1. < Neuroendocrine Tumors (NETs)
Profile picture for jesicastorms

NETs found in lungs, abdomen, and lymph nodes

Posted by jesicastorms @jesicastorms, Aug 22 7:42am

I am at the beginning of this journey and have very little answers so far. They are doing a MRI of my brain and a Dotatate PET scan. They have also referred me to a radiation oncologist because I have a large mass on my right hilar lymph node which is expanding into my mediasteinum and partially blocking my airway. Because I have gastroparesis, they are not sure the monthly injection for the NETS is advisable. When I attempt to do research about what symptoms I may experience, the information is quite limited. I have hair loss, extreme dizziness, pain in my upper back that goes around my rib cage, and constant headaches--not as severe as migrains but constant and wickedly uncomfortable. Does anyone else have these symptoms? Does anyone, what feel like a thousand doctors with little answers? I know I need to wait for the scans to be done along with four pages of labwork but after seeing the oncologist, I have more answerrs than knowldge. Sorry for the rant. Has anyone opted out of treatment?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for lindabees
lindabees | @lindabees | Aug 23 10:09am

You've already receieved some great advice and guidance from others but I'll throw in my 2 cents worth. There are net specific organizations that will provide you with a wealth of information in preparation for your follow up visits. In addition to NEC, there is NETRF.
http://www.netrf.org
They have a patient resources section including a Newly Diagnosed section that will guide you in what to expect and questions to ask at your appointments. They also have a state by state directory of net specialists, but if you're going to City of Hope in Duarte you'll be in great hands. But there are several specialists in California so second opinions are possible and actually a good idea given the complexity of your symptoms.
That site, like the other one recommended also has tons of informational videos.
Some additional advice: It sounds like you're being super proactive and that is great. Learn all you can about this disease before your appointment so you can make the most of it. Educate yourself enough to know if what any doctor tells you makes semse. Do not be afraid to ask questions
Be prepared to be your own best advocate regardless of the skill and knowledge of any doctor you see.
As to opting out of treatment, I've seen that as an option when the nets are confirmed to be very slow growing and non aggressive and aren't creating any problems.

REPLY
1 reply
Profile picture for jesicastorms
jesicastorms | @jesicastorms | Aug 23 4:49pm
In reply to @lindabees "You've already receieved some great advice and guidance from others but I'll throw in my 2..." + (show)
Profile picture for lindabees @lindabees

You've already receieved some great advice and guidance from others but I'll throw in my 2 cents worth. There are net specific organizations that will provide you with a wealth of information in preparation for your follow up visits. In addition to NEC, there is NETRF.
http://www.netrf.org
They have a patient resources section including a Newly Diagnosed section that will guide you in what to expect and questions to ask at your appointments. They also have a state by state directory of net specialists, but if you're going to City of Hope in Duarte you'll be in great hands. But there are several specialists in California so second opinions are possible and actually a good idea given the complexity of your symptoms.
That site, like the other one recommended also has tons of informational videos.
Some additional advice: It sounds like you're being super proactive and that is great. Learn all you can about this disease before your appointment so you can make the most of it. Educate yourself enough to know if what any doctor tells you makes semse. Do not be afraid to ask questions
Be prepared to be your own best advocate regardless of the skill and knowledge of any doctor you see.
As to opting out of treatment, I've seen that as an option when the nets are confirmed to be very slow growing and non aggressive and aren't creating any problems.

Jump to this post

@lindabees unfortunately most of the nets biopsies found atypical tumors. I am a warrior as we all are. I plan on fighting until fighting becomes futile. I’m not afraid of death but I am not going out that easy!!

REPLY
Profile picture for lindabees
lindabees | @lindabees | Aug 23 5:20pm

I admire your resolve!! You've got this!

REPLY
Please sign in or register to post a reply.