Jun 272006

If you search the Google news function like I do, you may have already seen this story today.

This particular article is from The Chicago Tribune, but I am hoping the story will get lots of airtime in lots of newspapers.
It is, potentially, a pretty important newsflash for me and my mutant friends.

Here is the text of the article, as printed in today’s Chicago Tribune.


Study says X-rays may be harmful for women with genetic flaw tied to breast cancer

By Judy Peres
Tribune staff reporter
Published June 26, 2006, 9:23 PM CDT

High-risk women who rely on mammograms as a weapon against breast cancer may actually increase their chances of getting the disease, according to preliminary research released Monday.The study looked at 1,600 European women with genetic mutations that predispose them to get breast cancer. Women who reported having had at least one chest X-ray were 54 percent more likely to develop breast cancer than those who had never had one.This Catch-22, reported in the July 20 issue of the Journal of Clinical Oncology, means women with mutations in BRCA1 or BRCA2 genes might want to consider being screened with magnetic resonance imaging instead of X-rays, doctors said.It also suggests that women and men with a family history of breast or ovarian cancer might want to consider genetic testing to find out if they carry a mutation before they get any X-rays to the chest area, doctors said.Exposure to high doses of ionizing radiation—such as from nuclear fallout—is known to cause breast cancer. But the risk is small enough for the vast majority of women over 40 that experts still recommend annual screening with mammograms, which emit much lower doses.

In women under 40, mammograms are less accurate and the radiation is potentially more dangerous. But hereditary breast cancer often strikes women under 40.

“Maybe after age 30 the risk of cancer is high enough to justify the potential long-term risk of cumulative radiation,” said Dr. Olufumilayo Olopade, director of the cancer risk clinic at the University of Chicago Medical Center. “So we traditionally recommend that high-risk women—especially mutation carriers—start screening with mammography at 25.

“This [study] calls into question, is it possible by starting so young we might increase their risk?”

MRI could eventually become the preferred screening tool for high-risk women, said Olopade, who wrote an editorial accompanying the study. But it’s not a perfect solution.

MRI alone can be hard to read and have a high rate of false-positive results, which lead to unnecessary biopsies, said Dr. Virginia Kaklamani, an expert in breast cancer and cancer genetics at Northwestern University.

So, if a radiologist found something suspicious on an MRI, she said, “I’d probably recommend a mammogram” despite the radiation exposure.

“Until we have more research,” Kaklamani said, “younger women with a genetic susceptibility to breast cancer are between a rock and a hard place.”

David Goldgar, a genetic epidemiologist at the University of Utah and lead author of the study, said it is too soon to draw conclusions about who should or should not have screening mammograms. He said further research was needed to confirm the results.

The study “is not enough to mandate changes in clinical practice,” said Dr. Kathy Albain, director of the breast research program at Loyola University Medical Center in Maywood. “But I think it’s enough to modulate our recommendations for certain patients.

“If you have very young patients who are also BRCA carriers, maybe you don’t send them for a chest X-ray at the first cough,” she said.

Kaklamani said women known to be mutation carriers might also think twice about getting mammograms before age 35.

The European study did not look at breast X-rays, but the radiation exposure with a mammogram is significantly higher than that with a standard chest X-ray.

The researchers hypothesized that radiation might be very risky for BRCA mutation carriers because those genes are believed responsible for repairing DNA damage. Defective genes would be less able to repair radiation damage.

Dr. Lydia Usha, who runs the RISC (Rush Inherited Susceptibility to Cancer) Center at Rush University Medical Center, said more high-risk women might decide to have prophylactic mastectomies—surgical removal of both breasts—if the study results are confirmed. Most patients don’t choose that option now.

Maria Pradd, 38, is one of Kaklamani’s patients. A former sales training and development manager, Pradd was diagnosed with breast cancer in 2004. Only after having a lump removed and undergoing treatment did she discover she had a BRCA1 mutation.

Pradd said she will consider having her ovaries removed after she has children, to reduce her risk of getting both ovarian and breast cancer. But she is not interested in prophylactic mastectomy.

She’s philosophical about risk, and about how far she’s willing to go to reduce it. “I know my chances of having another cancer are greater now,” said Pradd. “But I could also walk across the street and get hit by a bus.”

She said she would like to add an annual MRI to her screening regimen, but her insurance carrier so far has balked. A breast MRI can cost between $1,000 and $3,000. Mammograms are about a tenth of that.

The odds of having one of the known breast cancer genes is about 1 in 800 in the general population, said Usha. But it can be much higher in certain ethnic groups, such as the 1 in 40 figure for Ashkenazi Jews, or Jews of Eastern European origin.

One Response to “That which doesn’t kill us may, in fact, be a valuable diagnostic tool”

  1. Dee-Dee Says:
    It seems the more we learn, the more confusing it all becomes…..
 Posted by at 3:52 am
Jun 212006
I’ve been trying to figure out a way to compose this post for a bit now.

I have some time on my hands and a mid-term tomorrow that I should be studying for so what better time than now to attempt to fire something off to explain a bunch of highly personal crap from inside my toasted head.

It’s hard to figure out where to start but here goes…

A few weeks ago I was talking to my therapist gal at the Cancer Agency and she asked me if I worry about having a recurrence.
I said,”Well, all the numbers come back as good news, and everything has gone as well as anyone could hope for inside the parameters of a nasty situation, and I am certainly aware of other women who have much, much harder struggles with this disease. So, I guess I feel pretty lucky, on one hand.”

And I thought about it for a minute.
And we talked about some tangent for a few minutes.

And then I said, “Actually, I am crabby and angry and tired. Really, really tired. I am all those things because I am afraid, always afraid, of a recurrence. I am tired of being scared but I don’t know when the moment comes when I get to stop being scared.”

I live with fear buzzing in my ears like powerlines in the rain.

I don’t have a solution for this.
I told therapist gal all this and she said I should tell people.
I said that I thought people had done a great deal for me when I was actively sick and that, in their own right, they were tired.
She said that she thought people would want to know.
I said I didn’t know how to talk about that stuff.
She said that when people ask how I am, I should tell them at least some glimmer of what is going on.
She said that about 5 weeks ago and I haven’t succeeded even once to roll that strange, personal, and spectacularly depressing factor into a conversation.

Since I only do things big or not at all, I decided to abuse the internet and just blast my information out on a global level.

So there you have it.
My head is just a scrambly mess and I have no idea how to untangle it, but I do sort of believe that telling people that I am completely off my nut is probably a good next step.

And you know… it’s all so completely weird.
At the end of the day, we are all going to die. I just find it weird to be in a spot where folks discuss that statistical probability of that happening sometime that I consider way too soon and also the complete weirdness of people figuring that they have a fairly good idea what I might die from.
I would argue that I could be hit by a bus instead, but I already did that, just a year ago, so where’s the humour in that?

Cancerbaby’s death really crystalized all this for me.
I mean, on top of the anger and the grief I have that someone so sharp and so young and so brilliantly entertaining could have her circumstances go so badly, so quickly, well, actually all of it just ends up being a lot like being bitten in the ass by a pitbull. There is no guarantee for any of us… really, *any* of us. And, once you finish chemo, you try to put a whole lot of distance between yourself and your (previous) illness and you put a lot of emotional energy into doing whatever sort of mental gymnastics work to convince you that you are dodging the bullet from now on.

I have been lucky and my numbers are good.
I know women who haven’t been so lucky.
Some of them have just had a long, hard, constant battle.
Some have died.
Compared to them, I feel like it is wrong to admit that I am scared or that I am angry (read – scared).
And actually, if we are going to tell a whole lotta truth here tonight when we should be studying, I feel pretty lonely in this, sometimes.
I suspect people think I am fine, or as fine as any of us are.

So, this is me, reaching out, as gracefully as I can.

I know I have been grumpy and stand-off-ish.
What I need people in my life to understand is that I have been lonely and scared to death.
I need you to understand that even if my eyebrows grew back, I am still reeling, trying to make sense of what happened to me and why, and what happened to that entire year of my life and how can I ever catch up.

I am trying, little by little, to just look at the stuff I am afraid of.
If folks who know me could offer some fun and distraction along the way, or maybe even ask how it is all going if you are interested, that would be cool.
And, as always, it’s hard for me to arrange time, between work and school and trying to have a relationship even when my head is mangled, and trying to just roll out of bed each day and put one foot in front of the other cuz one day things will shift and it will be easier.

So, you folks in my life, no matter what you may think, I don’t think you should be a stranger.
Especially since no one is stranger than me.

9 Responses to “Cape Fear”

  1. tara Says:
    i might be stranger than you, but i would ask for more butter for the popcorn if i wanted it. ya know?

    it was great to see you and watch the hiccuping HP. i had no idea this stuff was going on in your bleached head. please feel free to unload some of this stuff or just rant. otherwise i’ll have to keep reading your blog to know what’s up with you.

  2. jawnbc Says:
    this is a very good start. But there is also some insulation in these one-way modes of communication. So let your fingers do the walking. Operators are standing by (though we’re going campin Fr-Sun.

    Love you, knew all this, so there.


  3. Vicki Says:
    From a keyboard friend+ovca sister… sorry had slight interuption, my cat LOVES to eat my hats…. There always seems to be the feeling of waiting for the other shoe to drop. Although as I get more involved in my life – my new life because the old normal life is gone – I sometimes forget that I have this cancer… I can go minutes-hours-sometimes days without really thinking about it. I think as long as the numbers are good that’s where our life is time without thinking about it… and getting our lives to its new normal.
    Hope that makes sense… I appreciate your brashness and forthright attitude toward your cancer that you write in your blog, but there are always feelings behind it. Take care and go find your new normal life.
  4. Jennysue Says:
    All I have to say is that you just wrote out all of the word that go through my head each day!!! I also live in constant fear of recurrence. Cancerbaby’s death threw me for serious breakdown, because of the reality it represents. I must say though, I have (lately) been trying to voice my fears to more people, because it is very hard to walk around with it all by yourself. So I would suggest giving it a try and if not, keep writing about it! I am with you my friend.,
  5. Liz (suburban girl) Says:
    Spike, that “powerlines buzzing in the rain” is a perfect description of the recurrence anxiety thing. Over the last 11 months the powerlines have kept buzzing in my head but they seem farther and farther away. Ocassionally they get overwhelming once again.
    You are not alone. I tell most people I’m in remission and grateful to be here. Makes me feel good to be honest but not go into great detail.
    The old adage prepare for the worst(within reason) and hope for the best is working for me.
    Being aware of the razor’s edge has its advantages. I don’t waste my time worrying (as much) about what other people think anymore. When someone asked my daughter how she liked 1st grade and she said,”It was H-E-L-L compared to kindergarten.” I laughed instead of ducking under the table.
    Take comfort that you have people who care about you. Please know that I do and think of you often.
    Love, suburban girl
  6. Liz (suburban girl) Says:
    P.S. The first months after chemo, I remember having emotional outbursts. My husband and I argued, I yelled at the children, etc. A nurse told me that that was a response to holding everything in while going through chemo. Lexapro and time helped.
    You mentioned a while back how you were looking forward to camping. I appreciate nature so much more now and being outside, gardening or hiking, comforts me and allows me to savor the moment.
    How are you doing?
  7. Ladee Says:
    Hey, Spike … Just a quick note to let you know that you’ve got folks reading this … and following along with your life. It’s not like I’ve got a lot to offer … no words of comfort, nothing sage-ly to pass along. I wish. Except that maybe … whenever I catch up with what’s going on for you, I’m sending energy along your way. I choose to believe it counts for something. Like your courage. Rage on, for as long as it serves you …..
  8. Fi Says:

    Being an out of town “in-law” for such a long time and now having been closer, I know we haven’t spent all that much time together or talking but I figured that some of the things you just spoke of, had to be in there, how could you not feel all those emotions.

    I am not good at putting things into the written word, but here goes.

    Please know I am here if you ever want to come visit and talk, or if there is anything I can do.


  9. Femmeflame Says:
    Hey Spike,

    You posted for friends in your life to check in. Well. I am not one of them, I am a stranger to you *grin* but I am also your neighbour – flying past your house everyday almost… sometimes more than the requisite home-work-and-home-again run for almost 3 years aware that you were going through this challenge.

    I was at the folk fest and standing watching the show Ivan had put together I saw a couple I knew had moved out of town and we were talking then an old creativewriting school buddy of mine who had just performed came to say hi to them/me and an address book was opened and there was your blog url posted.

    So you passed through my mind.

    Not that is the first time. My mom’s lymphoma came to light last year and returned this April so we are on to more chemo with less options than I would like. devastating to the pocket some would say – We say most expensive to the spirit.

    So I want you to know that I read your blog throughout last year. every now and then… and having plunged into the deeper than last year’s twilight world with no signposts, no bright lights, no all clears and nothing but wondering if I should read Dante and update his version of the seven hells….well. I think … if I could be so bold – something called surviving not only your body going awry but also someone else who was working on survivin’ too and seeing em not make….. it is a helluva thing.

    So while my mom climbs up into her mental hammock of peace and looks down her body and procedures goings on. I hang on and strip the pleasantries often exchanged without much truth to it – down to the facts without frightening the folks used to me being the supportive, witty one.

    Sometimes sapping one’s energy – staying in the fiesty, funny obnoxiously witty mode – surprised how it bounced back when I mention the dark side- which you just did. Some people run. Some are on stun and then some of us pipe up. No advice here – I’z jus’ sayin’ for me…I think I hear you
    and to he… er I mean to France with those who can’t deal with it! (that’s me chanelling my grand aunt lucille)

    I want to let you know that I’v been sending good vibes your way while getting through running past the trees around the track, past the hedge ’round your house, dodging little kids, smoking teens, baby strollers, oldladiessteamrollin’ – to catch that damn 135….even though I don’t think you and I have ever exchanged a word that I can remember.

    I’ll just say it takes more courage to tell the truth in these times- so as they would say where I am from: Come with it!

    See you meebee at BofP….


 Posted by at 4:02 am
Jun 192006

So, here I am, a day late and running out the door for work, but I wanted to make a timely, if a tad late, post about Father’s Day.

I am not really someone who is dazzled by the new age man, the metrosexual male or any of that other re-wrapped crap.

But I do work with quite a few young men who are fathers. And one of the things I have learned from these men and seen in these men is that they adore their children, above all other things. In fact, they often speak more glowingly of their children than they do of their partners.

I grew up surrounded by sailors, who were often quite drunk, when they were around at all.

I have absolutely no clue whether my dad, and my friends’ dads, adored us this same way and just couldn’t say it or express it or find the time to spend with us.

And I confess, it never, ever crossed my mind that my dad would have worshipped me this way. And, because we have some shocking similarities, I was always my dad’s favorite, but I never thought that he stood in the engine room of whatever destroyer he was posted to at any given moment and bragged how my ball team won the game or what books I was reading or what delightful things I said recently.

I really have no idea whether these boys I work with are just part of a new, snaggy generation or if my dad and his peers did all the same stuff and I just never knew.

I just really, really like that those fellas adore their kids so very much.

It’s freakin’ lovely and it gives me some wee measure of hope for the future.

 Posted by at 3:49 am