Saturday, November 27, 2010

The Time For Answers Is Now

I've been watching with interest the cyberspace debate sparked by Peggy Orenstein's article,  "Think About Pink", recently published in the New York Times.  Ms Orenstein's article, a sharp, insightful, and to some, controversial critique of the "pinking" of the world of breast cancer, is, in my opinion, part of a wider and growing backlash to the fundamental "awareness" messages being promoted by the mainstream breast cancer cause movement.  Indeed, in summarizing her views Ms Orenstein states:
"By making consumers feel good without actually doing anything meaningful, it discourages understanding, undermining the search for better detection, safer treatments, causes and cures for a disease that still afflicts 250,000 women annually (and speaking of figures, the number who die has remained unchanged — hovering around 40,000 — for more than a decade)."
To me, Ms Orentein neatly articulates the frustration that many are feeling that,  despite billions of dollars being raised in the name of breast cancer "awareness" from a fundraising movement that started to really gain traction in the early 1990's, treatment regimens although prevalent are of uncertain efficacy and invariably debilitating in their side-effects, agreement on appropriate detection methods for different ages and ethnicities remains fragmented,  and that even today mortality rates from this disease have not significantly decreased, particularly for non-Caucasian women.  (See National Cancer Institute fact sheet).

For me, this particular discussion has seemed painfully real in dealing with my own case over the last few weeks.  I have failed The pharmaceutical companies have failed yet again to produce a drug that will keep my cancer from growing.  So now I am faced with another round of new options, of which quite frankly, none are particularly appealing.  (I know that's a weird statement, but it's all relative in chemotherapy world).  Previously we have had, what appeared to me, to be a fairly well-laid out plan of proscribed chemotherapy options, with measurable milestones, and a reasonable certainty that my quality of life would be tolerable.  It always felt like a workable plan, with plenty of built-in hope and was generally a fairly smooth conversation.

But this time, the discussion with my doctor was different because it seems now we are in murkier waters due to my response, or lack thereof, to the chemo drugs tried so far.  Although I am, thankfully, not without options by any means,  the conversation this time around went something like this. (I'm simplifying for brevity-sake obviously but this will give you the flavor):

DrWonderWoman ("DrWW"): "You have Option A, B, C (which has sub-options) and D.  Options A and B are clinical trials.  Option A is only available in City X (4 hours away)  which I think I can get you into,  and Option B is here although it's randomized and you're allergic to the alternative control chemo which could be a problem.  Options C and D are already available.  Oh and this is what they will all do to you, blah, blah, blah......".

Me:  "And how long will I be on each option?"

DrWW:  "Indefinitely"

Me:  "What do you think is the best course?"

DrWW:  "There is no right answer"

Me:  "How do WE make a decision?"

DrWW:  "There is no right answer? You need to go and research and think about it"

Me:  "How do I do that ?  Last time I checked I didn't have a medical degree"

DrWW:  "There is no right answer"

Me:  "Well is there a particular option that you are leaning towards based on gut feeling and the fact that you have studied oncology medicine ?"

DrWW:  "There is no right answer"

Me:  "So you're telling me that the decision is completely mine ?  Well why do I need you ?"

DrWW:  "There is no right answer"

[This goes on back and forth for about another 20 minutes or so and then I ask.....]

Me:  "Why aren't you giving me any further guidance ?  Is this because you are afraid of a malpractice suit if you tell me the "wrong" thing ?"

DrWW:  "No,  but there is no right answer"

Me:  "Ok, but I would hope that given our history together, going on seven years now, that if I came to you and told you what options I had decided on, that if you felt strongly that I hadn't picked what you would have picked if it were you, that you would tell me.  Is that a fair question?"

DrWW: "Yes, but there is no right answer"

Me:  "Please.......give me something here"

DrWW: "There's no right answer...........but I think you need a taxane in your very near future"

Can Anyone Throw Me A Line ?

Whew!  If I ever felt a situation deserved a cliched metaphor in describing how I felt during this conversation, then this would be it so here goes.  Imagine being cast adrift in a shark-infested ocean, in a leaky boat, with no map or compass, with a cruelly vague sense that land is out there, but absolutely no clue how to move the boat forward or get to the land.  That about sums up how I feel right now.

The fact that I (and so many others) find ourselves in this and even worse situations is what makes me so flipping mad.

All of this money, all of this "awareness" and all of this pink.

And there is "no right answer".

How can this be ?


  1. it is so time to get a second and third opinion. you are in the territory i was in with my brother. when you are in the position of having to interpret the science behind clinical trials, you are not being given sufficient guidance.

    go forth seek new opinions.

  2. Anna, you are so right. That couldn't be more frustrating. I wish I had words to help or that I could bring you to my oncologist. Sending a hug your way. Keep us posted.

  3. Anna, I wish I could throw you a life line or offer some kind of answer. It is truly frustrating when the medical people one is relying on become unable (or unwilling) to give helpful input. You deserve more guidance here it seems. I'll be thinking about you as you try to sort this stuff out.

  4. All...thanks for your comments....still trying to work through these latest developments....very very frustrating indeed.... to be the subject of another post very soon I'm sure.....

  5. I can't imagine being in this "my life depends on this" do loop with no clear guidance. Please consider second & third opinions. This is not a decision you can make on your own.

    This reminds me of when I was first diagnosed & the oncologist sent me home with a 4-inch stack of pamphlets, many from the drug companies, appealing to me--the terrified woman still in shock--to decide which chemo drug I should take. They might as well have asked me to map out the best route to Mars!

    I'm sorry you're in this position, but keep digging, keep looking for other doctors.

  6. I am currently seeing my oncologist who is exactly the same as your doctor. He never ever gives me an answer and wants me to make all the decisions and choices. I dont know which one to choose.

    I am in the process of getting another oncologist.

    This is a very difficult time and a time when we really count on 'the experts' to help us. Bloody hell.


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