Sheila Johnson Sheila K. Johnson

First post: Jul 22, 2022 Latest post: Aug 20, 2022
Hello Friends and Family –

As you all know, I was diagnosed with pancreatic cancer earlier this year.  I will be having surgery on July 22nd and then be in “recovery mode”.   Caring Bridge is a great way to keep friends and family periodically updated as my treatment progresses.

The good news (if that term can be used in a cancer story) is that I have a pancreatic neuroendocrine tumor or “pNET”, which is a rare form of cancer that generally has a far better prognosis than the very aggressive typical form of cancer that one thinks of when hearing the term “pancreatic cancer”.  My pNet is in the “neck” of my pancreas and also grew into my portal vein (major vein in our GI tracts). 

There is no known cause of NETs. NETs are “low-grade” (meaning they grow very slowly). I am told that I may have had this tumor for 5 or 10 years - there is no way to know as I didn’t have any symptoms until I had two bouts of pancreatitis. And other than during those bouts, I feel completely fine and have no symptoms.  And to be perfectly honest, my tennis game has never been better.   

After several consultations, I chose a great team of doctors at Cedars-Sinai Medical Center, led by Dr. Nicholas Nissen (surgeon) and Dr. Andrew Hendifar (oncologist). From the beginning, they told me that I would need major surgery to take out much of my pancreas in order to remove the tumor from the pancreas and vein. I first underwent 3 months of oral chemotherapy to see if the tumor would shrink. Unfortunately, the chemo did not reduce the size of the tumor but doctors say that is not unusual in these low-grade tumors, which do not generally respond to chemotherapy by their nature.   So my next step is the surgery.   Based on the MRIs, my surgeon is planning to do a subtotal or “distal” pancreatectomy and portal vein reconstruction.  The procedure will also involve removal of my gallbladder and numerous lymph nodes. This plan could change based on what they see during the operation. The aim of the surgery is to remove the immediate problem (the pNet) and the doctors will also look for any other areas of concern (hopefully there are none but we will know more about a week after the surgery).  I should be in the hospital 4 or 5 days (assuming no complications). Then I will be home recovering. Looks like I will be on leave from work for about 8 weeks, and on leave from my tennis team for 4 – 6 months.  

 This cancer has a very high recurrence rate so I will be watched closely for the rest of my life for any signs of recurrence and then treated if and when necessary.  So .... now I am a member of the “cancer club”. There are unfortunately far too many members of this particular club. This has been quite an unexpected journey. This diagnosis and treatment will have ongoing ramifications for me. But life throws all of us challenges so I am dealing with everything one step at a time. I have great confidence in my medical team. And, most importantly, I have a wonderful group of supportive friends and family and I feel so fortunate for that. You all mean the world to me and I so appreciate all of the well wishes and offers of support. I am sorry that I have not seen many of you recently because I have been immunocompromised and need to be so careful with the ongoing risks of Covid.

I look forward to being back with you all in the not too distant future for dinners, hikes, concerts, tennis games, parties, travels and more. 


Love to all of you, 


Sheila

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