New NET in liver and small intestine

Posted by djchambers @djchambers, Oct 19 2:24pm

‘Im a 74 yr old woman.
A NET tumor in my small intestine was removed about 18 months ago.
This month a CT found two new masses. One at site of previous surgery and a second in liver.
Liver biopsy confirms grade 3, well differentiated NET.
I’m still reeling.
Last week I had a regular PET scan (mistakenly ordered instead of PET for NET. Dr’s office now wants me to repeat PET with correct radioactive tracer this week.
I’m concerned about another PET so soon.
I consulted with Mayo in 2024 before my surgery in Louisville KY. All drs agreed on surgery as best strategy.
I have many questions:
1) Is it possible to have Mayo look at my test results and offer treatment input?
2) Is another PET so close in time to previous PET and CT a good idea and necessary?
3) My oncologist says medication is probable next step. What are likely meds and what do they cost? Also, does anyone have input on side effects and likely results from various meds? I’m on Medicare and med supp plan F. It’s open enrollment. Is there one or more prescription plans that are better at covering the costs of meds. I’ve heard they are expensive. Are some treatments covered by Medicare and Medicare supplements?
4) What about cutting off blood supply to tumor on liver? I’ve read about ablation. Anyone has that?
5) I still feel pretty good but thought there was something wrong due to deep fatigue. Last time I was extremely anemic. This time my hemoglobin is very good and blood work so far normal. Is that common?
Thanks you all!
Dorothy

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

Turkey, Volunteer Mentor | @tomrennie | 1 day ago

In reply to @djchambers "@dbamos1945 Thanks so much!" + (show)

@djchambers How are things going?

djchambers | @djchambers | 1 day ago

In reply to @tomrennie "@djchambers How are things going?" + (show)

@tomrennie
I’m at Mayo. I’ll see the oncologist here tomorrow.
The test results so far do not look great to me but I’ll know more after I see the dr. I’ll update then.
Thanks for checking in .

Turkey, Volunteer Mentor | @tomrennie | 1 day ago

In reply to @djchambers "@tomrennie I’m at Mayo. I’ll see the oncologist here tomorrow. The test results so far do..." + (show)

@djchambers OK. Good luck with everything.

djchambers | @djchambers | 11 hours ago

In reply to @tomrennie "@djchambers How are things going?" + (show)

@tomrennie
I saw Dr. Hobday today. He’s very encouraging about treatment possibilities. He thinks I likely should start with 2 chemo pills. They may shrink tumors. If that is the case and I can tolerate possible side effects it will be a good plan. But there are other possibilities as well. He also ran some labs and wants my biopsy specimen further tested. Definitely worth coming to Mayo.
Thanks you all for support!!!!