There is hope!

My husband is Stage IV, not a candidate for surgery, but he is responding so well to the Folfirinox that maybe chemo/radiation would next for him. Please keep us posted about your mom--this is so encouraging!

Which Mayo Clinic did you go to?

We went to Mayo in Rochester—that was her second opinion. My mom had all her treatments done locally at Cedars-Sinai in Los Angeles.

I definitely am not trying to scare you. Just being precautious!

I was initially misdiagnosed in early October, 2022. It was at Desert Regional in Palm Springs but a month later the gastroenterologist who is the top GI specialist & who I saw in ER before being admitted ordered the MRI which diagnosed me with ductal adenocarcinoma. I had a biopsy Dec 7, 2022 which confirmed my diagnosis. I had the distal pancreatectomy w/splenectomy surgery at Loma Linda University Hospital on Jan 5, 2023 as they were one of the two hospitals within 2 hrs who did the type of surgery I needed. My tumor grew substantially from Dec 7 to Jan 5. On the pre op CT scan they thought it was within the border of my pancreas but when they got in to do the surgery discovered it was growing outside anteriorly. This shows how fast these cancers can grow. They still did the surgery but warned me that microscopic seeds drop off during the surgery and they recommended radiation to the pancreatic bed, which I also had in March, 2023.

MRIs are better than CT scans for seeing a true picture. Like I said, the CT scan from 7/12 showed nothing but the MRI from 7/14 showed the uterine nodule. Both were taken in my pelvis.

Since May 5, 2023 I am going to Eisenhower Lucy Cursi cancer Center which is affiliated with UC San Diego. It’s an excellent cancer center & I have full faith in my oncologist. He is on top of it!

You're also in Southern California! Good to meet another SoCal person.

My mom's tumor was picked up by a CT scan at one of the small, local hospitals here. We then had a biopsy done at Providence St. Jude's, which confirmed the diagnosis. They took 3 samples. Two of them came back negative, the other came back as well-to-moderately differentiated cancer, so it seemed like my mom's tumor was less active. We then transferred her care over to Cedars-Sinai in Los Angeles, where she did all of her chemotherapy infusions and eventually chemoradiation. I should have full faith in her medical team as they've gotten us this far, but I am scared. I reached out again to Dr. Truty and his team and see what they have to say. Right now, I'm trying to focus on the fact that my mom looks and feels great and the scan did not indicate anything new. I would also assume that at these top hospitals, radiologists would note if gas or inflammation was obstructing their view and suggest a follow-up scan ASAP. I did not see any of those comments, so I just hope all is well.

Cedars is a really great hospital! I had surgery there for my previous cervical cancer many years ago. They removed most of my cervix at that time. I had great care there! You should have faith in them! 💜

Something jumps out to me in your case, in my wife’s case, we had a CT, MRI, and a PET scan. She had surgery March 1st, so it was her first follow up to check. Was a PET scan not considered?

No, they aren’t considering one at this point. Another CA 19-9 lab test in a month first and we will see where we go from there. There weren’t any suspicious spots and everything else has been stable, so that’s why they aren’t proceeding with additional imaging for at least another month.

@whilted , I don't mean to scare you either, but instead reiterate the need for vigilance and self-advocacy.

You might ask the doc if you can do the CA19-9 tests a few more times (weekly, every 10 days, or at least bi-weekly) before the next visit. The value can fluctuate for numerous reasons, but if you have several tests in that 1-month window, you'll have more data points for your trend line, and a better idea of what her normal is. Two readings one month apart is not bad, but with "noise" in the measurements and only two data points you don't really know which number(s) to trust.

The test is not expensive, or at least shouldn't be. I used to get mine tested every two weeks with a self-pay price of about $25. Just make sure all your tests are done at the same lab, because results from different labs are not interchangeable. Also note that vitamin B7 supplements (Biotin) in high doses can suppress the CA19-9 level on some tests, so avoid those at least a few days before each test.

Meanwhile... I assume your mom has already had genetic tests like Invitae and Guardant. The Galleri test from Grail might also be a good data point to get, if you can afford the self-pay cost (approx $1000). Get those tests done asap so you have results ready when/if treatment decisions have to be made, not 3 weeks later. If they wind up eventually doing any kind of biopsy, ask them to get enough tissue for full next-generation sequencing and a Signatera test that can be used in follow-up disease tracking if necessary.

For me, slowly rising CA19-9 was the first indication my cancer had returned after surgery at a top hospital, beating out the MRI (top hospital), Signatera, Galleri, and even an endoscopic biopsy.

Since she had Folfirinox before, I assume she still has her chemo port. I would be ready to resume chemo on short notice, but you might also want to see if you can get a surgical opinion from Dr. Christopher Wolfgang at NY Langone (formerly at Johns Hopkins) who has a reputation for taking on some challenging surgeries others refuse to do. Get that appointment in the pipeline as well, because it might take a while to see him, and if he's willing to do it before chemo starts, you can avoid a possible 30-day chemo washout period.

Thanks for your comment. I'm definitely the biggest advocate for my mom and always try to be as proactive as possible. However, we have issues with doing things that our medical team disagrees with. I raised all these questions to our oncologist, who said he isn't concerned and wants my mom to repeat her lab work in two weeks. How can I tell him that we want the lab work done earlier and more frequently? I had this issue when I tried to advocate for more Folfirinox sessions for my mom, but he did not agree with my wishes (neither did my mom). How do we go about fighting for what we believe in? Do we have to switch doctors?