medical Choice Video 1

New York Times: The Story of a Previvor

New York Times: Revisiting a Previvor

Previvor Video

Thursday, October 10, 2013

So Many Questions and a Mammogram

I was thankful that Wendy from Huntsman Cancer Institute has been so patient. She was more then wiling to schedule this appointment with her and an Oncologist at the Huntman Cancer Institute. We spoke for a while, they then took action at my request and made appointments for me to meet with a Gynecologist and the two surgeons that would possibly do my Mastectomy and reconstruction. And as an added was a year since my last mammogram so before I left I got my tata's squished!

The appointment was to address my initial plans for screening and/or surgery. They were both so good at answering all my questions regarding my risks of cancer and surgeries. My mom was there by my side. I opted to take her to this appointment only because she tends to keep me calm and not anxious like Kirk. Wendy did give me my official test results with the Clinical Note/Letter. In fact, let me share a bit....

Official Assessment Letter: Your family history is significant for hereditary breast and ovarian cancer syndrome, and there is a known genetic alteration in the BRCA 1 gene in your family. The specific mutation identified in your family is called Q1313X. Genetic alterations (mutations) in this gene are known to cause a highly increased risk for breast and ovarian cancer. When your sample was tested, the Q1313X mutation was identified in the BRCA1 gene. Women with a BRCA1 alteration have up to an 80% lifetime risk for breast cancer and up to a 60% risk for ovarian cancer.

The BEST information I receive today from our trip to Huntsman was learning that there is a website called FORCE This website has forums for questions from others like me, links to a local support group, doctors, articles and so much more. It's all people like me that have a genetic mutation that makes them HIGH RISK for developing cancer. In fact, here's a quick fact sheet about FORCE.

Sunday, October 6, 2013

Qualifying for BRCA Testing & Family History

Now I've had many friends ask me how they would go about being tested for the BRCA 1 or 2.

Like many of you, I had never heard about the BRCA1 (or 2) gene mutation a couple of years ago. But I was contacted by my Aunt asking if my dad had told me about a recent test her and her daughter had had that both were tested positive for....of course without any communication with my dad I knew nothing about it. Immediately my sweet cousin emailed me her test results indicating that these results would help my doctors local the same mutation in my genetics. I didn't feel an urgency to figure out what was next quite yet.

However, I started with my OB/Gynecologist and he was NO help really. I went in for my yearly exam and informed him that my Aunt and Cousin had been tested positive and would this be something I should be concerned with. He said probably not so much since it was my dad's side of the family. So I let it go until I returned the following year. I brought it up again but this time to his female PA. She said it's a myth that you cannot get breast cancer through your dad's line and immediately told me about the Huntsman Cancer Institute and their genetics counselors. So I did what most of us do, I tucked the information on the sticky note into my purse and promptly lost it.

But it wasn't until my sweet friend that was facing Stage 3 Breast Cancer were talking. I mentioned I was needing to be tested for BRCA1 and she immediately told me how simple it was and gave me the name and number of the awesome guy at the Family Risk Assessment Center at the Huntsman Cancer Institute that would schedule me an appointment.

I figured if she could bravely face her challenging future, then I could suck it up and get tested. I called finally and made the appointment.

So from what I understand, you have to meet with a Genetics Counselor to assess if you are at risk based on family history. Huntsman does not charge you for this meeting, it's a service they provide. They had me fill out a Medial History and then Family History that is specific to the history of cancer in my family. 

After she reviewed this information and then met with me, she informed me that I qualified for the test. It required a simple blood draw and them shipping it off to a lab to test. I was told that "most" insurances will cover most of the cost of the $475 test and before I left we learned that my insurance would cover all of it (wahoo)!

Then you wait to learn the takes 2-3 weeks.

Here's some things people THINK they know about cancer...
  • You cannot get cancer from your father or his your father's side of the family = MYTH
  • Breast Cancer skips a generation = MYTH

Family History
This is a very rough outline of the cancer that runs through the Larsen side of my genetics. I cannot say it's completely accurate, but it paints a pretty good picture.

My Grandmother (Father's Mother) - Breast cancer on one side and she was in her late 60's when first diagnosed. She had a lumpectomy, no chemo, She didn't have any recurrence or new cancers during the rest of her lifetime to I believe age 81.

Aunt 1 (Father's oldest sister) - She had cancer on the right side the first time and had a complete mastectomy only on the right side. A few years later she developed breast cancer on the other side (new cancer, not a recurrence) and had the other breast removed. However, due to lack of insurance and how far along the cancer was the second time it spread to other parts of the body and eventually is what killed her at age 69. (Oh how I loved her and miss her.)

Aunt 2 (Father's sister) - She had breast cancer in the right breast the first time (age 42 or 43) and a partial mastectomy and removal of the lymph nodes. Several years later she was diagnosed with stage 3 ovarian cancer (which they almost missed) and underwent complete hysterectomy. More recently she had breast cancer again on the right side again, but due to genetic testing she had a double mastectomy. None of her cancers were a recurrence of previous cancers, all were new presentments.  

Aunt 3 (Father's youngest sister) - She had a really aggressive form of breast cancer that presented only on one side. However, due to how aggressive that type of cancer is she had a double mastectomy. She was around 42 or 43. 

My father has one other sister that hasn't presented with any cancer that I'm aware of. He has a brother as well that I believe was recently diagnosed with thyroid cancer, but I was told that has nothing to do with the BRCA mutation. His daughter was tested for BRCA1 and tested negative. Just to clarify...there is no breast cancer on my side of the family to date.

You might find this infographic helpful. I am a visual person so I like colorful charts. You can click here to view it larger