Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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
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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.
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?
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>
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.
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.
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 @hopeful33250 I have no problem in sharing my experiences at all.
I was initially experiencing pain in my midsection, like a squeezing type pain. I can’t remember how long I was experiencing the pain prior to me going to the doctor but I would say at least a couple of months but it was probably longer. The pain would come and go and me being stubborn never mentioned anything to anyone to include my wife who happens to be a medical provider. To be honest I initially thought it was just indigestion and I had been healthy my entire life so I kept it to myself. I should have known it wasn’t indigestion because of the severity of the pain I was feeling. I would feel the pain on consecutive days and then I would go a few days without feeling anything. That was the only symptom I remember experiencing.
The week I was scheduled to go in for my annual physical I finally mentioned it to my wife and she told me to mention it to my PCP which I did. I was scheduled for X-rays and that is how they saw the mass.
In reference to the type of chemo I did a 3 day cycle every 3 weeks of Cisplatin and Etoposide. They gave me the Cisplatin on the first day and Etoposide all 3 days. I also had radiation the same time as the chemo. Due to the location of the mass they treated it like they would lung cancer.
I so appreciate you sharing your story, @iverwig. It is helpful to others to know that often this type of cancer does not have the same look and feel as other cancers do.
How much longer will you be having the chemo? Will you be having follow up tests or scans in the near future?
I actually finished my chemo and radiation treatments and I had surgery to remove the rest of the mass that was in me. The surgeons had to plicate my right diaghram due to the cancer destroying it. I had part of right lung removed, reconstruction of my vena cava and open heart surgery. I also have a sternum lock in my chest due to the damage the radiation did to my rib cage.
In regards to the scans, I have scans done every 3 months. They were going to just continue to give me chemo but after discussing my case at a tumor board they decided to just go with the CT scans. I had a scan done last week and there was no signs of cancer however, they discovered some other issues which would explain some other complications I have been experiencing. One of the stents they put in me is blocked. I had been experiencing pain on my right side they couldn’t explain until my scan showed that one of the sternum lock staples apparently fell and is sitting in my side. They also saw that my right lung is not opening fully. I have an appointment with the thoracic surgeon in a couple weeks to discuss what was found on the scans and although it hasn’t been mentioned I suspect they will need to perform surgery again.
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