Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

wjk | @wjk | Apr 23 9:50am

In reply to @carfbuch "Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my..." + (show)

Partial answer to your question, "Which procedure is better?":

https://jamanetwork.com/journals/jamasurgery/article-abstract/2811053https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8461253/

Colleen Young, Connect Director | @colleenyoung | Apr 23 6:16pm

In reply to @sheridanb "My husband, age 69 had some back pain about 1.5 years ago. Mentioned it to the..." + (show)

@sheridanb, I can imagine that your husband's diagnosis came as a shock to both of you. The side effects of chemo are so rough. Only 2 more treatments to go. How are YOU doing?

sheridanb | @sheridanb | Apr 23 7:42pm

In reply to @colleenyoung "@sheridanb, I can imagine that your husband's diagnosis came as a shock to both of you...." + (show)

We've had a challenging year. And I'll admit to some melt downs... especially when someone is nice to me 🙂 It's pretty rural where we live (55 miles to town) so we were used to going to town once every two or three weeks. Now I'm driving to medical appointments two or three times each week, so it is hard to have time for much else. A lot of our social life involved skiing or hiking or kayaking, and we still have close friends, but not the activities with them. I'm doing ok. Just hoping when the chemo is done that Dan will get some energy back. Though we're facing the next unknown when the chemo is done. I assume a milder form of chemo? Don't know what the future holds.

gamaryanne | @gamaryanne | Apr 24 8:08am

In reply to @carfbuch "Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my..." + (show)

A whipple seems extreme for a cyst. But at 3 cm can see their thinking. Laperoscopic? That must be a cyst in the tail so the direction may be a pancreadectomy not a whipple. Two different surgeries.

jswiss | @jfranc1 | Apr 24 8:11am

In reply to @carfbuch "Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my..." + (show)

Hello, I had the open whipple surgery in November. When I went to set up the Laparoscopic surgery, my surgeon only did the Open Whipple. The Open Whipple is typically around 4 hrs. (mine took 3.5 hrs.) The Laparoscopic surgery takes around 7-8 hours. I was 72 years old and he felt that being under anesthesia for only 4 hours is much better than the Laparoscopic surgery for 8 hours which made sense to me. He also said that difference is either an incision 6" long or 6 1' incisions also he felt that feeling with his hands gave him an advantage over the robot.....He also gave me the option of monitoring my IBMN which I quickly dismissed as I didn't want to gamble on when it will become cancerous. I was in the hospital for 6 days after the surgery, I was up & walking the next day. The biopsy revealed that I had Colloid Carcinoma. All 37 lymph nodes and the resection were clear....I have to be on Creon for the rest of my days but no big deal, I was diabetic before the surgery. I did not need chemo or radiation but need follow ups with a scan every 6 months. Hope that helps...

burksgrl | @burksgrl | Apr 24 4:23pm

In reply to @gamaryanne "@drmch Have you spoken to more than one surgeon? More than one oncologist? Everyone’s case is..." + (show)

@gmaryanne,
Interested to know, do you visit all the various provides in other parts of the countryor is it virtual. Trying to get a virtual second opinion for soninlaw, 4.5 year survivor. It goes better with a dr. referral, I know. Trouble is I don’t know which Dr to contact. Major midwest medical center, but the main Doc seems to be oncologist. He still has pancreatic tumor but no further growth or new lesions found. that team now says Hospice or Palliative care. which he doesn’t want at this point. Should he have another primary care doc who can maybe look in with fresh eyes? Any opnions would be welcome. Thank you.

breemichelle26 | @breemichelle26 | Apr 25 12:39am

In reply to @mnewland99 "Hi there Marcia, I had tumor in the tail, so I had distal surgery which included..." + (show)

Hi Marcia- has the GAC helped shrink your masses in your abdominal peritoneun?

mayoconnectuser1 | @mayoconnectuser1 | Apr 25 5:11am

In reply to @burksgrl "@gmaryanne, Interested to know, do you visit all the various provides in other parts of the..." + (show)

burksgrl,

It sounds as if a PCP is not who should be consulting/caring.

Have you tried to obtain care at a pancreatic center of excellence?

carfbuch | @carfbuch | Apr 25 7:58am

In reply to @jfranc1 "Hello, I had the open whipple surgery in November. When I went to set up the..." + (show)

Thank you so much for sharing your experiences and learn you are doing well after Whipple. Your input has been very helpful!

stageivsurvivor | @stageivsurvivor | Apr 26 5:31am

In reply to @burksgrl "@gmaryanne, Interested to know, do you visit all the various provides in other parts of the..." + (show)

For pancreatic cancer, this is beyond their area of expertise. A consult should be with a pancreatic cancer oncologist which is a GI oncologist whose sub-specialty is cancers of the pancreas. Following are links for finding a pancreas cancer oncologist that practices in the high volume centers with a pancreas program. If the patient is relatively healthy enough to qualify for a clinical trial, it is the pancreatic cancer specialist who is in the best position to know of trials.