Welcome to the NETs Group! Come say hi.

Hello and those are the best hands to be in right now. Blessings to you as you go forward .

@mir123

I appreciate hearing from you again. How great that the tumor is responding to the treatment and that the lumpectomy might possibly be curative.

Yes, this has been a roller coaster ride for you. When you say, "I'm resigned to not "knowing" and proceeding in an authentic manner, but it has been baffling" I can understand that. You have had a lot of opinions and it is good to hear that you are accepting of where you are and how you will conduct yourself during the ups and downs of this process.

As you are having six months of chemo, how far into that six months are you now?

Thank you so much! This is a beautifully curated discussion group. This was discovered 5 months ago. I did indeed consult with a neuroendocrine specialist (University of NM), and the pathology was also confirmed with Mayo. Every doctor I've consulted has specified: 6 months of chemo, lumpectomy, 30 radiation treatments, and long term aromatase-inhibitor. However, I have kidney disease, a missing lung, and numerous co-morbities. I decided against chemo and targeted therapies, and was told I had 1-2 years to live. So I settled into that, working on quality of life. Now the tumor is responding well to the AI and my surgeon is very optimistic about possible curative rather than palliative effects of forthcoming lumpectomy. Obviously a roller coaster! There is almost no info on survival rates--in the only study anyone could find the participants all died too quickly for any kind of outcome. I'm resigned to not "knowing" and proceeding in an authentic manner, but it has been baffling.

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?