From Heartbreak to Hope; challenging your Doctor and owning your future

I have been giving a lot of thought lately to what responsibilities Doctors should have.  Is there any rhyme or reason to what and how they advise a patient when it is a matter unfamiliar to them?  I am aware of some Doctors that have advised a patient that the “rare cancer” they’re seeing is out of there area of expertise and recommended finding a Specialist.  Then there are some Doctors that say, this is a rare, yet don’t provide the insight that maybe they aren’t the best person to be treating the disease at hand.  Just maybe there is someone else out there that has seen this before or treated it with success.  When does it become their responsibility to admit that maybe, just maybe, they should not throw just anything at it?
So, how do I get the word out to people that you need to question everything when your health is at stake?  That’s why I’ve created this entry, hoping it will make its way around and eventually help at least one person.
You shouldn’t be worried about hurting anyone’s feelings.  You should not be intimidated by the Doctor in the white coat, the Radiologist who reads your scan nor the very accommodating, emphatic Nursing Team… you need to take responsibility to question everything.  Why are you recommending this regimen or this course of treatment?  How many times have you treated this specific disease/situation with this regimen and what has been the outcome?  How many cases like “this” have you seen and treated?  Of those that you have treated, what is your success rate?  What has been the outcome of those patients?  Do you have some like patients that I could speak with?
All of these questions are so critical.  Don’t just let a Doctor tell you what to do, ask to understand why they are recommending what they are.  They are just Doctors, they put their pants on just like we do and guess what?  Doctors don’t know everything about everything.  Do you know everything about everything in the Industry you are in?  I’m guessing you don’t.  Think about it this way; if your house needs a new roof are you #1 going to call a General Contractor to take care of that for you or are you going to call a Roofing Company?  I’m betting you’ll call a specialist in the area of Roofing.  This is why people have areas of expertise.  If you have a skin issue you seek a Dermatologist, a foot issue you’ll see a Podiatrist, ears or nose issues an ENT – you get where I’m going with this.
So if this all makes sense to you, then why are we afraid to ask questions of the Doctors? Why are we just okay with the Doctor we get “assigned” to when in need?  Why are we okay with our Primary Care Physician advising us on care?  Why not ask questions?  Why not test their theory?  Why not seek the statistics behind their recommendation and/or treatment to ensure that it is valid and that it works?
I understand that the ultimate decision of treatment/care lies with the patient.  That it is truly our responsibility to research our illness/disease, to find the Specialist(s) and to facilitate those conversations and appointments.  Yeah, I get that.  But when does it become the responsibility of the Doctor to tell the Patient; I am not the best, most qualified Doctor to direct your care for your specific diagnosis?  Is it ever their responsibility?
I was very disturbed recently when I was told by a Patient that their Medical Center told them “we are taught in Residency School that if we open up a patient and we see “something like this”, we are taught to close the patient back up and advise there is nothing we can do for them”.  Yes, these were the words from a Doctor at a Cancer Center.  If the Doctor does not know what they’re dealing with then yes, it makes sense to do that.  But to tell them there is nothing I can do for you?  Okay they cannot, but can’t they recommend seeking out a Specialist?  With today’s technology and online networking can’t they direct someone online to find resources?  You’re not thinking with a clear head when you’re first given this type of news, trust me.  To give a patient such a grim prognosis and to tell them to go home and “get your affairs in order”, in my opinion, is unacceptable.  How can they say that when they don’t really know what they are dealing with?  In my opinion, they shouldn’t be.
I can tell you from experience, when you are told “it doesn’t look good and your Husband has about 12-14 months to live”…  it paralyzes you.  It makes your ears ring to a volume that I never knew was possible.  The pressure mounts so quickly and so intensely.  It makes you dizzy and your world starts spinning.  You cannot breathe.  You can’t.  Your life, as you see in movies, does begin to flash in front of you.  The song of your life seems to start playing and coming to an end all too soon.  Why is it okay for them to look at you and apply the ‘textbook treatment’?  Why are they not the catalysts?  Why couldn’t they say “hold on to hope”, “don’t give up”?  Why can’t they remind us that they are one Doctor with one opinion and that there are so many options out there?  I’d hate to think there is a motive for not doing so.  Let me get my head out of that space as it makes me sick, and sad.
This is your life.  Take ownership of it.  Ask questions.  Seek clarity.  Find a Specialist.  It is your choice and your responsibility.  IT IS ONLY YOUR LIFE.  It is okay to question a Doctor; to challenge their diagnosis and treatment recommendation.  You have every right and I pray you exercise that right.
Once you have succeeded; share your story.  Tell others what you did.  Encourage them.  Provide them with the confidence they need.  Tell them to Hold On To Hope and to Never Ever Give Up.  Pay It Forward.  That is really why we are here isn’t it?  To help others.  To give.  To love.  To be selfless.