Connect
NETs found in lungs, abdomen, and lymph nodes
I am at the beginning of this journey and have very little answers so far. They are doing a MRI of my brain and a Dotatate PET scan. They have also referred me to a radiation oncologist because I have a large mass on my right hilar lymph node which is expanding into my mediasteinum and partially blocking my airway. Because I have gastroparesis, they are not sure the monthly injection for the NETS is advisable. When I attempt to do research about what symptoms I may experience, the information is quite limited. I have hair loss, extreme dizziness, pain in my upper back that goes around my rib cage, and constant headaches--not as severe as migrains but constant and wickedly uncomfortable. Does anyone else have these symptoms? Does anyone, what feel like a thousand doctors with little answers? I know I need to wait for the scans to be done along with four pages of labwork but after seeing the oncologist, I have more answerrs than knowldge. Sorry for the rant. Has anyone opted out of treatment?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
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
-
Like -
Helpful -
Hug
1 ReactionDefinitely make sure you are seeing a NETS Specialist, it makes a huge difference in your treatment plan.
-
Like -
Helpful -
Hug
1 ReactionJessica 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.