Newly Diagnosed Pancreatic NET awaiting Distal Pancrectomy

Hi. My wife had a distal surgery in April 2022 for a grade 2b tumor in the tail of her pancreas. Just curious if you had any Chemo prior to the surgery as my wife had 3 months prior to shrink the tumor, removal of the tumor and then 3 months post surgery chemo. Her surgery involved the removal of about 3/4 of her pancreas, the removal of her spleen and 13 lymph nodes. She healed up well and was able to tolerate the chemo soon after. Had to go on enzymes when she eats. Unfortunately after several good scans in 2022/2023, the cancer spread late last year to an inoperable lymph node and she is currently on targeted therapy to control the spread. Hopefully you are in a much more manageable situation as it looks to be caught early. Best of luck to you!

Although every case is different I also had a distal pancreatectomy and splenectomy last May. They could not get a good biopsy prior to diagnosis so I had surgery prior to chemo as they were not sure that it was cancerous. Turns out it was in fact stage 3 so I immediately started 12 rounds of folfirnox followed by 28 days of chemo/radiation which I finished two months ago. So far scans and bloodwork have been good but I realize it’s still early and this cancer has a way of tearing its ugly head. I was curious to know how if your wife had radiation or chemo radiation. Wishing you both the best. This is a journey.

Hi @rginvictus, I add my welcome along with @stevm and @jolo24. I added your question to the NETs support group as well as the Pancreatic Cancer support group.

To help you prepare for surgery, I think you'll find these related discussions and the tips shared by member helpful as well:
- PNET Surgery: My recovery journey
https://connect.mayoclinic.org/discussion/pnet-surgery/
- What's recovery after distal pancreatectomy and splenectomy like?
https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/
And more https://connect.mayoclinic.org/search/discussions/?search=splenectomy

I'm also glad that it was found early. What led to your being diagnosed? When is surgery planned?

Hello jolo24. Thanks for reaching back. Im still pretty overwhelmed with so many new terms and so far my doctor has stated chemo or radiation is not part of my treatment plan, as of now. Im reading everything I can find, and there are many questions about my own condition that I still don’t comprehend. I do know it’s a multiple NET tumors on my pancreatic tail and my surgery is this Thursday. I believe my PET was negative for spread so its local, and they did do a FNA and stated it low grade 1, with a %.97. My surgeon is telling me, my treatment is surgery to remove the tumors, pancreatic tail, and possible lymph nodes and remove the spleen. I don't even understand most of your question, but all my hopes for your wife.

Thank you Colleen, I realized there is a separate NET group after my post, and tried to repost but it said wait for a moderator.

Well, it was surely found early, sort of. In Sept 21 they did a cat scan and found a baseball tumor in my bladder. Thankfully it was low grade and stage and excellent surgeon took it out. Thank goodness it’s still NED. During covid and things were crazy, but the scan also noted 3 tumors around my pancreas. Unfortunately, I was so focused on bladder care and treatment, the tumors were totally overlooked. My doctor did see them, and they were first thought to be spleenules, but even in 2021 the MRI said not Spleenules. My Primary care just said keep and eye on them, and that was it. Fast forward 18 months and new primary care doctor, who noted instantly three tumors around pancreas, is not bladder related. The last 4 months lead me to today. I have total faith in my my primary and she sent me to a high volume center, with an excellent surgeon. So far, I’m very hopeful for successful treatment with surgery. At least I know now, my PET was clean and the biopsy says slow growing - so real chance to get it out of my pancreas.

I will certainly review the links and thank you for moderating to help others, and for offering support to me. Smiles! Randell

Thank you for sharing Stevm. I suppose my doctor believes the FNA is a good result with very low grade and only local spread to spleen. I remember the oncologist at my first diagnosis telling me - you cant have two cancers at the same time. Hmm, nothing is certain. Best of luck to you as well!

My surgery is in three days, Thursday. Cross my fingers.

So confusing and scary to go through, for sure. We are still learning of options we were unaware of when my wife was originally diagnosed. You put your faith in the medical field and pray you picked the right one. You just want the cancer out and quickly. Our surgeon felt giving her 3 months of chemo to reduce the size of her tumor prior to surgery, then 3 months more after the removal to kill off the micro cancer cells was the way to go. She did not receive radiation at all throughout the entire process. Just chemo. Prayers are with you for a successful result.

I have recently been diagnosed with similar findings and labs results. What do you think about the program and physicians there? What facility are you at? Who is your surgeon, if you don't mind telling me. I would like a second opinion before my final decision. Best of luck with your impending surgery and positive prognosis.

Hello rginvictus,
How did the surgery go? Also, please share the facility where you are being treated. I was diagnosed with grade 2 (2.5cm tumor) in pancreas tail in September 2022. Since my dad had a very aggressive Pancan several years ago I elected to get tumor from body, tail removed; based on connectivity they have to also have to remove spleen and I had in one lymph node at pancreas without doing chemo first. I did have a lot of complications and overcame them and then started my post surgery chemo in January 2023. Advice is to walk after surgery as much as possible to get air out of lungs and abdomen. Best wishes in your journey; we are all rooting for you.