Well, we had our first visit at Duke today, with Dr. Pappas. He did not really have any surprising news or thoughts, but we do have a clearer picture of the scenario.
First of all, he does not think the lymph node is going to be carcinoid. As he put it, "People either get respiratory carcinoid, or digestive carcinoid, but almost never both." However, that node is significantly larger than normal, so it has to be checked out. As he also said, "This cancer is rare enough that even though I see about as much of it as anyone, I average about one a year." That means you check everything out, no matter how remote the risk.
So, Tuesday we go back to Duke for a lymph node biopsy. This node is directly beside her airway in the left side of her chest, so they are going to do endoscopy with a biopsy probe attached to the scope. When they get to the level of the node, they will punch a hole through the airway wall and gather the biopsy of the node. The airway will self-seal, and that's it. It will take 2-3 days for the result.
If it is not carcinoid, then he wants to proceed with surgery in the next few weeks. If everyone is shocked, and it were to be carcinoid, then we start looking at traditional cancer issues, and chemo/radiation/surgery all come into play.
Bottom line, Pappas believes that these are gastrin-produced carcinoid tumors, and that ultimately the cure is removal of the gastrin. Why does she have so much gastrin? The cells in the stomach that allow someone to absorb B12 through the gut are the same ones that inhibit gastrin. In a patient with pernicious anemia, like Dee Dee, these cells don't work. So the gastrin is produced unchecked. Because the tumors are secondary to the gastrin, if you remove the gastrin the tumors shrivel and go away.
So, the surgery he proposes is to remove the lower third of her stomach, called the antrum. Remember, the tumors are in the upper stomach, so he is saying to simply leave them alone. Gotta tell you, it feels weird to intentionally leave the tumors inside! He also said that because this is so uncommon, there is no single definitive treatment option. He thinks there is a reasonable chance that the folks at Mayo may give different advice, just because there are so few cases of this that there are no real clinical studies for everyone to agree upon.
So please pray for several things:
* Dee Dee as she has this biopsy/endoscopy procedure today
* Healthy lymph node, and that we would learn this quickly
* Continue to pray for the trip to Mayo, and really that the docs there would be in agreement with the docs here
* For our courage and strength. There is something hard about meeting the cancer docs and surgeons that propose to remove part of your stomach. It isn't new revelation, because obviously Dee Dee has known that this was coming. It is just the hard reality of it all coming into plain view.
Thanks to you all, and we'll update later.
Tony
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5 comments:
Tony and Dee Dee,
I am praying today as you go through the tests. I am so thankful to have this blog available so I can keep up to date and not have to bother you with phone calls.
The post with Piper's letter was absolutely AWESOME! Thank you so much for that...it was a blessing to me and I hope it is a help to you both right now as well.
In Him,
Beth Branch
Dear Tony & Dee Dee,
A lot of what you're dealing with sounds (and must feel) strange, including the part about leaving tumors inside, and trusting that they will shrivel up without the gastrin production. I understand your prayer that the docs at Mayo will be in agreement; that will make your decision much easier than if they disagree. So I will also pray for your wisdom and discernment in all the decisions yet to come.
From a card I had just recently found: "A day hemmed in prayer is less likely to unravel."
--So let us come boldly to the throne of our gracious God. There we will receive His mercy, and we will find grace to help us when we need it. Hebrews 4:16 --
Love to you all,
Linda Lee
Tony,
Thank you for posting updates about DeeDee's test results and what you are finding out from the doctors. Because Dr. Pappas has told you that this is a rare type cancer and even he is not sure what the Mayo doctors' recommendation will be in the way of treatment, you should definitely seek a second opinion before DeeDee undergoes surgery. It seems he is actually encouraging you to do so. If both opinions for treatment are the same, then all of you will feel more confident that this is the correct course. You know I love you, DeeDee and all those kids and that I pray for you every day. It seems you have had a lot on your plate to deal with recently but you have such a strong Christian faith that you will get through this much stronger. Just "let go and let God" handle this for you.
Love to all the family,
Aunt Mary Rose
Tony, Dee Dee and kids,
We are praying hard here in Florida. We love you all,
Donna
We are praying for you today as you have these tests. God is with you always. You have no better loved one to sit by your side. We are holding you close in our hearts and our arms.
Love in Christ dear friends,
Art and Sydney McCauley
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