People keep asking me "are you going to update your blog?" and the truth is... I've been procrastinating.... for a while.
My last radioembolization treatment went great. I was not sick afterwards like I was the first time which was wonderful! I've also had a pet scan since then that revealed all the tumors in my liver are dead from the treatment. My Dr. referred to this as a Miracle. There were no new tumors and the ones in my lymph nodes and pancreas haven't changed.
I thought my decision was made, but I'm struggling to commit to it. In my last post I said I was doing the transplant, but since then one of my doctors has talked to me several times about waiting and watching. This Dr. has also brought my case to other Drs. who also agree I should wait on the transplant, due to my age, possible complications that can come with a transplant, and life expectancy statistics that come with a multi visceral transplant. My options haven't changed. This option is just being brought up more and more, which has just confused me more about what is the best decision.
Option One:
Wait and Watch
In this option I would have the tail of my pancreas, where the main tumor is, removed, along with the lymph nodes with tumors. I would then just get scans every few months to look for possible new tumors or changes. Hopefully there would be none.
Benefits: This would not be as hard on my body as a transplant. I would have a shorter recovery time. The surgery is far less risky than a transplant.
Risks: waiting and watching; if it shows up again (they said I could have microbial tumors they can't see and might not make their appearance for up to years from now.) or spreads to any other organs I can never have a transplant if I got to a point where I needed one. I could still need a transplant at some point even if I go this route.
This option offers low risks up front but possible high risk down the road.
Option Two:
Transplant
With this option I would have my liver and pancreas transplanted and the lymph nodes removed. I would get scans with this every 6 months to a year to see if any cancer has returned. As I've said in my previous posts, they would have a liver, pancreas, stomach and intestine ready for me in the surgery in case they found anything else while they're operating. They would also remove my appendix to avoid any possible intestinal surgeries in the future.
Benefits: This option would be the best option to get any cancer they are aware of out.
Risks: There are major risks with a multi-visceral transplant, life risks during surgery or recovery, infections and lifestyle changes post transplant. I would be on an immunosuppressant for the rest of my life, which puts me at a higher risk for other types of cancer and the cancer returning. The recovery time for this would be 4-6 weeks in the hospital along with needing 24hr care post transplant for 2-4 weeks. A lot of people do fine with a transplant and I need to stay positive if this is my choice that I will be fine too. Its just scary to think of all the not so positive things that can happen.
This option has high risk up front, but could be good for me in the long run as long as everything goes smoothly.
All the Doctors are telling me its my choice and there is no right or wrong decision, but they each have their opinion as to which would meet my current need the best. They also still can't tell me what my prognosis would be with either option. I plan on going on the transplant list either way. I've completed all my transplant work ups. I will also have a consult with a surgeon to discuss the non transplant option. Josh and I are praying about both options. One option isn't necessarily better than the other. There are risks and benefits to both. I just need to decide. That is my prayer request, that I can make a decision and go with it. I need to decide quickly as I'll be on the list in a couple of weeks and I was told after that I would get the call quickly saying they have organs for me, like within a few weeks of being on the list, so I need to know what I'm going to do. Once I make the decision I need to trust the Lord is going to take care of the decision that's been made and that its all in His hands. He only wants the best for me!
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