Welcome to the NETs Group! Come say hi.

Deb1955: Welcome to the group! My wife was diagnosed in April 2022, and although we are nearing the end of a 9 month cycle of chemo (pills), with surgery coming up. We are fortunate to have a great multi-disciplinary team of NET Specialists ( a must), that has brought us along this trail of winning this battle against cancer. I remember how devistated we were after diagnosis. Now it's time to fight, we are here to try to help you along the way, I read this Forum every day and usually learn something new that will assist us, so make sure you take advantage of that. As the wife and say everyday, "We Got This!" 🙂

I'm having itching as well. No one seems to know why. I asked if it was because of the tumors but I haven't gotten an answer...

Happy to have found this support group! I have a near 6 cm paraganglioma from my left adrenal gland that’s lying on my aorta among other major vessels. I have a near 2 cm pheochromocytoma on my right adrenal gland, as well as a 4 mm nodule on my right lower lobe. I live in a very small town and can’t find a specialist near me & I’m so scared!

Hello all,
I am a 50 yo female diagnosed in Nov 2022 with stage 1 grade 1 net which they initially thought was appendicitis. Now, PET Dotatate shows tumor on ovary and another in vaginal cuff. These tumors are described as aggressive various tests show following growth pattern on the ovary: 11/8/22- 4.2 cm right ovarian cyst
12/27/22-4.7x6cm
1/10/23. 7.3x6.2
1/21/23. 9.4x7.6

Currently I am experiencing symptoms that are making daily life difficult. Surgery expected in next few weeks just waiting to schedule. I was just wondering what experience any of you might have had with aggressive growth and/or NET in female reproductive areas? Doctors aren't speaking to prognosis, and the information I find online varies from death in 10 months to chronic condition that may be life long?

I also have fast growing NET tumors. Chemo has shrunk my tumors considerably. My story is on this website I don’t want to repeat again.
I’m not a doctor, but NET is not curable from what I’ve read and been told by doctors.
But that doesn’t mean that you can’t live for I long time. Some of the folks on this website have been around for 8 or 10 years.
I tell everyone to go to a hospital that is familiar with NET.
GOOD LUCK

Get in you car and get to a hospital that specializes in cancer.
Have your primary doctor if you have one get a referral if your insurance company needs one.

Hello,
My darling husband, age 72, was diagnosed with a well-defined NET on his ileum this past fall. It was discovered because a crash on his electric bike required a CT scan. His tumor was biopsied at UVA Med.Center, and now he is being seen at MDAnderson. We live in El Paso, TX. He has a grade 1 tumor, but his mesentary" lit up like a Christmas tree" on another CT scan with PET dotate; there were many lymph nodes. Further biopsy of a lymph node in the left supraclavicular area revealed metastasis from the ileal tumor. He is waiting for a treatment plan from his doctors. He is very nervous about this cancer growing in his body. When he was at MDAnderson in Dec. he contracted covid and has a hard time recovering from that. He has a persistent cough and prepetually feels cold. He is finally getting his strength back, slowly and surely, but has too much anxiety. Anyone out there like him?

Hello @emmepoppins ,
So sorry to hear of your husband's diagnosis. My son has also been diagnosed with a grade 1, well-defined GI NET. He has had numerous CT scans lately due to other serious GI problems, and "cysts" were seen on his kidneys and spleen. We are waiting for the PET dotate test to determine is the cysts are actually NETS. But similar to your husband, my son's mesentery was described as highly usual, during a laparoscopy. We are worried that the NETs have spread to his mesentery. And lastly, I have constantly felt EXTREMELY cold since having Covid 2 years ago. But just in the past few months, it seems to have improved. It may be a long side effect of the illness, but will eventually recover. Tell your husband to be strong; there is much hope and successful treatment for NETs! He is fortunate to have your love and support.

Thanks so much for your response. Interesting that you have felt cold since having covid 2 years ago. My husband will be encouraged by the fact that it is finally diminishing. He has so much anxiety, and your response helps.

During a recent endoscopy, it seems they found an NET in the stomach. I am not sure what this means. I will be at Mayo in Rochester next week for some more testing. I have a question. Does an NET signal something is amiss in the endocrine system? I ask this because I have been dealing with dry, flaky skin, rashes, headaches, hair loss, and my nails are thin and soft. I also seem to bruise easily. I don’t know much about this whole NET thing. I am 64 and a widow. Thanks for any light you could shine on this.