New NET in liver and small intestine

@djchambers: I am sorry you are faced with this situation with NET cancer. Most of your questions can be discussed on the Neuroendocrine Mayo Site… info from patients like me with small intestine primary (many of us with metastases to other organs.., also Lacnets now has gone international with their helpful organization!). I urge you to carve out some quiet time to absorb this background info. Verify info. This rare cancer affects each of us differently - treatment resolution, tumor growth, and therefore our prognosis. We help eachother through decisions for our best results. Be proactive!
I hope you have a NET expert Oncologist in charge of your case. If not please know it is rare that a regular Medical Oncologist will be able to advise you of the best treatments available (including Clinical Trials) - they are most familiar with “other cancers”!
When I had tumor progression I chose Lutathera PRRT at City of Hope and had great results with only fatigue as side effect. There are many options. Surgery may be the best choice, but the surgeon MUST be proficient in NET cancer (our disease needs a patient NET surgeon dedicated to leave behind the most healthy tissue possible and ONLY remove disease!).
Your general health, desire for minimal recovery, excellence of NET Oncologist/Surgeon/Radiologist are some of your primary objectives. If I were you I would learn/research about my disease and treatments & then ask for 2nd/3rd clinical consultation at a major cancer center (University hospitals may have Neuroendocrine depts, Mayo Clinic, City of Hope will assist you with this disease treatment.
I am 80, have Original Medicare with United Healthcare Group Supplement insurance and have not seen a bill. I see that Medicare has paid promptly everything & the 20% UHC paid all remainder $. You want and need the best insurance you can get- I know the premiums are more than the touted Medicare Advantage, but you need immediate referrals, treatments, access to the best medical care NOW! That is my story. Dorothy you can do this! Hug,Bette
Best health for us! dbamos1945

Hi @djchambers
I am assuming you are in the U.S.? I am in Canada and, last year, I went across the border (Seattle) to have a non-invasive procedure called Histotripsy. At the time they were specializing in eradicating liver tumors (with plans to eventually include more organs). Perhaps you can look into this procedure and see if you are covered. It worked for me eradicating some of my smaller tumors and actually blocked a larger one. It was, however, very costly. They have hospitals in the U.S. (not Canada) that offer it. Another option.

@dbamos1945
Thank you so much for all the information. I believe I will try to get in touch with someone at the Mayo Clinic to see if they will take a look at my case. The phone numbers I had from 2024 are no longer the correct ones. Does anyone know who to get in touch with that mayo and their phone number?

Thanks again for all the information

@ricki8
Hi, thanks so much for the suggestion. I will try to get information on that.

I do live in the United States and have Medicare and plan enough of the Medicare supplement. Medicare and net insurance supplement covered nearly everything for my test and surgery and hospitalization in 2024. However, my prescription plan does not pay very much for prescriptions.

@djchambers
I'm so sorry you have to deal with a reoccurrance. I know how upsetting that is.
The best way to get an appointment with a Mayo net specialist is to request it through their online form. Be sure to identify the net specialist at whichever Mayo location you want to visit and ask for him or her by name.
When we did that, we heard back within a couple of days and got an appointment fairly quickly in Phoenix. You should be able to get their specialist info by location from the Mayo website. The specialist will go over the many different treatment options and will choose the best for your situation.
My husband sees the specialist at the Phoenix campus. He has medicare and a supplemental plan G and drug plan through United Healthcare/AARP. We've never had any coverage or cost issues. Taje advantage of open enrollment and fund the best supplemental plan and drug plan for you. Stay away from Adbantage plans. They are far too restrictive for this disease. Some drugs are covered under Part B such as the Captem protocol and lanreotide injections. Others are covered under drug plans. Some examples of drug optikns are are everolimus, sutent, cabozantinib, etc.
Mayo is excellent in helping to find resources if cost does become an issue. (They got the manufacturer of s very expensive drug to provide it at no cost)
Take a deep breath. There are lots of good options and you'll be in great hands at Mayo

I had hepatic artery embolization to reduce blood to liver lesions as well as liver ablation. Neither is a curative procedure but hopefully has palliative value, relieving symptoms and buying more time.
Was diagnosed at 69, now 71 and know just what you mean about fatigue.

@djchambers
It's great that you had coverage for some of your more expensive costs.
I was offered a 20% discount on prescribed Everolimus at $72,000. per year, but explained that my Histotripsy in Seattle was $225,000. and they relented and gave the drug for free. It doesn't hurt to ask.
Good luck!

@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?

@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! 🙂

@dbamos1945
Thanks so much!