Has anyone chosen the Watch and Wait and regretted that choice?
I am new to this group and thankful for the insight offered by those who post their experiences. I am a 68 year old man in good health. A CT scan in February found that I have a 2.5 CM Grade 2 PNET on the tail of my Pancreas, confirmed by biopsy. I have no symptoms and am in the process of evaluating my options. I have an excellent UCSD Moores Cancer Center near me that I am using. After confirming the type and grade of tumor with biopsy I was referred to a surgeon who specializes in Pancreas surgery. She advises a distal pancreatectomy with removal of spleen also. I am probably going to have this surgery, but would like to hear from patients who have done watchful waiting with all grades of PNETS. What has happened in the course of your disease? Thanks to anyone who has experience with this.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Thank you. On the lightheadedness- I've only been diagnosed with NETs for six months. I've experienced a couple of profound episodes of being lightheaded that required me to suspend my activity and wait for the episode to pass. Was this what you experienced?
Thank you for the information.
My 1.7 cm tumor was incidentally discovered in April of last year. I had inconclusive biopsy. But Dotatate pet scan had uptake at the tumor site. Surgeon suggested watchful waiting for 6 mos.
Unfortunately tumor grew to 2.cm and I had my distal pancreactomy surgery to remove it in early January. It was now also in 6 out of 8 lymph nodes, with vascular and neural invasion. My surgeon was surprised by the pathology….
So, hindsight being 20/20 I wish I hadn’t waited to have the surgery.
I was diagnosed in 2012 with a NET on the head of the pancreas after 3years of symptoms and a few incorrect diagnosis along the way. I did the watch and wait for 7 years, in the 7 years my primary didn't grow it remained small, around 1cm. In 2019 I had Whipple surgery to remove the primary and a liver resection and liver ablation to remove two off my liver. I wish I had the surgery earlier as my quality of life improved greatly after surgery as mine was functioning. Wishing you the best in your journey, hopefully you will find the information that will help you with the decision that is right for you.
Thank you for sharing your experience. How was your recovery from surgery and how are you now?
Thank you. I'm so grateful you shared your comments. You speak to !y continuing concerns. You're in my thoughts.
I find your comment about lightheadedness interesting. Did you doctor indicate that this could be related to the NETs diagnosis?
I had two NETs on the tail of my pancreas both over 2 cms. They were both grade 2, well-defined tumors. I had a bout of pancreatitis caused by the tumors, and they found them. I had my distal pancreatectomy and splenectomy on March 6th, so, just over a month ago. They also took out 10 nearby lymph nodes. Of the 10, 3 of them were NETs. Because of the low grade tumors, my oncologists are thinking I might possibly be done with cancer; I go in today to see if they are going to do any adjuvant therapy to reduce the risks of recurrence. Fingers crossed.
As for whether I regret it, not at all. If we would have waited, the chance of metastasis to my liver or lungs was really high. It still could happen. But even being grade 2 tumors, they were growing pretty big. They had also started to move into my lymph nodes. Depending on the of type tumors, waiting can just mean growing and spreading. That was my experience at least.
As far as the surgery, he did a full incision, a full 12” long to go in and be able to run an ultrasound on my pancreas and everything to make sure he had the margins he wanted. I am not going to sugarcoat it. The first week in the hospital is pretty rough with a full incision. It sounds like it is less so with laparoscopy. You are managing pain and trying to get your digestive system running again. Still, no regrets. There are some people on here that have done day by day journals of their time in the hospital. I would read some of those as well.
Good luck. Sounds like you have a tough decision ahead of you.
Hello @augustine777 and welcome to the NETs discussion on Mayo Clinic Connect. I appreciate you sharing your experience with @billyfeet. It is good to know what others have experienced.
If you don't mind sharing more, what symptoms were you experiencing that led to the NETs diagnosis? Also, what type of diet did you follow after your discharge from the hospital?
I wasn’t experiencing any symptoms at all other than the bout of pancreatitis that put me in the hospital for scans (thank God) when they found the tumors. I had pancreatitis 15 years ago (I am 50), but after having my gall bladder out, I hadn’t had a recurrence.
They took about half of my pancreas, my spleen, and some lymph nodes. My glucose levels have been great, and there is no sign of diabetes. I have been on a low sugar, low fat diet. Low-sugar just to not feed any other tumors that might be growing (not sure how helpful that is), and low-fat to lower the digestive load on my little half-pancreas. 🙂 That has worked fine for me. I can’t eat a lot at each meal. It feels like my stomach is tiny, and if I eat too much I get quite a bit of pain. I have been eating more smaller meals throughout the day, and that has been working for me. Hope that helps.