back from Omaha, again...

Circled is the left lobe of the liver. This piece would eventually grow to become a full sized organ, if all goes to plan. It has a few tumors throughout, but manageable via wedge resections.

Here you will see my largest tumor, outlined in red. 6-7CM.

Note the IVC (inferior vena cava), and next to it, the 2CM tumor outlined in red. This needs to be dealt with before it grows into the IVC .

UPDATE: 1 year of scans was "officially" reviewed. It appears as though the tumor growth is stable in the liver, that is, minimal. So, that's good. Also, another NET patient asked me about the possibility for future resections after the liver takes its new form (post 2nd surgery). The answer, from what I have been told: You are limited in some cases, but you can still resect if necessary. RFA, Spheres, etc. is a more likely option though... Also, if all goes to plan, the liver grows back to its full size and you have a 100% functional liver & tissue. Dr. Botha showed me an example scan from another patients who had the same surgery. This patient is still Cancer free 3yrs after the procedure. At least from what can been seen on Oscan / MRI). However, this patient had a little better "tumor situation" prior to surgery. That is, less burden in places that might have been easier to remove than mine. A few of the other patients who have had the staged resection have had minor recurrences (addressed with speheres, etc), at different stages. Nevertheless, their tumor burden was GREATLY decreased overall. In my case, I'd suspect reccurence at some stage.

Original Post:
We are now back at home after a nice trip in Omaha. I underwent a few scans and met with the surgeon, Dr. Botha, to discuss my options for surgery. Upon review of the latest scans (MRI and Oscan), nothing new has been identified outside the liver. To me, this is not a surprise. That doesn’t mean it doesn’t exist, it’s just too small to image on the scanners available in the US. I will note that the MRI scanner at UNMC was quite good. It has given the best images to date, rivaling the scanners at UofC and Northwestern. The good news is that Dr. Botha feels that, after reviewing these scans, a staged resection would be the best route to go (as opposed to transplant). We did discuss PRRT, but I have instead decided to pursue surgery, if feasible. He will be reviewing the scans more thoroughly on Monday, but it appears as though things are still “relatively” stable. That is, there has only been minor (negligible growth) in one year of monitoring. That being said, any growth is bad in my book.

From what this last set of scans reveals, we can proceed with the surgery (actually 2 surgeries). As noted in prior entries, we would debulk the left lobe with wedge resections and cut (or decrease) blood supply to the right lobe (embilization). By decreasing the blood supply, this signals the left lobe of the liver to start growing. If the left lobe grows reasonably, we then remove the entire right lobe in a separate operation. There is a common misconception that once you proceed with decreasing blood supply to the right lobe, there is no turning back. This is not the case. If the left lobe does not grow, the second stage of the surgery is cancelled. If this were to happen, eventually, new blood supplies to the right lobe will naturally grow and return supply to that part of the liver. From what I recall, the ties inserted are also designed to eventually dissolve.

In addition to these procedures, we would also try to locate and remove the primary tumor and, remove the gallbladder. Dr. Botha did note that there are some areas of concern. There appears to be one deep-ish tumor in the left lobe, which may require RFA. Also, in the right lobe, dangerously close to my IVC, there is a good sized tumor (see images). These will need to be handled with care, and may cause some problems.

The possible side effects of this surgery are infection, bleeding, negative reaction to anesthetics, and liver failure, all of which can lead to death. These risks are low, but nothing to take lightly. Long term, likelihood for recurrence is high, but this is a chronic disease and a cure is most likely impossible with current medicine. Even PRRT would not present a cure, and carries a certain amount of risk as well. The trick is to feel comfortable with the path you choose, then go! I’m getting there, even though it has been a SLOW and emotionally trying process.

Overall, the initial outcome of this surgery relies on my current scans giving an accurate depiction of what it is truly present (in terms if disease / liver burden). As I have alluded to before, what we see on the outside is often not the whole story. Therefore, we discussed at length the option of traveling to Germany for a 68-Ga PET/CT scan at Bad Berka (I call it a Ga scan for short). He felt confident that we could proceed with the surgery without the Ga scan, but did think it was a reasonable step prior to moving forward. In short, Dr. Botha said that he would recommend my getting the Ga scan if we had the means… “If I had it here, I’d use it…” He also said that he would feel more comfortable with the surgery if the Ga scan were able to locate the primary tumor. Botha said that we have time to investigate the Ga scan, and that their office will help facilitate the process, if needed.

The reason why this Ga scan is important is because it has the potential to see metastasis in the realm of 1MM. Whereas with MRI’s, CT, Oscan’s, etc, it’s difficult to image tumors in the 1CM range. These small millimeter tumors are referred to as “Micro-Mets”. If I was to take this Ga scan in Germany, and it revealed that my liver (especially the left lobe) was riddled with micro-mets, I would no longer be a candidate for a staged resection. If this was to be the case, I would then turn my full attention toward PRRT treatment, and possible surgery at a later date (TBD). Nevertheless, it’s a reasonable scan to take and very much worth the time, effort, and expense involved. It’s not covered by insurance, so I’ll have to front the expense on my own and try to fight the insurance company. Good luck with that….!

Of course, the Ga scan would also be beneficial to see if the disease has spread to other areas, and, to possibly identify the primary tumor. However, it should be cautioned that even though this may be a superior scanning method, it does depend in part on the biology of my tumors. If my tumors do not uptake well, then they may not image entirely. -Medicine is not always an exact science. In some respect, it’s hit or miss. After the holiday, I will resume contact with Dr. Baum in Germany to discuss scheduling a scan at the end of January. If I were clear for surgery, I’d like to move on it sometime in February.

A Carcinoid friend was kind enough to email me their Ga scans from Bad Berka. This patient chooses to remain anonymous on the blog, but has given me permission to post an example of their scans. Nevertheless, they have been supportive and kind in answering my questions about PRRT and the process. Thanks for the info and help to date!!!

In the email, they wrote:

“Just wanted to give you an idea about the results that a 68-Ga PET/CT scan can give you.I am attaching one of my liver scans. A quick note of explanation. You will see 3 segments to the image. The top segment is an image similar to what you would see from an O-scan. In this case it is the PET scan image. The middle segment is the image derived from the CT scan w/ contrast that they runThe third segment is the fusion of the PET and the CT. The bright spots on the liver are my tumors from this view. I have about 4 cross section views of the liver, each showing the location of the tumors through the planes of the liver. I am sure that images like these would be very useful to any surgeon. When you view these images in their original DICOM format on a screen they are much more telling and clear than when you see it as a one-dimensional image. Even so, they are better than what the scans here (US) can do.”

This is a low res example from my Oscan. Try to note the tumors in the liver… they do not image as well as the Ga scan available in Germany. (Click Image to Enlarge)

Ga Scans, send via email from another patient, as noted above. (Click Image to Enlarge)

With all this in mind, I am now moving toward the Ga scan followed by a staged liver resection. I feel confident in Dr. Botha and the procedure, but less confident in what we’ll find after further analysis. My gut tells me there will be micro-mets and the surgery will not be able to happen. I try to be realistic about the situation. I no longer get my hopes up. And as cliché as it sounds, I take it all as it comes, and move on from there. At least now I have some sort of critical path to follow.