Pancreatic Cancer Group: Introduce yourself and connect with others

When they were first diagnosing my husband's cancer, we contacted Cleveland Clinic for a virtual second opinion. Very disappointed with that as they simply repeated what the oncologist said here... and they both misdiagnosed the primary so it set us back months of wrong treatments. I was told afterwards that we (non medical people) could have requested additional tests, etc. But we went for the virtual second opinion believing that the oncologist there would order any relevant tests, and he didn't. His words gave us false hope that we were on the right tract. If we did it again we would ask many more questions.

@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.

Folks, I am a two time cancer person, breast and thyroid. I was diagnosed last month with 1.3 cm lesions in the pancreas. Luckily it is not considered cancer, yet. I'm told protocol is a follow-up MRI in 6 months. I'm trying to find out from my doc if the protocol should be anything different given my history. Hard to get answers from busy people. Advice anyone? Thanks.

My wife is 70 years of age and was diagnosed with stage 3 pancreatic cancer in Oct 2023. Since she has undergone 4 months of FOLFIRINOX. Following this treatment she was moved to GEMCITABINE. However, treatment was stopped after two sessions due to a severe allergic reaction. She stared 3 weeks chemo/radiation this week. The tumor is at the head of the pancreas and has encased several blood vessels. Surgery is beyond Whipple, requiring the complete removal of pancreas, along with spleen, gallbladder, etc. most recent scans have shown a shrinking tumor, reduced avidity and normal blood markers. Question: Given the complexity and recovery challenges of surgery, is it common for patients in this situation to opt out of surgery? If so, what are the alternatives to consider?

@gmaryanne,
Thank you for your reply. We are at a major medical center, midwest. When I clicked to find providers of excellence from your post, I was surprised to find they werent on it! but another local hospital is! Soninlaw is now 4 1/2 years out from diagnosis and chemo radiation . Now having GI bleeding issues due to radiation damage, apparently.

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.

CENTERS OF EXCELLENCE

https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/ .
https://pancan.org/research/precision-promise/locations/

@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.

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...

@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.

Hi there Marcia,
I had tumor in the tail, so I had distal surgery which included removal of spleen in October 2022 with some complications from surgery. Hepatic and celiac arteries showed soft tissue area in December,but it was regarded as scar tissue at that time. I began chemo in January or delayed due to my complications. 12 rounds fulfirnox but no radiation. In November 2023 my CA19-9 starting climbing again at a quadrupling rate. Drs finally did a MRI and EUS-__ERCP in December and found a couple of lesions in my liver and my new “suspicious” masses in my abdominal peritoneun and by the way these areas didn’t show up with uptake on my PET scan. GI dr who did EUS said samples from peritoneum and hepatic artery difficult to get but based on the visual testing of it he suspects those are cancerous, as well as my new UCLA (I switched from Hoag). So I continue on GAC until it’s no longer effective. My tumor tissue currently being tested for CLD-18 protein too see if I will qualify for that trial it’s just something I’ll have ready to go in my back pocket when GAC stops working. Good luck to you on your PanCAN journey. What do you wear on your head now?