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Just diagnosed with PNET: Any thoughts on watch & wait approach?
Neuroendocrine Tumors (NETs) | Last Active: Apr 14 7:06am | Replies (30)Comment receiving replies
Hi @taf
I am one of the folk’s Colleen tagged.
There are several thoughts here. If your tumor is under 1 to 2 CM, surgery is tricky. My surgeon was going to remove my Pnet in the neck of the pancreas (Ki -67 < 3% non functional stage 1) and the size was 6x8 mm. He went in and did not see the tumor and did a partial pancreatectomy. I was prepped for a Whipple and had a lot of infections and sepsis from the surgery. It took 5 months to recover. 8 months latter a PET scan showed it was still in my pancreas and growing I decided to wait until open enrollment for better insurance, and I found a NET specialist Dr Jason Star and wonderful surgeon Dr John Stauffer at Mayo Clinic Jacksonville FL.
I had a modified Whipple leaving the head and taking the remaining neck and tail of the pancreas , spleen, gallbladder and 2/3 of my stomach.
The surgeon found the existing tumor and an additional tumor he removed along with 35 lymph nodes. Again, I had infections and ended up at a long term care facility on antibiotics and TPN feeding to aloe my gastrointestinal and stomach to rest for over 2 months.
So far, thank you Lord! I am 6 yrs post surgery and there is no evidence of disease and on no medication for this.
I do have several residual diseases that I added post surgeries and have 3 autoimmune conditions as well which could account for not healing quickly. That’s why they may wait as well. I was 57 at the first surgery and 59 at the second. Also I had 3 opinions and make sure you see a Net Specialist!!! One last thing, depending on the location, some surgeons may opt to do an enunciation procedure instead of the invasive Whipple. Do your research and ask questions, especially how many procedures they have preformed and the success rate. Wishing you well!
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"Cutting it out is the only cure!!!!" I have been belittled with that statement many times. I will share my thoughts. I am alive. I am thriving. Part of that thriving is an understanding that chemo sux. It is ok. It could be worse.
When I was first diagnosed with my metastatic PNETs, I met about 6 folks on here with a very similar diagnosis. Most had the cut it out is the only cure mentality. Unfortunately, several are either gone or struggling with the side effects of surgery that resulted in other surgeries. I believe that they have it far worse than I do. Learning from other personal surgeries in the past, the results are not a certainty. EM's experience gives some glimpses of that. Complications happen during the procedure. Recovery has its own set of complications. I also don't believe there is a cure for NETs. Through my journey, my NETs pop up all over on scans. But, most tend to go away. Those that don't, my care team at Mayo Arizona and I know exactly where they are. After 1 year of CAPTEM and now 1.5 years of just Capecitabine, I still get a slight decrease in metastasis every time. I will quote my main doc at Mayo. "If it ain't broke, don't fix it." I won't do surgery unless I absolutely have to. With the introduction of AI into clinical studies, pretrial research that took years will be compressed to months. The data analysis of ongoing and new trials will significantly reduce. Also, the cross referencing of drug successes across multiple cancers will be a lot easier to do. For example, I am on capecitabine now. Its original FDA approval was for colorectal cancer in 2001. It has also been effective for treating breast cancer. During a dermatologist appointment, I was asked why did all of my squamous cell spots on his watch list disappear. I learned that he prescribes capecitabine for challenging squamous cell skin care patients. He had no idea that capecitabine was being used for PNETs. He really didn't know what PNETs were. He is a great doctor that I have been going to for 25 years. Oh by the way, he is at Mayo.
I believe in riding the capecitabine train as long as I can. If something better comes along, I will consider that route. I don't feel anything else is better currently. We are all different. My main suggestions are do your homework. Listen to your doctors. But ultimately, you make the decisions. You will be the one dealing with the consequences.