Seem to have Neuroendocrine tumors on every organ from Neuroblastoma

Posted by cms426 @cms426, May 3 2:07am

Born 1968 lived with Neuroblastoma 2 years. The tumors where the size of a baseball and 2 bananas along side my backbone. I had rare symptoms of eyes and hands trembling and would tip over to my side. I am 55 years old and am having another surgery to remove a ganglion tumor . benign form of Neuroblastoma.
I have Neuroendocrine tumors on every organ common from the cancer. Had the same surgery in 1987. it pushes against my spinal chord and my right kidney. surgery sounds good. but I'm afraid of the radiation. I had 33 rounds when I was 2 years old. What about the side effects. I have already had bad side effects. Will there be more.
Having proton radiation. Hopefully that is less severe.

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

Colleen Young, Connect Director | @colleenyoung | May 14 1:48pm

@cms426, I'm tagging @frendo, who posted here:
- Anyone diagnosed with a primary neuroendocrine brain tumour?
https://connect.mayoclinic.org/discussion/anyone-diagnosed-with-a-primary-neuroendocrine-brain-tumour/

See more neuroblastoma related discussions https://connect.mayoclinic.org/search/discussions/?search=Neuroblastoma

You've had a long journey with neuroblastoma and NETs. While not the same diagnosis, @hopeful33250 has also had NETs on several organs and multiple surgeries.

Studies have suggested that proton therapy may cause fewer side effects than traditional radiation, since doctors can better control where the proton beams deliver their energy. I hope that will be so for you too. When do you start proton beam therapy?

Teresa, Volunteer Mentor | @hopeful33250 | May 14 2:27pm

Hello @cms426

As @colleenyoung, said you have certainly had a long journey with NETs and brain tumors. As Colleen mentioned, I have had three surgeries for NETs in the digestive tract, so I understand, just a little, how difficult it is to face these recurrences.

I hope you take the time to read some of the links that Colleen posted above. Have you already begun proton beam therapy? If so, how are you doing?