Metastasized Liver NET tumors multiple lesions - 1290750

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alwaysforward
Metastasized Liver NET tumors multiple lesions - 1290750

Hello everyone my name is Kevin, and this is my first post on cancergrace. I am in tears as i type this. My father today after getting liver biopsy results we were told by his gastroenterologist that he has NET tumors, which have metastasized through his liver ( multiple lesions ). He has multiple, with average size 4-5 cm with the biggest one being 8 cm. We are waiting on more clinical results (tumor marker tests and etc) to arrive early next week to know that where is the primary site and hopefully how much and how far it has spread and how many more tumors are there. The doctor told us that in his professional experience he believes there are from pancreas but he is not sure. From what i have researched they might be non-functioning pancreatic NET cancer. Next steps he recommended is to wait to find out the primary sites and then consult with an oncologist ASAP and start chemo. He has currently no extreme symptoms that someone with this bad metastasized liver. The symptoms he has in enlarged liver ( bump in abdomen), weight loss and loss of appetite. No nausea,
constipation, stool, bleeding, (jaundice) or any abdominal pain. He is healthy as a thoroughbred. I don't know what to do till we find out the primary sites and how far it has spread. My mind is racing and thinking the worst that he has mere months left to live and there is nothing we can do. I am a very positive and strong person and i will fight with him. If anyone has gone through or answers regarding the condition and next options i would be really grateful. Thank you.

catdander
Hi Kevin,

Hi Kevin,

Welcome to Grace. I'm very sorry you're going through this but I'm sure your dad appreciates your being there for him. And I know how difficult it is to see someone who has always been the rock become someone who needs support. It really is a humanizing piece of life for all involved.

NETs can arise from anywhere there are neuroendocrine cells including the digestive system and respiratory system. The major info you're looking for next is where the tumor originated and whether or not there are driver mutations. Driver mutations are single mutations that drive some cancers that also have drugs that can slow or spot growth for a time such as EGFR and ALK. These are considered targetable mutations for which I believe you said you dad is being tested. There are also many trials that are testing promising agents that may also be an option if your dad is eligible and interested.

Unfortunately the only information we have about neuroendocrine tumors is that of NETs of the lung. Following are a couple of posts on the subject.
http://cancergrace.org/lung/2016/04/19/gcvl_lu_histology_specific_recomm...
http://cancergrace.org/lung/tag/neuroendocrine-carcinoma/

Let us know what is found in your dad's tests and perhaps we'll have more to add then.

Hoping for the best,
Janine

scohn
Hi Kevin.

Hi Kevin.
I am so sorry to hear about your father. I have nothing to add regarding NETs, but just wanted you to know there were folks out there thinking about you and your father.

I remember all too well the feeling of my mind racing and trying to assimilate everything in when we first found out about my wife and her NSCLC. I remember those times when I it seemed I would always need to tell myself just to stop and take a deep breath.

I hope the information they find out will lead you quickly to treatment that is effective and strong.
Your father is very blessed to have a son that loves and cares about him so deeply.

-scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

alwaysforward
Hey scohn, thank you for your

Hey scohn, thank you for your kind reply and i'm happy your wife is doing well thats amazing. Yea we are still waiting for the primary site and how far it has spread. Im praying and keeping a positive attitude but inside it is killing me at every waking moments. We have started him on a raw vegetables and fruits with wheatgrass and tumeric diet and cut him off sodium , carbs, dairy products and pretty much all processed food since thats the only thing we can do right now. I will update more as we find out, but more information suggestions as to what to ask oncologist and research and anything related will be breathing new life in me. Thank you.

alwaysforward
How is chemotherapy in these

How is chemotherapy in these cases ? Does it help shrink and and possibly surgery will be helpful in the future after growth stopage and/or any shrinkage ? Thank you.

scohn
Hi Kevin.

Hi Kevin.

One of the things they told me early on, and one of the hardest things to come to grips with, is that in a sense every combination of cancer/patient is unique. You will always need to consult with your oncologist, using the information about your father and the cancer itself, to determine the best course of treatment. Here is a general link I found on NETs that might be useful if you haven't seen it yet:

http://www.cancer.net/cancer-types/neuroendocrine-tumor/treatment-options

And here is an article from 2011 outlining advancements in treating liver NET metastases, so it may be a little out of date, as many types of more targeted therapies may have developed since then.

www.hindawi.com/journals/ijh/2011/154541

And it sounds like your father is in great general health, which is always a good thing for any cancer treatment.

It also sounds like you are trying to make sure he is eating right, so if there is one in your area, you may want to contact an oncology nutritionist for dietary advice as well. There was one available as part of the "team" at our cancer center.

Continued wishes for strength and comfort as you and your father navigate through these difficult times.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

JimC
Hi Kevin,

Hi Kevin,

I just wanted to give you my welcome to GRACE, and add a comment to the good advice you've already received. As you've already experienced, a cancer diagnosis creates a great amount of anxiety because there are so many unanswered questions and uncertainty. Putting a treatment plan in place will help ease some of that anxiety, just to have the feeling that you are doing something about the problem. Then the initial response to treatment will provide a better sense of where this is going. The mantra is "responders respond" (meaning those who respond well to one treatment regimen tend to respond to subsequent regimens), so we will hope that your father's treatment is very effective.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>