Tuesday, February 8, 2011

My breast cancer conundrum

So for those of you who know me, already know I have one of the two great whites of the breast cancer gene world. I am BRCA-2 positive as they say. BRCA-1 and BRCA-2 both come with identical breast cancer odds, it tops out at about 87% by age 70. But they differ in their odds of ovarian cancer. BRCA-1 tops off at about 40% by age 70 and BRCA-2 tops off around 27% by age 70. There are other cancers associated with them too, BRCA-2 also carries an elevated risk for both prostate and pancreatic cancers among others. Now these are strange numbers to deal with because they probably aren't strictly true, but until they can break down the genes more thoroughly and understand the more subtle nucleotide variations those are the numbers to go by.

So I've spent the last 5 1/2 years of my life educating myself about breast and ovarian cancer. I have religiously done all of my screenings (sans my last ovarian cancer screening, that one is overdue, but it didn't light up on my pet scan plus my ovaries are essentially frying like, well, eggs, so they are a moot point). I have read books on the subject of high risk women, I have acquainted myself with Dr. Susan Love who I don't believe has a clue about "previvors" but that's ok she doesn't have to. And well I watched the previvor movement from it's infancy. A "previvor" is a man or woman who carries an astronomically high cancer risk. They (wow, how weird that I now have to stop saying "we") are technically considered cancer-patients-to-be by oncologists. They have a quazy (sp?) place in medicine, and it's a weird state of being. Most of their screenings are similar to cancer patients who are in remission. They are also allotted by most insurance companies, they same surgical, chemotherapy, and screening coverage that cancer patients are. It's a cost measure really, if the probability is there, if you keep an eye on it, you can catch it in Stage 1. The ealier you catch it, the less expensive for your insurance to treat it. Though at the end of the day if insurance companies could, they'd drop them all together. Who wants a patient with a 90% shot to get cancer? But Pres. Bush signed a law saying that you could not descriminate agains someone for having a genetic disposition to a disease. Cheney must have been locked in a closet that day! ;) Sorry republicans just playin whitchya.

So I was a previvor for 5+ years and I wore it like a badge of fucking honor. I knew I was getting breast cancer, it was only a matter of time. I lived and breathed this disease. I knew it backwards and forwards, I knew every option I had available to catch it and then kill it. And then I had my daughter and started to flirt with the idea of just never getting it. How does one do that you ask? Drastic action. You go to Sloan Kettering and they tell your insurance company that they are removing a perfectly healthy patient's breasts, replacing them with fake ones and essentially taking her 87% risk of breast cancer down to about a 2% risk. This was the path I had chosen. But I was waiting. I was waiting to see what the long term studies would say about skin sparing surgery. So I gave myself a deadline, age 40. By then I would know if skin sparing surgery was worth the risk or if I went all in and did the full bilateral mastectomy with spacers.

I know this sounds extreme, but I was looking at it like this, I could continue to screen every year, twice a year or I could take action. I could actually prevent myself from getting it in the first place and avoid things like chemotherapy! (Are you laughing yet?) Besides I've breast fed, they are no where near the line a latitude they used to be, trading them in for another set, was not unappealing.

Then there was the oopherectomy. When you get your BRCA results, the first thing your genetic counselor starts to do is talking about your ovaries as though they have an expiration date. They aren't playing, oncologists, genetic counselors, OB/GYNs, when they hear BRCA they want to yank and yank em fast. The reason? There's absolutely NO, I can't stress this enough, NO reliable screening for ovarian cancer. You have one option, a transvaginal ultrasound along with a ca-125 blood test. They are used together to determine if they think you might have ovarian cancer. It doesn't actually work. But it's all they have and since women like to have babies, it's something to screen while you keep your ovaries. But it's unreliable and has virtually no success rate.

There's a scientist in TX who thinks she's solved it, I hope she has. But it'll be years away. So in the meantime, when you're a BRCA your ovaries start ticking. So mine were too. I wasn't as jazzed about removing them as I was about the boobs. I didn't like the idea of menopause at 40, plus no ovaries would do nothing to change how I look in a t-shirt, so they were always kinda in the back of my mind.

Anyway, I don't know where this is all leading. All I know is, I spent the last five years preparing for a cancer I'll probably never see. Plus if (sorry, when) I make it through this, I will remove everything. I mean really. The idea of losing my ovaries was so scary, now the idea of them silently killing me makes me hate them. But again, they are dying a slow death right now, so I will give them a break. They didn't do anything wrong and they gave me Sophia. But honestly, I'm all about yanking em now. And the boobs, well, I was already ok with removing before I even had a cancer. Now I have a stage 4 cancer and would remove my lungs if I could.

Well no, I wouldn't, I like my lungs, and I'd like them back. I guess my point is, I feel duped. I was ready for breast cancer.

I remember in the ER the day we learned I had Lung Cancer, I said, "I'm not prepared for this." My dad said "No one is prepared for this." And I said, "Oh fuck no. I was prepared for breast cancer. I was beyond prepared for breast cancer. I thought it all through, how I'd be told, how I'd break the news to my parents, how I'd opt for a mastectomy no matter how early they caught it" I had the whole fight mapped out in my head. And while yes my father is probably correct had this been a Stage 1 breast cancer diagnosis, it would not have all gone down as neatly as I'd planned. But I would have known more, I would have gone into it with my eyes open.

This Stage 4 lung just doesn't make sense. Why did I get this heads up for breast cancer just to get hit with this? What was I preparing for? What was the point? I am just so confused!

I just feel resentful. I don't really see what the lesson is? I've always believed knowledge is power, I was proud that I faced my BRCA status head on. And for what? It's so weird to leave it all behind, I still haven't canceled my March mammo yet. This will all go down into some kind of "past life" file. Like that was before the Lung Cancer.

I think I will continue to encourage people who need to get the BRCA test to get it. The odds are way too high to not know you need a mammogram earlier than the general population. But I feel so left behind. I know these are weird things to say, but I can't make sense of this.

All I know is, I'm burning my breast cancer books. I am too angry at them right now.

And I don't mean to imply I'd rather have breast cancer because it's an easier cancer to face. I don't believe that. Breast cancer is deadly, esp when NOT caught early. And so many are not. In fact there is a false impression that the breast cancer movement has created. The death rates for breast cancer have actually not budged in about 40 years. A fact that very few people know. That does not mean there have been no advances, there have been many on the genetic front and on the tissue sparing front. But early detection is still something that has to be addressed. The advanced Stage numbers are WAY too high for a disease that has so much money going towards research. Plus there is still triple negative breast cancer out there and it's evil. Though the UK thinks they may have solved it, the developed a medicine called a FARP inhibitor, and it sounds really promising. It's currently in trial, I have high hopes.

But to this day the number one killer of African American women is breast cancer. Not heart disease, breast cancer. Because of the high occurrence of triple negative cancer and no understanding as to why it clusters that way. In fact there's an excellent chance that African American women have their own great white gene like BRCA but it hasn't been discovered yet. Because Myriad Labs the company that gives the BRCA test (not the people who actually discovered the gene just the people who patented the test itself, long story but the women who found BRCA doesn't get a dime) has decided to charge 3000 dollars for a test that only costs about 400. Why? Because they have chosen profits over progress and Congress has yet to act because well, it's the American Way isn't it?

All I'm saying is, I feel like I got hit with a bait and switch. I guess the moral of the story is...

Life is what happens when you're busy making other plans.

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