Wednesday, July 30, 2008

Cancer, Cancer. Whatcha gonna do? Whatcha gonna do when it comes for you?

I've had this post kicking around for a couple of weeks, but with Lisa's news yesterday this seems like a good time to post this.


When I was pregnant with C.C. I had an appointment with a genetic counselor because, in the prime of my life at age 35, I was classified as a woman of "advanced maternal age" and I hadn't yet decided if I wanted to go through amniocentesis.

There was nothing in my or Mr. C's family history that caused any alarm for our yet unborn baby but while mapping out my family history red flags popped up for me. A bunch of red flags. Big, crimson ones that didn't have any cute welcomes beckoning to me like "Eat Here. Early bird specials, including dessert, starting at just $7.99", "Half price apps. after 7pm", not even my favorite "Half price drink specials Tues. and Weds." or "99 cent draughts". Just scary red flags with the word "Cancer" written on them in big block letters.

My mother died of colon cancer four years ago. My grandmother, my mother's mother, died of ovarian cancer, a related form of disease, last year. And years ago my Gram's half sister died from breast cancer, a cancer related to ovarian. It was like following a daisy chain. Unfortunately, I'm the half hitch and from the looks of things I'm barely hanging on. One tug and the whole thing will let go, metaphorically speaking.

Metaphors make the cancer easier to take, didn't you know? Follow the yellow brick cancer trail! Follow the yellow brick cancer trail! Follow, follow, follow, follow...

I had my own brush with cancer ten years ago. I had an aggressive form of the HPV virus and within a year I went from clean pap smears to Oh my CHRIST. Get thee to a doctor NOW or you'll get THE CANCER.

I was treated. Cells were removed. My feet were in the stirrups more times than I'd like to remember but everything worked out fine. Unfortunately, this diagnosis coincided with my mom finding out her cancer was progressing faster than had hoped and major surgery had just been scheduled for her. It was a dark time in my life.

My mom was diagnosed with colon cancer when she was just 44 years old and since there is a genetic link, doctors told my sister and me that we would have to start being tested when we reached the age of 35, or roughly ten years before the age my mother was diagnosed. Let me tell you, I'm not looking forward to some physician I don't know shoving a camera up my butt to have a look see but I'm going to do it. I have to.

But before then I have another appointment with a genetic counselor in September. We'll chat, maybe talk about the good old days when my mom's insides were being ravaged by cancer and about my grandmother who refused to be tested even though her oldest daughter died a horrible death at a ridiculously young age.

I'm not sure but if you research my last name you may find it's English for "Ostrich who sticks his head in the sand because if you don't know bad things are coming then they'll just go away. LA LA LA LA LA".

After that, who knows? Maybe they'll recommend genetic testing to determine if I'm, in fact, predisposed for the big C. And that, my friends, scares the beejebus out of me.

I'll get tested. I'll go every year if I need to. I'll drink that vile liquid that will clean my insides out better than Roto Router on a clogged toilet (Oh the symbolism!). I'll bitch to my doctor that I will not have any of those other tests that are only good about 10% of the time and just put on the pith helmet already and grab your pick ax because it's time to go SPEELUNKING! I'll fight with insurance companies who probably don't want to pay for this procedure for someone my age. I'll do all of that...

But do I really want to know, really, truly know, that the damn cancer is coming to get me? Would you? How much information is too much? If you were me, would you take a cue from my dear, ostrich-like grandmother and not want to know anything or would you face it head on?

Ha! I scoff in the face of cancer! HA HA HA H... *cough* *gag* *whimper*

Would you willingly get a test that would tell you as definitively as possible that if the screenings fail (which they don't usually) you'll end up with this disease? And if you did, what would you do with the information?


Kelly said...

This is an excellent question. My mother is a survivor of stage-III colon cancer. My great-grandmother died of metasticized breast cancer. My grandmother and her sister both has mastectomies. I know what you mean about feeling that the big-C is coming to get you.

I've already had the colonoscopy, the mammogram. If you have rigorous, preventative health care, would a genetic test do anything besides provide an insane amount of anxiety? So, perhaps because of your mother's young age at diagnosis, you have the colonoscopy every year, rather than every 5?

There is a part of me that would want to know, but knowing, goodness, I don't think I could function. I worry enough about the what-if's.

SciFi Dad said...

Fuck. As a man, I am genetically conditioned to avoid doctors for this very reason: they might find out something is wrong.

I don't know what I'd do if I found out I had cancer. I'd probably panic about the long-term effect on my wife and kids, and after that, I just don't know. Probably a good solid dose of denial.

Anonymous said...

I haven't had my DNA tested but I paid for my mother to have genetic testing done.

She is a breast cancer survivor. Her mother died from cancer that originally started in her breasts. After a lump in my breast last year turned out to be the one and only clump of fat my daughter did not suck out of there while breastfeeding my doc suggested that my mom gets tested.

Since she already had cancer if the tests came up positive it wouldn't make a difference to her health and life insurance companies. However if I had myself tested I would be marked as high risk if the genetic markers were found.
(wow, this is turning into a long comment)

Our family decided that we wanted to know if there is a genetic predisposition so my mom had the testing done. Tests came back negative. *phew* But I, my daughter, my 3 aunts and 8 cousins would have known to be more diligent and push our physicians a little harder if anything abnormal develops.

Amie Adams said...

As an adoptee, my aunt used to tell me that I might be better off because I wasn't always worrying about the family history of cancer, whereas she had to be checked all the time. And all her checking never prevented it from happening--I lost her anyway.

I don't know. I just don't know.

Cecily R said...

That's a hard question to answer. I am a terrible worrier. I think knowing might send me into a tail spin I'd have a hard time getting out of. But if knowing helped me plan better or handle it better or help my kids handle it better, then yea, I'd want to know. The question is, WOULD it help me in those ways? I just don't know.

Chicky Chicky Baby said...

T w/ Honey - Now there lies the rub - Insurance. Not sure it's worth the hit I'd take on insurance. Especially if I plan on keeping up w/ screening anyway.

Jennifer said...

OK...I used to handle communication and public relations at a cancer center that had a very good genetic screening clinic in it, so I have a somehwat different outlook on this topic. But, I'm also in a family full of cancer survivors, so...

My take on it is this: if you're in a family that places you at a high risk for cancer, you're ALREADY worried about whether or not it will happen to you, hence your post and preoccupation with the topic. Genetic screening DOES NOT tell you that you are going to get cancer...only that your risk in increased (something you already sort of know).

However, it can also tell you that you ARE NOT predisposed to certain types of cancer. So, in some cases it can be a relief. However, too many people interpret that as an excuse to be lazy about screenings.

Mammograms are great, but lumps can be missed on them. In addition to your annual exam you should be doing monthly breast self exam. Not to be crude, but your husband is probably a better judge than you are about changes to your breasts. Have HIM do the exam. Do the exam at the SAME TIME EVERY MONTH. Doing it right before your period one month and right after or during another month can create a situation where you THINK there are changes that aren't really there.

Mammograms don't start at 40 for everyone. If you have a history of breast cancer in your family then you should start your mammograms 10 years PRIOR to the incidence of cancer in that family member. So, if mom or grandma was diagnosed at 45, you should start screenings no later than age 35.

MOST cancers have a VERY high cure rate if caught early. Did you know that the cure rate for prostate cancer is almost 100% when caught early. That's right. I said 100%. Ignoring screenings and not going to your doctor is the WORST thing you can's like signing your own death sentence.

As for genetic screening - it's obviously a personal choice, but for some groups who are more prone to certain types of cancer (breast cancer in Ashkenazi Jews) it's an opportunity to take some prophelactic steps (like radical mastectomy) to avoid the issue at all.

Additionally, some types of cancer are linked (like breast and ovarian), so genetic screening allows you the knowledge to screen for multiple types of cancer that you might not have otherwise looked for.

Similar issues arise with birth defects and expectant mothers. Do you want to know so you can be prepared or so you can have an abortion? Or, do you not want to know because you'll have the baby regardless?

It's a REALLY tough issue but one that should be made with as much information as possible up front. my soap box. Sorry.

Greens and Pinks said...

I'm predisposed. My maternal grandmother died of pancreatic cancer and my paternal grandmother died of ovarian cancer. I've already had skin cancer - so I'm all for the early screenings.

We met with a neurogeneticist (sp?) before I had Claire to assess her risk of being on the spectrum like her older sister. Lots and lots of sometimes uncomfortable questions, but I think worth it in the end.

Marjie said...

I tend to avoid doctors. But I had my youngest son 5 days after my 39th birthday. On one of my earliest prenatal visits, when one of the office staff referred to me as an "elderly maternity patient", I went all ballistic on her. Hell, why make anyone feel worse than they already do by adding negative mental vibes?

kittenpie said...

I think it changes when you have kids. I think now I would want to know how much time I had and if it were likely something I'd have passed on. Still, what would I do with the info? Still keep the screenings up. But maybe prepare more. Or maybe that's morbid? I guess I'd be hoping for good news, and hard news could be quite the big shock, so it might not be worth the setback for someone like me who doesn't have much family history. But if I did? If I felt liek it was worrying me enough and often, I think I would want to know. I'm a planner, after all.

Pgoodness said...

I do not know. I'm adopted, so I have no clue what I'm up against.Perhaps it's better to know so you can be prepared for it, and if it's caught early, the chances of survival are better, right?

So maybe. But then again, maybe not. I just don't know but you sure have given me something to think about.

Jess said...

I would, and willingly, although that's probably because of my family's medical history-I'm bound to die of something. (You know what I mean)

My husband's mother died of Alzheimer's. I was at a family dinner the other night and someone brought up the topic of genetic testing. Turns out all the children had the opportunity to be tested for the markers - and they all turned it down.

They explained it as they didn't want to live their lives with that hanging over their heads.

I didn't say *but wanted to* that I thought that was selfish, that didn't their kids deserve to be prepared (somehow?) Didn't they want to be sure everything was settled in case.....

Then I realized out of all the siblings, J is the only one who had any kids.

Cate said...

I just had a very similar appointment with a genetics counselor earlier this summer, to discuss the possibility of testing. (Probably at the same clinic you're going to, actually.) I am just about sure that I am not going to go ahead with the test. Ignorance is bliss!

Not really. But you already know you're at risk. These screening tests don't tell you anything certain, just elevated risk. (Consider the prenatal screening tests vs. something diagnostic like amnio.) Even if I had the test, it's not like I could cross cancer off my list of things to worry about forever. Just that particular kind of inherited cancer.

And there are consequences to being tested -- they told me that some insurance companies will deny anyone who's even had testing, not just those who come up positive. After all, if you're asking questions, you must have something to worry about...

It's a minefield. I'm sorry you have to deal with it.

Now go make an appointment for your colonoscopy.

Anonymous said...

Well I don't need the test. I know I'm predisposed to cancer. My father's had it 3 times (skin cancer twice and prostate once), I had skin cancer in multiple places before I was 18 and 2 of my 3 sisters have been treated for cervical cancer. I mean what would I get tested for? You can't have bigger signs than that. That said I also believe that prevention is better than cure and don't smoke, don't suntan and I try to eat healthily and exercise (although I suck at that part). I try not to worry about it but I also figure its pretty inevitable. Awareness and a positive attitude can make such a difference.

I remember when I was 15 when my dad first had skin cancer. When they went in to remove the cancerous area around the mole they realised that it had spread from 0.5 inches in diameter to over 4 inches in diameter. Thats the difference not sticking your head in the sand gets you - would you rather lose a tiny area of your body or a large one? Makes going to the Dr seem like less of an issue to be avoided doesn't it?

Velma said...

I kind of assume I'll get some form of cancer some day. I focus on staying up to date on my checkups and trying (mostly failing these days, but still trying) to live healthier. I mean, I could get hit by a bus tomorrow, but I hate to waste my life worrying about stuff that hasn't happened yet.

However, I did find out when pregnant with my first that I was a carrier for cystic fibrosis, and I'm glad to be able to pass on that knowledge to my kids. Testing is a really individual decision, I guess.

Unknown said...

I'm 39 soon-to-be 40, pregnant again. I too had to go through the genetic counselor. I assured her, my family only dies of strokes on toilets and heart attacks while driving, cancer doesn't even think about visiting around our parts.

Julie Marsh said...

My maternal grandfather had colon cancer. He had a colonoscopy and wore a little bag for many years. I couldn't have cared less about the bag; I was just glad I still had him around.

Likewise, I will take the tests, no matter how invasive or undignified. I used to be scared of information, but these days, I'd rather know what's happening, so that I can do something about it.

Fairly Odd Mother said...

I'd do any test out there to find out if cancer was waiting to get me. Because, if something out there bad wants me, I want to know about it so that I can give it my best shit-kicking, ass-beating fight of my life. No way do I want it to sneak up on me.

And, Mothergoosemouse, my dad, when he went in for his first major surgery to remove some of his colon, begged the surgeon to not leave him with a bag--he was so afraid he'd have to wear one. He regretted that very soon afterward when his entire colon went up in cancer and then spread like wildfire. A bag wouldn't have saved his life, but it may have allowed him more time with his young grandchildren and us. Sometimes there is something worse than your greatest fear.

Heather said...

I don't know that I would do the genetic screening. Probably not. I know my family history already. I also found out I was a carrier for CF during my first pregnancy and about lost my mind worrying. My husband had the screening done too and is not a carrier but those days not knowing were hell. Although I will do all the testing my doctor recommends when she recommends them.

Cakabaker said...

That is such a hard question. On one hand, I would want to know if I was at risk and maybe make so life changes, but on the other hand ignorance is bliss, and I'm all about ignorance!

Anonymous said...

This is why I don't leave anything up to chance. I get tested for everything, every year. I'm 27 and not due to start mammagrams any time soon but I'm gonna start them early anyways because cancer has been lurking in my family tree also. I haven't had genetic testing but I have had several other procedures done. And don't worry, the colonoscopy isn't as bad as everyone makes it out to be. Just get them to put you to sleep for it.

Anonymous said...

There's cancer all over my family and I assume I am at risk.My mother had four primary cancers. But until I can be absolutely assured that there is no way the testing results, or the fact that I was tested, can be used to deny me anything from a job to health insurance there is no ay in hell that information is going in anyone's computer. Knowing wouldn't change anything I'm doing anyhow and I value my provacy.

Mandy said...

My friend's mother died of an aggressive form of breast cancer at the age of 59. It was her second battle with the disease.

My friend opted not to get the genetic testing. She says she would rather not live her life in fear of a gene she has. Currently she's unmarried and has no kids. Maybe she'll change her mind in the future.

I think it's a brave decision either way.

The Domesticator said...

Hmmm....that is a tough one. I have already had skin cancer and I go for screenings every year. I worry when melanoma will end up inside my's scary. But, if there was the opportunity for a genetic screening to tell me if I would end up with a disease,ideally I would want to prepare emotionally I guess and to pay particular attention to ensure whatever screening it is for that illness is done as often as possible...maybe to catch it early? But, in reality, I wouldn't actually have it done (the genetic testing) to see if I am predisposed to a particular disease. I shudder to think what insurance companies would do with that information.

Michelle said...

Do it, do it, do it.

Everything I hear about every kind of cancer, is that your chances of overcoming it increase exponentially with early detection.

Hiding from it won't prevent it - and if it were me, I would be worrying myself sick anyways.

Don't bury your head.

Steph at Problem Solvin' Mom said...

Both cancer and heart disease run in my family. My father died 5 years ago at 54 from a heart condition, so my brother and I will both get screened for various things to detect as soon as possible if something goes wrong, but I don't plan to get any genetic testing done. I try to stay as educated as possible about what I can do to reduce my risk, and that paired wiht screening is what I feel like I can control.

In the end, I guess we each need to decide what makes us most comfortable given the circumstances, as uncomfortable as they might be.

Avalon said...

I guess, while I value the importance of these tests for some people, I don't know how knowing would change the outcome.

You can't treat Cancer earlier than it's diagnosed unless you plan to remove any and all parts that could possibly be affected.That wouldn't leave you with much.

For some, it may provide a feeling of control to know that the genes are there. For me, it would be the little black raincloud over my head. Even though I know it's there, I'm just as powerless to stop the rain.

Anonymous said...

I read your blog, and never comment, but I wanted to just say how sorry I am about your mom. I will be thinking about you and your family - you seem like such nice people, it might be tough now but I am sure everything will be ok.

Not Afraid to Use It said...

I would because of my kids. There is cancer all up and down my family. I am with pp's in the fact that I think it is probably inevitable for me--if motherhood doesn't kill me first. But now bc of my kids I will be diligent about screening bc I want to be that shriveled up, mouthy great-gramma that the kids come to visit.

karengreeners said...

You bet your roto-rootered ass I would.

And will. And have all sorts of other tests because I have those red flags all around me too, and they scare me more than a test.