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Pancreatic mass

Posted by edhake @edhake, Sep 23, 2023

Because of a BRCA gene variant, I had a pancreatic ultrasound done with my endoscopy. He found a mass on the pancreatic tail and did a biopsy. Although he suspected adenocarcinoma, the pathology results were “pancreatic parenchyma with fibrosis, atrophy and rare atypical glands”. CA 19-9 results 7. CT scan indicates “abnormal pancreatic tail, pancreatic malignancy vs focal pancreatitis”. Surgeon wants to do distal pancreatectomy and splenectomy. Had breast cancer 20 yrs, lumpectomy and radiation only. Anyone heard of this sort of thing? I don’t want to do the surgery if it’s nothing nor do I want to wait so long it may possibly turn into something.

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markymarkfl | @markymarkfl | Sep 24, 2023

You might consider additional methods (continuing CA19-9, adding CEA, and maybe ctDNA) to monitor it if you don't treat it immediately. Not everyone secretes CA19-9 from pancreatic tumors. In my case, MRI showed a suspected post-op recurrence where the head of my pancreas was removed (Whipple). Biopsy failed to find malignant tissue; was reported as chronic pancreatitis; led to a 2-month delay before CA19-9 continued to rise and MRI showed tumor growth, providing evidence of malignancy.

I have an ATM gene mutation, which I think increased my risk of initial cancer and recurrence. I believe a BRCA mutation does the same for you, so be very vigilant!

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lvtexas | @lvtexas | Sep 24, 2023

If your team is recommending surgery, you should do it. Get yourself in best physically fit state you can - start walking every day. Eat well. And put on some weight from drinking extra protein shakes. Extra weight is important because most people lose weight with the surgery and recovery. May you have peace with your decision. Early detection is your best survival chance.

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lvtexas | @lvtexas | Sep 24, 2023
In reply to @lvtexas "If your team is recommending surgery, you should do it. Get yourself in best physically fit..." + (show)
@lvtexas

If your team is recommending surgery, you should do it. Get yourself in best physically fit state you can - start walking every day. Eat well. And put on some weight from drinking extra protein shakes. Extra weight is important because most people lose weight with the surgery and recovery. May you have peace with your decision. Early detection is your best survival chance.

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Of course, this must be deemed medically necessary for insurance purposes and your overall health is also a big consideration.

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edhake | @edhake | Sep 24, 2023

Thank you all for your input. I do walk most days and my weight is at the upper level of normal for my height. My diet does need improvement tho and I’m working on that. I will add in some extra protein shakes. Overall I’m in pretty good health except for asthma/mild copd which has been stable for the last 10 yrs.

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gardenlady1116 | @gardenlady1116 | Sep 24, 2023

I also have the BRCA gene. I did not know I was at increased risk for pancreatic cancer. Now after 6 months of chemo and Whipple doing OK, but I know that cure is not likely, although possible. I am left with pancreatic insufficiency. An earlier diagnosis would have helped a lot. I had breast cancer 22 years ago and ovarian 3 years later. Make sure you are being seen at a pancreatic center of excellence. Seems to me that a second opinion would be helpful. Another pathologist can review the biopsy and see if there is agreement about the pathology. Get the best second opinion you can!

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mayoconnectuser1 | @mayoconnectuser1 | Sep 25, 2023

Is this diagnosis from a center of excellence? If not, consider locating to one for a second opinion. They are usually quick direct to obtain a consultation.

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