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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 2 days ago | Replies (1435)Comment receiving replies
@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.
Replies to "@gmaryanne, Interested to know, do you visit all the various provides in other parts of the..."
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/
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.
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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?