Just diagnosed with pancreatic NET stage 1
I’m a 64 year old woman, I’ve have colon issues for decades among other issues. They found my tumor on a CT scan, I don’t think I have any symptoms because of all my other issues in play. Anyway, I’m devastated! It’s on the tail portion of my pancreas, 1c in size, well sectioned, slow growing. I had biopsy done with scope to confirm cancer. My oncologist surgeon had 2 options, wait 6 months and repeat CT so we had a baseline and check for any changes or surgery to remove it, which the tail of pancreas is removed and also remove spleen, tube running (for temp drainage) out of my nose. 4 immunization shots followed by 2 more. So I opted for waiting the 6 months. I’m so confused and scared it’s going to move to another area. If anyone has had this same issue please message me back with your decision. It’s been a month since I found out and I’m a wreck! Thanks
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I do hope that today is a better day, @c2pricorn66. Would love to have an update when it's convenient for you.
Fortunately, I never had surgery. Just chemo.
It sounds like you made the right decision. But it's a courageous decision and i wish you all the best.
Thanks 🙏 the size is around 19 X 16 mm
Day 1 NBM. On PCA pump for pain, Drain. Catheter.
Day 2 Surgeon said he can have soft diet. He developed fever, Blood Culture collected, CXR He is eating lots of fruits.
Day 3 Still on PCA, drain. Minimal abdo cramps. Pain 6/10 around abdo, key holes and drainage sites. Still having trouble walking due to pain.
Hopefully today D4 is different and better. I'll keep updating as day n weeks n months go by. Hope this help others to have ideas of the progress
The only cure is removal of the primary tumor before it spreads. A Whipple surgery is an option and I would recommend Johns Hopkins and be sure you are going to a NET specialist.
This sounds good, @c2pricorn66. Is he receiving pain meds through an IV? When will he start soft foods?
Hello @hopeful33250. We were told he is staying for 4 nights.
Plan was changed as operation went well, he didn't have to go to ICU instead he went to the ward.Hes got a drain. Last night he suffered from severe abdominal cramp 🥲 surgeon said it's normal post and it will go away 🤔
I am in a Clinical Trial (you need a doctor's request for this). Talk to your G.P. who can then look into it for you, unless you have the NETs program free in Ontario. I do think that being in a Clinical Trial puts you into a set of teams who are pro-active. B.C. Cancer has a large multiple-building space with everything you would need outside (a regular hospital). It is also positioned next to Vancouver General Hospital (for surgery). I was given a list of contacts for everything I could think of and more and someone is in touch at least twice a month. A personal Oncologist was assigned to me with a 5 member surgical team (specializing in NETs, incl. a nurse, a physician on call for urgent symptoms, counseling, pharmacy (they call me when needed).
Take care of yourself and your needs. Best of luck!
Thanks so much! I may see if my Ontario doctor will refer me to BC Cancer. I have been at Princess Margaret in Toronto since February with my 1.7 cm PNet and have yet to get an audience with a doctor to ask any questions. Can I ask you the name of the hospital or doctor? Many thanks .