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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 20 hours ago | Replies (1435)Comment receiving replies
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
Replies to "Hello- I am not sure if I fit into this group so please let me know..."
Hi @skkirby, I thought I'd stop by and check in with you. How are you doing?
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!
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@skkirby Hello Sherry and welcome to Mayo Clinic Connect,
It is just fine that you posted here in this group, however, I would like to invite you to a group discussion specifically for those of us with neuroendocrine tumors (NET). We do have some members with pNET and they have a discussion as well.
Congratulations on your surgery at Mayo Clinic on January 4. That has been less than a month and you should expect some soreness yet. When I had my first surgery for NETs (of the duodenal bulb) I was the same age as you are now. You should expect not to feel quite yourself for a few months. i found that it took me about six months before I was back to my normal energy level. I had an office job, though, and was not involved in physical exertion in the way you have been in your career.
You are right that pancreatic cancer is silent and so are NETs. So you have silence in both arenas. I have had three surgeries all total and so you are right that there will be periodic follow-ups to check for cancer recurrence. I would recommend that you sign up for monthly emails from the Carcinoid Cancer Foundation. Here is a link to their website, https://www.carcinoid.org/. When you go to the website you will be invited to join the email list.
Here is a link to the Mayo Connect discussion group on NETs, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/.
I would like to introduce you to @ronregency, who also has pancreatic NETs. I hope that she will post with you. Here is the link to her profile, https://connect.mayoclinic.org/member/180734aa00348c848446bce5bdbae32978841ebc8b/. You can read about her history with pNETs.
Mayo Clinic also has a NETs support group for patients. The group will be meeting this Thursday, Feb. 4 from Florida. It is a Zoom meeting so if you are available at 5:30 to 7 p.m. EST, or any part of that time, please join us. This group meets monthly so if you can't attend this month, perhaps at another time. Here is the information:
Join the NE FL Neuroendocrine Cancer Zebras for our monthly meeting.
Support Group Meeting
Thursday, February 4, 2021; 5:30 to 7 p.m.
Topic: Sharing Resources and Support
Michelle Walsh, LCSW, Oncology Social Work
Location: Virtual (Zoom)
You are invited to a Zoom meeting.
Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.
For questions or concerns, please call 904-953-6831
I look forward to getting to know you in future posts or in the support group. Will you post again after your next appointment?