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Health Update #2 ~ July 20, 2020

Health Update #2 ~ July 20, 2020

Today was my visit with the John Hopkins oncologist.  Although because of Covid restrictions and having to go to the appointment by myself, Shree was able to join by phone.  The oncologist was kind, patient, and easy to talk to.  Last week, I had several tests and procedures.  On Wednesday, I had an upper and a lower endoscopy and on Thursday they did a second biopsy (they did a first biopsy back at the end of June to diagnose the cancer).  The additional biopsy will provide DNA mutation information to help specify the chemotherapy to treat the specific cancer.  This second biopsy results won’t be available for several more weeks.  I also had my medi-port implanted and a PETscan also done on Thursday.   Originally, the doctors were unsure if the cancer originated in the liver or if it metastasized to the liver from somewhere else in the body.  After reviewing my original biopsy, the lead pathologist felt like it was a gastric cancer, although my history and scans were pointing to cholangiocarcinoma (Liver bile duct cancer).  This was making my case a bit more complicated to diagnose and to develop a treatment plan.  The preliminary result from the Endoscopies (biopsies not back yet) and the PETscan is that there is no other cancer in my body besides the tumor on my liver and several surrounding lymph nodes.  Therefore, the oncologist is leaning towards the cancer being cholangiocarcinoma.  Cholangiocarcinoma is very rare, but I am at higher risk for this cancer because I have a disease called primary sclerosing cholangitis (PSC) which put me on the liver transplant list two years ago, unfortunately transplant is not an option at this point.  

Cholangiocarcinoma, because it is very rare, has not gotten the same attention in research as other cancers.  If my cancer is cholangiocarcinoma then it is at stage 3, because there are lymph nodes involved.  My oncologist said that cholangiocarcinoma had a very bad reputation in the past but over the past 3-5 years the treatments have improved, and they are beginning to see hopeful signs of patients responding well to chemotherapy.  This was encouraging.  My treatment plan will consist of two different types of chemotherapy every week for 2 weeks, followed by a week off.  This will continue for 2 months, at that time additional scans will be done to see if the cancer has shrunk, grown, or stayed the same.  My first chemo will be on this Friday, the 24th.  Surgery to remove the tumor is not an option at this time, but if the tumor responds to the chemo and shrinks than surgery may be an option.  

A diagnosis of cancer is not easy, cholangiocarcinoma is not an easy cancer (there is no easy cancer), but it was a hopeful appointment and encouraging to have a plan ahead of us.  As I wrap up this update, let me leave you with this song by one of my favorite musicians, Matt Boswell.  The song is called “Come what may”and echoes the attitude and prayer of my heart, may it also be an encouragement to you in whatever suffering God has before you.  “Come what may my heart will follow, Come what may my song you’ll be.  I will cling to the Cross where my dear Savior died and trust in His wonderful name, Come what may”

Categories: Health Updates