Apr. 6, 2016

NET Center Visit- Louisiana

I feel like almost every time I post something it is about something being new or changing with my dad. This post is no exception. My dad and mom made a trip down to Louisiana to meet the top doctors that deal with NET (neuroendocrine tumors). This trip was a 3 day process- the first two days was the testing (scans, blood work, etc.) and on the final day he talked with the doctors and surgeons. This center believes that surgery is the way to extent life expectancy and gets rid of cancer (not cure). After hours of talking to my parents and Gerry (a great friend that took time to be a 3rd ear at this meeting), my dad has spoken and has made a decision about his future.

 

We’ve been told for 11 months now that surgery is not an option. Doctors either were not mentioning this option because they didn’t have the experience or knowledge about it or were too afraid to do the surgery. We have heard things like ‘inoperable.’ We have heard about a surgery called the Whipple. Doctors put fear in us that this was not a good option, however, when going to the NET center in Louisiana my dad was given a whole new perspective. He met doctors that were experts on his cancer and even better at surgery. After talking with all the doctors and surgeons, he has decided that he is going to have the Whipple surgery on June 16th. The surgery consists of my dad going down to Louisiana a couple days before the surgery and then staying in the hospital for a week after the surgery. As there are with all surgeries, there are risks to this surgery. They will be removing the head of the pancreas and rerouting his whole internal system. This is an intense surgery but the surgeon who will be performing it is very confident in its success. He has done 100’s of these over the last 10 years. It may not sound like a lot but that is more than anyone else. There will be about an 8 week recovery period after surgery where my dad will be healing and adjusting to the internal reconstruction of his body.

 

Here is the breakdown as it was explained to me.

 

Benefits to having the surgery:

-       Up to 90% of the main pancreatic tumor can be removed (the tumor is like a flower that spreads seeds. The tumor will be removed but the seeds, too tiny to see, will be left)

-       Surgeon is also an expert in liver transplants so he will look at the tumors on his liver while in there and remove what he can

-       Only a week in the hospital and then 6 to 8 week recovery period (we heard in the past 6 months)

-       With surgery, 80% of patients live 10 years after the surgery compared to 50% of patients live 5 years without surgery

-       Pancreatic tumor MAY not ever grow back

-       Pancreatic tumor will be much smaller so if it does start to grow again it starts at a smaller size

-       Afinator (current medicine), on average, works for 11 months. My dad has been on it for 10 months. After the medicine stops working (which we know it will) we were thinking of chemotherapy or clinical trials. We didn’t have a ‘good’ plan on what to do next. Now we do.

-       No one has died on the table

-       The surgeon who first performed this surgery, his mother had the exact same type of cancer and he performed surgery on her at the age of 90. His mother lived until 97.

-       No more stent will be needed which we learned would have eventually stopped working

-       Most likely will have to continue taking medicine but his pain level should be drastically lower or eliminated (again still risks with surgery no matter how big or small)

 

 

Cancer is a tough journey. It is an awful disease that no one deserves. Today, I am thankful for 3 things. I am thankful that my mom never stopped looking and found this surgeon and specialized center. I am thankful that God put wonderful people in this world that are dedicated and want to save people’s lives. Finally, I am thankful that my dad is such a strong guy that continues to fight.

 

When you hear someone you love is having major surgery it is difficult to digest. However, my dad knows what the best choice is for him and this is what he decided. I know my family is 100% behind him on his decision. Dad, you continue to be our hero and we love you more than words could ever explain.

 

 

We Will Win! Fight With Jim!

 

 

 

** As always, please continue to pray for my dad. We believe that your prayers and kind thoughts are one of the reasons we found this option. No one has given up and no one plans on giving up until they find a cure. **