Chapter 14: You can’t always get what you want, but you get what you need

May Day 2017

We pulled out of the driveway about 9:30 to head to Chapel Hill. It was finally time for our 3rd opinion on this roller coaster ride – this time with Dr. K. at the North Carolina Cancer Hospital.

The UNC Hospital complex is huge, with tons of traffic, signs and construction. The casinos and cancer center question came to mind, once again. We got there easy enough, but it is quite a sight to see. Valet parking is a must. According to the plaque in the lobby, the NC Cancer Hospital opened in 2009 – so it is not yet 10 years old (new facility; long-established cancer treatment center). When I was a student at UNC I remember all the construction around the hospital area — I tried to avoid it at all costs! This newest building was completed since my time there and even now there is a new building coming up. Healthcare is big business and North Carolinians are lucky to have a resource like this – the state’s only public cancer hospital – available to them.

We checked in and were directed to the surgical oncology waiting room, a couple of floors up. Upon checking in there, the person at the desk asked if we had the our intake papers, which we explained we had emailed them to Susie a few weeks ago. We waited there maybe 30 minutes and were then shown to an examination room where a support staff person went over the basics and opened Don’s patient file in the system on the computer there in the room. She again asked about our intake papers and we gave her the same answer. (Hhhmmm…do they have Don’s records?) Then she finished her part and said the PA would be with us shortly.

So we waited. And waited. After about an hour I went to the bathroom, because surely the PA would show up while I was out of the room, right? I returned and she did appear 15 minutes later. She reviewed her understanding of Don’s case and asked him to chime in with clarification, questions or comments. She was great – knowledgeable, friendly and professional. She explained to us that she had reviewed his reports of lab work, tests and scans from the last few months and after leaving us she and Dr. K would look at the actual scans together, before they both came back to speak with us. We found this a little unusual – they hadn’t looked at the scans yet? The experience at Cone Cancer Center in Greensboro was seamless: when we arrived, we met with the entire cancer team one-by-one, and they had already reviewed all of Don’s scans and reports at the tumor board a few days prior. And at Duke, it was a similar situation – all of the medical team had already reviewed the records before Don arrived. Different processes in different programs, I guess.

About 30 minutes later PA returned with Dr. K. He was friendly, kind and straightforward. He talked a bit about carcinoid cancer (he did not use the newer, preferred term – neuroendocrine tumors) and metastatic disease, and how metastasis with this disease is different from other cancers. He asked Don about symptoms, how he was feeling, and how the sandostatin injections were working (they are doing a great job of helping him feel better/eliminating symptoms). He said good things about Dr. M and Dr. Z, the oncology team Don met at Duke. He talked some about the elusive primary tumor and explained that about 40% of the time the primary tumor is not found in NETs patients. But while doing the liver surgery, it would be easy to palpate the small bowel to look for the primary, because most likely that is where it is. Dr. K also agreed that Don should proceed with the scheduled scan at Duke (May 30) because it could offer insight that would be helpful prior to surgery. Although he said the Cone suggestion to wait 3-6 months for surgery was not necessarily wrong, Dr. K agreed with the Duke approach – go ahead with surgery sooner than later. Don is young, healthy, there is no significant reason to wait. Don is a good candidate for this kind of surgery on his liver (hepatic resection of left lobe; ablation of lesion/hepatic resection on right lobe) and if he were the first Dr. consulting with Don, he would recommend moving forward with surgery. He ended our time acknowledging that we needed to decide what next steps to take, and where, and they would be able to schedule surgery and offer Don treatment at UNC whenever we were ready. It was a valuable visit to Chapel Hill because it helped clarify next steps on the path.

We understand that we can’t always get what we want: a straightforward answer about perfect timing for surgery … easily finding the primary tumor … being cancer-free.

But we can get what we need: experienced, knowledgeable doctors … surgery to reduce liver tumor load … a gut feeling on what’s next.

If things go as we hope, Don will have surgery at Duke in mid-June. Stay tuned.


Pictured: NC Cancer Hospital, Chapel Hill, NC, photo credit to about/nccancerhospital.



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