There is hope!

That is good news! I see Dr. Truty as well, and he wanted to remove my pancreas stomach and spleen. He said it would be a very difficult surgery and recovery. I decided not to get the surgery. The tumor is dead. I know it may show in other places. If it did after surgery, I would be too weak for chemo or radiation. This way I can still use chemo and radiation if and when it shows up again.

That's exactly the same surgery my mom would have gotten if she qualified. However, Dr. Truty said he was unable to physically reconstruct one of the veins, so that's why surgery was off the table. He told us the same thing - that the surgery is not anyone should want. It just felt like surgery was the only hope we had left. So glad my mom has been able to keep her organs and be in good shape to fight the next battle. Here's to hoping it doesn't show up again for both my mom and you!

I am so happy for your mom. It is a medical miracle. This is the best news that you and your family could ever receive. I hope that your mom has many more years of cancer free reports !! God bless
Sincerely Susan

Such great news! So wonderful that you posted it!
Does her oncologist recommend any type of systemic drug to keep the cancer at bay; or just surveillance?
Did she do Folfurinox?

Thank you, that is really encouraging!

Thank you for sharing your story. I am struggling to recover from a standard Whipple surgery. Not easy. I don't think it would be able to stand up to chemo (currently 5 weeks after surgery). At least, the tumor showed to living cells and there was no evidence of cancer in anything else. Seem like it should be a good thing. I am struggling with neuropathy and so I am glad right now that I do not have to take treatment.

Her current oncologist recommended just surveillance, but I've been reaching out to other oncologists (UCLA and Mayo) to see what they suggest. The lack of treatment always frightens me, but my mom deserves a break!

And yes, she did Folfirinox!

I wish you a speedy and great recovery!

I’m glad your mom is seemingly clear and feeling great & that you had a great vacation! I’m a bit confused though as pancreatic ductal dilatation normally means the ducts are dilated very possibly due to ductal adenocarcinoma. I’m not a doctor but that is exactly what my CT scan report read when the initial hospital I landed in had diagnosed me with necrotizing pancreatitis which was inaccurate. The day I was discharged from the hospital I had an MRI. They couldn’t see the tumor at that time due to so much inflammation but a month later, after drinking organic celery juice every morning on an empty stomach to reduce inflammation, the gastroenterologist ordered another follow up MRI and there was the tumor in the body/tail area of my pancreas, rearing it’s ugly head. I was able to have surgery thankfully and they diagnosed me as Stage 1B. I had a distal pancreatectomy with splenectomy. The tumor was unfortunately already growing outside the border of my pancreas anteriorly by the time I got in for surgery after Christmas, so I had to have radiation in my pancreatic bed after the surgery and am now 6 rounds into the 5-FU regimen with 6 more to go. I’d question her oncologist about the ductal dilatation and maybe demand an MRI to take a closer look. This cancer is very tricky according to my pancreatic oncologist who is incredibly thorough. A nodule showed up on my uterus on the recent pelvic MRI that was not there on the CT scan that I had done 2 days earlier. I am now being referred to a gynecology oncologist for a consult. My oncologist says the nodule likely is not related but could be a different type of cancer. I had cervical cancer many years ago that was removed with surgery. No issues since until now. I hope I don’t need a hysterectomy on top of all this! You honestly can’t be too careful! Maybe I’m being cynical but from what I’ve learned about this disease, being in the clear is a sketchy diagnosis to make. I hope I get to NED one day but am so nervous due to being told by 2 other oncologists, whom I saw, that pancreatic cancer always shows up elsewhere within 2-3 years, it is hard to believe one will beat this easily.

Best wishes to your mom on her journey!

Thanks for sharing your journey. I know your intention was not to scare me, but man am I scared now! I just sent a message to her oncologist asking if this is something we should worry about. Even though her scan looks good, I haven’t stopped reaching out to other oncologists in the area for a second opinion.

Just curious, when you were first misdiagnosed, were you at a small local hospital? Since we’re at one of the top hospitals in the nation, I would hope they would do their due diligence and suggest an MRI to better visualize things if they weren’t sure…