The Big “C”

July 18th, 2014

Cancer is a very frightening word.  It’s a very frightening disease but I think the word is worse.  It conjures up images of people with scarves on their heads,  pale and thin, bulbous tumors and growths, and ultimately death.

But it probably shouldn’t.

cancer

I recently finished a book, The Emperor of All Maladies: A Biography of Cancer, which describes how cancer was initially treated, how scientists made revolutionary discoveries, expanded understanding, endured crippling setbacks all the while remaining compassionate, and understandable.

Cancer has been with us for a very long time, even before we knew what it was.  In the book it describes the rise of “Cancer societies” and their transformation from being science lead to market lead organizations.  In a recent PCa support meeting the presenter gave the history of brachytherapy which echoed the books reports of doctors performing drastic procedures to test potential treatments, often without patient consent or understanding.

What reminded me of all this was a recent post by my urologist Dr. Singal on twitter to an article about prostate cancer screening. The article was a response to another article about health care and whether or not prostate cancer is worth testing for.

Now obviously I am biased given my present situation, but it would seem to me the issue isn’t with testing, the issue lies with treatment.  And our fear of cancer is what drives treatment.  Saying we shouldn’t test for prostate cancer because it leads to over treatment  which is non-cost efficient and does more harm than good is stupid.  It’s jumping a step in cause and effect.  It’s not the testing that makes it non-cost effective and harmful, it’s the over treatment.

So let’s look at over-treatment…

When my mother got lung cancer, she went through surgery, chemo and radiation.  And after she had exhausted all options, she turned to alternative treatments including some radical ones.  Treatments like 7-14-X which do not have sufficient clinical trials to validate their effectiveness. However when you have nothing to lose, and you are driven by fear of course you will over-treat. Cancer will kill you…

…sometimes.

If you have options, and you have time then you can make more sensible choices, and sometimes that choice is to just wait.  Active surveillance is a viable treatment for prostate cancer, and who knows maybe I just writing this to try and convince myself but it would seem to me that if we could get past the “holy shit, did he just say I have cancer?” moment and take a deep breath then we’d be able to approach this with a clear head.

Prostate cancer research and testing is definitely headed that way. Every day more articles on active surveillance come out and more urologists seem to be accepting it as a form of treatment.

For me, I am glad I got tested. Knowledge is power. I am equally glad I was diagnosed at a time when aggressive treatment isn’t the only option. Impotence and incontinence are horrific consequences to live with at 70 years of age let alone 40 years! I feel lucky to be in this position, I am aware of my disease, in a position to monitor it, and don’t have to live with the side effects of treatment. Not to mention that every day that passes without treatment better solutions are developed. Who knows, maybe by the time I need to deal my cancer a treatment will have been developed without side effects.

The question of “to test or not to test” is missing the real issue. The real issue is what to do afterwards and sometimes the best response is to do nothing at all.

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Mercy, merci!

June 11th, 2014

Quebec became the first province in the country to pass into law legislation allowing “medical aid” in dying and as a result sparked a debate regarding end of life care. There is a lot of push back from religious and palliative care groups against assisted suicide and according to media it is a polarizing issue.  Even among doctors,

“The CMA’s own surveys suggest only 20 per cent of doctors would be willing to perform euthanasia. Twice as many – 42 per cent of 2,000 physicians polled last year – said they would refuse to do so.”

I hate to be cynical but of course, there is no money to be made killing your patients and it damages your reputation. Besides, everything in a doctor’s training has been around preserving life at all costs.  Look at the gargantuan efforts made to save people who will be in a vegetative state due to illness or accident.  As is the western way, we have sanitized and removed ourselves from death so much that we scarcely acknowledge it’s existence; shuffling the sick and elderly into homes where we don’t need to see them.  There was a time when people died in their own homes.  That is not so common anymore.

It doesn’t matter whether the objections are religious, moral or even practical.  It is an issue that we need to deal with. and each of these can be dealt with in turn.

If you think that assisted suicide is wrong based on religious grounds, then my response is simple. Please keep your religion to yourself.  It’s wonderful you have it, I’m glad it provides your life with meaning, but I do not adhere to your faith and I would appreciate your faith not interfering with my life, or death as the case may be.

If you object to euthanasia on moral terms I would ask you to consider the following,  while driving you hit a dog.  The animal is in pain, and clearly suffering.  You take it to the vet who recommends the animal be put down.  Do you object?  Do you state that it should be allowed to die naturally?  Of course not.   Why would you not grant the same mercy to a person suffering? Especially when the person has the ability to inform you of their wishes, while the dog does not.

As for the practical reasons, you may have concerns regarding who gets to give the order, or how such care is administered?  Or what happens when someone is coerced into suicide.  Dignitas, an assisted dying organization, has many of these questions answered.

Terry Pratchett, the author of the Discworld series has a very thought provoking documentary on it.

For myself I would like to meet death on my own terms, the way this woman does on Swiss T.V.

I should have the choice to end my own life in a way that does not traumatize my family.  I suppose recent events have me thinking about this more than normal.  even if people don’t have a terminal illness shouldn’t self determination be an inalienable right?

Euthanasia, assisted suicide, aided dying; it doesn’t matter what you call it.  It’s mercy and thanks to Quebec there is now an opportunity that mercy is available in Canada.

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We remember

June 5th, 2014

I was sick yesterday and forgot to post this.  China may hide the truth from it’s citizens, but the rest of the world will not forget.

China. Tiananmen Square. 1989.

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A Case for PSA Testing

June 4th, 2014

So there is some debate at the moment whether or not PSA tests should be covered as part of OHIP.

Rocco Rossi, former mayoral candidate and CEO of Prostate Cancer Canada, wrote an op-ed piece on the Star for the need for testing.  Interestingly there are two comments, by Dr. J. Owen and Dr. P. Fafard which speak out against PSA as a test.  The argument that both commentators make is that the PSA test has numerous false positives and that it can lead to unneeded biopsies.

Sometimes the anxiety of the dreaded “C” word also leads to unnecessary treatment.  All prostate cancer treatments have side effects so there are men out there suffering with some side effects they probably didn’t need to.

I find it strange however, that as a group the medical profession cannot figure out a simple solution.  The PSA test is an indicator, nothing more. So it should be easy to set up a protocol where if the PSA indicates the potential for an issue, you do a follow up PSA test a specific amount of time later.  If that also shows an issue then you perform a biopsy.  Or you do an MRI with a targeted biopsy.

BREAST CANCER…

  • Affects 1 in 9 Canadian women
  • 9,300 diagnosed every year in Ontario
  • 1,950 annual deaths in Ontario
  • OHIP covers cost of screening test

PROSTATE CANCER…

  • Affects 1 in 7 Canadian men
  • 9,600 diagnosed every year in Ontario
  • 1,500 annual deaths in Ontario
  • OHIP does not cover cost of screening test

If you look at the stats between breast cancer and prostate cancer the numbers are not that different.  I wrote to the various candidates running in the Ontario election and mentioned my own situation. Not surprisingly none of them bothered to reply. The message went something like this:

I am sure you’re office is getting inundated by messages from special interest groups at this important time in the election.  And rather than send in a form letter I wanted to make it a little more personal.  I am 40 years old and I was recently diagnosed with prostate cancer.  This cancer has an excellent survival rate if detected early. However the test to detect it is not covered by OHIP.

For myself prostate cancer was suspected due to a PSA test that was part of a comprehensive physical, and then confirmed with another PSA test I paid for myself.  The test costs fifty dollars, so in total a hundred dollars to confirm a potentially life threatening disease.

Recently data on the average life expectancy in Canada was released and pegs the average lifespan for a man to be 80 years. Being 40 I have half my life ahead of me. Isn’t that worth $100? But what if you can’t afford it? Please cover PSA testing with OHIP.

Regards, Dave Hamel

The problem as I see it, isn’t with the PSA test itself, but rather with how patients and doctors react to it and what happens next.  If we could look at the issue more holistically then perhaps a protocol could be developed that satisfies everyone.  We could detect the  cancer early, but avoid unnecessary treatment.

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What about future Toronto

March 28th, 2014

Rob Ford is spouting a new soundbite, “saved a billion dollars”.  Anyone who bothers to look at the numbers will quickly see that isn’t true, and even if it was true he’s selling Toronto’s future short.  I could tell Torontonians, “Elect me and you will not pay another cent of tax!”  and then watch as the city crumbles. “Sorry the Gardener is gravy”. ” Sorry community housing is gravy”. “Sorry transit is gravy”. Which is essentially what Ford is doing.

It works because the suburbanites don’t think of Toronto as their home even though they commute in every day.  The asphalt in their neighbourhood isn’t crumbing because their development is only 10 years old, where as the neighbourhood in Toronto is 110.  So it is easy to say “why should I pay?”

I could easily say the same thing.  Sell off the TTC, make all the highways toll based.  Charge people more money for Go train and let them pay for the renovations at Union station.  I don’t use it, why should I pay?

The answer is simple, because like it or not, you are part of this city.  It behooves you to elect a leader with vision.  Toronto needs to stop thinking about the next 4 years and begin thinking about the next 40.  We need a leader who can think about how can we connect different parts of the city easily and efficiently. How we can improve the lives of everyone in the city.

This election shouldn’t be about saving money, it should be about saving Toronto.  The future Toronto, the Toronto that could be.  If Rob Ford gets elected, that future will die…

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PC Plus gets email marketing right

March 7th, 2014

I have written about effective email marketing and what I would do if I was in charge of an organization’s email campaigns.  A bad email can hurt the customer experience,while a good email can totally make it.

I have started receiving a great example of a group that does it very well,  President’s choice.  I shop there several times a month and they email me offers every week.

PCplus

 

What makes this email so effect is

  1. It is tailored to me.  They know what I purchase on a regular basis and so they market to me!
    As Seth Godin once said, “I don’t want email, I want me-mail!”  In this case they are using my own purchasing habits to get me to come back to the store.  They know I have a cat, so they offer me cat litter.  They know I always buy bananas so they offer me bananas.  They know I occasionally buy cookies, so they offer me cookies.
  2. They are testing products I have not purchased before.  The “Bonus Offer” might just be a mass effort or it might be actual individualized testing, either way it is an effective test.  Personally I will not buy canned soup.  It doesn’t interest me.  However they will be able to judge how many of their customers are interested or whether or not to make me the same offer.
  3. I have to do something.  I have to load the offers to my card.  Yes, it is just a click, however it is still engagement and measurable.  By loading the card they can measure how many of their email work, otherwise what are they going to measure if they automatically loaded my card?  I am not going to click through to see the product page on zucchini.

 

 

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The luckiest unlucky man

February 28th, 2014

Mark tells me, “Control is an illusion.  The best you can do is improve your odds.

Odds…

I am a lucky, unlucky man.

I was diagnosed with prostate cancer two days ago.  That would be bad luck.

However, I would not even know about it if it weren’t for some incredibly good luck.  My husband bought me a watch freeing up the money I was saving to buy myself the watch for something else.  I decided that I wanted a comprehensive physical to get a baseline.  The accident last year made me much more aware of my health and I decided it was a good idea to get a baseline. As part of that physical I received a PSA test.   That PSA test showed a potential issue which was then confirmed with a second PSA test.  This in turn lead to a biopsy which lead to the diagnosis.

Where the luck comes in is the government doesn’t want doctors to test anyone under 50 with the PSA test (let alone do a biopsy).  Which means I would not have been tested for another 10 years. In 10 years who knows where that cancer could go? Metastasized into the bone, spread to the lymph nodes, who knows. I was lucky enough to have a urologist who as he puts it, “casts a wide net to catch them while their still minnows”.

On the other-hand, it might have done nothing.  Prostate cancer is funny that way.  So now I am on active surveillance and beginning to change my lifestyle.  I might not be in control, but goddammit I am going to improve my odds.

 

 

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Biopsy

February 12th, 2014

I had my biopsy today.  It took all about 15 minutes.  I arrived at the clinic and handed the receptionist my health card.  She took it and then wrote down some information and then asked me to have a seat.  I look at the other man in the room.  ”Did I look as grim-faced as this guy?” I thought to myself.  ”Yes,” I realized, “I am just as morose.”

It’s not like there is any laughing in a normal Doctor’s office, but when you’re looking at twelve little jars that are about to hold 12 cores from your prostate isn’t exactly joyous.  One man was ahead of me and then the technician, I learned his name was Michael, asked me to come in.  He showed me into a little closet and told me to undress and put in one of the paper robes stacked on the shelf.

I complied and then used the washroom before entering the exam room.  Michael asked me to lie on my back and he then lifted up my robe and scanned my abdomen.  This made me question I have the silly paper robe in the first place.  I had done one of these before at Medcan so it was no big deal.  He then told me to roll on my side.  With a deep breath he inserted the scanner in my rectum.  It was smaller than the one used at Medcan so it went in easier but he was more aggressive in moving it around.  Once he’d taken some images of my prostate, Dr. Singal came in.  After greeting each other he said he was going to give me a local.  I must have visibly changed on the table because he noted my relief by reiterating how he doesn’t normally do this.

The wand went back into my rectum and it was followed by two needle pricks.  One on the right side, and one, much harder to reach  on the left.  In fact I could feel the poor doctor maneuvering the wand with one hand and try to spread my ass cheeks wider with the other so he could get it to the proper angle.  After a minute, when the freezing took effect we began.

“I will count down the first ones so you know it is coming.  Three…two…one…” Snap, went the needle gun followed by a dull pain.  ”That wasn’t so bad was it? The freezing worked?”  I sounded my consent.  Snap, Snap, Snap the subsequent cores were collected in short order.  Most were painless, only one or two caused any sort of pain.

I did hear him mention something about blood after the first core but it wasn’t until afterwards when he pulled out the wand and told me to hold a tissue against my ass that I got it.  ”Michael thought he saw an area on the ultrasound that looked suspicious, and your prostate is larger than it was.” Dr. Singal informed me, “We may have results for you as early as next Friday.”

So this chapter in my prostate saga is done.  Now we wait for the results…and hope.

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I should stay off the internet

February 9th, 2014

I know for a fact that all medical professionals lie.

Ever heard a nurse or doctor say, “this won’t hurt a bit” or “you might feel a slight pinch”, they’re lying.  They do this for two reasons one, studies have shown that patients who hear this actually report less pain. Two, no one wants to hear “this is going to hurt like a mother-fucker.”   I also know from experience that it is better you breathe as well,rather than hold your breath when they are going to do something that might be painful like give you a needle or remove staples.

So I wanted to know more about what to expect with the upcoming biopsy. I wanted to know how the procedure is performed, how long it takes and first hand accounts of the experience.  So I went to the internet.  Interestingly studies have been done on whether or not the internet is a problem for physicians. Turns out that patients look up illnesses online to become better informed, not because they don’t trust their doctors.

And now I think I have made a faux-pas. I came across so many accounts of how horribly painful this procedure is that I got myself worked into a state. Some guys were like, “no big deal” others were like,” I will never do it without a local anesthetic again!” Anyway I called the doctors office and strongly recommended the use of a local anesthetic, to which they said, they’d see.

I sort of feel bad, it shows a lack of faith on my part.  The doctor said it would be okay, I should trust him.

 

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The adventure continues

February 4th, 2014

So I finally got to see the urologist,  Dr. Singal, at his clinic this afternoon and the visit went more or less the way I had anticipated.  His performed a DRE for his own edification, as he put it: “I’m sure you been poked there before but the only finger that counts is mine.”  Now that I read that it seems creepier than it did at the time.  Basically he wanted to see for himself if the other doctor was correct.  To be honest I don’t know what the big deal is about DREs.

I had posted to an internet forum about going to see the urologist and wanting to know what to ask. I got a lot of responses and from that formulated a list of questions,

What about the PCA-3 test? He felt that it’s use was limited since I would need the biopsy anyway, and that it is more useful for men who have to undergo repeated biopsies after negative results.  He also mentioned that as a bio-marker it wasn’t the best.

What about MRI guided biopsies? They are not common yet, so I could do one in the U.S. if I really wanted to but that tumors and lesions are not always visible in MRIs and that the “blind biopsy” isn’t exactly blind that it is guided and he can see what he’s doing.

Who would do the biopsy?  He would. That was important to me since I didn’t want to get schluffed off to some resident or nurse.

What about local anesthetic?  This was one of my bigger questions.  I have read some accounts which make the biopsy sound worse than paper-cut between your toes (you cringed just a little didn’t you?) and other accounts which were totally dismissive. He said that there was a concern regarding injecting something into the prostate, which at the time seemed to make sense but now I’m having second thoughts since the biopsy needle is pushing something into the prostate. However a quick internet search confirmed this was actually true.  Poor Dr. Singal is going to have his hands full with me.

He mentioned that most men complain about the ultrasound wand going in.  I cut him short and informed him I was gay and that wasn’t going to be an issue that I was much more concerned about the needle.  He then mentioned he had done over 3,000 biopsies to which I pointedly asked how many he himself had received? In the end he gave me a prescription for a sedative to take the edge off and calm my nerves.  I figure I can also take a Tylenol before hand as well.  I did the same thing when I got some of my later tattoos and it seemed to help.

So I said we should go ahead with the biopsy, which is scheduled for next Tuesday. As I was leaving he said something to the effect of, “Trust me, I’m going to take care of you.”  Which I thought was probably the perfect thing to say.

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