Update on BRCA BART testing

I received my BART testing result today and it is negative which is great news!

All In The Family

...or is it? When I was diagnosed with breast cancer 3 1/2 years ago, I learned that breast cancer runs in my father's side of the family. I had never known this, probably because people in my grandparent's generation never discussed such private body parts, um I mean, topics. Problem is, though, my father is an only child and men do not typically get breast cancer, so knowing the degree to which I might or might not be predisposed to breast or ovarian cancer was a bit in question.
Was it a random fluke or was it an environmentally caused cancer? Was it my own body's lack of sufficient immunity? Was it indeed a genetic mutation in my DNA? I think every woman who receives a cancer diagnosis yearns for that answer. It hangs over us like a dark cloud, partly because we think, perhaps, that if we know what caused our cancer we could prevent it from happening again. Well, as it turns out that may be partly true.

Women who test positive for the breast cancer gene(s) BRCA 1 or 2 are at a ten fold risk for breast and ovarian cancer over the general population. They tend to get these cancers under the age of 50, and they have a 50/50 chance of passing the genes onto their children. In the case of ovarian cancer, because there are no screening tests for the disease, by the time it is detected it is often in latter stages. With the advancement of technology it has recently been determined that additional women, initially deemed negative for the gene mutation like myself, can potentially test positive with a new test, called BART. ( BRCA large analysis rearrangement test) 3 1/2 years ago the genetic counselors told me that in years to come more advancements in testing would come available and this is beginning to happen now.

With my recent gyn ovarian symptoms and consideration for a hysterectomy, my oncologist recommended that I be tested. Today was the appointment for that test along with a lengthy counseling session with the geneticist. It was very educational and while the likelihood of a positive result being very slim, she has seen some surprising twists in other patient outcomes. It can have huge repercussions, so having the results is important to me. Not just for me, as far as surgical decisions going forward, but for my children, their children, my siblings and their children. Gone are the days when people were denied insurability based on genetics alone. Times are changing and some circles are realizing that knowledge is power and it is actually saving lives!!

While waiting for my blood draw I ran into a survivor friend. She also originally tested negative for the genes. She also is in a high risk category. When I told her what I was doing there she was shocked to learn of this new test for the first time and wants to see if it is something she should pursue as well. The problem with a statistic (which we often hear quoted) that only 7-10% of breast cancers are genetic, is that it is only based on those who get tested! If more women got tested would those numbers actually be higher? We won't know until insurance companies agree to test more women and results are made known. In the meantime, survivors need to stay on top of the leading news in research and testing and press their doctors to advocate for answers to that burning question... Is it in my DNA?

Biopsy results

I received my post surgical biopsy report yesterday and much to my surprise it was inconclusive. It stated that the specimen did not survive processing. Of course this was very disturbing to learn. I have since learned that this occurs for various reasons, not always within human control. I have to believe that my doctor's initial observation of a herniated muscle causing the lump is correct. I just cannot subject myself to additional surgery right now, and continued surveillance will be vigilant of course. This is where my faith rubber hits the reality road, for sure!! My follow up appointment is in another week.

Home from surgery

Just to update you on today's procedure. It appears it may have been a muscle bulge and trapped into some scar tissue in my reconstruction. The surgeon made a 2 inch incision, elevated it, released the muscle and biopsied tissue there just to be safe. We should have results in a few days but thankfully he did not seem at all worried. On a side note, this was the same surgeon who after one of my first surgical biopsies 3 1/2 years ago assured us that those types of tissues are never cancer and not to worry and then had to deliver the fateful news of a cancer diagnosis 10 days later. My first hope is that through THAT experience he has decided not to give his opinion unless very, very sure of it. My second best hope is that he is right to be confident in his assessment this time. In the meantime I am resting and enjoying a fancy combination of pain killers and pampering from my family :) in spite of a post anesthesia headache. Maybe just plain ol' Tylenol will do the trick on my head while the narcotics work on everything else. And as always, thank you for your prayers!

A Reason To Sing

I awoke this morning to this beautiful song sung by my 18 year old daughter. God must've known that I needed these words this day! Tomorrow is a big day. I will be having a surgical biopsy of a small 5/8 inch  mass found on the same side where I had cancer 3 years ago. It would be a very rare thing to have a recurrence but it is a possibility. I am grateful to have very good doctors who are thorough and compassionate. I know I am in good hands, but most of all in God's hands! Read the last line of this song. Now listen and enjoy!

A Reason To Sing

by All Sons and Daughters

When the pieces seem to shatter
To gather off the floor
And all that seems to matter
Is that I don’t feel you anymore
No I don’t feel you anymore

I need a reason to sing
I need a reason to sing
I need to know that You’re still holding
The whole world in Your hands
I need a reason to sing

When I’m overcome by fear
And I hate everything I know
If this waiting lasts forever
I’m afraid I might let go
I’m afraid I might let go
Oh Oh Oh

I need a reason to sing
I need a reason to sing
I need to know that You’re still holding
The whole world in Your hands
I need a reason to sing

Yeah

Will there be a victory
Will You sing it over me now
Oh
Your peace is the melody
You sing it over me now
Oh Lord
Will there be a victory
Will You sing it over me now
Oh Lord
Your peace is the melody
You sing it over me now

I need a reason to sing
I need a reason to sing
I need to know that You’re still holding
The whole world in Your hands
That is a reason to sing

The following article is from The SCAR Project blog. You can view the original post and photographs at http://thescarprojectblog.com/2012/05/04/soldier-interrupted/

[It humbles me and is my deeply felt honor to defer this post to my friend/survivor sister/wounded soldier/and one of the newest SCAR girls, Barbie. I was at Barbie's quite recent SCAR photo shoot. She is one of the three newest young women to be photographed by David Jay for The SCAR Project.  By that, I mean UNFORTUNATELY... there are new SCAR photos... which is why we are doing this. The youngest of the 3 was 22. She was diagnosed when she was 21. Barbie was diagnosed WHILE IN AFGHANISTAN. I'm sorry for the all caps but again... this is why we are doing what we are doing. We must end this bitch of a disease. I think SCAR Project LA producer Diana Haye said it best: "Try fighting in Afghanistan, getting diagnosed with breast cancer, having a mastectomy, and then having the guts and fortitude to help raise awareness for other women baring it all and showing their scars...Barbie did." And here's what Barbie said, in this special guest post.]

The dog tags and camouflage are real. I am still active duty. I have been in for over 17 years and 2 combat deployments. In February 2011, I was diagnosed with Stage IIIB Breast Cancer, four months after being deployed to Afghanistan.

At my own risk, I wanted to participate in the SCAR Project because it is important to me that people understand and know anyone can get breast cancer. In my experience, it’s not something that’s often paid particular attention to due to the overwhelming male population. At some units, I was one of a few and, at times, the only female. We tend to think we are protected and immune to things because we are given a weapon, a FLAK jacket and a Kevlar helmet.
I spent most of my time taking care of the troops that were under my charge, a duty that most service members don’t take lightly. I would lay down my life for them. That’s what happened in this case. It’s just that the topography of the battlefield got personal, encroaching way beyond the borders of Afghanistan.

I wasn’t willing to accept the lump in my left breast that became obviously larger to me over the weeks that quickly turned into months. I sacrificed my own health and life as long as I could in order to stay and deploy with my unit. We had prepared and trained tirelessly for months and worked ridiculously long hours.

Leaving my troops and my unit behind was and still is harder to deal with than my breast cancer diagnosis. The feelings that I abandoned and deserted them and wasn’t able to ensure that they were safely returned home to their families will haunt me for years to come. This may be hard for many people to understand but that is the reality within my world.

Breast Cancer has torn me away from not just a career but a way of life that I loved and dedicated and sacrificed for. I am not going to ever get over Breast Cancer or move past it. I will live with it for the rest of my life.

I don’t believe most people actually “see” Breast Cancer. They hear about it but they don’t listen. It is just a terrible thing that happens to everyone else but could never happen to them. I hope that when they look at my photograph, they open their eyes and allow themselves to absorb and take it all in and really think about why this is happening to so many young women.

Everyone needs to understand the absolute reality of this disease. We have the power to speak up and make a difference. The importance of this goes deeper than just me. My whole family has inherited the Breast Cancer Gene (BRCA2). The fact that there is a great possibility that I have passed this gene on to my son and that my nieces are also at risk makes this whole fight worth it. Even if it is 5, 10, or 20 years from now, it could save their lives. It is my responsibility to preserve their future and ensure their longevity.

Every woman David Jay has photographed has their story. That is what makes this project so important. As different as we all are, we share a common bond. It connects us, and it reaches out to others, and connects them to us as well.

David Jay has given me the gift of allowing myself to be seen by others as I am now after being chewed up and spit out by cancer.

As awkward and uncomfortable as it may be for others to view, I am not embarrassed or ashamed. My young life has been rudely interrupted — and yet, I continue to forge on and accomplish things that others only talk and dream about. Perseverance, endurance, determination….these are the things that have been taught to me and instilled in me. I live in a world where giving up or giving in is not an option. Overcoming is the only way.

Cancer Fallout

Looking at the vacation photos in my last post, you would never know that I have been struggling with fatigue. It's actually more than fatigue. It's a feeling of complete lethargy. Malaise. Zapped. I've known for months that my body just wasn't right. I haven't felt this crushed since chemo, and it all started about a year ago. At that time, I consulted with my oncologist who through a series of blood tests, determined that I carry an antibody which prevents my body from absorbing vitamin B-12. Easy enough. I started monthly B-12 injections 6 months ago. At first, I did start to feel somewhat better, but in the last few weeks have had little energy to do even the simplest of daily tasks. All I want to do is just to lay down.

Last week I met with a new oncologist. Not that I didn't love my old one! I did. I do! But when Walter Reed closed last summer, things changed, he moved to Bethesda, and  I'd rather forgo the 90 minute trip to see him. There is a new oncology ward near my home now, so I thought I'd give it a try for general check ups. Dr. "V" was very kind, very thorough and listened to my every concern. He ordered a long list of blood tests, and in short, they came back with me having vitamin D2 deficiency such that 50,000 units have been ordered for me each week for the next 8 weeks! Maybe this will be the magic trick to bring my body back to reality. Most days I feel like I am operating in a fog, unable to find the motivation to do much of anything.

Dr. "V" was so thorough, in fact, that he wants this lump on my reconstruction to be biopsied. I asked him if the MRI from February stating that it is  "likely scar tissue" is not definitive. He said that, no, it is not. He didn't like that word "likely" in a patient who has a history of two distinct cancers and wants pathology from it to know for sure. He sat right there and typed an e-mail to the breast surgeon saying as much, and I go to see Dr. "A" in about a week and a half.  He also wanted confirmation that my choice to no longer take Tamoxifen is the right choice for me. We ran the numbers into an oncology prognosticating calculator called New Adjuvant. Turns out, because of my her2+ cancer, hormone therapy is not much benefit to me and so with his blessing I will not worry about taking it. This is a big relief because as anyone with hormone receptor positive cancer knows, as mine was, women suffer through years of side effects by blocking their naturally occurring hormones. Compliance is very low on these drugs because of that.
In addition (like I need an addition) he wanted me to follow up with  my gynecologist regarding lower back pain I have been dealing with each cycle. She phoned me the very next day and scheduled a pelvic ultrasound for the end of this month. Does the fun never end? I am beginning to think that I am deficient in FUN. That's it! I need more FUN!

John and longtime girlfriend, Lisha

On a very sad note, I received word last month that my chemo buddy, John, had passed away. John and I sat together every week for the better part of a year. He had been at this game a long time, fighting colon cancer for a total of 8 years. He was 53. He made it his mission to incorporate colon cancer screenings into Army retirement discharge medical tests. I was shocked and deeply affected by his death. I never knew anybody to die young before I was diagnosed with cancer. Never before the age of 90! John is the 2nd friend I have lost since my diagnosis. He had a strong faith. I know he is in Heaven. I know he is free from pain. I know I will see him again! Still, the reality is not easy to accept. I have 3 friends with metastatic breast cancer to their liver and bones right now. These are women who are my age and younger. Some who even had my same staging and diagnosis 3 years ago! There is no remission for them. Metastatic means that they are at stage 4 now, and there is no stage 5.

The fall out from cancer continues. It's sad, and it is no fun.