NETs found in lungs, abdomen, and lymph nodes

Hi Jessica, While I also have no knowledge of your symptoms, you needn't apologize for your rant as this is the place to do it. My nets are in the Pancreas, but I would advise you to not opt out of treatment, as there are some miracles that do happen and at the very least be sure to get a second opinion. Fair winds and smooth seas on your journey. Regards, Rick

Definitely make sure you are seeing a NETS Specialist, it makes a huge difference in your treatment plan.

Jessica Storms
Starting this journey can be startling, confusing and calls for so much research and finding resources which can assist. Along the way I have found solidarity and strength from others who walk a similar path.

To help with "Having little answers so far" I turned to find a NET specialist with a team of experts. I was able to go to Mayo Clinic . There are other spots too with Specialists who have NET tumor boards and the equipment/testing to use and people to read results well in collaboration.

To help walk me through the information and to provide moral support I have a great Social Worker at Mayo.
I also made good use of the Neuroendocrine Cancer Foundation folks. https://www.ncf.net/
I especially appreciated the one-on- one eight free sessions with a highly trained NET aware Wellness Health Coach https://www.ncf.net/healthcoaching.
There is also a Peer-to-Peer Program with someone you choose who has been through it. https://www.ncf.net/healthcoaching

As for your pondering about symptoms. It had to be determined what symptoms came from the tumor itself (intermittent bowel obstruction which before diagnosis had been described as just old age motility issues) to what came from the Carcinoid Syndrome. I deal with structural symptoms along with both bowel and lung Carcinoid Syndrome symptoms. I suspect that things will become clearer as you find the best resources for you and other NET folks. We are no longer alone.

As for your question : " Has anyone opted out of treatment?" I have not heard of anyone opting out of all treatment but know personally women who have opted to choose comfort care alone and did so with the support and understanding of working with Palliative Care and/or a Serious Illness Therapist and later with an end of life Doula. But here is the thing, while well prepared, they have found resources which have kept them going and appreciating their days.. and outliving initial expectations.

Wishing you well with your exploration and that you may feel others who "Get it" with you.

Jessica: You have received good info from my Mayo NET peers! Neuroendocrine cancer is not common to almost all regular Medical Oncologists, after you have confirmed diagnosis it is in your best interest in finding a NET Specific Oncologist with expert experience in treating your specific NET tumors (I.e. my primary is small intestine with metastases in liver - so my NET Oncologist team is led by gastrointestinal/liver expertise). This is your life changer because you need a team of experts to offer the best, most effective treatment to offer you.
There are several NET groups in the US that will be glad to help you in finding these experts (Mayo, City of Hope, Lacnets, etc). - search around and ask for help asap. The
Gallium or Copper Dotitate PET results will pinpoint tumors and the many Blood/Urine Lab results will give your NET specialists info to relieve symptoms, treatment to help stabilize tumors, offer surgical options, etc. Researchers of treatments for NET have given us many treatment avenues to control this disease.
I want to offer one last pearl for you: Oncology Treatments are not all filled with discomfort and chemical concoctions that make you miserable! Every NET patient’s body reacts different & Oncologists have many ways to relieve discomfort.
My only cancer treatment now is Lanreotide shot in the butt every 28 days at my local regular Oncoligist (I live in small town east of LA); however, two yrs ago when my tumors started growing I made the decision for 4 infusions of Lutathera, a PRRT cancer treatment at City of Hope where my NET Specialists provide my specialized care (2 hr drive to Duarte). Many of us are not lucky to find a NET specialist in our locality.
I never experienced any side effects from my PRRT treatments except for some fatigue. Now2yrs later my tumors have shrunk to their smallest ever, are stable and I get MRI scans often to stay vigalant on my tumor size.
I suggest you learn all you can from reliable medical sources. I’m normally not a “doctoring” person, so I understand your off-hand consideration to not seek medical treatment. This will be your decision; however, don’t let your fear allow you to deny the seriousness of your diagnosis. This NET is not going to disappear! You are strong and have the intelligence to make difficult decisions… I believe in you!

My cardiologist suggested I go to City of Hope. This will be something I will look into. For the next three weeks I have most of my scans and bloodwork scheduled. I also have a tumor on my right hilar lymph node which is partially blocking my air way, which I have been told is inoperable so I will be seeing a radiation oncologist for. Because I have gastroparesis the monthly shot may not be an option. In total so far I have about ten of these tumors, mostly in or on my lungs and around my abdomen. This has been going on for quite some time and I am trying to be patient but there are days when the frustration takes over. Thank you for your response

@maeve115 thank you. The knowledge you have shared is more than valuable to me. I am used to doing research since I am one year away from my doctorate in special education. The one thing that has become clear is all of us suffering from this disease are unique and no one treatment is applicable for each person. May I ask, my oncologist ordered a MRI with and without contrast of my brain. He mentioned he was concerned about my brain stem and from my research having NETs in the brain is quite rare. Do you have any thoughts on this?

@rdebeer I’m not sure if you are familiar with the Little River Band but one of my favorite songs is Cool Change. It is all about sailing on the ocean so your post resonated with me and I thank you for it.

@jesicastorms
Thank You for writing that the information was valuable. Helps!
The folks at Neuroendocrine Cancer Foundation (and others) may be able to assist in finding information about your situation. I am unable to answer your specific questions..
However, I do feel for you in your researching and am impressed that you already are asking the correct questions and getting to the City of Hope.
Congratulations on your Doctorate... Your intelligence, stamina in sticking to the hard work and your Special Ed heart will hold you in good stead in this NET endeavor.

@jesicastorms
What a great song: Thank You. I had never heard of it
Cool Change by Litttle River Band

@jesicastorms: I can fully recommend City to f Hope to you and I am glad you are considering a consultation with a NET specialist. Every time I visit their Cancer Center in Duarte I receive excellent care and leave thinking how grateful I am to have found an organization so fully dedicated to healing. They have campus housing for us who travel afar, transport trams, a park-like setting, accept most insurance, offer many support services and retain expert medical professionals of every speciality. Cancer patients receive the best advice, guidance and treatment.
We deserve the Best! dbamos1945