Brca2 Boy

Let me start by saying I’m not quite sure how these discussion board threads work (even though I’ve made a couple of entries). When I reply to this, who all sees it?  Is it just the people who have replied to my initial post or is it the whole community? I’m assuming that at least those of you who have replied to my initial post will be notified of this so I’ll respond accordingly.

Anyway, my wife and I returned late Friday night (1/5/18) from the Mayo Clinic. During this latest day trip we saw a Gastroenterologist, a Medical Oncologist, and a Radiation Therapy doc.  What we learned was this.  The Gastroenterologist wasn’t that helpful (see previous post).  He basically advised me that I needed to do my homework and choose a treatment regimen that I was comfortable with.  The Medical Oncologist along with his Intern (Fellow) was the most informative.  The Fellow (I assume this means he is working on some kind of Fellowship and is assigned to the doc) did a very thorough job of learning what I knew of my cancer situation and filling in any gaps that I left.  My cholangiocarcinoma is of the Perihilar variety and consists of one tumor about 2.2 cm in size.  While relatively small, it is positioned in such a way as to have been determined inoperable once the surgeon opened me up and got a better look. The surgeon saw no indication that my cancer has spread.  Several lymph nodes that were removed and tested were clear.  My gall bladder was removed and was without any sign of disease.

After the Fellow left to discuss my case with the medical oncologist (Dr. McWilliams), they both returned to inform me of the plan they though would best address my case.  Unlike what I was told initially, they didn’t believe I would be best served by having chemo in conjunction with radiation.  They want to first try a chemo regimen consisting of one infusion followed by a second in eight days, then a week off repeated until six months elapse.  At the end of this period they will evaluate me to see if radiation is also needed.  The chemo will consist of gemcitibine and cisplatin.  I understood them to say that this chemical compound was best suited to someone with the BRCA2 genetic mutation that I have but I’ve since read many posts on this site and other on-line articles that say that this is now the standard protocol for initial treatment of this disease.  I also learned that because of my BRCA2 situation I might at some point be a candidate for one of the PARP Inhibitors but that they have not as yet been approved for this type cancer.  As such it would unlikely be covered by insurance and if I were to choose to pay for it myself the cost would be $10,000.00 a month!  They also want me to have a biopsy of my liver performed to determine if the cancer I have has undergone any kind of genetic change. I have returned home to Michigan to have this treatment administered here locally.  Does any or of all of this make sense to those of you who are further along in the treatment process?  Is it worthwhile to continue to solicit other opinions while undertaking this treatment plan?  I’ve been advised by some well meaning family members that I need to continue to be my own health care advocate and talk to people at the Cleveland Clinic and other cancer centers to see what they have to say.  Am I in danger of just unnecessarily complicating things?  As always, I look forward to hearing from anyone with an opinion.

Peace.