A breast cancer survivor shares her experiences with the BRCA gene.

Thursday, August 28, 2008

Mentoring 101

I have become a mentor for two women I know, who were recently diagnosed with breast cancer. My heart broke each time I received the news of their diagnosis, and all I could think of was wanting to alleviate their fear and hurt. I've been there.

Both are outstanding women, who live remarkable lives. They have interesting jobs and are terrific moms. I hate this for them.

I'm also extremely touched they turned to me for help, comfort, advice. With this topic, it's impossible to avoid the personal and vulnerable in discussions. You get down to brass tacks and dirty details.

This gut-level honesty establishes a tight-knit bond quickly and powerfully. Because we're talking life and death here. (Okay, so we're also talking beauty tips...)

We discuss our mortality. We share our frustration about our predicament: what did I do to get this?...why won't the nurse call me back?...what if treatment fails? We talk about solutions to combat the side-effects of chemo and dealing with well-meaning people who do the wrong thing. Most of all, we commiserate.

I feel the weight of responsibility in not wanting to let them down. Being a mentor, you want to make sure you are doing everything you can.

But, this is where I need to be reminded of my own advice. When a friend asked what I found most helpful while undergoing cancer treatment, I told her it was every single thing people did to let me know they cared, that I mattered and that I wasn't ALONE. Feeling like everyone is living full, glorious lives while you are on the sidelines fighting a disease and missing out on everything. This is a daily struggle. When people take part in your ordeal, you are reminded that you're not on the outside...others are with you every step of the way.

I think of Jan Bilthouse, in particular. Jan, who is owner of The Bilthouse apparel boutique in Buckhead, is a breast cancer survivor and extremely involved in fundraising and mentoring for breast cancer. When I heard I carried the BRCA gene--which meant a double mastectomy--I immediately thought of Jan, who had already dealt with this. I left a message with an employee at her shop the day before Thanksgiving, and explained the reason for my call. It seemed like just a few minutes later, my phone rang. It was Jan, driving her family on the way out of town for the holiday. She responded to my call for help right then and there. It was exactly what I needed.

I hope the women I'm reaching out to will be on "the other side" of treatment soon, with a new perspective and appreciation for their lives and the knowledge that they do, in fact, matter.

Thursday, August 21, 2008

Mom & The Blog

Well, the word is out. Mom has read my blog and, of course, she remembers details differently. I knew she would. She pointed out the facts I got wrong and gave another point of view about certain incidences I wrote about. I told her to start her own blog.

But, mostly, she said it appeared, as she read my blog, that all she & Dad did throughout my ordeal was 'let me rest in their easy chair." So, let me set the facts straight on this one: They were amazing.

Mom & Dad have been my support throughout my bout with breast cancer and, more recently, my BRCA testing and surgery.

From the very beginning, they have played a critical role. They were the ones who showed up at the doctor's office the day I found out I had breast cancer seven years ago. Gary was at work because I was assured by the doctor's office that they wouldn't find anything conclusive that day, so it wasn't necessary for him to be there. I sent Gary off to work that morning and he naively went. But, Mom & Dad, with their experience in caring for others over the years, knew someone should be there with me...just in case. And they were right. I was diagnosed that day, and needed them to carry me out of the doctor's office and take me home in my state of shock.

Throughout my cancer treatment, they provided food, ran errands, took me to doctors' appointments and screenings, and sat with me during all the long waits. They offered to help in any way they could. They even paid for my "chemo wig" -- with a $1,000 price tag that was not covered by health insurance at the time.

During the years following my treatment, they called for an update every single time I had a follow up doctor's appointment or mammogram.

And, this year, during all the BRCA testing and surgery, once again, they drove me to appointments, ran errands, researched information I needed, fixed food, cared for me during recovery from surgery...and let me rest in their easy chair.

Wednesday, August 20, 2008

Christina Applegate

The actress, Christina Applegate, has been in the news recently about having breast cancer at a young age, testing positive for the BRCA gene and undergoing a double mastectomy. In her interviews, she showed bravery and a sense of humor (saying she would have great-looking breasts in the nursing home compared to all the sagging women).

Two things I noted about this incidence. One, is how I see my parents still being affected by the stress they endured this year, worrying about their daughter having the BRCA gene and undergoing all the surgery. Mom stayed glued to the morning new shows when Christina was interviewed. Then, Mom responded by doing something she had never done before -- she posted an email on one of the national network station's site, saying that since Christina was carrying the BRCA gene, she needed to watch out for ovarian cancer as well, which was never mentioned in discussions about BRCA. For Mom to post an email to a national site told me that BRCA was still top of mind for her.

And, Mom is right. My oncologist told me during my recent visit that of her BRCA patients who have undergone the propylactic (preventative) surgeries, that 100 % -- repeat, every single one of us -- had pre-cancerous cells on the EXACT same spot on our fallopian tubes. One 100% of us. That tells you something -- that the BRCA gene is far more insidious than just breast cancer, and women need to take a hard look at the possibility of having ovarian cancer as well if they carry this gene.

The second thing that struck me with the Christina Applegate interview is her claiming to be "cured of cancer." I love her optimism and her spirit. I'm hoping she will never experience cancer again. However, the statement is false, since once cancer is in your body, you can't guarantee that there aren't other cancer cells lingering somewhere that chemo or radiation or surgery didn't eliminate.

So, although I had a double mastectomy and hysterectomy and reduced my chances significantly of developing cancer again...there's still that remote possibility there will be a stray cell that can develop into full-blown cancer. That's why I will never be able to take estrogen or consume soy products -- since estrogen/soy "feeds" cancer cells.

I am glad, however, that Christina Applegate appeared in public and shared her story -- who knows how many young women took note and began questioning their chances of carrying the BRCA gene. After being immersed in the world of BRCA this past year, I'm discovering the enormous lack of information about this gene among the breast cancer community -- especially among breast cancer survivors who are strong candidates for testing (those who developed the disease before menopause)...and especially among survivors with daughters.

A simple test could provide worlds of information that could not only save your life, but your daughter's as well.

Friday, August 1, 2008

Why Pursue BRCA Testing

Several books have popped up recently about women who discovered they carried the BRCA gene and their resulting decisions.

One woman in her thirties had a double mastectomy, but held off on a hysterectomy until she had children. The other author decided to do nothing since she felt there were more issues around early menopause, and didn't want to subject herself to all that surgery.

  • I was advised to undergo BRCA testing, since I was diagnosed with breast cancer at 42 years old. Diagnosis at an early age (pre-menopause) is an indicator that you may carry the BRCA gene.
  • BRCA testing is often covered by health insurance, especially if you have already had breast cancer. Or, if you prefer, you can pay for it yourself ($3,000) so that your insurance company doesn't know.
  • NOTE: Myriad Genetics Lab does not report results to your insurance company (it's completely confidential), so the only way this will go on your insurance record is if you have your insurer pay for it.
  • The BRCA gene has implications for other family members. If it's confirmed you carry the gene mutation, then other females in your family may be at risk. The male can be a carrier (my dad passed the gene to me) and may be at risk for early prostate cancer. However, the higher risk for developing cancer is among females.
  • Just because your family carries the gene mutation doesn't mean that you will inherit it. My sister-in-law's mother, aunts and grandmother all carried the BRCA gene and it wasn't passed along to her.
  • Once you are diagnosed with the nightmare of breast cancer and endure all the treatment, you never want to go through that experience again. If you haven't had breast cancer, but are at high risk, you need to think long and hard about keeping yourself at risk.
  • A scarier diagnosis is ovarian cancer since it's extremely hard to detect in early stages and is very aggressive and invasive. In fact, it's most often found when it's hard to effectively treat.
  • I can't say this enough: Because I took immediate action -- even when my doctors thought I had more time before committing to surgery -- they found fallopian cancer in its initial stages (pre-cancerous, non-invasive cells). This was a shock to all, including my surgeons. After this discovery, I was told that had I postponed surgery just 6 months later, I would have been in trouble. It was a miracle I had surgery when I did.
  • Many breast cancer survivors I've talked to who were also diagnosed at an early age have not pursued BRCA testing since they don't know enough about it and don't think it applies to them. However, when I was diagnosed with breast cancer 7 years ago, I was told by medical experts that my cancer was not linked to heredity. Seven years and tons of medical research later, it's a different story. In other words, check it out. Information may have altered since your original diagnosis.
  • What I didn't realize was how significantly reconstruction surgery has developed over the years. I can honestly say that my body looks better now than before surgery. While it's not a recommended diet plan by any means, if you have to go through all the trauma of surgery, this is to assure you that there's a strong chance you'll come out of it reducing your risk of developing cancer AND with a new body as a consolation prize. This may sound shallow in light of cancer and death, but is a real concern among women (to have their body massacred) and why many don't pursue taking action.
All to say, I recommend anyone who thinks they might carry the BRCA gene to talk with their physician. If you haven't had cancer, talk with your gynecologist. If you have had cancer, discuss with your oncologist. It could save your life.