Chapter 23: The Human Anatomy of Neuroendocrine Cancer (by Ronny Allen)

In the spirit of Neuroendocrine Cancer Awareness, I want to introduce you to Ronny Allen, a NETs* cancer survivor in the UK. He has been living with this disease for 7 years and has won numerous awards for his excellent blogging on the topic of neuroendocrine cancer. We have learned a lot from him!

The post I’m linking here is especially interesting and informative (and short). I also saw a post this week from the LA NET Patient Conference stating that NETs is the 2nd most common GI cancer behind colorectal cancer (if I can find the exact source, I will link it). So while it’s uncommon, it’s becoming less so.

Anyway, here’s Ronny. Click to read!

*NETs = Neuroendocrine Tumors

NETsfamous

Photo credit: Ronny Allen’s blog

 

Chapter 22: This is what recovery looks like

I’ll copy a few of my latest Facebook posts here for those who do not see them. Then I’ll add some new thoughts below.

June 21
Don has been home since Sunday afternoon and is doing great! Moving around just fine, eating anything, feeling pretty good! Thank you for all of the prayers. He seems to be a pro at this surgery/recovery stuff. I also need to send a big THANK YOU to my parents for being here this last week. They left yesterday morning and were a HUGE HELP with the boys and around the house. Mom is so sweet & amazing to help with some cleaning that I did not get to before the hospital stint began. I’m so lucky to have these wonderful parents in my life! XXOO ❤️

June 21 (later)
We have also been blessed with some AMAZING meals from some thoughtful and generous friends. Here is a pic of tonight’s feast, courtesy of Chef Demetri and Chef Joy. Wow. Pure deliciousness. I have not remembered to get pics of all the food (I know you are happy about that), but I *have* remembered that I want to thank them. XXOO Thanks also to Kathy C (not on fb) and Winston (already got a shout out).

DonJune17-food

Chef Demetri and Chef Joy did not disappoint! Pork souvlaki, spanikopita, salad and cookies.

 

June 22
Hooray! We were able to surprise the boys at camp for family potluck night!

 

I don’t know what recovery looks like for others, but for Don it is quite impressive! I am stunned at how well he is doing. He’s up and moving around, eating well, taking his meds (a cocktail of about 10 meds, including Tylenol, ibuprofen and Miralax, every 6 hours or so). He has some mild pain, but the meds help with that. He reads, watches TV, takes a walk or two in the neighborhood and naps. He tires easily and so far has been good at knowing when to stop and rest.

I have the good fortune of working for a non-profit agency with some amazing people, so they are generous with the opportunity for me to work from home. I have been back & forth from the farm a few times this week, but mostly working from the house to keep an eye on the patient. Today I came home after being at the farm for a few hours and Don told me he had vacuumed the house and wore himself out, so then sat down to rest. That is good. I’m grateful he is paying attention to his body and not over-doing it. He is not supposed to lift anything heavier than a gallon of milk, so I am keeping my Honey Do list kinda short. Ha ha. “We” do need to add the new backsplash to our kitchen project, so I offered to crack open the box of tile, so he can carry them one-by-one and get to work. I don’t think he was keen on that just yet. It’s okay, I am very patient.

We are so touched by the calls, texts, cards, and food from so many. Thank you from the bottom of our hearts!

Chapter 21: What else can we do to make you feel cared for today?

DonHosp18June2017_WhiteBdCare

A great question

This is the white board question that jumps out at me in Don’s new room at the Duke Medicine Pavilion. My experience dealing with hospitals and medical staff is limited, but I have been impressed by all the caregivers since we got here on Wednesday.

The nurses and nurse assistants have been friendly, knowledgeable and professional – always wearing a smile and eager to help with whatever is needed. Response time/waiting has been minimal. The surgeon, Dr. Z, is no-nonsense while still being pleasant and always treating Don as a whole person and not just a diagnosis. There is also the entourage of 5-6 white coats that come through, usually with the surgeon; they are the Med students & residents. They gather outside the room and share the basics of Don’s case, and Dr. Z will quiz them a little. Then they come in, say hello, and observe as Dr. Z talks with Don.

There is one Med student, Brandon, who works closely with Dr. Z. He is a tall, baby-faced African-American who was in the OR during Don’s procedure and I guess is specifically assigned to Don (and probably a few other patients, I assume). He drops by a few times each day to say hello and check on Don. He is friendly and kind and seems genuinely interested in Don’s progress. He appeared in the new room (neuroscience ward) and was wondering what had happened for Don to land here. We had a chuckle with him when he realized all was well, it was just about bed space. Later that day I was heading to the cafeteria to grab some dinner and I bumped into him on the concourse. He recognized me, we chatted, and I learned that he has just started his 4th year of med school, so will graduate next May. I thanked him for all of his help. He warmly accepted my thanks and seemed to enjoy the interaction with me (i.e. patients/families of patients). I feel sure Brandon will be an excellent doctor one day and also I would be delighted if either of my kids grew up to be like him (caring and attentive)!

A few quick observations from the neuroscience ward: they didn’t have any urinals handy (the little jugs for men to pee in) and I wondered if it’s because most of the patients on that ward have catheters? Just a guess on my part, but this is where they treat patients with brain tumors, strokes or brain injuries, so I’m thinking they might be highly sedated and/or sleeping a lot. This would explain the nurse’s enthusiasm of having a patient like Don who was doing well, talking/answering questions, etc. I also noticed that the NA was not overly friendly, but she seemed to be good at her work. Don said she was very nice, but carried a sour expression on her face. I wondered if she was assigned to this ward b/c working with patients who were less interactive was a better fit for her? Ha ha. I’m weird; I like to think about these things. I did like her t-shirt: “Welcome to 8 West – where we have all the brains!”

Anyway, I don’t know if all hospitals are like this and I hope I don’t have reason to find out. But I can tell you that based on our experience here, Duke is doing things right. I may not ever cheer for their team, but I will gladly compliment their excellent medical care.


Sunday, June 18 – Breakout Day
Don came home today! Sundays at Duke Med are a ghost town so I had to do some maneuvering to get his scripts filled. Maneuvering means walk from the Medicine Pavilion to Duke Hospital to the Children’s Hospital to find the only pharmacy that is open on Sundays. It was no problem, but it is quite the hike! I think I have the floor plan mostly memorized now that we are leaving, of course. And when I got to the pharmacy, they had everything ready but one item, so I had to wait an hour so they could fill that. That gave me time to visit Starbucks and hang out in the Children’s Hospital lobby for a bit (ghost town, totally empty, which was awesome). Meanwhile, Don was eating his breakfast and getting dressed for our big breakout. We made it home about 12:45, just a few minutes after the boys had pulled away for Camp Cherokee (boy scout camp). But they did facetime with Don earlier this morning for Father’s Day, so that is good. I’m glad they were able to visit him in the hospital on Friday and Saturday.

Don is resting comfortably. Last time I checked on him…
Him: I’m trying really hard to turn on the TV.
Me: You want me to get it for you?
Him: No. I keep falling asleep, so I guess it’s not that important.

As we pulled into the driveway, he said, “Let the healing begin.” We are counting our blessings and grateful for all of the family and friends who have sent prayers, calls, texts, food, notes, etc. … we truly feel cared for!

A few pictures from the week, if you hover over the picture you’ll see a caption.

DonHosp18June2017 (3)

Grateful for the excellent care provided by Duke. Still gotta show my Tar Heel pride!

Chapter 20: The Big Day

6/14/17 The Big Day
Don was in good spirits as we headed to Duke yesterday. His surgery was scheduled for 2:00, so we needed to get there at Noon. His good spirits helped mine; we are a good team like that. I’m sure he was a little nervous, as was I, but mostly we were ready to get it behind us. At some point during this roller coaster ride he has said, “It seems weird to be talking about a major surgery like this when I feel fine.” Yes. Weird is an understatement. Cancer is crazy like that.

They got him set up in pre-op and then I was able to visit him one last time. While there he showed me his shaved belly and how they had to that because “each hair is a vessel of infection.” He found that entertaining. “Now I’m looking at all the arm hairs and realizing all the vessels of infection I have all over the place!” The nurse laughed. Dr. Z, the surgeon, was there when I got there. He confirmed the planned procedure — look around laparoscopically, remove tumors from liver, hopefully identify and remove primary tumor, which he believed to be in the small bowel. We agreed that sounded good. He figured the procedure would take 3-4 hours.

Then Dr. M, the anesthesiologist, came by. Wow, what he does is incredible. In addition to being under general anesthesia, Don would also have an epidural. This is for pain management after surgery and also to help with recovery. Dr. M described, “Back in the day, when someone had abdominal surgery, anytime the bowels were touched they would freeze up and stop working. Now when we use the epidural, it puts the bowels ‘to sleep’ so they don’t know they are being handled, so they keep on working. This allows for better and quicker recovery. When the patient’s bowels are working after surgery, they can eat and go to the bathroom, and recovery is much better.” Don will have the epidural for as long as he needs it – could be 3 or 4 days. Or maybe more?

So the time came and I gave him a kiss and told him I’d see him in a few hours. They wheeled him to the OR about 1:15. They would need about an hour to get anesthesia going and then they would begin surgery. They did begin about 2:20. My mom and Don’s mom arrived about that time, so we got some lunch in the cafeteria and visited there for a couple of hours. I got the OR update at 4:20, right when they promised (updates every 2 hours) and the update was “procedure is still in progress.” Ha ha, this was funny to me. I was glad to know they are in process, but some info would be nice. But … I felt like no news was probably good news. Carry on! The moms and I moved up to the surgical waiting room, which was very nice. We settled in and chatted some more there. And then we were buzzed with an update at 5:20! I was surprised to hear they were finished and Dr. Z would meet us in the consult room. He kept it to 3 hours. Impressive!

We met Dr. Z in the consult room and he said it went as he expected and Don was doing fine. He looked around laparoscopically, and saw what he believed to be the primary tumor on the lower small bowel (terminal ileum) almost where it meets the colon.  He removed that segment of small bowel, in addition to the ap-

AbdomenAnatomy

Can you find the terminal ileum?

pendix, gallbladder and lymph nodes. Then he removed the tumors from the liver, three spots, which resulted in the loss of about 25% of the liver.  We will get pathology reports on all of this in about a week. It’s great news that he found & removed the primary tumor! This will have a positive impact on Don’s health & longevity.

When I was finally able to see him, he was a little loopy and our chat went like this:

Me: You did great, honey. They got the primary and removed a small portion of bowel with it.
Him: What’s the bad news?
Me: No bad news. They removed the lesions from your liver, so you lost about 25% of your liver. That’s good.
Him: You can tell me the bad news.
Me: No bad news! He did see a few tiny lesions on the liver, but they were deep, so he decided not to mess with them. We can watch them over time.
Him: Really, what’s the bad news?
Me: The only bad news is that you have some pain and you are stuck in this bed for a few days.
Him: Okay, that sounds good.

He made it to his room about 8 pm. He joked/complained to the nurse that the tv screen was smaller than the computer monitor used by the nursing staff. As the nurse was leaving she asked if he needed anything, and he said, “Bring me some tools so I can switch out those screens.” Ha ha. He might be short a few organs now, but he still had his sense of humor. I am grateful.
———————————————————————————————–
6/15/17 The Day After
Today was a good day! Thanks to the epidural he is feeling good. He took a walk around the unit, ate some broth and even peed a few times (eventually)! I learned that hospital time is kinda like the Twilight Zone: goes at a snail’s pace but then the day is over. I’m so proud and happy he is making great progress. Special thanks to Pastor Mark Brainerd who came to visit and pray with us.

Don is eager to see the boys and I hope they can visit tomorrow. At this point I think he will be coming home on Sunday, but that is yet TBD. Again … grateful! Thank you for all of the prayers, texts, facebook messages and support!

DonHosp15June2017 (5)

Superman on his first walk down the hall

 

 

Chapter 19: Survivorship

Tonight we had the good fortune of attending the National Cancer Survivors Day celebration at our church. They had a panel of three local oncologists (general, surgical and radiation) who briefly presented on their approach to treating patients and what is new/coming soon in the field of cancer treatment and survival. While very little of what was discussed actually applied to Don’s situation (neuroendocrine is an oddball cancer, for sure!), it was very interesting and hope-filled. And sitting in a room full of cancer survivors is a good thing.

So when I got home I immediately saw a picture in my mind of how I have been feeling about all of this. My coworkers have heard me say “my foggy brain” which is true, but finally I could actually visualize what I mean by foggy. When you, or someone you love, gets a diagnosis like this, it impacts everything. It rocks your world. It seizes you out of the comfort zone (the normally good but stressful, busy comfort zone) and into a new plane of existence. As you can see here in the blog, I also call it the roller coaster ride, but now a little more bumpy.

BrainOnCancer2

My brain before cancer landed in our family

I bet that the picture above is similar to what we would see in your thoughts, too. Lots of balls in the air, mostly good, some challenging, all vying for attention.

BrainOnCancer1

My brain after cancer landed in our family.

It may be hard to see the foggy words, but they say:
Neuroendocrine Cancer —> surgery   —> recovery  —> insurance  —>
    monthly meds  —> symptoms

So this is the fog I am living in. There are probably other foggy sub-bubbles that I did not list here. Don probably has the fog, too, although this blog is my perspective, not his, so I won’t claim to speak for him. And I submit to you that while our fog at this moment is cancer, the fog can be any major stresser or trauma in our lives. I think my therapist friends and social worker friends would confirm this for me.

The opening speaker tonight said, “If you didn’t drop dead when you heard you had cancer, you are a survivor!” Right on.

Chapter 18: Pre-Op Appointment – COMPLETE

Today I had the chance to see the Duke Cancer Center in person. It is quite a place. The valet parking was again the golden ticket and it was 3-rows deep with parked cars! This place is very busy!

This time we were in the Morris Building which is where they have different clinics. We had to report to Clinic 2D – Pre-Anesthesia Testing Clinic. This is where they make sure those heading into surgery soon are “as physically safe as possible and prepared for surgery.” At check-in Don charmed the receptionist, like he always likes to do, by telling jokes. This time he replied “I have never heard of her” when she asked if Stephanie was his emergency contact. She laughed and told him he might get beat up by me on the way home if he kept that up. Don has a wonderful way of using humor to put people at ease. I’m sure the staff there see lots of people all day long who are probably sick, exhausted, scared or any combination of those. Based on my observations, the staff appreciate it when a visitor (patient or family member) can lighten things up a bit. And Don is great at knowing when it is appropriate, or not. I love this about him.

They were running an hour behind, but what do you expect at a 2:30 pm appointment? I remember learning the hard way during pre-natal visits — morning appointments are quick, afternoon appointments are slow! So we went to the food court for a late lunch and killed some time. I even went into the Duke Bookstore to explore parking pass options. YOU KNOW THIS TAR HEEL DID NOT BUY ANYTHING IN THE STORE! I am a big fan of excellent medical care, but I do have my limits!

HeelsvDukeRivalry

Eventually it was our turn and we met with a couple of RNs and PA who checked the following with Don: vitals, current pain (none), gave him eating/bathing instructions for surgery day, physical exam, review of meds & medical history, signing of anesthesia consent, labs (apparently you have not had labs unless they are done there) and they gave him an EKG — everything looks good.

When Mary Ann the PA greeted us, the first thing she said was, “You need to know that I had a close friend who had this same surgery with this same surgeon last year – and you are in great hands!” She didn’t have to tell us that. But I’m glad she did. We already felt like we were at the right place, but that was even more reassuring. We learned that he will most likely be in the hospital for 5 days; or maybe less, if his recovery is good and post-op pain is manageable. She described the procedure a bit — if it is laparoscopic the pain will be lower and recovery quicker, if its full incision, the pain will be more intense and recovery slower. At this point, we are pretty sure the surgeon will start laparoscopically to “look around” but most likely will end up doing an incision to complete the tumor reduction/liver resection as needed. Don will get an epidural which will numb his torso in all the right places, which is good. Afterwards he and I can compare epidural stories, since I had two of them, one for each c-section. He was able to crack a few jokes about the urinary catheter (what man is not worried about that?) which kept us all smiling.

Don will get a call the day before surgery to confirm what time we need to arrive on the 14th. If he’s the first case of the day, we will have to arrive at 6:30 am. Oy. I did not get info about what he will need at home when he is discharged, because I realized that we need to get on the other side of surgery to know exactly what he will need. My parents will be here that week to stay home with the boys while I drive to & from Durham each day. They will bring the boys to visit a day or so after surgery plus drive them around to swim practices and other commitments. Anyway, I think we are as ready as we can be for the big day.

Special thanks to the D family for taking Sam to dinner & football practice tonight while we were tangled up in Durham, and to my friends S and L who were on standby, ready to give Colin a ride home from his driving lesson. Turns out we made it back right on time to pick him up. Yes – I said driving lesson! Yes – we have that insanity on our horizon, as well. The instructor was very kind and told us what a polite young man Colin was, and also that he did just fine behind the wheel. So, please cross your fingers for us, we need good luck on several fronts! And this is why we know it takes a village… We are so grateful for our village. XXOO

 

Chapter 17: Commencement

It’s graduation season, as you know. I have friends whose children are graduating from HS and college and to observe their experience from out here has been scary and fun. We’ll be there soon enough – Colin is a rising HS sophomore – and I’m doing my best to learn from these friends so that when our turn comes around we are ready.

A favorite part of this season is all of the commencement speeches that start floating around the internet. I’m sure you’ve seen a few good ones. Of course I admit that it’s way more fun watching a short commencement speech from my living room, rather than having to sit through those long ceremonies! But anyway, here is a favorite that hit my screen this week and I think it’s worth sharing. Enjoy for 11 minutes from your living room!

If you aren’t familiar with Greg Boyle, I highly recommend his book Tattoos on the Heart. It’s a breathtaking, beautiful memoir about his work with the homies (gang members in LA).

Chapter 16: Normal days

March and April were crazy and May has been a blink. It is now T-11 school days until school is out for the boys; and T-18 days until surgery. I’m not exactly sure where all the time has gone, but I can tell you that they have been pretty normal days, and for that I’m thankful.

Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. — Mary Jean Iron

Tonight was a fun night with friends at the pool – opening night! The pool is my happy place. There is nothing better than being surrounded by the friends who love you and whom you love. Adult beverages are a nice perk, too.

Tomorrow we are headed to a quick weekend at North Myrtle Beach, SC. The weather should be great and I can hardly wait to get my toes in the sand. Summer is coming!

I’ve had a few realizations the last few weeks. First – Don is a cancer survivor. Did you know that anyone living with cancer is a survivor? Enough of this “cancer patient” stuff. We are all patients of some kind. A survivor is someone who is living through the normal days and the rough days; someone who is pushing through to the other side. You will not hear me say cancer patient again. When you bump into other friends or family members who are in the throes of this disease reassure them that they are survivors!

Secondly – We have amazing friends. I already knew this, but I am so very touched by the friends who have committed to bringing us meals during Don’s recovery. When I gently informed him of this development, he said, “probably bringing food I cannot eat.” That may be true, we shall see. But I reminded him that if I don’t have to think about dinner, I can focus on taking care of him, and the children will still be fed! Of course he agreed and is thankful. I may need to stock up on Ensure and make sure the blender is working for his sake. No biggie.

The pre-op appointment is Tuesday, May 30 – just a few days away. I know we are both eager to go and learn more about what he will be facing in surgery. And I am anxious to find out what to expect when he is home for recovery. I foresee a few more blog posts in the near future.

It’s easy to not notice the normal days. Maybe we spend a little too much time looking forward to The Big Great Thing Coming Up and don’t appreciate the normal days? I know I’m guilty of this. The normal days where it may be close, but the kids get to the bus on time. The normal days where we can tick down the To Do List at work without too many interruptions. The normal days where we wake up a little tired, but healthy, and go to bed a little too late. The normal days where the kids bicker over stupid stuff but we still have three meals, cabinets full of snack options, drawers full of clothes, and a roof over our heads. The special days are great, but the normal days are where we live our lives. We are so very lucky to have normal days.

GVPbluewater

 

 

Chapter 15: We have a date

Don and his new BFF (the Duke scheduling lady) have planned his surgery for Wed, June 14. For the last week or so she would call his office and miss him; he would call her back and miss her; this went on and on, with little bits of messages left for each other, until finally they traded cell phone numbers and were able to connect. I think they will meet for coffee soon! LOL.

A pre-op appointment is scheduled for May 30. Originally on that day he was scheduled for the G-scan at Duke, but with surgery around the corner the scan will be postponed until a few months after his surgery. The Duke oncology team actually called Don this week to tell him Dr. Morse feels like they will see everything there is to see when they open him up, so no need for the scan before the surgery. It makes more sense to do it after, as the beginning of Don’s on-going check-ups and maintenance. This sounds good to us and I was delighted to know they were closely reviewing his case.

Don is feeling really good these days. Which begs the looming question – will surgery make things better or worse? I am learning that with cancer one big aspect of treatment is “how are you feeling today?” Paying attention to how the patient feels physically is an important consideration that needs to go along with the other aspects – is treatment working? Are the tumors going away/getting smaller? And of course, these questions mean different things for patients dealing with neuroendocrine cancer compared to other cancers. I decided to check in with our friend Brenda in Canada (see my Zebra post from March) to get her perspective. Almost 2 years ago she was diagnosed with Neuroendocrine Cancer and had 75% of her liver removed plus a section of her bowel (location of primary tumor). When we met her in March, she was the epitome of health! When I checked in with her this week, she described the chance she had recently to hear Dr. Liu speak (he is a rock star doctor in the neuroendocrine cancer world) and at the beginning of his talk he said the first three steps of treatment are:
1. Cut it out
2. Cut it out
3. Cut it out….
And how surgery is truly the best first line to progression free survival. So….we feel good about this decision.

Brenda did say eating and digestive issues can be a challenge following surgery, but for her things were fine after a couple of months. That is what we are hoping & expecting for Don!

Summer for the boys begins on June 12. Surgery date is June 14. Boy Scout Camp is June 18 – 24. Don will be in the hospital for about a week (June 14-20ish), and then home from work another 3-4 weeks. No rest for the weary around here! Although we will make sure Don gets plenty of rest starting June 14. We appreciate your thoughts & prayers as we take this next step.

June14

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.

UNCCancerHospLobby

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