Tuesday, November 26, 2013

The Journey Begins . . . . .

Well, the journey actually started a few months ago when I decided to get genetic counseling and testing done.  Being told you have tested positive for the BRCA2 gene mutation now begins a new journey of thinking, analyzing, and taking steps to reduce the risk of breast cancer. 

Today I met with a surgeon at the Breast Center of Mayo Clinic.  I liked her, and I liked what she had to say.  It helped put my mind at ease about this decision.

She is only part of the team.  The next step is meeting with one of the plastic surgeons that she works with - they have a team approach at the Mayo Clinic.  They have worked together on many surgeries, and while most of my questions involve the reconstruction options, I was able to get some of the questions answered today.

The date has not been set yet, but it looks like the start of the new year will be the start of a new me!  There are many aspects of this journey that scare me, but after seeing everything my Mom went through over the years, I truly believe a good attitude and Ted's support will get me through any rough times.  I'm going into this with the attitude that I'm going to beat breast cancer before it comes knocking at the door.  And with an 87% chance of getting breast cancer because of the BRCA2+ diagnosis, it will come knocking. 

An MRI will be scheduled soon to be sure that there is nothing lurking around in the breasts before surgery.  And, of course, they will do other pre-op blood work, EKG, etc.

I also agreed to be part of a study that this breast surgeon is doing.  It involves letting them keep some of the breast tissue in their lab (on a slide) for future study (as well as some blood).  In addition to studying breast tissue that has cancer, they are interested in non-cancerous breast tissue from people who test positive for the BRCA1 and BRCA2 gene mutation.   So, as a bonus, I'm contributing to future research in this study!

Happy Thanksgiving!

Monday, November 18, 2013

Happy Birthday, Mom!

Today would have been my Mom's and Aunt Phyllis' 82nd birthdays.  This picture is from my birthday back in June of 2007, the last photo of us together.  Little did we know that two months later, my Mom would die at age 75 after complications from a simple hernia repair surgery.

Arlene Gleichsner was a SURVIVOR!  She survived breast cancer twice - 25 years apart.  She survived ovarian cancer - having two years of monthly chemo treatments to beat the disease.  She survived diabetes.  She survived a hip replacement.  She is my hero.

Phyllis Lanham was her twin sister.  Unfortunately, she also got ovarian cancer and did not survive.  She was only 70 when she died.  She was like a second mother to me - she is my hero too.

They are not the only ones in my family who have battled female cancers - cousins on my Mom's side, and my only Aunt on my Dad's side have fought the breast cancer battle.   The males in my family have seen both pancreatic and prostate cancers.

Recently my gynecologist suggested genetic counseling.  I had been given that suggestion by my doctors in Kentucky too, but I didn't know if I was ready to deal with the knowledge I might gain.

Genetic counseling involves someone looking at your family history and deciding if you are at high risk for developing cancer.  If you fall into the high risk category, a blood test can determine if you have a genetic mutation in the BRCA1 or BRCA2 gene.

Everyone carries the BRCA1 and BRCA2 genes.  They are called "tumor suppressor genes" because they make proteins that help prevent the cells from forming tumors. If one of these genes is changed through a mutation, the protein may not do its job, making it easier for a tumor to develop.

If you have a mutation in either the BRCA1 or 2 gene, your lifetime risk for getting cancer is higher than the general population - breast cancer risk goes to 87%.  Also, you have a higher risk for getting ovarian cancer and pancreatic cancer.

So, I had the blood work done.  And then a two week wait to get the results.  Last week, I found out that I tested positive for the BRCA2 gene mutation.

I'm a PREVIVOR (lucky me)!

What is a Previvor?  A previvor is a survivor of a predisposition (or increased risk) for cancer.

There is good news - I don't have cancer.

There is bad news - If I do nothing, there is a very good chance I will get cancer.  Several years ago I took care of the risk for ovarian cancer.  But now there is the breast cancer issue.

I began researching and found that there are many women in this situation - women of all ages deciding how to deal with this knowledge.  I've found a few support groups on Facebook.

There are two options when faced with being a Previvor.

1.  You increase your screenings (every six months), and pray that you don't get cancer.

2.  You have a BPM - bilateral prophylactic mastectomy

Wow, try to wrap your brain around those choices! 

Here is the problem with the first option.  I feel like a ticking time bomb.  Will I get cancer?  A person who tests positive for a gene mutation doesn't automatically get cancer.  And the 87% lifetime risk goes down the older you get.  Since I'm 56 and have never had breast cancer, my risk is still high, but not at 87%.  Factor in my family history, and this "waiting" option scares me.

Here is the problem with the second option.  Major surgery with major reconstruction.  The reconstruction options are not like getting a boob job.  There is a long recovery and lengthy process for reconstruction which involves several operations.  And then there is the risk of infection and complications.  This option scares me too.

But I'm lucky.  I know now.  I can make a decision without the decision being forced on me because I have cancer.  Getting cancer scares me more than any of the above choices!  I've seen two women fight it.  It is not pretty.

So, why do I want to share this very private information?  Knowledge is power, and I hope that my journey will encourage others to do what they need to do to stay healthy.  So many women put off their yearly mammograms and doctor visits.  It might not be the most fun thing to do once a year, but you are worth it.  Your family is worth it.  Not getting cancer is worth it.

I've read blogs where women document their experiences.  Their writings have helped me in making a decision.  Had they not shared, I would feel alone in this journey.

Have I made my final decision yet?  I'm on my way to making it.  I have a consult in a couple of weeks with a surgeon at the Mayo Clinic breast center.  I'll find out all the options that right now scare me.  I'm lucky that I live in Phoenix where the Mayo clinic and hospital is located.  I'm lucky that we have health insurance.  I'm lucky I don't have cancer.

I'm thankful that I took the step to find out.  I'm a previvor!  For more information on how you can become empowered, check out the FORCE website.