WE AREN'T DOING THAT DAMNED WELL

Newfoundland, 2001

 

Okay, enough of feeling good.  My great granddaughter Evelyn is three days old, healthy, cute as a button, and never cries.  She is destined to make us all very proud.  All that goes without saying.  The thing is, though:  will she cure ovarian cancer?  I sure hope so, because we aren’t doing very damned well at the moment. 

I have discovered an interesting NCI web site that gives cancer statistics of all sorts and flavors.  If I think of it I will put it at the end of this blurb.  I spent much of yesterday playing with it.  Here is what I found.

First of all, remember that somewhere around 1972 we (the Feds) declared a “War on Cancer”, modeled on the Manhattan project that gave us the atomic bomb in less than five years.  The idea was to direct the might of American science and technology, lubricated by boxcar-loads of money, at the total elimination of cancer.  We all know that failed.  With regard to ovarian cancer, let me tell you how badly it failed.

In 1975, 10 of every 100,000 women in the United States died of ovarian cancer.  In 2010, after nobody knows how much effort and expense, that number was reduced to – 8.5!

We have done slightly better with regard to 5-year survival statistics.  In 1975, 33% of women diagnosed with ovarian cancer lived five years.  In 2010, it was 44%.  Almost certainly that improvement can be credited preponderantly to earlier diagnosis.  Early detection is important, that’s for sure. 

Here is an interesting statistic: black women are significantly less likely to die of ovarian cancer than  white women.  Genetics?  Life style?  Who knows?

The War on Cancer has done somewhat better  by  some other cancers.  For instance, in 1975 deaths from colorectal cancer in the United States were 28/100,000.  By 2010 that had been reduced by nearly half, to 15/100,000.  Several other cancers (e.g., prostate) show similar improvement, but others (e.g., pancreatic) do not.

I don’t know about you, but I find all this depressing , discouraging and, in a way, a bit infuriating.  It almost seems like we need a radical paradigm shift.  It’s as if for the last  35 years we have been attempting to produce a real fast buggy by fiddling with the wheel bearings  and  the horse’s harness.  What we need to do is to invent the automobile.

http://seer.cancer.gov/faststats/selections.php? 

 

 



THREE GENERATIONS REMOVED

Evelyn

In Heaven, Linda is squealing with delight!

 

 

Please meet Evelyn Kelly, all of 12 hours old.  All is well in Anchorage, I am told.  Linda would be in ecstasy about now, and already diagraming Evelyn’s baby quilt.  It is a rotten piece of luck that she isn’t here at this moment.  Maybe, wherever she is, she knows. 

Evelyn is 16 ½ % me.  Let’s hope she got the genes that control brains, not beauty or athletic ability.



ROCA, foul weather, and dogs

Linda and Ramses the Great

 His chief wife was named Nefertari.

 Of her he wrote, "She for whom the sun duth rise"

 I know how he felt.

 

Well, after an abnormally warm and pleasant summer the  Bellingham we all know and love has reasserted itself today.  I awakened  to hard rain, followed by a wind that blew all my plastic chairs into a heap on the north side of the deck, banged things around so loudly that my cats hid under the couch, and threatened to take the door off my greenhouse.  Thank God global warming hasn’t made our climate too comfortable; otherwise masses of people would move here and I would have to move to Montana.

With plenty of excuse to stay inside, I set myself to figuring out what ROCA means.  You may remember ROCA, which stands for Risk of Ovarian Cancer Algorithm.  I mentioned it once or twice before, as – in a sense – a rival to the research being done by the Fred Hutch group I try to help.  In common with our trial, the ROCA trial involves following the changes of the concentration of the antigen CA 125 in the blood of individual women, and basing decisions on whether or not to send them for TVS (trans-vaginal ultrasound) on how the concentration changes.  That’s how our group does it too, only, instead of using ROCA, we use our own home-cooked statistic, the “parametric empirical Bayesian longitudinal algorithm.”  I have also written of this puzzling object before, largely because its name is  funny.  I think I know what  PEB means – the B stands for Bayes, a statistician of a bygone century, who developed a method to re-compute the probability of something happening as additional evidence pile up.   Thus, if a woman’s CA 125 score suddenly increases, our PEB will tell us what that means, and whether or not to send her to ultrasound.

Well, ROCA must work something like that.  The group working with it says that it has high “sensitivity” – it does a good job of catching the condition in women who have OVCA, and gives few false positives.  Another way of saying more or less the same thing is that it has a high “positive prediction value”, which means that of those who test positive, most have the disease.   It remains to be seen whether our method works better. 

Anyway, I spend most of a rainy morning dredging through the Internet, trying to find out just how the devil you calculate ROCA.  I finally ran it down to a simple formula: if a woman’s CA 125 score exceeded her "nadir" by a certain amount she landed in the high risk category, if it exceeded nadir by a lesser amount she was in the elevated risk category, and if it didn’t exceed her nadir at all she was in the normal risk group.  The one thing I couldn’t figure out was – what the hell is a “nadir”?  Several hours later I gave up and went to practice the piano.

Anyway, I still put my money on cancer sniffing dogs (see blog entry for 9/6/13)> 



FACEBOOK ADDICTION? Let's hope not.

Newfoundland, 2001

 

 

For years I have put a lot of effort into avoiding “social media”; things like Facebook , Twitter, LinkedIn  - you know, stuff like that.   My reasons for doing so were two-fold.  First, I am not of this century – or even of the last quarter of the previous century.  This makes it difficult for me to operate modern technology; my ineptitude often results in me having to ask my granddaughters for help.  Hell, grandfathers are supposed to give help, not beg for it.   Second, I feared that getting involved in stuff like that would give me another excuse to waste time.    At 80, how much time do I have to waste?   I have set my goal at curing ovarian cancer once and for all, and getting the Nobel Prize as my reward, before I die.  No time for Facebook.

But then, a few days ago, I did sign up for Facebook.  My excuse was that I could use it to trick more people into reading my blog.  It may help that way, but – just as I had feared – it has become an obsession.  Yesterday I must have spent several hours looking at pictures of people I really don’t know, and reading short exchanges of conversation between other people I also don’t know, about topics I know nothing about, and care about even less.  Maybe the novelty will wear off and I will get back to work.  Someday.

So, to make this blog worth writing I am going to pass on something I wrote a few days ago for the Bellingham Herald.  I strongly doubt that they will print it but, it being Ovarian Cancer Awareness month, I thought I’d try.  Here it is.

 

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Let’s talk about cancer.  What, you’d rather not?   I understand.  Heck, I spent most of my life trying not to even THINK about cancer, much less talk about it.  But it’s time to face the real world.  Buck up!

As I write this, Ovarian Cancer Awareness month is half over, and I’ll bet you didn’t know it.   Don’t feel bad; almost no one else did, either.   Sadly, almost no one has heard of Ovarian Cancer Month (September), even though it was proclaimed by the President himself!  Until recently I barely realized that there WAS such a thing as ovarian cancer, let alone that it had its own Month.  Things changed dramatically, however, about 2 ½ years ago when my wife died of OVCA.  Being over 75 at the time, and finding myself with no useful work to do, I decided to volunteer with some cancer research projects in Seattle, specifically the Fred Hutchinson Cancer Research Center and the Marsha Rivkin Center for Ovarian Cancer Research.

 I am a geologist by training, and during all my years of schooling I managed to avoid learning anything at all about biology.  (I figured it was for girls.)  In Seattle I expected to lick envelopes, file papers and other objects, and in general   perform tasks that required minimal skill or intelligence.  Instead, I found myself reading   material that I only vaguely understood, writing little laymen’s’ ditties about cancer– and studying desperately to get up to speed.  My “learning curve” was so steep   that climbing it required (and still requires) all the mental mountaineering skills I ever had, and more.  However, I have made a little progress, a  very little,  and I am going to share some of what I have learned with you.

Do NOT turn the page! 

Ovarian cancer is relatively uncommon, thank goodness, but given the current state of our knowledge it is one of the most deadly.    About 21,000 American women will be diagnosed with ovarian cancer this year, and perhaps 14,000 will die.  If detected early enough, OVCA is curable.  The problem has been, and continues to be, that detecting it early is difficult.  There are symptoms, but they are easily confused with other conditions that are far less lethal.  Research is underway to find markers in the blood that will warn of an early approach of OVCA, but so far they have been disappointing.    Some new approaches to this problem are being investigated at Fred Hutch and elsewhere; there is reason to hope, but success is far from certain.  Progress also is being made in treatment methods, but here again the pace of improvement is painfully slow.  Possibly the brightest star on the horizon concerns  prevention.

It is difficult to prevent any type of cancer absolutely,  because many cancers  arise from genetic changes -- mutations - that occur spontaneously.  Some of us are born with mutated genes that increase the probability of contracting cancer, but no cancer is truly inherited.    The likelihood of having inherited dangerously damaged genes can be assessed by examining your “pedigree”; did your near relatives suffer from the specific disease in unusually high numbers?  Ethnicity also makes a difference; for instance, women of Ashkenazi Jewish descent have an elevated risk of contracting OVCA.  Presumably an unusually high  fraction of these women are born with one or more mutations that, with the help of other random, spontaneous, genetic mistakes,  result in the disease.   I could give other examples but I have only 177 words left to play with in this essay so I must get on with it.

If you are high-risk and have all the children you want you might considerer lowering your risk of OVCA by getting rid of both your ovaries and your fallopian tubes.  Lately it has begun to appear that having the fallopian tubes alone removed will do the job nearly as well, and spare you possible complications.  See your doctor.  See a genetics counselor 

Space requires that I  resort to sending you to the Web. 

For symptoms:  http://www.marsharivkin.org/ovarian-cancer/symptoms.html 

Risk factors:  http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-risk-factors

For what Fred Hutch is doing about it:  http://www.fhcrc.org/en/diseases/ovarian-cancer.html.

To follow my amusing climb up the learning curve:  http://ljb-quiltcutie.blogspot.com/ 

 

 



FREE MEDICAL ADVICE (and worth every penny)

In our swanky Cairo hotel.

4 Star (but the toilet overflowed)

What I am about to do is probably ill advised.  I am about to give medical advice.    I am not a doctor, nor a nurse, and until about 18 months ago I actually did my very  best to avoid learning anything at all about health – on the grounds that something you never  think about won’t hurt you.  Stupid, yes, but perhaps understandable.  So, anyway, here goes.  FOR GOD’S SAKE GET A SECOND OPINION!

I have spent a good part of the last 18 months reading things about cancer in general and ovarian cancer in particular.  At times I’m lucky if I truly understand 20% of the stuff I study – but 20% of a great pile  of stuff amounts to something.  Here is what I think I know about preventing ovarian cancer.

Don’t be a woman of Ashkenazi Jewish extraction.

Ovulate as infrequently as nature and fate will allow.  This means:

                Start ovulating late.

                Start menopause early.

                Have babies

  Breast feed

                Use  the kind of birth control methods that prevent ovulation.

Don’t use talc.  

Don’t have mutations in your BRCA1/2 genes.

Don’t have mutations in any of quite a few other genes, most of which we don’t even know about yet.
              In other words, don’t be unlucky.

Don’t use hormone therapy, at least without having serious conversation with several doctors.

Don't gain too much weight

The group I try to help has a classification system for risk of ovarian cancer (ROC)

If you are an Ashkenazi Jewish woman, or have known BRCA mutations, you are in the High Risk category.

                If you have several first-degree relatives (mother, sisters) that have had ovarian OR  breast cancer you are in the Elevated Risk category

                Otherwise you are in the normal risk category, with less than a 3% lifetime chance of developing  OVCA.

So, what to do?

                Talk to a genetics counselor. 

                Try to find and join a clinical trial.  Easy if you live in a big city, hard otherwise.

If you are in either higher risk category you might consider the following.

                Have a risk-reduction procedure.  You might do this as a byproduct of some other surgery or, if you are of high risk, you might consider having it done on its own.  Some factors to consider:

                Most “ovarian” cancers originate in the fallopian tubes.  Removing your ovaries deprives your body of hormones, thus making menopause miserable (they tell me.)  Consider doing what is known as BSOR:  Bilateral Salpingectomy with Ovarian Retention.  “Salpingectomy” means removal of fallopian tubes.  BSOR is especially recommended for women in the High Risk category. 

                Of course, don’t do anything until you have had all the kids you want (or can afford.) 

Once again: for the love of Pete, don’t take my world for anything.  Get some advice from someone who is paid to know something.

On a personal note: my first great granddaughter is hovering on the brink of independent life.  Her mother has given up moose hunting until she arrives.  The scene is thick with excitement. 



CANCER SNIFFING DOGS (!)

 

Nova Scotia, 1999 or 2000

 

The trees changed colors to match her sweater

 

 

Boy, even Stephen King couldn’t make this stuff up!  All over the world, sophisticated research groups have spent millions of dollars, euros, pounds, rupees, etc., attempting to develop blood (sometimes urine) tests to detect ovarian cancer at an early stage.  They have made progress, but progress has been agonizingly slow.  Now – if this stuff pans out – all their efforts may become as naught, for a more sensitive, cheaper, and more cuddlesome test may be at hand: cancer sniffing dogs!

My good friends Ron and Terri Dupuis yesterday alerted me to a news story making the rounds.  Some people in Pennsylvania, including doctors, physicists, and veterinarians, are working with dogs that seem to be able to detect ovarian cancer – AT AN EARLY STAGE -  by smell alone!  I guess this could be real – they can detect minute quantities of all sorts of things with their noses; witness all the sniffing dogs in airports these days - so why not disease?  Before we got all scientific and such, doctors used  smell to help diagnose many conditions.  I suppose it is possible that ovarian cancers, even at an early stage,  emit certain chemicals that can be diagnostic.  There are experiments underway to identify these chemical (“odorants”) using machines, but apparently dogs can do it better - and with a wagging tail!.  Or maybe they can.  As always, more work needs to be done.

So, you all know how annoying it is to have some strange mutt shove his muzzle into your body (usually your crotch) on first greeting;.  But, think – maybe he is just performing a health evaluation!

More on cancer sniffing dogs:  http://www.medicalnewstoday.com/articles/264629.php 



LET'S DO SOME BOOK KEEPING

Box Canyon, Anza Borrego State Park, California

 

No, she is not about to climb down

 

From time to time I have been asked a puzzling question: Who reads your blog?  I would very much  like to know.  My current answer is “thousands of people all over the world”, but I kinda suspect that might not be strictly accurate.    At all.

So, how about giving me a little help, please.  When you read this blog, ask yourself the question: how many times in a typical month do I read “Myrl’sBlog”?    Then please email the answer to myrlbeck@msn.com.  I am hoping that I will get many, many answers of “once a month”, but I am a little afraid that it will turn out that my 8000 “hits” are due to about 16 people turning to it (the blog) about 500 times per month.  It is nice to have loyal readers, but the idea here is to reach the masses.

I will let you know the answer in a month. 

Thanks

Myrl