There was a good bit of excitement in the world of breast cancer (population: far too many) this week around a study part of the federal project Cancer Genome Atlas.
The fact is that the topic of genetics makes my head swim. Science in general has always been a tough topic for me academically. But I never thought I'd be in a place in life where genetics would be so fascinating. Where it would both strike fear and enormous hope in my mind.
In case you missed it on the news Monday, take a quick look at this study. It was on all the news shows Monday and Tuesday of this week. The study focused on my kind of cancer, Triple Negative, on basal cell cancers that start in the milk duct. Now, that's the kind of attention I love!
I still take exception to writers and researchers who publicly call Triple Negative "deadly". Wish they wouldn't do that just to get an emotional response from their readers. But I guess that's what most writers seek from their readers - an emotional response. Anyhow, the bigger point is that even though the risk is higher for me, there are plenty of Triple Negative survivors. Plenty. In fact, I'm going to be one of them.
So while I wish the writer of this article would be a little more positive, I get the point: A drug commonly used today to treat ovarian cancer is proving to be very effective against "deadly" Triple Negative cancer in studies and clinical trials. WooHoo!
Friends, give a big hello to PARP Inhibitors! There are many studies and clinical trials going on around breast cancer. I try to stay abreast (get it? A Breast...) of these studies. But this one is special. This one could be reality SOON. This one could potentially save MY life. Not just the lives of cancer victims in the far away future. It's the here and now.
Now that's the sort of science I love!
If you ask me these days I will tell you life is good. I feel good. I often feel GREAT, even. The fatigue still pokes at me once in a while, but that's just a good excuse to take a nap, right?
Living daily life without shades of chemo hanging over me is really really nice. Still have a few side effects, but considering what I've dealt with in the past few months, these are truly minor. Just an annoyance. Kind of like a gnat.
If it wasn't for the mastectomy racing toward me, I'd wonder what in the hell happened to me last spring? But the mastectomy, not to mention the scars I see daily, mightily remind me that I am a cancer patient. Like a brick over the head.
My mastectomy is one month from today. One month from today I will be a different woman, in a million different ways. Physically, emotionally. You'd think that post-mastectomy would be a joyous time for me. I'm DONE with cancer treatment and can truly move on. I survived. Right?
Whoa...not so fast, Cowboy. My oncologist wants to see me every 3 months for the next 5 years for blood work and CT scans. Then, every 6 months for 10 years. The doc and I are going to be very long-term friends. She reminded me last week that I won't be "done with cancer" for at least 3 years. Then, for 5 years. Then, for 10 years. In fact, I won't EVER be "done with cancer". It will be part of me forever.
My sub-type of cancer generally recurs within the first 3 years, if at all. Here's what goes through my head when I hear that: You'll barely have time to recover from the trauma of the past 7 months or so before you'll have to gear up for the next life trauma. When I think of having to do chemo again, in the event of a recurrence, my heart sinks.
So...yea. No matter how great I feel today or how much I am appreciating these beautiful North Carolina fall days....I'm not done. This is just a temporary reprieve. Seems a little cruel.
In the weeks leading up to my boob-ectomy, I'm keeping the roads hot. Going to the beach. Yeah! Heading to the Outer Banks on Friday and planning to drive the entire length of the banks and visit every lighthouse and art gallery along the way. That's long been on my bucket list. May visit a different part of the coast the following weekend...a blast from my past. And the next weekend, I'll be in my beloved mountains visiting my son and watching the WCU vs. Southern Georgia homecoming game following an afternoon of tailgaiting. How awesome does THAT sound??
Not letting any grass grow under my feet. Have to make hay before the surgery.Cause who knows what life will be like post-boob-ectomy? Will I be so depressed I won't be able to L-I-V-E? Will my Frankenboobs scare me every single day? Will I be in pain? Will I completely flip out and walk dangerously close to the edge? To the edge of what, I'm not sure.
I find myself touching my breasts a lot. As though I'm saying goodbye to a couple of loyal friends. I'll miss the chicks. They've seen me through thick and thin. I'm not sure their replacements will ever truly replace my gals. But they'll have to do. After all, I don't want to be a cancer patient FOREVER. Just for the next ten or so years...
Part of the whirlwind and chaos around my breast cancer diagnosis included genetic testing. A simple blood test changed my life forever.
I tested positive for BRCA1 (BReast CAncer gene 1). Five to 10% of breast cancers are inherited. Like mine. You are more likely to carry this gene mutation if you have a family history of cancer (any kind), are of eastern European descent, or if you are African-American under the age of 35. The only one of these that applies to me is the family history.
Many women who carry the gene mutation RUN toward a double mastectomy and an oophorectomy as a prevention. Others just use it as an invitation for more frequent screening. In my opinion, testing positive means your breasts have a huge potential to kill you. And keeping your ovaries increases the risk of breast cancer since ovaries produce the very estrogen that fuels breast cancer. Seems a no-brainer to me.
Insurance companies don't like to pay for genetic testing. It is expensive. Mine paid for it only because I have a strong family history. I was lucky. My breast surgeon said at the time that genetic testing will be routine like mammograms and colonoscopys within the next ten years. Insurance companies will embrace genetic testing cause prevention is cheaper than a cure. That also means we'll likely live longer, which could be a down side for insurance companies.
Getting my head around having breast cancer, understanding my genetic status, and dealing with the fall out has been quite the task. I'm still reeling from it seven months post-diagnosis. But the single one thing that has surprised me the most is the reluctance I get from family and friends about having their own genes tested for BRCA. Men and women. Men can get breast cancer, too, and they can pass the gene mutation on to their children. My son has a 50% chance of passing it on his daughter. He's getting tested, end of discussion.
Why wouldn't you want to get tested? Especially if you have a strong family history?? Am I not the greatest living proof point for discovering your genetic status?
Someone said to me recently "I'm not sure I want to know...". Whhaaattt? You don't want to know you are in line for breast and/or ovarian cancer? Seriously? You want to wait until its cancer so you can go through chemo and radiation before getting your head out of your arse and taking action? I don't understand the attitude. Save yourself the agony of cancer treatment, get the test. Make informed decisions.
It's a simple blood test. And yes, it may change your life forever. But it will increase your chances of having a forever. Doesn't that make it worthwhile?
It's better to know. Way better. For sure. Just ask me.
