Something Evil This Way Comes

This just in from the Scientific American

Breast cancer gene carriers need dual screening

By Anthony J. Brown, MD

NEW YORK (Reuters Health) - Among women with BRCA1 gene mutations, which are known to increase the risk of breast cancer, annual screening with both mammography and MRI is associated with better survival when compared with screening with either method alone, new research indicates.

The trade-offs, however, are a high rate of false-positive results, which lead to unnecessary biopsies.

The findings were based on data from 22 studies that included 8,139 women who carried the BRCA1 gene. In addition, the researchers developed a prediction model based on data from the Surveillance Epidemiology and End Results (SEER) Program (1975-1980) and the Breast Cancer Surveillance Consortium.

The results indicated that annual combined screening with mammography plus MRI increased the average life expectancy by 1.38 years compared with follow-up only without screening tests (clinical surveillance). The false-positive rate was 84.0 percent.

“For women who carry BRCA1 gene mutations, adding annual MRI to annual mammography has a clear benefit in terms of projected life expectancy and breast cancer mortality reduction,” lead author Dr. Janie M. Lee told Reuters Health. “Whether the trade-offs related to MRI screening are acceptable to women at increased risk of developing breast cancer is still being investigated.”

In the general population, the lifetime risk of breast cancer for women is 13 percent. In BRCA1 mutation carriers, by contrast, this risk can be as high as 80 percent. Strategies to reduce this high risk have included preventative mastectomy, removal of the ovaries (to lower levels of estrogen which can encourage breast cancer growth), preventive chemotherapy, and more frequent office visits, according to the report in the journal Radiology.

Younger women, especially those of childbearing age, are often reluctant to undergo preventative mastectomy, the investigators point out. Preventative chemotherapy might be a suitable choice, but unfortunately no studies to date have shown it to reduce breast cancer mortality. That leaves increased surveillance.

According to the report, mammography is not nearly as sensitive at detecting breast cancers in BRCA1 mutation carriers as it is in the general population. Previous research has shown that MRI can achieve higher sensitivity than mammography, but whether this translates into reduced breast cancer mortality is unclear.

Due to the long length of follow-up and the large number of patients required, the authors note that it is unlikely that any trial will ever investigate whether MRI screening can reduce breast cancer mortality. This prompted Lee, from Massachusetts General Hospital in Boston, and colleagues to conduct the current decision analysis.

The average life expectancy was 71.15 years, the report indicates, and with clinical surveillance alone, the average diameter of breast cancers at diagnosis was 2.6 centimeters. Using annual screening with mammography, MRI, or both, the average tumor diameter at diagnosis fell to 1.9, 1.3, and 1.1 centimeters, respectively.

Compared with clinical surveillance, all three imaging-based screening strategies increased life expectancy and reduced mortality from breast cancer. Again, the most pronounced benefit was with mammography plus MRI.

In addition to the high false-positive rate seen with mammography plus MRI screening, nearly one in three women underwent one or more biopsies for what turned out to be benign disease. The false-positive rates and negative biopsy results with the other screening strategies were also increased, but not as high as that seen with the combined approach.

More research is required to find the optimal sequence and frequency for screening tests for breast cancer, and to “minimize the potentially negative effects on women’s health-related quality of life when screening with increased intensity is pursued,” Lee noted.

She added that her team is “currently working to extend our model of breast cancer natural history and screening in BRCA1 gene mutation carriers to women who carry BRCA2 mutations, and women whose lifetime risk of breast cancer exceeds 20 percent — these women are defined by the American Cancer Society as being at ‘high-risk’ of developing breast cancer.”

SOURCE: Radiology, March 2008.

http://www.sciam.com/article.cfm?id=breast-cancer-gene-carrie

Hope for a reliable, early detection test

Phase III evaluations have begun on a blood test developed by
researchers out of the Yale School of Medicine. So far the test has
detected newly diagnosed ovarian cancer with 99.4 percent accuracy by
using six protein biomarkers. “We hope this test will become the
standard of care for women having routine examinations,” says lead
author Gil Mor, M.D., associate professor at the department of
Obstetrics, Gynecology and Reproductive Sciences at Yale.

The test requires further study and extended follow-up with more
patients, however the news represents an encouraging development in the
search for a reliable, early detection test for ovarian cancer. Results
from the phase II clinical trials were published in the February 15
issue of the journal Clinical Cancer Research.

I’m not really sure I can nail down a starting point for this post. But I just received an e-mail, reminding me that a year ago one of my OVCA buddies died. She was one of those online support comrades, another one I never met in real life and another one who died too soon. This online support thing is a bit strange to me, because the wellbeing of a bunch of people I have never met means so much to me. It’s a good thing, it just continues to surprise me with its intensity.

There has been a lot of death and grief in my life over the last couple of years and there is not much I can do about those circumstances except try to maintain some sort of point of view that allows me to squeeze out some smidgen of something positive. Often, I fail miserably at this goal. But one thing that is important to me is that we remember the people we have lost.
So, today, I thought I should do something to remember Heather MacAllister. This is a snippet from what I wrote a year ago.

“Heather was a Fat/Social Justice Activist and the founder of the Fat Bottom Revue, a burlesque troupe full of really hot fat grrrls.

The thing Heather wanted to say, that message she wanted to leave us with, is that we should love our bodies, just like they are and appreciate all they do for us, and that we should love each other.”

How about we all try that? How about that for a post-Valentine’s Day idea?

So, in anticipation of Valentine’s Day, how about we all do like she says and try to, you know, love one another or at least be more kind to each other. What could it hurt?

It certainly has been a wild ride these last few years and I find myself becoming reluctant to talk about any of the details of my ever so melodramatic life because it all seems so very over the top. It’s been hard. I guess I am just paying in advance for the salad days that are just over my horizon. When my address changes to “General Delivery, Easy Street, Vangroover, BC Canada”
I’d like to believe that.

Anyway, not to come out and sucker punch folks now that I have you thinking about other stuff but my dad died last week.
I haven’t really been talking about it because I can’t really think of anything to say about it. It’s all sort of surreal, and then that sounds like a stupid thing to think since the man has been dreadfully ill for the last couple of years. I sort of think that since my mom died, he didn’t think there was so much left to fight for. I dunno. I do tend to believe that he finally gave himself permission to let go, but I wasn’t there and I don’t really know what happened inside his head.

Anyway, he’s gone.
And she’s gone.
I confess, I don’t harbour images of a verdant and pastoral place where they are goofing around now, but I’d like to. If he threw in the towel because the woman he loved his whole life was gone, then I hope that somehow, they get to be 18 and together again.

Rodger Dodger
over and out.

Since I am going on and on and on about my mom these days….

My mom was under 5 feet tall.
My mom never weighed more than 100 pounds in her life. Like, really. Even if she was on anabolic steroids, she wouldn’t have touched 100 pounds. (Though I shudder to think of her with a neck as big as my thigh.)

When I was a teenager, Randy Newman had an actual hit on the AM airwaves with his song “Short People”.
My mom thought that was one of the most brilliant pieces of satire, a well aimed poke at our inclination to persecute the “other”, all packaged up in hatred towards short people.
It baffled me at the time that she wasn’t offended, she thought it was a great social critique.

My mom rocked.

“They got little baby legs that stand so low
You got to pick them up just to say hello
Well I don’t want no short people
Don’t want no short people
Don’t want no short people
round here.”

It’s just on my mind tonight.

Yesterday was, or depending on your perspective, would have been my mom’s birthday. One of the strange things that comes up around my mom’s death is which tense to use in which situation. Like, was yesterday her birthday? Do dead people have birthdays? I really don’t know.

It’s also strange because my parents’ house is being put on the market. Now, I stumble when I say “my parents’ house” because it seems to me I really should have erased my mother from that equation and updated it to “my father’s house”. Except the ironic part is, my father hasn’t even been in that house since my mom died. And on that technicality, I feel I am allowed to continue referring to it as my parents’ house.

It’s also strange because my mother spent a lot of time telling us, her three kids, which bits of Harris treasure we would get or inherit when the time came. Well, the time has come. What is it they say about the best laid plans?

We ain’t no kin to the Rockefellers but when my parents bought something, which wasn’t that often, they bought good stuff. We had a very nice dining room suite that was promised to my brother. As a kid, it always annoyed me that he got the most cherished chunk of the inheritance pool. Now it’s time to move all that stuff from my parents’ home, and my brother has no room for that dining room suite. In a different life, I would love to have it, but simply don’t have the space and I shudder to think what my cats would do to it. My sister also is suffering from space restrictions.

It’s just a very strange feeling to have been told for your whole life that one day you will own this thing. And the thing has been assigned value by the very act of someone wanting to pass it along; of making a point of passing it along, because it mattered to them. And now there is nowhere for it to go, except maybe to an auction house. It’s caused me to look around my place and imagine what bits of stuff that I have that might get passed on to someone else, and what parts will end up in the landfill cuz most of us have very little room for more stuff.

So, my parents’ home has to be emptied out so someone else can move into it. And while I have never lived in that house, I still feel a strange loss. It’s not the loss of “my home”, per se. Only twice in my life have I felt like the house I lived in was “my home” and this house doesn’t qualify. But there is the loss of some sort of safety net. I suppose it’s another step in finalizing the growing up thing. There is absolutely no safety net anymore. That’s okay, it’s just a new feeling.
I try to imagine what it will be like, in the future, to drive along that highway and *not* take the exit that leads to my parents’ home, to just keep on driving till I land in a motel room further on up the road.

It also means facing the fact that lots of things that were important to my mom have no place to go and so they will probably go to the Goodwill or to the dump. That process, the throwing away of something she valued and in many cases made by hand, that’s the part that almost kills me.

Sometime in the next month or so, between work and school, I will go and help my siblings empty out my parents’ home. And I feel an astounding level of dread whenever I think about that, for quite a few reasons. A big one is that emptying out the house, the house I don’t care about, will bring a whole new level of finality to the situation. It feels a bit like closing a door on my parents.

I’m still working through it all.

So, a friend of mine died of ovarian cancer on Friday morning. Unlike other folks who I sorta know who have died of OVCA in the last couple of years, she is someone I knew in the flesh and knew before her diagnosis.

Marianna got diagnosed with stage 4 ovarian cancer about a year ago. I remember pretty clearly because I was having a crap-tastic weekend. I had just been told my dad has lung cancer, and I had a major appointment of my own at the High Risk Clinic, and in the midst of all that, a couple of friends took me out for dinner, to offer some morbid support. While we were having burritos, one of my friends’ cell phone rang, saying that Marianna was in the emergency department, with her girlfriend. On the way back from dinner, we stopped in to check on Marianna.

She said that the surgeons had drained a litre and a half of fluid from her lungs. She said they were talking about the possibility that it was cancer but, as she said, she wasn’t willing to believe that right off the bat.
I remember thinking, “You hold on to that thought as long as you can, sister.”

Marianna did chemo right up till about three weeks ago.
Along the way, people I know would say that she was dying.
I, as a cancer survivor, have a particular issue with regular folks deciding how much time a cancer patient has left on the clock. But suffice to say that Marianna has been proving folks wrong for at least the last six months.

And on Friday, she died.

I saw her on Monday night. She had been unconscious and, out of the blue, came to on Monday and spent the day on her porch, enjoying herself. By the time I got there, she had slipped back into sleep. But I sat there with her. It was nice. The house was warm like an orchid hothouse, but her bedroom window was open and it was a summer rain happening outside and a nice breeze and the sound of rain falling, and I was happy for her that she got to be in her home.

I had planned to go back on Thursday, but I got the mother of all colds and couldn’t go with all my germs.
And I knew that might mean I just wouldn’t see her again before she died. But then again, I thought, people have been burying Marianna for the last 6 months.

On Friday morning, a friend called to tell me she had died earlier that morning. I hope it was as peaceful as can be.

And now, my head is a jumble of emotions, few of which make sense in any linear fashion.

And tomorrow, I will go to a fund raising walk for Ovarian Cancer Canada.
Last year, after the walk, everyone on the team went to visit Marianna at the Cancer Agency, because she was still in the hospital.
Her fight was intense, and, while it seems to have been so much longer, began and ended in a year.

So, R.I.P., Marianna.

You were so much tougher than me.

It’s the last chance Texaco here, people. Tomorrow me and my peeps will be spending the morning in the sun, walking in the park and doing our bit to fundraise for Ovarian Cancer Canada. The timing is especially significant because we lost our friend, Marianna, yesterday morning, to ovarian cancer. She got diagnosed a year ago and she fought and fought and fought. I am in awe of what she went through. And so, tomorrow, we will go do our part.

If you’d like to help, you could sponsor me or anyone on the team.

Here’s the link for that gesture of random kindness:

That’s all for now. My head is a bit scrambly, and I’ll post something more sometime soon.

So, it’s been a very carcinogenic time lately.

How to explain.

My dad was re-admitted to the hospital for lung cancer/COPD/pneumonia.
That situation remains up in the air.

A friend, who was diagnosed with OVCA last summer, has been given a bed at the local cancer agency while she argues with them about whether or not she is palliative. It is her ferocious intent that she will go home and visit with her cats and work on her garden.
It strikes me that there are people who have, understandably I guess, taken that diagnosis and decided she is checking out, in spite of her kicking and refusal to just go along. I think that’s what people who aren’t sick need to do for themselves; start shifting their connections and, in some ways, pulling up their drawbridges.
I understand, and still, as someone who had plenty of people interact with me in a way that implied I had one foot in the grave, I will always back the long shot, cuz my friends, I am the long shot my own self.

So, that’s happening.
It’s weird on so many levels.
It’s a bit like staring at a fork in the road and seeing how someone else got the much rockier ride.
And do I feel any guilt about that?
More than you will ever know.

And then, last week, as all these things were shaking down, I made the ridiculous mistake of going through my “Copies to Self” file in my e-mail. I confess, I hadn’t gone through that file in several years. And in it, I found so many e-mails I had sent to women who have since died of ovarian cancer.
I’m counting four just off the top of my pointed little head.
Which leads me to wonder why I got to dodge that bullet and these other marvelous women took the hit.

And that’s not to say that OVCA didn’t completely destroy my former life.
It destroyed the most important relationship I have ever been in.
It messed with my work and my career aspirations.
It did strange things to my relationships with my friends.
And still, amid the fucking rubble that is my current life, I am the lucky one. Or one of them.

I’ve been really angry for the last few years about that which I have lost because of cancer. And unless you are a cancer survivor of some stripe, save yourself the keystrokes before you tell me something all sage-like, cuz you don’t understand cuz you can’t understand until you’ve done it.
Don’t mean to offend, just stating some facts.

Anyway… I have been angry. Cuz I was terrified.

And here is an enormous confession.

I remain terrified. Hence the crankiness.
Cuz whether you get it or not and whether you have already exhaled or not, for me… they still send me to a place at the cancer agency called the High Risk Clinic.
The folks at the cancer agency are only willing to say, “you are in the group of people which we view most optimistically”, and that’s when I live in a statistic of having a 20 - 30% chance of being around in 2011.
So, hey… I am one of the lucky ones.
And inside of all that, how weird is it to say that. But in spite of all the losses, I still get to wake up too early and go to work and curse that, and have my heart go in all its crazy directions, and if there are folks crying for me, it’s for things much less severe than because I left this mortal plain too soon.

So, I guess this makes me stronger.

It sure as hell has made me crazier.
And it has made me angrier. But I feel that I am turning a corner.
If I am gonna be here, then it’s time to get going and indulging, and letting go of that which torments me, to whatever extent that is possible.
But I feel so much less interested in being tormented by imbeciles and their presence in my peripheral vision.

Wish me luck.

And wish whatever you wish/hope for for the women still duking it out with this damned disease.

Rodger Dodger
over and out

Well, not *me*, exactly. More like the Ovarian Cancer Canada folks.

See, me and some friends will go walk around the park and people will give us some money for that, because that’s how this works. And then the OCC folks will take that money and do researchy things and that will be good and, one hopes, someday soon, we can put all this nastiness behind us. And somewhere along the line, if you give some, unknown to me, amount of money, you get to tell the government to take it a bit easier on your income tax.
Sweet deal, no?

Spike
queering up cancer since 2004

I have been thinking about what my friend wrote here and one of the details that struck me was her experience of knowing she had cancer and having to wait for several weeks for her surgery.
And I realized that this was so completely different than my experience.

In retrospect, maybe everyone around me who was associated with the medical world was patting me on the head and playing alcoholic family, but even as they had me count backwards from 100, I never believed I had cancer.

Here’s what I did know.

I knew I had something weird and palpable right beside my right hip bone and I knew it was becoming a hindrance to my sex life, hence my eventual willingness to have it checked out. (This mass, gentle reader, would turn out to be a benign tumour, living in the middle of a wasteland of ovarian cancer. Can you say “Irony saved my life”? I know I can.)

I know I went for an ultrasound and the technician actually couldn’t capture an image of my ovaries, because of the moss-like spread of the OVCA, but I didn’t completely grok what the problem was at that point, thinking instead that it was my great benign tumour of hair and teeth and other disgusting anatomical strays.

I recall being somewhat taken aback when, after meeting with my surgeon prior to my surgery, he sent me for bloodwork across the street at the cancer agency. That was the first time I ever walked in the building and I was ready to have a full on melt down and explain to anyone and everyone why I really didn’t belong in that building. I consoled myself with the (idiotic) belief that this was the closest lab to the hospital and that’s why he sent me there (conveniently overlooking the full scale lab right across the street).

I recall my then gf telling me she was worried and me telling her that it would all be okay, and honestly believing that, explaining that “things like that don’t happen to me.”

So, by the time anyone told me I had cancer, the bulk of it had already been cut out of me and was on its way to a tumour bank where it will live with other tumours and scientists will take it off the shelf and figure out a solution for all this anguish.

People with cancer often speak of feeling like their body betrayed them and there were people who asked me if that was my experience. In fact, I felt like I had betrayed my body; like I hadn’t done enough to look after my body in a toxic fast-food world. I have never felt like my body let me down.

In the long run, I made my body sit there and absorb terrible poisons so we could just hope to carry on. And my body, against all odds, did what I hoped it would do.

That’s just a strange detail that has been on my mind these last few days.

I went to visit my pal at the hospital. It was handy because I had an appointment with my oncologist, as weird and ironic luck would have it. I had lots of old ghosts walking with me between the hospital and the cancer agency. And it is completely overwhelming how many things have happened in my life since the first time I wandered from the hospital to the cancer agency for bloodwork. One really significant detail was seeing my reflection in a window and noticing that I was walking alone.
It’s not my ideal, but it’s the best case scenario these days.

And, for those who follow these details at home, things are cool in cancer land for now.

I woke up this morning to an e-mail from a friend who is having a double mastectomy because she was recently diagnosed with breast cancer. She is having her surgery today.
It just sucks.

If you’d like to read about what’s up with Mary, you can go:

here

More later.

You know, I really like my bosses and my non-bosses who exist in a parallel universe where they have to (apparent) authority over me, but tonight, I could take every one of them over my knee and spank them till my hand was raw.

I’m just sayin’.

And… that’s *all* I’m sayin’.

I have been so out of it for the last while that, with some degree of surprise, I realize that spring has pretty much uncoiled and sprung and is patiently waiting for the tap on the shoulder from summer, at which point spring will wander elsewhere until we need it again next year. I’m not sure where it goes. Maybe it slides into a big Rubbermaid container and gets pushed under the bed. Who knows?

I moved into my place on March 1st and while I knew I had a stunning view, it’s these days when the sun shines for a long time that really drives that point home. My view is excellent during the day and also at night, when I can see the lights on the bridge off in the distance and the ships in the harbour down below me. I have had days when I drag my sorry ass home from work, just run down and exhausted, and walked in the door and had the view both overwhelm and cheer me.

The cats have a tiny balcony and they lay out there and come in all warm and half-baked from the sunshine.
They lay around in the enormous pools of sunlight that come in. It just delights me every time I see them stretched out in the sun. They seem content here, and I am happy about that.

I have been hitting the gym a lot lately, finally getting back in that groove which I fell out of when I moved. Getting the routine established has been harder this time than other returns, but I think I have it down now. I have also been riding my mountain bike a lot lately. I realized about a month ago that it takes me exactly the same amount of time to drive my truck to work, park and then walk the 4 blocks to my work site as it does to get on my bike and blow all those pedestrians off the sidewalk… and when the cost of gas went up to $1.20 a litre, well, the stupidity of driving my truck was just too clear, even to me.

And I have been re-reading the Harry Potter books, in anticipation of the final book’s release in a few weeks. It amazes me how she created a series where some small detail in the second book will come back into focus in the 6th book. It also amazes me how many of the details I have forgotten over the last couple of years but I blame the chemo for that. I really, really like the HP series and think J,K.Rowling has done an amazing thing for literacy. And I will be both happy and sad when the final book is released, because I will have it, but then it will be over. But I think old JK probably deserves some quiet time with her family and loved ones. It may be a long time till she can have that, but wrapping up the HP series will probably provide some light at the end of the tunnel.

That’s it from me. I am feeling pretty optimistic about the summer and ways that I can spend a whole lot of time away from here and relaxing elsewhere. Money is always a consideration, but I have a few things in mind and I am hoping that I spend the summer making special guest appearances at work rather than being a regularly scheduled guest.

And on a somewhat sad note, I got an e-mail from the folks at Pandora.com saying that they were suspending service to clients who were not in the USA. For those who don’t know, Pandora was a music genome project and it was a brilliant way to turn yourself on to new music. As a user, you would create your own ’stations’ based on an artist or album that you liked and Pandora would search its files and play music that other users had rated as being similar. So, I had created an “Etta James” station and got turned on to other women blues singers. Same for creating a “Leo Kottke” station, or even… a “Metallica” station. I don’t really understand why users have to be in the USA, but apparently it had something to do with copyright issues. But if you are south of the 49th, you should really make the most of this. And me, I am just hoping the resolve whatever deets need to be resolved because it was such a great thing. Just pick an artist that your are in the mood for, plunk the name in, and wander around your place listening to great music.
They have to bring it back!
Fingers crossed.

Rodger Dodger
over and out.

So, someone sent me a blog comment which basically amounted to them telling me that I should work on a more prolific blog presence. That posting once a month was, perhaps, less than ideal.
Having given it some thought, I think she is right.

How to catch you up on the last month…
A couple of weeks ago, I went to Seattle for an ex-gf’s 60th birthday. At first I was horrified because I thought this meant that I was old, but what I realized is that it really means she is a chicken hawk.
Being in Seattle was good on a lot of levels. Part of what was good was seeing friends who have been in the same relationships for the last twenty years and seeing how they interact. It’s not perfect and sometimes they bicker, but at the end of the day, it’s pretty sweet.
I confess that I try to learn as I go when it comes to those big time relationships. I kinda got knocked back to kindergarten, but that’s okay. I can hone my humility some. It’s still really interesting to me to see how people interact when they have been together for a long, long time. I think it’s easy to get in an absent-minded groove and to be upset about whatever grumbly and annoying things are messing with your utopian vision today. It’s hard to remember to be kind and sweet to each other.
Thankfully, I am no longer put to that test, but for those of you in relationships, I think you should try to remember to be sweet to your sweetie. How else will they know that you care if you don’t extend yourself?

On other fronts, this week has been a week of coming out all over again.
I don’t know how to explain it and this thing has certainly consumed a lot of my mental and emotional energy and… if it needs to be said publicly then let me be the one to do it but after a long haul with sobriety, I have decided that I want to see if I can be just like a normal person.
Like I said, I don’t know how to explain it nor do I know how much I need to explain to the general public.
The details that are available for the general public are that I am awfully tired of being the person who is always different than everyone else in the group.
It’s also true that I have felt more and more isolated with the whole sobriety thing over the last few years, so that ultimately,crossing that line seemed like a way to re-connect with people.
It’s an experiment, and if I screw up, I know where to go to drink bad coffee and be hugged non-consentually. But in the short term, this is where I am at.

S’cool?