Anyone have a crystal ball we can borrow?

We met with a bunch more docs this week. We could really use a crystal ball right about now.

NET LIVER SURGEONS  #3 + #4

Both are NET Specialists and both agree with Liver Surgeon #2 regarding a more aggressive approach. (See previous post “Holy Mind F*ckery” for Liver Surgeon # 2’s thoughts.)

Liver Surgeon #3 is incredibly familiar with Paul’s type of cancer. He has dedicated most of his life to treating NET patients. We really liked him, and he even gave us his personal cell phone number which was pretty freaking amazing.

He walked us through every tumor on Paul’s scans and showed us how he could remove each one of them. He’s pretty confident he can remove a very large quantity (90%). He admits he would not be able to get all of them out, and that there are very likely a LOT more tumors hiding in there that are not showing up on the scans (as is the nature of this type of cancer). But he believes that doing this surgery could potentially add some years to Paul’s life. (The problem is, no one knows know what that really means… One additional year? Five? 10?)

Liver Surgeon #4 — Also seems like an incredibly talented surgeon and overall loved his personality, too. He agrees with literally all of the above.

BUT THEN… THEN!…

We meet Medical Oncologist (NET Specialist) # 3. Ahhhh. NET Specialist #3 🥰. She is not a surgeon — she’s a medical oncologist who has spent most of her career treating NET patients and works closely with liver and colorectal surgeons in her group. She completely threw us for a loop. We both fell absolutely in love with her (as a human being and a doctor) immediately. We were strongly leaning toward this massive radical surgery… but she brought up some very valid arguments.

She does not think jumping into an open liver surgery now is appropriate. She is not saying “never” — just not right now. She thinks the #1 and #2 most important things are getting Paul started on treatment and getting the primary small intestine tumor removed ASAP. Then see how his body responds to treatment over 3-6 months and reevaluate.

She seemed confident she can give Paul a very good quality of life with treatment-only for now for his liver, and can reassess and change things up if/when needed later. If he ends up needing more aggressive treatment, they can use liver directed therapies or possibly liver embolization and less invasive surgical options.

She also said that these surgeons aren't talking enough about all the risks that could happen from a big, open, multi-organ surgery like they are suggesting. Lots of things that can go wrong, added issues, difficult recoveries, etc.

In addition, she absolutely disagrees with the fact that doing surgery will make Paul live longer. She thinks Paul can live the same amount of time with or without the surgery, and that his quality of life would likely be much better/easier without it. (This all of course based on his current diagnosis, provided no further spread happens in the future and the chemical makeup of the tumors don’t progress.)

She’d like to go back to liver surgeon #1 in her practice (who we also did really love), and put their heads together a bit. She said that liver surgeon #1 LOVES to cut, and if he did not suggest cutting, there is a VERY good reason for it. She thinks he is just trying to give Paul the best quality of life and not put him through what he considers to be unnecessary surgeries since these tumors will continue to recur even after they are removed — and he doesn’t believe it would ultimately change his prognosis in the end. We did really appreciate his take on this as well, and we know he had Paul’s best interest and quality of life at heart. (He even warned us during our first visit that we WILL find other surgeons who are going to suggest surgery, but that he truly believes it is not the best option for Paul at this time.)

THEY ALL AGREE ON TWO THINGS:

At a minimum, all of the doctors thankfully are in agreement that the primary Ileum tumor must be removed as soon as possible because it has the potential to obstruct Paul’s bowel, and that would be a whole extra nightmare in itself with lifelong complications. (This tumor is currently about 75% of the diameter of the “plumbing” it’s residing in.)

They are also all now in agreement that Paul should start treatment as soon as possible, regardless of what he decides about the liver surgery.

PAUL’S CONCERN:

The biggest issue Paul is facing now is that he does not want to have to go through multiple surgeries. (He’s had enough already, don’t ya think!?) If he has to get the primary tumor removed regardless, he’d rather have them go in and get out everything they can all at once, rather than getting one major surgery and a long recovery, and then potentially end up needing a liver surgery and another long recovery months later anyway. Dude just wants to get it over with and get on with living his life! And I can’t blame him.

ANYONE HAVE A CRYSTAL BALL WE CAN BORROW?

It is incredibly difficult when all the doctors you have seen are not only not in agreement, but also two radically different approaches — as well as a pretty even split of the opinions. Paul knows at this point he’s going to need to go with his gut on this and choose the path and doctors that he is the most comfortable with. It doesn’t seem like this is a “right” or “wrong” decision situation. The problem is, we simply don’t know if one avenue would have worked better than the other in the end. It’s not like he can try both and see how each turn out. ☹️

NEXT STEPS:

• Paul is getting a more detailed liver-specific MRI this Thursday, Jan 18, to give the surgeons an even closer look at the tumors.

• His first treatment (lanreotide) starts this Friday, Jan 19.

• One more NET surgeon to speak with on the Jan 22, but we already know she is going to push him towards surgery, because she’s already on the case and working closely with Liver surgeon # 3.

• Schedule the bowel resection surgery (with or without the liver surgery). We are really hoping to have a final decision and plan of attack within 2 weeks.

Sorry for the long post. We just keep getting more and more info and there is just so much to share.

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.