Chapter 12: Casinos and Cancer Centers 4/19/17
Yesterday was the visit to Duke Cancer Center. It had been on our calendar for over a month, so to say we were ready is an understatement. We like info and answers, and this was Step Two towards some kind of longer-term plan. (Not all cancer patients can think about a “longer-term plan” … you can bet we are counting our blessings.)
Unfortunately, Mother Nature had different plans for me. I was struck with the stomach bug on Monday about 5pm. Came on fast and hard. Ugh. I must have caught it from Sam, who had to deal with it Saturday night & Sunday (Easter!). Poor fella. I do not remember the last time I was that sick. It was not fun. But, thankfully, I was back to the land of the living in about 24 hours, and today (48 hours later) I’m fine. Needless to say, I missed the Duke field trip. Luckily, Don’s mom was free, so she joined him. I feel like it’s always good to have a 2nd pair of ears to help with the listening. Expecting any patient to remember all the info is a lot to ask!
Although I could not be there in-person, Dr. M at Duke suggested they include me by phone, which was great. I laid in the bed listening while he spoke with Don about the situation and the options. Here are the key takeaways:
- Dr. M sees 1 or 2 NET patient consults/week. These are one-time visits who seek his 2nd opinion but don’t return for regular care with him. (Could mean they are happy with their local providers who are probably not in Durham; does not necessarily mean they were unhappy with him.)
- Dr. M sees about 120 NET cases/year. These are cases he is actively involved with for regular care & management. Please note the big difference between this and the 20-30 cases/year at Cone here in Greensboro. Wow. (And the big case # difference between NET patients versus breast or lung cancer patients. The NET patients really are zebras!)
- He feels like we have taken the right first step with Dr. F in Greensboro by establishing the monthly doses of Sandostatin. He thinks that should continue.
- He asked Don to think about any notable reactions or change in how he was feeling the last few years. Don commented that maybe about 2 years ago he noticed a new reaction when he ate fatty foods (often fast food). He would not feel well immediately after, so stopped eating those foods. In hindsight, we now know that was the beginning of the flushing symptom of this disease. Dr. M noted that this could indicate when the secondary tumors were established (i.e. metastasized to the liver maybe about 2 years ago). Flushing is usually caused by the secondary tumors, not the primary. Remember these are slow-growing tumors, so it’s hard to know exactly when things started and when they spread. And in some cases like ours, hard to know where it started!
- As he evaluated Don’s scans, he observed three tumors on the liver. (We knew this, no surprise.) He felt like doing a liver resection would probably be worthwhile. This would be a surgical procedure that removed most (hopefully 70-90%) of the tumors, which often results in higher quality of life and longevity for patients. It is not possible to remove 100% of these kind of tumors … they tend to be scattered throughout. 70-90% tumor removal has been proven in clinical trials to make a difference for the patient.
- He also mentioned the fancy scans, which I was hoping he would. Duke has an octreoscan (one step above the scan here in Gboro) and it is often utilized. He felt it probably would not give us a whole lot more info than the scans Don has already had. Duke also has the G-scan (the newest, latest & greatest diagnostic tool), and they do maybe 2 G-scans per week. Wow, only about 100 per year! Think of all of the MRIs and CT scans that are done … and this one is only used twice/week!? He said we could do it (pending insurance approval & schedule) and it might give us some more diagnostic info (i.e. are there more tumors in there that are not showing up on the regular scans? Will it spot the pesky primary tumor that has been elusive so far?).
- After meeting with Dr. M, our call was ended, and Don later had the chance to meet with Dr. S, who is on the liver surgical team. Dr. S spoke confidently with Don about doing the surgery. He could go in, debulk the tumors on the liver and while in there also look for the primary. When timeline came up, he said it could be scheduled in 4-6 weeks. This was much sooner than indicated by Dr. F in Greensboro! It’s not that it is an emergency, it’s just that Dr. S doesn’t see any reason to wait 3-6 months, like Dr. F indicated. Don felt good about this.
- This is a good time to make note of the slightly different approaches from the docs we have seen so far. One doc says surgery is no rush, 3-6 months is fine. Another doc says we can schedule surgery in 4-6 weeks, why wait? I don’t think either of these answers are wrong. Each doc has her/his own approach — some are more aggressive, some are more cautious. What feels right for Don? For us? That is TBD.
- Next steps:
- At Duke, our next steps are to schedule the G-scan, and from there we will probably schedule a liver surgery. Could be June or July.
- We have the UNC appt on May 1. (It was bumped from 4/24 to 5/1.) It will be interesting to see what Dr. K has to say.
- After we hear from Dr. K at UNC, we will make a decision about where Don should anchor his care: Duke, UNC or Cone? I think we are leaning towards Duke or UNC, because they have more experience with this disease. But luckily, he can continue his monthly shots here at Cone, and the Cone team can be guided by the teaching hospital team (most likely).
When Don got home from Duke I asked him about the trip, maneuvering the medical center, parking (tip: valet is the way to go), etc. He said “That place is unbelievable. It’s like a cathedral. You know, it reminds me of a casino! All kinds of people, all ages of people, headed in and out, in a huge and impressive facility.” We laughed about that a bit. But it makes you go hmmm, doesn’t it? We have spent our share of money at casinos over the years (the amount we knew we could spend on entertainment) and we would always comment, “You know this place isn’t built on the winners.” Do Casinos build extravagant facilities to attract customers? (Of course they do.) Do medical centers build amazing facilities to attract patients? I think this speaks volumes about our consumeristic first-world economy. What do you think?
Whatever the answer is to that question … I remain grateful for top-notch medical care in our area.
Pictured: Duke Cancer Center Atrium, photo credit dukephotography.photoshelter.com