Pancreatic Cancer Group: Introduce yourself and connect with others

Hello- I am not sure if I fit into this group so please let me know if there if there is another group that would be better for me. My name is Sherry and I was diangosed with a pancreatic neuroendocrine tumor (pNET) in October 2020 and just had a distal pancreatectomy (60% resection) with a splenectomy at Rochester Mayo on Jan. 4, 2021 at the age of 53. I am on the road to recovery and am starting to feel like myself again, but tend to be sore at the end of a long day. My tumor was fairly small 2.2 x 1.4 x 1.6 cm and was located in the head/neck of the pancreas. I have my first follow-up appointment with the surgeon on 2/11/21 and then in the afternoon (2/11/21) meet with our oncologist for the first time. I am a bit excited to know more about my particular cancer as my surgeon (Dr. Sean Cleary) informed us that my particular tumor was rare. I work full-time as a 911 Dispatcher (25 years) and volunteer part-time as a medic for our local community. While I tend to handle stress well given my occupations, I am a bit nervous about the recurrence of cancer to the remaining portion of my pancreas and wonder (and hoping) that Mayo will suggest monitoring it since pancreatic cancer is a silent creature. I would love to hear if anyone has any suggestions or had experienced this type of cancer. Also, I am an avid reader if anyone has any suggestions on books/reading matierals that they would be able to recommend regarding pNET, pancreactic cancer or how to stay sane and not worry. 🙂 Special blessings to all who are suffering/recovering. SK

Pain is draining - for both of you I might add. Has he been able to talked to the oncologist or symptom management nurse about the pain? They should be able to give him something to ease the pain.

Does this affect his appétit?

Hi Sherry,
My name is Tim and I am new to this forum and saw your post regarding your surgery. Hope you are feeling better. I am scheduled for an August 20th, 2021 distal pancreatectomy and my surgeon is also Sean Cleary. My NET is also located in the neck of the pancreas. During my consult a couple weeks ago, he said he would be removing my gall bladder and possibly my spleen as well. Just wondering since we have similar issues what advice you can offer for pre and post op. Thanks!

Hi Tim and welcome. It's uncanny how similar your experience is with @skkirby. I hope Sherry will return to give you tips for pre and post op. I think @hopeful33250 might also have some thoughts and tips to share.

Tim, what questions do you have?

The pain makes him less eager to eat. But fortunately his appetite has remained pretty good. We are struggling to find someone who will help to figure out what the pain is related to and what he can take for it other than opiates.

Hi Colleen,
I just have no idea what to expect from this surgery. I guess more than anything I would just like to know if there is a semblance of "normal" after distal pancreatectomy and what does that look and feel like?
Thanks!

Hi Tim, good luck with your treatment and surgery. My wife seems to be at the extreme for what her post treatment and surgery life is like but then her surgery was pretty extreme too. Her surgery was modified Appleby not Whipple like most. She also lost her gall bladder, spleen, adrenal gland 23 lymph nodes and 60% of the pancreas. As far as we know almost a year and a half out, the pancreas makes insulin and she not being treated for insufficiency other than Creon for digestion. Her biggest problem is the bile dumping due to no gall bladder. Everyone is going to be different. One thing that the doctors seem to be overly optimistic is how long your recuperation and achieving a new normal will take. They might say 2 months of even 6 months but don't be impatient it could take longer, it did for my wife. Our prayers are with you.

Hello again: thanks for the comments about PET scans. My husband has started chemo this week so we are just learning the rhythm of the 2 week cycles. So far his biggest complaint is stomach pain which comes and goes. It's not clear if it's related to the tumor. Docs seem to be unsure. Has anyone experienced this and found something that helps?? I am trying to keep up his spirits and mine. This pain seems to drain him.

Thanks so much for your response. I guess I know from my google search activities that it's going to be a long road to recovery. I just get really apprehensive when I think about everything that's going to be coming out of my insides. I'm not familiar with the Appleby, but I did a lot of research on the Whipple procedure as that's initially what I thought I would be having.
Thanks again for the encouragement!
Tim

Cannabis RSO.