Welcome to the NETs Group! Come say hi.

Hello everyone, I'm not sure I'm in the right group. My Dad is 69 and was recently hospitalized because he develoeped jaundice. He had a stint put in his bile duct, i believe, and they found 3 tumors in and around his pancreas, bile ducts and ampulla vater. One of this cysts was malignant and he is having a wipple surgery in a few days. He was told via a phone-in doctor appointment that he'll start a 6 month cylce of chemotherapy after the surgery. We are having difficulty getting a confirmation of exactly what type of cancer he has and what stage the cancer may be in. Is this something that is determined post surgery or after the chemotherapy has begun? I'd be greatful for any input or comments anyone has and I'm glad to have found a possible support group for what we are going through. thank you

Hello @heidiwat

I hope that your son is recovering well from his surgery. Has he sought a second opinion with Mayo or another cancer center? Any plans yet for further treatment?

@lisaonthegoco, welcome. You sound like a woman of action. Sitting around waiting for the other shoe to drop is not your style.

The spots on your lungs are likely small nodules. A lung nodule can be cancerous. But most lung nodules aren't cancerous. Lung nodules are small clumps of cells in the lungs. They're very common. Most lung nodules are scar tissue from past lung infections. Read more here: https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445

If I'm reading your post correctly, you're primarily concerned with the news that you have very slow growing carcinoid tumors and that a second opinion with an oncologist suggested they are not cancerous but may develop into carcinoid syndrome. Have I got that right so far?

Hello! Very naive here about where I have been and how concerned I should be. Maybe someone can direct me as to what groups I should be looking at…?
About 20 years ago, I caught pneumonia walking past anyone smoking and have had so much bronchitis over the years. I was sent to a pulmonary Dr. who discovered small lung tumors but they never said tumors only spots on my lungs. I was monitored every 6 months for 2 years then told nothing was growing.
Fast forward to lots of coughing and never Covid but…like most people bought a finger tip oxygen monitor that kept falling to 85%, I live in Denver, CO. So after a sleep test and Asthma testing and the “walk down the hall test” I had imaging and found more “spots” than earlier in my life. Also got a CPAP with oxygen for night time and found out my Vasal Vagas nerve deregulates my breathing. Next up a Broncoscopy. Was told that I have very slow growing carcinoid tumors…inoperable because of how many. A month of worrying later I had a cancer specialist Dr. tell me I do not HAVE Cancer but there is a 10% chance of having it develop into a syndrome and to watch out for the symptoms she listed.
So I have an Inogen portable low flow pulse oxygen machine to hike or do strenuous exercise and sleep with a constant oxygen connection to my CPAP.
It sounds like I should be doing something more? Or is this just a waiting to see if it develops into something worse? I was also just diagnosed with Anemia at 66 years old and just went thru the endoscopy and swallowing the camera to check my whole GI system. Nothing found so next month I have a Hemotolgy appointment because I need all the oxygen producing cells I can get.
Groups and information to look at please? Ps. I don’t feel bad at all just still have coughing fits some days.

Will I get an automatic link to the next meeting in November or do I need to request it each month?

I had trouble getting connected as I lost the link, but I finally got on the zoom broadcast. I did miss alot, I saw that it was recorded, is it possible to get a link to the full recording to see what I missed until I logged in?

@kim1965

All was going well post surgery on my lung until this past December when they found that the cancer had metastasized to my bones. Since then I have been getting a monthly shot in my rear plus a shot once every 3 months for the bones. Now the Doctor is suggesting nuclear medicine and I will have a call with the nuclear doctor tomorrow. Anyone familiar with this situation?

@heidiwat

You recently posted about your son's appendectomy which led to the discovery of a NET. I hope he is feeling better post-surgery.
Any success on getting a second opinion from Mayo or another research-oriented health care system?

Hello @littlecrown1966

I would like to join @colleenyoung is welcoming you to the NETs discussion on Mayo Connect. As you may already know, many NETs patients were misdiagnosed before ever receiving their NETs diagnosis. NETs is rare and as such, is not always considered. It is good that you finally were diagnosed.

I am so pleased that you are learning as much as you can about NETs and seeking support. This attitude will be invaluable as it will enable you to advocate for yourself.

As you may be consulting with Mayo Clinic in the near future, I thought you might find this video about NETs interesting. The presenter is a Mayo Clinic physician who specializes in NETs. He gives a very good overview,

@kim1965

You have been added to receive a notification for the next support group meeting in October. Please note that when you receive the notification, you must register for the meeting and then you will receive a Zoom link from the group's facilitator.

I look forward to meeting you!