NET so worried

Hello @catherinemary and welcome to the NETs support group on Mayo Connect. I hope you will share more about your journey with NETs. As you do so, I'll help you to connect with other members in our NET group who are in a similar place.

I have had three surgeries for NETs, over the past 21 years, in the upper digestive tract. The only treatments I have needed are surgeries.

Is this a new diagnosis for you? Would you be able to share where your NET is located? I look forward to hearing from you again.

Hello Teresa, and thank you for your words of welcome. I am about to leave home for a short time however I will give a rundown of what’s been happening over the past few months a bit later today. Thank you, Cathy

Good morning! Still very very anxious about my appt with a medical oncologist at the Royal Brisbane and Women’s Hospital tomorrow. The oncologist at ICON cancer (a private group practice) made this appt for me.
Cheers, Cathy

Good thoughts go with you as go to this appointment, @catherinemary. Here is a link to a discussion, "Keys to a Successful Doctor's Appointment" that might help you to navigate the first meeting with the oncologist.
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
Will you post again and let me know how you are doing?

Thank you so much for this link! You are so kind to think of me in this way. I’m so anxious that my legs feel like jelly and even my teeth are chattering. I have a long history of anxiety and panic disorder (16 first panic attack, 73 yr old this year); That was brought on by my worry about a medical I had to have for my employment. So the anxiety re this appt is through the roof. My darling sister is keeping me afloat as best she can - so unfair on her to carry me like she is. My husband went into care this year as he was having multiple falls, one which req ICU. I’m trying lots of self talk to try and break how I feel down to manageable bits. Thank you for reading this and also for your kind words. Cathy

Hi @catherinemary - I am sorry to hear that you are going through this. I remember when I first learned of my NETs 6 years ago. I was floored. One of the things that I have learned over the years is to try to spend the time educating yourself about things like this and learning more about the disease. It helped me get my head around it and define a path forward. I can tell you that I figured that I was not going to make back then, and yet, here I am, still chugging along. One of the sites that I found helpful years ago was from the Neuroendocrine Tumor Research Foundation at https://netrf.org/for-patients/. I know it sounds cliche but knowledge is power and it helped me get under control and map out a plan. Sending good thoughts your way and take care of yourself.

Wanting to say “thank you” to those who took the time to send kind thoughts while I was feeling so anxious. Had the appt at the Royal Brisbane Hospital (I surprised myself that I could even get up out of bed to go tbh). The Consultant met with my sister, my daughter (a Dr herself) and me. No treatments offered yesterday; however I should hear back if a particular drug treatment would be beneficial for me. I see my private practice Oncologist on March 4th.
I should know more then.
With thanks, Cathy

I so appreciate your update, @catherinemary. I look forward to hearing from you again with any other concerns or questions.

Did the doctor give you a time frame for when you might hear back, or mention the name of drug treatment?

Hello Teresa …. The drug is the very very very expensive one (I haven’t got the name at hand); going to the public hospital to get it would cost nothing, but privately $10,000 a dose. I am thinking of switching my private oncologist to one who has a special interest in NETs. As you can probably tell, I am a bit all “over the place” and can scarcely believe this is all happening; but I feel well nevertheless. Many thanks, Cathy

Hi!
I am so sorry you are going through this. I just wondered if you were on Facebook? If so, Neuroendocrine Cancer-Ronny Allen’s Group is a great group as they are in the UK. He also has a Neuroendocrine Cancer FB page as well. Anything and everything you need to know are on this site. He also has a blog and provides the latest information on treatments and what’s in the pipeline. I am hoping you are already a member and also Dr Liu’s Zebra’s A Neuroendocrine Cancer Community is US based, but he has regular monthly FB live events.
I hope you get sorted with getting to a NET Specialist to oversee your journey. All the Best to you!