Dealing with spouse who has carcinoid cancer.

It's hard to say what is normal in various diseases. You might ask his doctor or do a Google search. My husband just died of lung cancer on July 7th. He experienced symptoms that I didn't expect until I looked it up online such as hoarseness, weakness, confusion, not being able to eat much etc. Just love him and let him know that you do love him everyday. Pray together often. My husband and I told each other very often how much we loved each other and it helped. I'll say a prayer for you.
PML

Hello @tkredmon and welcome to Mayo Connect.

We have a support group for patients and caregivers who have Carcinoid/NETs cancer. Here is a link to those discussions. https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

By posting your questions and concerns in one of these discussions, you will find a lot of encouragement and support from others who are also dealing with carcinoid cancer.

Will you post in the NETs support group?

very very sorry for your loss. take care now.

very very sorry about the difficulties.

Have been in many health support groups.

General recommended advice...is never worry about a problem, until you are sure it is a problem.

If you don't know it is cancer, don't assume it is.

Hang on, until you definitely know what is going on.

And if things get very rough, don't hesitate to get yourself some support with a therapist (in the real world).

Take care now.

@tkredmon, it is challenging to know whether certain symptoms are cancer-related or due to other causes like a common cold, aging, or a new diagnosis. But never hesitate to contact your PCP or your husband's cancer team when you have a concern, be it big or small.

Do you have an assigned symptom-management nurse that you can contact? Can you ask questions via a patient portal?

May I ask what symptoms are concerning you?

There is no management nurse on our case. When we ask questions I don’t feel like there are clear concise answers perhaps because there aren’t any. Fatigue is an ongoing issue with extreme diarrhea for over two years. Within the last couple months he is now having dizziness. The potassium level was low so have been instructed to double dose on it. Chromium A has been on the rise for the past three months so going in for another pet scan next week. Doctor keeps telling us the carcinoid cancer is not a serious cancer and people usually don’t die from it. We have been dealing with this for many years now and it’s definitely on a downward trajectory.

@samcal9977zz I really like your “advice”! Will save it to use it! Becky