Welcome to the NETs Group! Come say hi.

Hi,
59 yr diagnosed with Pheochromocytoma or paraganglioma. The doctors are trying to find somewhere that does an MIBG scan, so they can see where it is located.
Adrenal glands where clear on CT scan.
Not much information on metastasis I guess it’s a wait and see. I’m bit nervous.
After reading about others on here I feel fortunate at this time. Sending all my prayers and positive energy to all of you.

I was wondering if anyone has had this tumor and what was that like in the treatment of it.

Thank you

Prayers for you

Hi! Pavlina here, 62 yo. Accidental CT scan of my chest discovered a mass in my abdomen in December. 16 cm mass on the tail of my pancreas. Multiple tests later I am going to a surgery on Feb.1. I will have a Ga dototate PET scan on Jan.26 hoping not to see spreading. Preparing for the worst, hoping for the best and leaning in God's hands.🙏

I just got the pathology results --Neuroendocrine tumer- NET/G1/Typical Carcinoid. I had a 9 mm left upper lobe pulmonary nodule discovered through previous test six months ago. Petscan showed no abnormal activity. I will be seeing my oncologist on Tuesday--- I have researched many options for treatment -- I am seriously considering finding a doctor who is more specialized since all information seems to indicate that this is a rare cancer. Any opinions?

Hi. I'm very happy to be part of this group. On December 2020 I had a Distal Pancreatic Splenectomy due to a NET state 1 on the tail of the pancreas. The journey has been rough in many days but for the most I have been great . I never had chemo and went back to work 2 weeks later. I have had a healthy life style for over 30 years and have been a healthy eater for the most part of my life. I will be 57 in 2 weeks and above all it has been GOD that has me here today. I still have my appointments and routine checks but everything looks good. Keeping a positive attitude, eating healthy and have an induvial relationship with God makes a huge difference when we have to walk through fire or storm.

Happy to be here!!

Hi,
Yes, thanks so much. She keeps wanting to cancel the appointment. Hopefully she goes. I will let you know either way.
Thanks,
Penny

Hello @pennypowell

I wish you all the best and I would like to support you during this time. Will you post an update after you see the medical oncologist?

Hi,
It is for me but not for her. She refuses to see anyone. We haven't found a NET specialist yet. We will see a medical oncologist tomorrow.
Thanks,
Penny

Hello @mir123 and welcome to Mayo Connect. You are correct that a NET in the breast is very rare. We do have a Connect member, @trixie1313 , who does have this diagnosis. You can find her discussion about this at
--NET of Breast
https://connect.mayoclinic.org/discussion/ned-of-breast/
As with all rare cancers, it might be wise to seek an opinion from an oncologist who is a NET specialist. Mayo Clinic has NETs specialists at each of their three facilities (Arizona, Minnesota and Florida). Here's the link if interested http://mayocl.in/1mtmR63. You can also find NET specialists at the Carcinoid Cancer Foundation website.

How long ago was this NET discovered? What type of treatments have been suggested?

I have a rare neuroedocrine tumor in my breast. It is treated as "ordinary breast cancer" but I am wondering if anyone has another experience?