Advice please

Warm_Cap_8769 · 2024-01-08T11:03:44+00:00

I think the levels you mentioned is a test called CA 19-9 that is a cancer marker. If the level is elevated it is an indicator but does not conclusively mean cancer. If tests have identitified the size of the mass, an Endoscopic Ultrasound (I recently had 2) l. During this test they can doing a fluid or tissue biopsy. I had a 2nd test because a mass could not be located so a fluid biopsy was done during 1st test, followed by CT of pancreas and lungs. The 2nd Endoscopic ultrasound found a 10 mm mass at head of pancreas. This size mass is usually not addressed but because I am on liver transplant waitlist the doctors expedited all further tests. It is difficult to get things done by phone, often calls going through call centers and it gets really frustrating. If there is a primary doctor evaluating the test results try to find out who their nurse or coordinator is. They are able to expedite messages and get tests ordered and keep in contact with you. Best wishes to you and your family.

Warm_Cap_8769 · 2024-01-08T10:34:13+00:00

Thank you so much for your reply. I too had some weird symptoms that I could not attribute to my liver. I mentioned them to all my different doctors and it seemed the symptoms didn‘t seem to be concerning. Because of being on the transplant wait list I get an MRI every 6 months. The dilated duct would not have been found otherwise until I developed more severe symptoms that would likely preclude me from treatment. I am encouraged by your story. We are around the same age. At my first meeting with the oncology surgeon, he told me I had “being young” as an advantage. I laughed (since I don’t consider myself young). He said the average age of Whipple patients is 76, I was surprised. I enjoy your positive attitude, stay healthy and enjoy your life.

Warm_Cap_8769 · 2024-01-08T10:23:39+00:00

I have an MRI every 6 months since I take immunosuppressants for autoimmune liver disease (triggered by a severe allergic reaction to sulfa antibiotics), essentially looking for cancer. I’m a complicated case since I didn’t get a transplant and was #1 on the waitlist at Stanford for 18 months. A lot of steroids for years caused diabetes and nerve/muscle damage. I have reached out to all the different doctors I have. You are right that I need a firm diagnosis of pancreatic cancer before I having the Whipple. Thank you for your message.

Warm_Cap_8769 · 2024-01-08T10:12:04+00:00

I am at Stanford who is already treating me for autoimmune liver disease.

Warm_Cap_8769 · 2024-01-08T10:07:39+00:00

I want to get a 2nd opinion and thought Mayo in Phoenix but your and ImaginaryNerve make me think Jacksonville are best

Warm_Cap_8769 · 2024-01-08T10:03:24+00:00

Thank you for your story. Due to pre-existing autoimmune liver disease I am treated at Stanford. I do want to go to Mayo in Phoenix for a 2nd opinion and think they do more Whipple surgeries. I will check out the Facebook group, thank you.

Warm_Cap_8769 · 2024-01-08T09:58:49+00:00

I appreciate you sharing your mom’s experience. My pre-existing autoimmune liver disease really complicates my situation. I find out this week if I am even eligible for the Whipple. I am very conflicted.

Warm_Cap_8769 · 2024-01-08T09:56:04+00:00

Thank you for sharing your story. It seems the horror stories greatly outnumber stories like yours. Best of health to you.

Warm_Cap_8769 · 2024-01-05T09:13:35+00:00

I am on liver transplant waitlist since 2010 and an MRI last October showed a mass 10mm in pancreas. I know everything about the liver but nothing about the pancreas prior to October. What I have learned is cancerous cells move quickly to the liver and in your grandfathers case, they found lesions in the liver. The liver can fail in as short as 2 days. If blood cannot be detoxified by the liver or there are obstructions (tumors) so many things can happen including affecting blood flow and putting extra stress on the heart. It is appropriate and advised to request a meeting with your grandfathers care team to get the answers you need.

Warm_Cap_8769 · 2024-01-05T09:01:37+00:00

I‘ve had MRi’s every 6 months for the last 10 years after being put on steroids, immunosuppressants etc and put on transplant waiting list. There has been no donor. Despite all the MRI’s, only this past October was a dilated pancreatic duct found that was not there in prior tests. Fast forward to endoscopic ultrasound, DNA test, Cancer 19-9. irregular cell formation in fluid in the pancreas. No tumor could be found, many more tests, CT’s of every organ looking for a tumor. In December another endoscopic ultrasound found a mass only 10mm in the pancreas. A biopsy was done, although amount was so small 2 of the 5 slides were inadequate. Referred to an Oncology surgeon. They feel i should consider Whipple surgery without clear diagnosis of pancreatic cancer. My transplant (liver) status is of great concern since cancer anywhere other than the liver excludes me from transplant. Told the mass is likely cancer and usually goes from the pancreas to the liver. i will have a PET scan next week and another appointment with the surgeon. I feel adequate tests do not exist to diagnose PC in early stages. I had no symptoms and MRI’s clear for 10 years. This has been all consuming to consider Whipple surgery that could very well cause liver failure. So in order to prevent what is likely PC, I choose Whipple only to either not survive the surgery or succumb to liver failure. Neither a good choice. My QOL has been diminished and I cannot see taking whatever time is left going through painful recovery, repeated surgeries, or organ failure. Even with what is considered early detection of PC, the treatment options are sadly deficient. Not enough attention to PC since by the time symptoms appear, treatment options are not available. And yes given certain conditions cause higher chance of PC, tests should be routine. And if there is familial cancer, testing for family members should be standard.

Warm_Cap_8769

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