Welcome to the NETs Group! Come say hi.

Hello @iverwig and welcome to the NETs support group on Mayo Connect. I am also glad that you found this forum. NETs are a rare disorder, and it helps to find others in the same situation.

I see that your original site of NETs was in your thymus. As you are comfortable doing so, please share how this was discovered. Were you having symptoms that led to tests that revealed this problem? I see that you also had chemo. What type of chemo did you have?

Hello, I am new to the site and I was diagnosed with a NET in the thymus last summer. I had surgery in February to remove the cancer. Once they cut me open they discovered the cancer had spread to my heart. I initially started with chemo and radiation last summer as they were reluctant to do the surgery at the time due to the location and size of the mass. The mass initially shrunk after my first few initial chemo treatments. The surgery was a huge surgery and took a toll on my body. The cancer ate at my right lung, diagram, and heart. I’ll spare the details of what was done but can share if anyone is curious. They were able to remove the cancer from my body. I’m still trying to recover physically and mentally.

I had two CT scans in the last 3 months and they will monitor me with scans every 3 months for the foreseeable future to check whether or not cancer has come back.

I am grateful for the surgery but I am concerned they may have to do surgery again because my most recent scan showed one of the stents they put in me is blocked and one of the sternum wires inside my chest has fallen off which has been causing me some pain where it’s seated inside me. I will be meeting with the thoracic surgeons in a couple weeks to find out what they will do.

I am grateful for this site as I have scrolled through and learned a lot about NET’s and different things already.

I have 2 NETS in my right lung. I am treating it with homeopathic tinctures, spiritual, and I did a vegan diet for 3 months. My CT scan in June showed the nodule had decreased in size from 1.8 to 1.3. It's nice to meet someone else with a similar situation.

My 3 tumors in the lower lobe of my left lung cause little breathing problems and some coughing in the morning.I have a CT/wo Aug 17. My only treatment for the last year, has been six homeopathic herbs and teas along with information I acquired from a book called "Marijuana cured my cancer and continues to do so", written by a women in California. Most of my treatments here are edibles I make infusing coconut oil and evoo with CBD and THC products. My source for this is another book written by another women called, "The art of Weed Butter", that covers multiple problems>

Hello @woundedwarrior1969 and welcome to the NETs support group on Mayo Connect. I'm pleased that your last scan showed improvement. This year I'm celebrating 20 years with a NETs diagnosis. I've had three surgeries but no other treatment has been needed. I hope that all continues to go well for you.

Does the lung NET cause breathing or coughing problems?

Hi @woundedwarrior1969, I moved your message about living with 3 NETs tumors for 50 years to this discussion in the NETS Support Group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

It is always inspiring to hear from a long-time survivor. Welcome.

I've had 3 neuroendocrine tumors(1 calcified,avocado sized)for 50 years. At 75 and opting out to keep my rib and entire left lung(tumors in lower section), I have been trying 8 different homeopathic tacts and after a year the last cat scan or pet scan 8/22 revealed improv

Hi @amd12 -- Are you still using this message board? Just wondering what the status of your case is and if they ever determined if you had DIPNECH. I have DIPNECH/Lung NETS typical carcinoids. How many tumors do you have? How large are the ones that are remaining?

LACNETS is having their annual NETS virtual conference on Saturday 6/17/23 from 8:00-1:00 PT with many NETS specialists speaking. You can register for free at their website LACNETS.org

Specialists from top facilities include medical and surgical oncologists, radiation, interventional radiology, gastroenterologist, etc. They'll discuss terms and concepts, surgery, imaging, treatments, clinical trials, etc. See details in the images below.

Anyone out the with Acinar Pancreatic cancer. Found in only about 1 percent of Pancreatic cancer so having no luck finding someone wit the same diagnosis.