Friday – March 17, 2017
We had a great appt this morning at Cone Cancer Center – our first visit there. We were there from 820 to 1230 and met with the entire GI multi-disciplinary cancer team. To say we feel great relief is an understatement. Afterwards we came home, ate some lunch, and crashed for a few hours.
Last night I contacted my friend S who I knew worked on the Cone cancer team (support staff) to let her know we might see her there. Indeed, she had been assigned to our case and knew we were coming. She was able to give me some tips — it would be a long morning, bring water and snacks. And she gave big props to the team we would be meeting with. I guess you would expect this, since they are her colleagues, but it still gave us some comfort.
First we met with Dr. G the surgeon. He was great. He came in, introduced himself and said, “How can I help you today?” which Don loved. “Well,” Don said, “seems I have some tumors on my liver. Can you remove them? I’m open this afternoon.” So while surgery today would not work out, ha ha, Dr. G talked us through what future actions we are probably looking at and what next steps are in order. He described the common scenarios that our situation seems to fit and explained that many patients do really well managing this disease for decades. He said that while this was an uncommon cancer, it was not exactly rare – they do see maybe 20-30 cases/year at Cone. That is not very many, but as we spoke to the team, it was clear they knew a lot about this disease. They didn’t recommend anything that set off my red flags*, based on my research and talking to other NET patients online. This was a big green St. Patty’s Day clover in my book. (*What would have set off my red flags? A suggestion of chemo would indicate they don’t know what they are dealing with. Glory be, there was no mention of chemo.)
Dr. G said we know the secondary tumors are on the liver, but we don’t exactly know where the primary tumor is. Most likely it is in the small bowel (ileum) but we need to know for sure. If we can confirm that, it’s is the first thing he wants to remove. If we can remove the primary tumor, it will simplify things for treatment. More on that below.
Next we met with Dr. F, the oncologist/hematologist, she was also great. She explained the treatment that most patients in this situation get and how she recommends it for Don. More on this below. She also enthusiastically described a new treatment that will soon be FDA approved, available to NET patients, and offered at Cone. She said treatments for this disease are very promising. Another pressing concern was to see if things had spread anywhere further than the liver; and if there was any heart damage (common when patients are at this stage, due to the hormone, serotonin, released by the tumors). Like Dr. G, she seemed very knowledgeable about this disease and what treatment approaches were appropriate.
Other team members we met:
B – nutritionist – she was warm and friendly, talked about maintaining a healthy diet and watching weight (make sure he doesn’t lose much during the treatment plan; unlikely since he will not be getting chemo).
S – our friend the support staff – she was both comforting and professional, asked how we were doing, how the boys were, explained all the support services available to the patient, caregiver and family.
T – GI oncology nurse navigator – she’s the organizer extraordinaire. Impressive and very friendly & down to Earth. She had a big packet of info for us, that detailed all the info we discussed with the team, and reference info for next steps. We can call her anytime and she can get answers for any questions we have.
Each team member asked how we got to this point and patiently listened as Don described the abdominal pain in late Jan. and his visit to the ER on Feb. 1. The CT scans that night brought him to an MRI a week or so later, and then a biopsy, and then the diagnosis. We learned they have a “tumor board” every Wednesday to discuss new and current cases. At this meeting they review all the details of the case and consider approaches & recommendations for each patient. I find great comfort in this team approach. It’s not some small town doctor/oncologist making decisions in a silo. This type of cancer requires this kind of approach, since being neuroendocrine, it can affect numerous systems/organs in the body (i.e. just b/c it’s tumors on the liver does not at all mean it’s liver cancer; it is very different from liver cancer; or any glandular cancer).
Also worth noting, they were all impressed by Don’s good health. He feels good, does not have any of the troublesome symptoms of this disease other than occasional flushing. He hiked 5 miles last weekend with the scouts with no problems other than sore calves, which they all loved hearing (good sign his heart is healthy). His systems are regular, if you know what I mean , which they also loved hearing.
We had heard wonderful things about Cone Cancer Center and it exceeded our expectations. We are impressed and grateful.
– Next week Don will undergo a thorough CT scan on his chest to take closer look to see if the cancer has spread. This is the most common place (lungs) for it to spread from the liver. We pray nothing is found! But if found, it will give the docs insight on additional treatment plan, which is important. We need to know this!
– Also next week he will have an echo cardiogram. This will let us know if there is any damage to his heart. Hopefully not. If so, that is more information we need to customize his treatment plan.
– In two weeks Don will have his first “treatment” which is a monthly Sandostatin LAR injection. These are two shots (I think) into his bum that will alleviate the flushing symptoms that come from the extra hormones put out by the tumors. This treatment also keeps the disease at bay — it can keep tumors from growing (and in some cases, shrinks the tumors). This is the treatment that we have heard of patients doing well on for years. Hooray!
– Coming soon – another colonoscopy (his 2nd that is now due; after his first one 5 years ago**). We hope the doc will be able to peek into the small intestine and perhaps find the primary tumor. On the MRI they see some thickening in the ileum – section of small intestine that links to colon; it is likely that is the primary; but they won’t know for sure until they look closer. If nothing is seen on the colonoscopy, they will do an endoscopy (down from the mouth, to the stomach and upper part of small intestine), to see if they can find primary in stomach. The big hope is to find the primary tumor so it can be removed. (**Colonoscopy done 5 years ago – at 41 – b/c he had polyps as a child and we wanted to stay on top of things. A lot of good that did us – ha ha – but at least they kind of have a baseline of his normal, I guess. Of course, colonoscopy doesn’t normally look inside the small intestine.)
– What if primary tumor is not found? An exploratory surgery might come next, where Dr. G would “poke around” in the small intestine to hopefully find primary. This could be difficult, as there are 20-ish feet of small intestine in there! But I have heard success stories of exploratory surgeries finding primary carcinoid tumors, so that is good news.
– We also have an appt scheduled at Duke Cancer Center with Dr. M on April 18. Dr. M is considered the NET specialist in NC. We plan to proceed with the Cone Cancer Center plan of treatment, but see him for a 2nd opinion. I would like him to review records & developments here in Gboro and tell us if he thinks we are on the right track; or if he would recommend something different. If different, we will cross that bridge when we get there.
St. Patty’s Day feels pretty lucky today. And today the photo theme for Westminster’s Lenten photo challenge was HEAL. Here is the image I found this morning.
Pictured: snapshot of HEAL by Robert Indiana, on exhibit at the Boston University School of Theology library.