you've got to be a sheikh... or a prince...

Several of my friends felt very strongly that I should go and get a second opinion.  When I met with Dr Cairoli after my biopsy, I asked his opinion.  He felt very confident in the diagnosis and the treatment plan, but commented "it doesn't matter how confident I am -- you have to be confident in your treatment plan... so you need to do whatever it takes to gain that confidence".  He gave me some names at Fox Chase and U Penn in Philly.  I asked about MSK.... his response "it's a little bit further away and I really don't think they'll tell you anything different... but if you want to go to MSK because that's where the sheikhs and the princes go, then go to MSK".  Enough of the people that I care about felt strongly about MSK, so I set off to make an appointment.

I called the main number from their website and was put in contact with a woman who would be my contact.  She warned me that it often takes a few weeks to get in and said that they couldn't schedule an appointment until they received the following from me:  pathology from all 3 of my initial surgeries, chemo summary, pathology from my biopsy, reports from my recent scans and a summary from my last consultation with Dr Cairoli.  I sent her the information that I had the very next day, but it took me a few days to collect the more recent information from my doctors.  I faxed it over last Friday and hoped to hear back about an appointment.  I called on Monday and left a message for my contact. I called again on Wednesday and still hadn't heard back.  She finally called me back today.  Bottom line... first available appointment would not be until August... and they won't see me if I've already started my treatment.  Well, thanks for nothing.  At this point, I've wasted two weeks and now can't get in anywhere else before Wednesday.  So frustrating!

After not hearing from them for days, I put out a call for help on facebook.  I am thankful for the many responses I got -- one friend of a friend was able to get me an appointment, but not until July 12.  Still too late.  I cannot wait to start my treatment. 

Another friend from years ago reached out.  Her father is a very well regarded oncologist.  Not only does he have serious connections, but he was willing to talk to me that very day.  I sent him a copy of the faxes that I had sent to MSK.  His thoughts on my case (of course, he caveated that he had not seen me in person, but his thoughts based on the information I shared...) put me at ease and gave me the confidence I need to move forward :

• The treatment that I got 5 years ago was best in class -- they did everything they could to prevent this cancer from returning
• The workup I've gotten over the past few weeks was state of the art
• He does not know my doctor personally, but holds the Fox Chase affiliates in very high regard -- they have access to all the latest studies and information
• MSK doesn't have "magic" -- he sees nothing in my case or plan that makes him think I am in anything but capable hands.  He would definitely recommend against delaying my treatment to go up to MSK 

This past week has left me incredibly frustrated with the medical system.  If I'm having this much difficulty navigating things and I'm well educated, very familiar with business, proactive and independent etc.... what happens to people who are not as fortunate?  It's sad to think that so many people would stop seeking after the first "no" they hear or aren't as aggressive and don't get the treatment they need... and frustrating that you have to "know somebody" to really figure things out... apparently, you have to be a sheikh or a prince to get easy access to the top institutes.