1. < Neuroendocrine Tumors (NETs)

A report from a follow up appointment

Posted by queensmom @queensmom, Dec 21, 2022

Hello !
Here is an update about what we discussed last week. I had an appointment ( second opinion) yesterday at Dana Faber. At least all my questions was answered and it was such a relief. The doctor said, the tumor was removed ( remember i did a small bowel resection on Nov 15th). And since the last MRI didn’t show the spread to any organ, ( that being said , i am not a good candidate for chemotherapy or other form of treatment) what i need to do now is screening after six month ( my first scan scheduled for May 2023), then a year . If no cancer seen then the next screening will be after 10 years. Moreover, she insisted that NETs (I have grade 1) grows very slowly, patients can live with it for many years. What are your thoughts !? ❤️

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 22, 2022

Hello @queensmom,

I'm glad that you posted an update. It is good that the doctor at Dana Faber did not view your NET history with great concern. It is only natural to worry, though. I do understand that. It sounds as if she is basing her follow up recommendations on the fact that your NET was grade 1. It is true that patients with NETs can live a very long time. I suppose your comfort level is what is important now.

It appears that you will have a follow up MRI in March and then one year later. If you feel uncomfortable with this type of follow up, it would be good to discuss it further.

Once you get through the second MRI and if there are no new NETs showing up, you can then decide how comfortable you are waiting 10 years. If you develop any symptoms or if there are other changes you should certainly look into the possibility of testing.

What type of symptoms were you having prior to your surgery in November? Have you had any symptoms since then?

REPLY
1 reply
queensmom | @queensmom | Dec 22, 2022
In reply to @hopeful33250 "Hello @queensmom, I'm glad that you posted an update. It is good that the doctor at..." + (show)
@hopeful33250

Hello @queensmom,

I'm glad that you posted an update. It is good that the doctor at Dana Faber did not view your NET history with great concern. It is only natural to worry, though. I do understand that. It sounds as if she is basing her follow up recommendations on the fact that your NET was grade 1. It is true that patients with NETs can live a very long time. I suppose your comfort level is what is important now.

It appears that you will have a follow up MRI in March and then one year later. If you feel uncomfortable with this type of follow up, it would be good to discuss it further.

Once you get through the second MRI and if there are no new NETs showing up, you can then decide how comfortable you are waiting 10 years. If you develop any symptoms or if there are other changes you should certainly look into the possibility of testing.

What type of symptoms were you having prior to your surgery in November? Have you had any symptoms since then?

Jump to this post

The symptoms that i had prior to surgery ( i am not sure if all these are NETs associated symptoms ) are;
Palpitations
Fatigue
Frequent urinating
Persistent cough
Stomach pain, and back pain
Now, i only have little cough and lower back pain.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 22, 2022
In reply to @queensmom "The symptoms that i had prior to surgery ( i am not sure if all these..." + (show)
@queensmom

The symptoms that i had prior to surgery ( i am not sure if all these are NETs associated symptoms ) are;
Palpitations
Fatigue
Frequent urinating
Persistent cough
Stomach pain, and back pain
Now, i only have little cough and lower back pain.

Jump to this post

So it does seem that you have had a reduction in symptoms, @queensmom. I would encourage you to follow up with the MRIs as suggested, but if you have any concerns or if your symptoms change and you feel the need for a more thorough follow up, please discuss these concerns with your doctor. It is also alright to seek another opinion.

What type of follow up plan would make you more comfortable?

REPLY
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