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New NET in liver and small intestine
‘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
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@tjstaufr How are you handling the PRRT so far?
I have stage 4 with primary in Duednhm and went through liver ablation treatment last November. By March, tumor was still growing. Have now started PRRT therapy and have had 2 treatments so far. Fingers crossed
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2 Reactions@djchambers It sounds like a plan of attack is in place. That sounds great. Do you know what chemo pills he is recommending?
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1 Reaction@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!!!!
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5 Reactions@djchambers OK. Good luck with everything.
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1 Reaction@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 .
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3 Reactions@djchambers How are things going?
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1 Reaction@dbamos1945
Thanks so much!
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2 Reactions@djchambers: regarding RX drug coverage - Medicare Part “B” has covered all injections done at the Dr office or hospital for my treatments.
Just an idea, but perhaps you could ask that your mail order pharmacy send the rx drug to be delivered to your Dr office (as if they were going to administer it!) - maybe they would bill rx as a Medicare Part “B”? Speak with your Dr.
Our cancer treatments are extremely costly. Health Insurance changes can alter our choice of best care. Be sure to read all the “fine” print! 🙂
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1 Reaction@djchambers Here is the link to initiate an appointment with Mayo Clinic:
http://mayocl.in/1mtmR63
As a returning patient, I hope some of the process is a little easier for you. Also, the most up to date phone numbers are listed.
You have had some great input from others. As you continue your journey, please keep engaging the folks here. Treatment isn't a cookie cutter. Our bodies are all different, so the treatment that works for us is all different. We can share what worked for us individually. We also can give you a shoulder to cry on. We all have needed ones ourselves. ok?
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