The myth of the second opinion

It's hard to balance the weight of everyone's hope and advice.  One thing I hear more than anything else is that I need to get a second opinion.  This is a hard one, as there really is no second opinion for me.  I know I have TGCT-TS and I know there is no cure.  So what is the second opinion?  There is no doctor out there that has a magical answer.  There is no path I can go down where I don't have this disease.

In case you are wondering, let's review facts.

1. My diagnosis is sure.  Remember, I was diagnosed September of 2018 with TGCT-TS in my left ankle.  The surgeon removed the tumor to the best of his ability.  The tumor was tested in the operating room to confirm the diagnosis, and then later the entire tumor was tested in the pathology lab.  All results show this is a Giant Cell Tumor.  I think the primary purpose of a second opinion is to seek an alternative diagnosis.  At this point, I would not trust anyone who claims I don't have TGCT-TS.  Especially since the tumor has quickly grown back, as it would if it was TGCT-TS.

2. Treatment options.  I have already seen two doctors.  My surgeon and my oncologist.  The oncologist made all the options very clear to me, and they are as follows.
a. do nothing
b. try Gleevec (a chemo) to shrink the tumor.  This chemo was designed for leukemia patients but there has been some success treating giant cell tumors.  (This is what I am on)
c. try Turalio  a new chemo that was just approved last month.  This chemo was designed specifically for giant cell tumors but is very hard on the liver.  Some patients in the clinical trials needed liver transplants and some even died from liver failure.  I need my liver (hello wine) so this is a firm no for me.
d. get in an immunotherapy clinical trial.  There are clinical trials looking for giant cell tumor patients to try immunotherapy right now.  Immunotherapy works by stimulating the patient's own immune system and often results in immune diseases as a side effect.  Not a risk I am willing to take when there is no known results.
e. amputation

These are the only, I repeat ONLY options.  I have joined online groups and read the stories of other people suffering from this disease and no one is anywhere where doctors are doing anything different or where they have a cure.  There is no cure for this condition.

The only option not listed is to try another surgeon.  Maybe they could successfully remove the full tumor.  You need to get EVERY little cell or my tumor will rapidly grow back.  I will be asking the oncologist about this when I see him in a few weeks.

But you see, this idea that there is another answer out there, that there is another opinion, is just not real.  There is nothing else out there for me or for anyone else with this disease.  And when people keep asking me why I haven't done more its painful.  Like somehow I haven't done enough or thought this through or searched hard enough.  Like somehow because all the futures are negative that this is my own fault.  Like I have given up on myself by accepting this reality.  If only I could find that mythical second opinion.  I wish it was out there.  But I am convinced its not.

In other news . . . today is a hard day.  I woke up feeling so sick.  And its hard to get up and get kids fed and off to school.  To trudge into the office and try to conjure a sermon from my foggy brain.  I took a morning Zofran (a first) to help my tummy but it makes me tired.  And chemo makes me tired.  And I'm sad.  Sad and tired.

Oh well.  I just have to keep going.