2nd Opinion

By this point I have been reading a lot about prostate cancer.  Besides sending my diagnosis to my primary doctor at Kaiser, I was advised by a lot of the prostate cancer sites that the first thing I should do is send my pathology slides to get a 2nd opinion.  I was told that sometimes it could be down-graded to a possible 3+4=7 or 3+3=6 which both are less aggressive and I have more treatment options.  Apparently the pathologist at the hospitals look at cancer from all different types of tissue such as breast, prostate, etc. Sometimes they grade high or low.  The 2nd opinion pathologist only look at prostate cancer.   The gold standard for a 2nd opinion is from John Hopkins University.  So I called the pathologist office and asked them to send them there.  They told me it would be there in 2 days.

After the 2 days, I called John Hopkins.   I paid the $250 (Kaiser doesn’t pay for a 2nd opinion).  They then faxed me the report.

JR2nd

The report was a shock again.  I was upgraded to a 4+5=9.  This really sucked.  It was one thing to have aggressive 4s but for them to put down the more aggressive 5, there had to be at least 5% of category 5 cells in the core.   John Hopkins has their own prognosis grading system also that you can see on the above report. You can see at the bottom of the report that mine was grade group 5, the least favorable.  Another kick in the crotch.

It took almost 2 weeks for Kaiser to acknowledge the cancer diagnosis since I went outside for the CDU and 2nd opinion.   In the meantime I joined a prostate cancer support group.  I wanted to talk to more guys who are going through it.  They have given me great advice.  The first thing they told me was to get better insurance and go somewhere else.  They said Kaiser would put me in a box and give me limited choices.   I learned that first hand already!  I have started to investigate what is the best treatment options so I can be prepared to talk to the many doctors I will see.

I will update this as I continue my journey.  Take care.

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