New PNET Zoom Support Geoup

Because PNET's are considered a slow-growing tumor, I feel cast aside or valueless when it comes to this type of tumor. My PNET is on the tail of my pancreas and very hard to see via CT scans. It was originally detected on a endroscopy test. The doctor came into my room almost glowing because things look clear, except the very small growth on the tail of your pancreas. "Don't worry about it, they are usually not-malignant" The test was done at Rochester Mayo. Since that time my physician there has refused to do any CA19-9 tests, saying they really don't tell us much. Has not done another endoscopy to more closely monitor the PNET but did two CT Scans, 6 months apart. He has now changed that to annual CT Scans...no monitoring in-between those 12 months. So, they, "believe" it to be slow growing based off of how it behaves in other areas, yet this is a very rare (1/100,000) cancer. My brother died 7 years ago from Pancreatic Cancer. My sister died 10 years ago due to a malignant brain tumor. So, I have reasons to be a bit on the hesitant side when it is suggested that yearly monitoring will suffice. Mayo is considered, "the gold standard" in healthcare so I guess I shouldn't be questioning its plan of care (or as I believe lack of care).

@lanamarie I'm an age 82 male and was diagnosed with a PNET of 17 mm or .668 inch about two years ago. It took a year to get CT Scans and Biopsies done and luckily it did not seem to grow. Like yourself, I was told to wait and see for a year and just had another CT Scan with no additional growth. Problem is now they found a new PNET that was missed last year, and has now grown from 5 mm to 13 mm in one year. /This is almost certainly malignant, however I will discuss with the Doctor later this week to see if there are options. Surgery has been ruled out due to my age. I'm interested to hear your Doc's definition of "slow growing", and will share my Doc's with you, later this week. Keep the Faith. Regards, Rick

Hello @rdebeer and welcome to Mayo Clinic Connect. I see that you were diagnosed two years ago. Were you having symptoms that led to the diagnosis? How are you feeling now?

@hopeful33250 Greetings hopeful, thanks for your note.
No symptoms. My Pulmonologist sent me to get a CT Scan of my lungs, since I have COPD from smoking cigarettes for 40 years. Since the CT Scan also captured a view of my Pancreas, the PNET was discovered quite by accident. I have not had any symptoms with either the original Tumor or the newly discovered one that I can think of, except maybe being more tired all the time is related. I have felt that the tiredness is just old age. I typically get 9 hours of sleep each day, but it is never enough. Regards, Rick

@rdebeer
The story of your diagnosis is quite typical for NETs/carcinoid patients. Many of us were being tested for something totally unrelated and had no symptoms. This type of cancer often has no symptoms. Fatigue is very common with this cancer.

It is always wise to consult a NET specialist. NET specialists are not in every oncology clinic. At Mayo Clinic, all three locations have NET specialists. If you are interested in an appointment
for a second opinion, here is a link with appointment information: http://mayocl.in/1mtmR63.

If for any reason an appointment at Mayo is not possible, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

Have you considered obtaining a second opinion?

@hopeful33250
Thank you very much for the info. After tomorrow, when I see my Surgeon for his comments, I will likely try to find an Oncologist here in Las Cruces, NM, and then will also likely get the appointment over in Phoenix for the second opinion. Regards, Rick

@rdebeer
Great plan! Will you keep posting as you continue on this journey?

Yes, I'd be happy to keep posting. The fact that I have had a PNRT for a full two years, with no growth should bring some hope / good news to others that just having the Tumor is not the end. Who knows how long that could continue on. At 82 years old I have already outlived my Dad, my Brother, most of my 30+ co-workers so I have had a great life. Obviously I am quite concerned about the newly discovered Tumor since it has grown in size. I am hoping that doesn't necessarily mean it is terminal, also it has only grown from 5mm one year ago to 13mm now, so who knows? See ya in a couple of days........Regards, Rick

In reply to @hopeful33250 250
Discussed newest tumor with Surgical Oncologist yesterday, but he wants an actual Biopsy done before anything else. Since I had cancer of the kidney 22 years ago, he doesn't know if kidney cancer has metastasized to the Pancreas (big problem), or if it is another PNET (which may allow me some extra time). I was hesitant since I had two Biopsies done on the original tumor which were both "inconclusive". I suppose that since that was two years ago, and I am still alive, it proves the original tumor was not malignant. I have agreed to get another EUS Biopsy done by a different Gastroenterologist. This should be completed in early July and I will then report the findings. Regards, Rick

@rdebeer
I appreciate the update, Rick. If you have any other questions or concerns prior to the EUS biopsy, please post them. I'm sure you will be glad to have this behind you and have some understanding of the type of tumor you are dealing with.