Something new every day

@maeve115
I need to add that the surgeon looked startled. Then he smiled and both of us appreciated the willingness of each other to learn together. Because of NETs my oncologist wanted me to check out the situation. It felt good that our oncologist, husband and I , and surgeon listened to and shared/ learned together.

You lost me at Montana!! Going there would be therapy in its own right. Thank you

@rkklinger
I would very much appreciate receiving efficacy results from his PRRT session(s).
Many thanks and God bless

@markmark007 I'll post after we get the results in our meeting at Mayo on 9/28.

I am sorry you are having to go through all of this at once. Your description of being in a bumper car getting slammed by angry clowns probably describes those first weeks better than most medical terminology ever could.

One suggestion I would make is take someone with you to your doctor appointments if at all possible. There is so much information coming at you right now that it can be very difficult to remember everything that was said. Have that person take notes, and write your questions down before you go.

I also wouldn't try to connect all of the abnormal blood work and MRI findings yourself before you meet with your doctors. Some things may be related to the NET and some may not be. Ask them to go through each finding with you and explain what they believe it means.

Being referred to palliative care does not mean that your doctors are giving up on you. Palliative care can be given right alongside cancer treatment and can help with breathing, pain, fatigue, anxiety and many of the other things that can make this journey so difficult.

I understand wanting to know exactly what you are facing. I am the same way. I would rather have the information, understand my options and then deal with what is actually in front of me.

And please remember that inoperable does not mean untreatable. If the mass is interfering with your airway, the radiation oncologist may have options specifically aimed at shrinking it and improving your breathing.

NETs are also very different from one another, so having doctors who truly specialize in neuroendocrine tumors can be extremely important.

Most of all, you don't have to figure out the entire journey this week. Right now, get the information, ask questions, take someone with you, and deal with the next decision in front of you.

And yes—I think everyone here understands wanting to get off this particular ride.

@jesicastorms
" Sometimes it feels like I am on an episode of defend your life."
Wow. What an apt expression. I am in a fairly good place now but it took five years to get-together a team that is willing to learn and finally talk to each other. Still, every time I see someone new, I see the incredulous responses .

For so long , I thought I was not explaining myself well until I realized that I was doing a pretty good job of it.. I was being looked at and treated like a horse . I was the first NET zebra my primary and first oncologist had met and what I was presenting seemed preposterous.

I hope you find someone to accompany you through this maze as you deserved to be seen, treated and cared for compassionately. What you report fits with others'experiences too. I like your astuteness. Here's to feeling some restoration of self trust and self appreciation for our advocacy in what can seem like such a high stakes game.