Wednesday, October 21, 2009

A worthless cure

Before my breast cancer diagnosis, if I were reading this blog…a simple little style blog by some SAHM… and I saw this saga begin to unfold I’d be thinking, “Holy shit, that poor woman!” and I might also be quietly wondering if something like this could happen to me...subconsciously hoping to find some difference, something unique about this unfortunate woman with breast cancer that separated us and meant I was not in danger.

But there is nothing particularly different about me.

And if you are a woman reading this you are in danger.

One in eight women will get breast cancer sometime in their lives. That’s the worst math ever, if you ask me. It shouldn’t be ignored. It should make each and every one of us incredulous, angry and proactive. But it usually doesn’t. I totally understand that. I wasn’t proactive or incredulous or angry either.

But I am now. And I don’t want to be alone.

Yes there is better awareness today, earlier detection methods… new drugs, new tests, new treatments. Breast cancer is fast becoming considered almost a manageable disease by some standards, tho not by mine, not by a long shot. Instead I find myself wondering more and more…what about prevention? I mean, if I were you reading this blog that is what I would want to know more about. Is there anything I can do to try and prevent getting this awful disease in the first place?

Turns out there are things you can do. Granted, they are not a guarantee, but doing nothing clearly shouldn’t be an option either. I’m learning as much as I can about prevention because the same things that prevent breast cancer from occurring in the first place will also help keep it at bay once you’ve had it…because I want to prevent my children from ever having to face what I am facing now.

So, to do my little tiny part during "Breast Cancer Awareness Month" I’ll be blogging about what I feel are preventative measures we all MUST be aware of to protect ourselves, our friends, our mothers, our sisters and most importantly – our collective daughters, from this hideous disease. Whatever you think your personal risk level is…remember, over all it is 1 out of every 8 -- a pretty crappy statistic.

Let’s start with this: Know your family history.

Now, let me emphasize that more cases of breast cancer occur in women with ABSOLUTELY NO FAMILY HISTORY. That being said, having a familial pattern does greatly increase your risks. Oh, and don’t think if your mother and her family line are cancer free you are off the hook. Men also carry the presently known inherited genetic mutations that greatly increase the risk of breast cancer. These mutations occur in tumor suppressor genes that we all have and are commonly referred to as the BRCA 1&2 genes. The fact that mutations in these genes can be passed down from our fathers is something I didn’t know before I got cancer. Moreover, it’s not just breast cancer in your family tree that raises your risk…if there is colon, ovarian or prostate cancers amongst your relatives all can indicate the genetic link for an elevated risk of breast cancer occurrence too.

(CLICK HERE for more info if you think you may be a carrier of the BRCA genetic mutations...and for a GREAT blog read from a brave woman who does carry the mutated gene, check out Goodbye to Boobs --brilliant, witty and informative)

However, you should understand -- it’s not just about your family tree when we talk about genes.

Not to get too sciencey here (is that a word?) but ALL BREAST CANCERS ARE GENETIC– they are just not all hereditary. What’s the difference? Genetic diseases and disorders involve mutations of the DNA in cells, you know, the stuff that is sort of a blueprint for how to build more cells…something we do constantly. There are basically two kinds of cells, ones involved in reproduction…call them sex cells, and ones that aren’t, called somatic cells. The DNA in sex cells determine how you get hereditary factors, like everything from your eye color to a BRCA gene mutation for breast cancer as I mentioned before. But the other kind of cells, the somatic cells, carry DNA mutations as well…copying errors during normal cell division that cause tumor growth.

But why does that happen, what causes these cells to go astray, as it were? If we knew that definitively we’d probably actually be close to a cure. There’s likely not one single answer here…but essentially the DNA is damaged in some way not related to hereditary other words the faulty DNA is not something one is born with. It is damaged by other influences that occur throughout our lives – and there’ll be more on how that might happen in a future post.

Without a doubt there are many other genetic links to breast cancer as yet undiscovered (or under reported) -- inherited or otherwise. If you’ve read any of this blog you’ll remember that my mother was diagnosed with breast cancer just two years ago. I had the genetic testing for BRCA 1&2 gene mutations and was found to be negative, as was my mom. Do we share an undiscovered hereditary genetic link or was it communal environmental exposures…or both? So far there isn’t a clear answer…for my mother, for me -- and a lot of other women, too.

And that's where the problem lies, IMO.

Nearly all the focus seems to be on new drug treatments for women who already have breast cancer. As much as that is important to me in particular, it isn’t at the top of my priority list. I want to know how to keep my daughter…and my son for that matter, from getting this. With what I’ve learned so far I’m making a decent start…nutritionally, environmentally, etc. I intend to share that info here in other installments. But in the meantime I hope I’ve got some of you started on thinking outside the box during this month of pink ads for breast cancer awareness…hope I’ve got you thinking about awareness from another perspective. I really hope that maybe if a few more people shift focus to prevention we can stop this disease in its tracks and diminish the need for medical technology after the fact.

An ounce of prevention really is worth a whole lot more than a pound of cure. It makes the cure worthless. That’s what I want. I want the cure for breast cancer to be worthless because it’s no longer necessary.

(stay tuned as next time I’ll talk about knowing your body and understanding how fat effects your risk)


Brenda said...

Nutrition factors also play a big factor in our chances of getting breast cancer.

I'm glad you are saying these things.

Anonymous said...

Hi - I found your blog through Steph's Goodbye to Boobs - I'm also a SAHM that blogs about my BRCA1 mutation among other things. I'd love to add your site to my ever-growing blogroll, with your permission.


Sheila said...

Good for you, Kayleigh - I think it's hugely important not to be complacement just because you don't think you have a family risk.

Hope you're doing okay, hon.

Meg Wolff said...

Great post, Kayleigh. It boggles my mind why so many people can walk or run for a cure, but no one asks much about the cause.

Kari said...

I do have a family history, through fortunately through my father's line (we were told that greatly decreases the risk as opposed to if my maternal grandmother & aunt had breast cancer instead) so I appreciate this post. Fortunately both of my relatives went through genetic testing and were negative for the BRCA, but still, it's something I'm really concerned about.

Kayleigh said...

Thanx all!

Kari -- I just wanted to pop on and say that I've never heard that if the BRCA genes run thru the father's bloodline that it poses less risk...and I can't seem to find any info that substantiates that. Who told you that and do you have a source I could check?

Also, in terms of BRCA testing the only people whose test results matter specifically to you are your own mother & father's...anyone elses results don't have any effect you. Does that make sense?

Either way, I hope your genetic tests are in fact completely devoid of the mutations :)

Thanks so much for your comment, I'm glad this post was of interest to you!

Lauren said...

i hope that your treatments are going well... i'm almost finished with chemo for hodgkin's, and my mom had breast cancer. good luck with your novel as well!

i have two blogs - one about my style (new) and one about my chemo... feel free to check them out!


Kari said...

Hmm, Kayleigh, I don't really know except that it was something my relatives mentioned to me after they had been tested. However, like you, I can't find that information documented anywhere, and you've done a LOT more research on the subject than I have. Maybe that was just plain incorrect.

Either way, it was good news that the BRCA mutation wasn't present for both of the family members that did have cancer. But I'm still going to be super dilligent about checking for any potential problems.

Imogen Lamport, AICI CIP said...

Great post - so sad that you have to post it.

I know from the work I do with Look Good Feel Better just how breast cancer strikes all ages and demographics. No one is immune.

Keep up the good fight.


sallymandy said...

Thank you, Kayleigh. This is great information and the admonition to learn about prevention means so much, coming from you.

Another friend of mine was just diagnosed last month. It seems to be everywhere.