(Spouse)Supports Stage 2

It seems like we all have a different journey from each other with this NET type cancer. NETs can be "well differentiated" and slow growing or it can be fast growing. I've had the slow growing version for many years. The type NETS your wife has will help determine treatment strategy. There are specialist for this type cancer. I recommend you seek one out if possible.

I have been very sick at times on this journey. My wife has supported me every step of the way with care and kindness. I married a fantastic nurse and didn't even know it! 🙂 The fact that you've asked about providing support has me believing your gonna do fine in that department. Good luck with it.

Good day! Thank you for the quick reply. My wife who has been diagnosed is a registered nurse as well. Also, she has been in the cancer field for over 10yrs. Initially, it floored her.
However, she is slowly trying to develop and maintain a positive mindset along this new journey.

The best thing you can do is make sure she’s referred to a NETS Specialist Oncologist/Surgeon. Do you know where her primary cancer is? I hope she has the slow growing type that can be handled with monthly injections. Please keep us posted & good luck.

I was diagnosed about 2 1/2 years ago, but probably had it 5 or more years before it was diagnosed.. No surgeries, started monthly injections, and had Lutathera radiation treatments.. Currently the tumors that were still growing have reduced in size.. After the initial shock, everything has been ok.. I am blessed to have my children and grandchildren close by.. As far as loved ones showing support, the realization that anyone of us can be gone tomorrow, has really brought us closer.. I really don’t have any major side effects, occasional nausea or cramps.. other than the monthly injections and continued stress of waiting for test results, my life is almost normal! Definitely seeing a specialist for this type of cancer is highly recommended.. my team is always so positive about my treatments. Best wishes and hope for a good outcome..

Hi @jayace2430 I'm sorry to hear of your wife's diagnosis
My husband was diagnosed with pancreatic neuroendocrine cancer 17 years ago and is still living his best life. It's wonderful that you're seeking out how to best care for her. Her background will be a huge asset in navigating this.
As a caregiver, I found the most important thing you can do is to educate yourself as much as possible. There are several national and international groups that have excellent resources to guide you in learning about the disease, the treatments, etc. Here's a few that I have found helpful:
http://www.netrf.org
http://www.netcancerawareness.org
http://www.carcinoid.org
There are others out there as well.
The next thing, as others have suggested, is to consult with a net specialist. This is still considered a rare cancer so general oncologists often don't have the required knowledge to properly treat this disease or know the appropriate sequencing of those treatments. This is not like other cancers as it is typically slow growing so it usually doesn't respond to traditional types of chemotherapy. You can find specialists listed by state on the netrf and carcinoid sites listed above.

My caregiver advice, that I wish I had learned earlier is to let your wife feel whatever she is feeling. She needs to work through this in her own way and time. She may not want you to try to solve everything for her but she'll always want your love, patience and support.

Please feel free to reach out to me with any questions. After 17 years, I've been at this caregiving thing awhile 😊

Hi, Yes she has an Oncologist Specialist doctor. Presently, she is scheduled for a mammogram(left breast) followed by an Endo appointment. Of course, she has not had a consistent appetite. There is weight loss. Often times feelings of exhaustion. Her spirits continues to be good. Hopefully, she will be informed what action steps will occur. She would never know how concerned I am. She refuses to open the CT scans that was taken a month ago. I feel extremely grateful to be able to share what is going on with this support group.

Glad to hear she has a NET Specialist Dr. This is a great group to be able to discuss feelings, worries & concerns, it has helped me immensely.
Has the Dr discussed the CT scan results with you both?
It sounds like you’re doing everything you can to support your wife; sometimes it just helps to know that you’re there. I wish you both the best!

Hi, here is an update!!!
She has been diagnosed with breast cancer as well. We have a meeting in a couple of days to discuss the best course of action to address this. My wife has been somewhat open to these new medical challenges. However, there are " ebbs and flows"( mentally) that are becoming apparent through her moment-to-moment experiences. As you are aware, NETs are being focused on. I am extremely grateful to be a part of this group. -:)