Something new every day

completely understand wanting to know exactly what you are facing. Sometimes the uncertainty and waiting for the next scan, blood test, or appointment can be almost as difficult as hearing the results.

One thing I strongly recommend is taking someone you trust with you to your doctor appointments. When you're first dealing with a cancer diagnosis, you're trying to absorb an overwhelming amount of information while you're still in shock. You may think you will remember everything the doctors tell you, but it is very easy to miss or forget important details. Having another person there to listen, take notes, and ask questions can be invaluable.

NETs can be complicated, and you're right that many people don't understand how serious they can be. Every NET is different depending on where it started, its grade, how fast it is growing, and where it has spread. Having a team that truly specializes in NETs is very important.

I'm glad you already have a palliative care team involved. Palliative care isn't giving up—it is another layer of support to help with symptoms, comfort, and quality of life while your cancer team works on treatment.

JesicaStorms
And a storm it is.. I appreciate your description. Thank You.
I find it always harder to not knowing than to start finding a solution or somewhat resolving or learning to accept what is. Feeling especially for you in the waiting time.

It is often hard having people not comprehend or even dismiss this particular type of cancer.
Two months ago I actually had a surgeon say about a concern I had that "Well, it is best to think horses when you hear hoof beats not a Zebra". I thought my husband and I were going to fall out of our chairs. I let out a laugh and he asked "Why?" .. I replied "Because I am a zebra". Click on the small photo below.. We framed it.. Needed it. Thinking of you .. In this together.

Thank you for the smiles. Sometimes it feels like I am on an episode of defend your life. I had an MRI yesterday and the tech, thinking she was an expert of all things, couldn't comprehend when I said I have NETS...she kept saying you mean METS--no. I really think she just thought I was lying. This is hard enough but the lack of compassionate treatment for those responsible for your care and well being angers me. This past week I have a ton of blood work and lab tests--some are not back yet but the ones that did come back do not look good. The MRI results came back yesterday afternoon and there are white dense masses deep within my brain. My red blood cells are messed up, which could be causing the masses in my brain but who knows?? It also may mean I have the beginning stages of dementia. Well, why not--just add it to the list. If I cannot find some humor in this, I will literally lose my mind, which may happen regardless. The best thing that has come out of this situation is my pallitive care team. They have helped more than anyone and I feel blessed to have them in my corner. Now, my love, I may need to get a tattoo of a zebra???? Have an amazing day.

@mcharlesfrancis If your Dr will allow it record your visit on your phone. My wife started this early on and it helped a lot we can listen to all his answers again and no notes to take. I also always start a question list before my next visit. Good luck!

@jesicastorms
Me too...
For me my Palliative Care team may not be able to perfectly coordinate or cure but they are steady in accompanying me.. and that is a solid contribution.

jessicastorms: Nets tumors have been found throughout our bodies, however discouraging this is, there are specific treatments to deal with them. After your tests, it is important to your prognosis that you have a consultation with a NET Specialist to determine best treatment. Regular Oncologists do not have the experience or current treatment techniques to address our rare cancer! For instance I had a PRRT Lutathera treatment at City of Hope 2 yrs ago that targeted all NET tumors in my body that were Seratonin-receptive! It seems like a miracle to have received this tumor specific drug! My result was dramatic tumor reduction. I am so grateful for the expertise NET specialists and the researchers have and are working to find a cure.
I am repeating my story to give you hope and emphasize the importance of a positive attitude while going through treatment! Best to you…

@dbamos1945 thank you for your comment. I believe I have a positive attitude and will use humor to lighten the darkness surrounding me currently. I think all of us dealing with this disease needs a little break in the clouds now and again.

JesicaStorms..
Yes.. May we all feel a break in the clouds today
And the warmth knowing that there are folks who get it and care..

JesicaStorms.. All of the comments are right on and a great example of the support you will get from everyone dealing with NETS. My husband's first tumor was in 1995. He was rediagnosed Stage 4 - 28 years later. He, too, has multiple tumors surrounding his brain. We have found over the years that a NETS specialist is most important in dealing with his rare cancer. We have found our NETS specialist and team at Rochester Mayo to be our life line. They explain everything that is happening to his body in terms we can understand. In 1995, there were no treatments. This month he will have his 3rd PRRT treatment. Our prayer is for stabilization. We are so thankful for the research that has happened over the past 30+ years. Today he has the option of a specific treatment that will attack the cancer cells. Your positive attitude will carry you through the tough days that come with dealing with cancer. May God bless you as you take each day at a time.

“NETS is not widely known so when you tell people you have cancer and what type, some think it's not serious. The reactions I have gotten from friends and medical personnel is absolutely eye opening.l
Agree completely. My local cancer clinic (small town) has a cancer support group who meet once a month. I found that very helpful sharing with folks who are more likely to understand what my journey is like. Of course, no one else there has NETs, but they are a good sounding board.
Also, I was able to attend a retreat for women with cancer. Again, no one had NETs, but I got a lot of support and encouragement. The organization that put it on was Cancer Support Community Montana. I don’t know if anything like that is available for you but it might be worth looking into.