Holy Mind F*ckery 🤯

Oh my what a mind fuck this all is. But a good mind fuck, because we are learning more every day, and it’s forcing us to take a pause, re-evaluate and keep fighting for the best possible outcome.

We’ve seen two more oncologists since we last updated you. (Keeping names anonymous for now.):

LIVER SURGEON #2

Not a NET specialist, but a highly recommended oncological liver surgeon. He believed our current approach is not nearly aggressive enough. It would be great for a 70 year old who wants to be more comfortable and get a few more years out of life, but not for Paul. Paul is still young and otherwise healthy, and he believes we should be treating much more aggressively. He, as well as every other doctor we have seen, still emphasizes that Paul’s cancer is not curable no matter how aggressively we treat, but a more aggresive approach might open up the possibility of being able to surgically resect more of the tumors and may be able to keep Paul here on earth a bit longer than the conservative approach would. In his words “The current plan being suggested to you is like going into a war with a pellet gun, when you could be using a rifle.” We really appreciated this analogy.

MEDICAL ONCOLOGIST #2

This oncologist is said to be “The Godfather” of Neuroendocrine Cancer. He has dedicated the last 25 years of his life to NET cancer, and treats only NET patients. He’s involved in clinical trials, studies, and has a multidisciplinary team and tumor board.

We honestly thought we had learned literally everything there is to know about NETs at this point, but he actually taught us a few new things we hadn’t heard elsewhere. He was amazing to speak with, and he spent almost 2 hours on a video call with us being incredibly thorough.

He agrees with Liver Surgeon # 2. Current plan is not only not aggressive enough, but also potentially dangerous, heart-wise. His thoughts and plan of attack below:

HEART COMPLICATIONS:

We recently found out that Paul’s specific type of tumors (“functional’ tumors which secrete dangerously high levels of hormones) put him at a much higher risk for developing carcinoid heart disease and “carcinoid crisis.” Because of this, he strongly believes Paul should first be treated to reduce the level of hormones, before going into any surgery, as well as get an Echocardiogram before surgery. (This has been something that has been relentlessly nagging at me for weeks, and I’ve been incredibly uncomfortable about it since researching it. I am SO grateful that he addressed this so seriously.)

One of the biggest reasons for the need for treatment and an Echo is that one of the main triggers for carcinoid crisis is anesthesia. Without first taming the hormonal secretion, it can put added stress on his heart and lead to major heart complications. (Ironically, we just completed Paul’s pre-surgical testing on Tuesday, and he did NOT get an Echo.)

SURGICAL SUGGESTION:

Regarding the liver — He said he is “not afraid” of suggesting surgery for Paul’s 15+ liver tumors, and strongly recommends seeing his surgical team to remove as many of them as possible. The more tumors we can remove, the more it turns the clock back. If we can somehow remove/ablate/embolize 90% of his tumors, that is like turning the clock back 10 years and can give Paul more time. If for any reason the liver surgeon does not think this is feasible (which is still a possibility), there are other treatments we can try such as PRRT (targeted therapy that uses radioactive material to shrink tumors), rather than just treating conservatively with medicine.

Ideally, he would love for Paul to have one surgery to address all of cancer at the same time. He suggests performing the bowel resection to remove the primary tumor, removing the appendix and removing as many of the liver tumors as possible all at once, rather than making Paul go through two major surgeries with two long recoveries. He also suggested removing Paul’s gallbladder as well. With any of the medical treatments that Paul will need, 50% of the time they cause complications in the gallbladder and gallstones. He suggests removing the gallbladder proactively to prevent this. This was not something we have heard from any other doctors until now.

TREATMENT:

He believes we should be treating with Lanreotide instead of Octreotide, as many studies have proven that Lanreotide is more effective than Octreotide, and that he considers Octreotide to be the “old dinosaur” of treatment options. He also thinks Paul should be starting this treatment as soon as possible, rather than waiting until after surgery.

WHAT'S NEXT:

This was lot of new and helpful information, and a LOT for us to think about. This appointment was just yesterday, and this morning the phone has been ringing off the hook from more doctors within his practice calling to schedule more appointments, lab work, echo, consultations, etc. This doctor seems really on top of things. Within 18 hours he has already set us up with the liver surgeon (potentially as soon as January 10, but TBD), a general NET surgeon on Jan 22, lab work for Feb 5, and a Cardiologist for an Echo and heart check on Feb 29.

We do also still have a new appointment on Jan 12 with a highly recommended oncologist at MSK who focuses mostly on NET Cancer. We’re very much looking forward to seeing her as well.

WE'RE SHOT, BUT GRATEFUL.

We’re both so overwhelmed with all of these opinions and appointments. We have honestly both been having many, many “breaking point” moments and just so much overall anxiety, sleepless nights, etc. This is a LOT, to say the least. However, we are incredibly lucky to have access to so many amazing doctors, and I would certainly much rather have too much information than not enough. We know after all of this initial madness/learning/researching/decision-making/wall-smashing, that things WILL start to calm down eventually. Eventually. But not just yet.

Thanks to everyone who continues to read and think about us.

Dayna 💛

IMPORTANT DISCLAIMER : We are not doctors. We are just normal, everyday people who are sharing what we’ve experienced, in hopes it might help someone else. Nothing in this blog, or anywhere on this website, should be substituted for professional medical advice. Perform your own fact-checks, make sure you do your own research, and consult with the best doctors you can find. It’s also INCREDIBLY important to note that no two NET Cancers are the same, and just because something did or did not happen to Paul, or does or does not work for Paul, doesn’t mean it will or will not work/happen the same way for someone else. Everyone is their own unique case, and every body responds differently to the cancer itself, as well as to the treatments. If you have a NET, please do NOT jump to conclusions based on Paul’s story. We’ve read many stories like Paul’s, but we’ve also read many miracle stories. We strongly encourage you to take this blog as an individual case study, and not as a prognosis for your own health.