Thursday, February 28, 2013

Having a Tumor and Chosing Not to Have it Removed

A couple of days ago I read something that really worried me.  A lady was on Facebook relaying a nightmare story about a back surgery (tumor removal) that went wrong and the terrible events in her life that followed.  That alone wasn't what alarmed me, because surgery IS surgery and outcomes can never be guaranteed.  I had an irrational fear that I would be one of those poor unfortunates that never wakes up from anesthesia - but we all have those kinds of worries the creep in around the time of a major surgery - either our own, or that of a loved one.  But what alarmed me most was a lady who had posted a reply saying in effect "That is why I am never going to get my tumor removed"!  That comment was one which literally had me losing sleep.

Of course we have and should have dominion over our own bodies.  And as the old Rush song goes "If you chose not to decide you still have made a choice".  I recognize that some may consciously decide not to have a tumor removed, and that is their right.  However I wanted to advocate, to all who may listen, in the strongest possible terms - that you should get a full range of opinions on your medical situation before opting for inaction.  If you decide to try to live with your tumor, whatever kind it may be, then do so consciously.  Not out of vague fear or just the inability to confront what it might mean for your life.  But chose this very deliberately - and I would counsel as well that if a majority of Physicians do not agree that you should just leave your tumor in your body - then you should take a long hard look in the mirror and at least consider confronting the option of removal.

I know surgeons are frequently hotshots, and they will jump over one another to be the one to attempt a risky or complicated surgery.  That is the nature of the beast.  You have to be confident to open up another person's body.  I was lucky that, when the time came for my Schwannoma removal in mid 2009, my surgeon was an honest and thoughtful person.  He gave me the best possible assessment of the risks and they rushed me to surgery in four days.  When we chatted on the phone he also made a point to hypothetically tell me what one could expect if I were to continue to try to live with this tumor in my spinal cord.  In so many words, he told me that the prognosis would simply be more debilitation, progressively getting worse as the tumor squeezed what was left of the spinal cord - until a wheelchair became my home with the likely loss of all my lower body functions.  I was already experiencing mind bending pain, extreme nausea, a horribly irritated prostate, and for me the decision was made the moment the tumor was found.  I rationalized that my quality of life was already so low - that even if I got back 50% it would be a drastic improvement.  As it happened, I got back much more than that.  And though I am still a chronic pain sufferer - for sure, I am still VERY glad I went ahead with surgery.  And still very proud of Dr Scully from Northwest Neurospecialists in Tucson - for the fine job he and his team did in my surgery and recovery. 

I remember a great general was quoted as saying "Never take the counsel of your fears."  And I think that is great advice.  When fear takes over our decision making it is not always leading us to the right conclusions.  Some risks are indeed worth taking.  Sometimes the cost of inaction is so high - that a risk must be taken for anything to be saved at all.  I am glad I took the risk - because even my worst days now are much, MUCH better than my best days with the tumor in my spinal cord.

I can only urge people, especially those with spinal tumors like I had - to make sure they have looked at every option before going ahead with either surgery, or trying to continue to live with a tumor.  Reason dictates that these things are easier to remove when they are smaller - and if left alone to enlarge, they have all the potential to continue to lower one's quality of life.   So think hard and get all the information you can.  And whatever you chose, chose consciously - and don't let fear override what is obvious, or what common sense tells you.

 (Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)