Need advice! CT Scan shows Lesion on Pancreas

I find radiology reports to be frustratingly inconsistent. My first one, from a CT back in March, has very specific measurements of the tumor on my pancreas. All subsequent reports on CT scans have no measurements at all, just references to things like "the growth looks stable" or the tumor "is difficult to measure." I can't explain why one MD measured it and no one else did, and nobody else can explain it either. I finally decided either the first MD is exceptionally skilled and the rest aren't, OR the first MD is young, inexperienced and earnest and the rest are more experienced and know better than to try and measure a pancreatic tumor. Anyway, I understand your frustration.

Re "unremarkable," I think the MD's explanation is correct. Either there's really nothing there OR they can't see anything but there might be something there. But nothing shows up on the CT scan, so from a radiology perspective, the images are "unremarkable." In my case, I was told I have very flat lesions that had metastasized from the main tumor. The surgeon saw them during the staging laparoscopy, but they are so flat that they don't show up on a CT scan. So my most recent radiology report, from the scan two weeks ago, says my liver and spleen are "unremarkable." but we know there's likely something there.

I understand that your first CT was as the result of a gallbladder attack. (Join the club--I had my gallbladder out in July too.) Who ordered the next two? Was it a kidney specialist or somebody else? To me, it sounds like you need to get these scans in the hands of an oncologist who's experienced with pancreatic cancer and have that MD interpret the data on your pancreas. While you're at it, request that tumor marker blood tests be drawn so you have that info as well. You might also discuss an endoscopic ultrasound (EUS), which is often used to obtain a biopsy that can confirm diagnosis.

Thank you so much for the response.

Great advice. I would add that an MRI might be called for in 3 months. I certainly would not wait a year .

I too am frustrated with radiology reports. Recently my report referred to a measurement in a previous report that was stated incorrectly. I asked-which is it??
Of course— no one will speak to it and I don’t have an opening to speak to radiologist that writes the reports. They are always different. So I must rely on my doctor to look at the scans with me and interpret whether or not there is shrinkage.
Be your own advocate and require close surveillance. And definitely ask for the CA19-9 or CEA test. Not always definitive but you will create a baseline and also an additional datapoint outside of scans.

Your oncologist can request that the radiologist review and an amended report can be generated if needed. It's important to keep the record straight

I agree about the inconsistency of radiology reports. I've had 3 amended in the past year due to missing or incorrect info: one to recompare w/ previous imaging, one where units were missing, and one where a finding was reported in centimeters instead of millimeters.

For me, the hardest part is correlating one report to the next over time, because sometimes the reports will refer to the same part of anatomy by a different name, or refer to a tumor's location with respect to a different landmark each time.

I've had 8 scans in the past 14 months, and started a spreadsheet to try and track every finding from the first to the last (new tumors and evolution of existing tumors). I've just given them names "A" and "B" and "C" and so on so the data/comments (copied & pasted from the report) are always attached to their "owner".

But the count has exploded exponentially over time because I can't tell if a finding on my latest report is new or existed before with a different description. I'm at the point now where it takes me hours to correlate them all, and I think it would even be time-consuming now for a radiologist or oncologist to do the same, so I would start early and plan for those discussions sooner rather than later if you want to undertake such an effort.

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Re the original post by @mindybigham :
If you haven't already had the genetic tests done to identify any mutations you have, you should definitely do that asap. Certain mutations may identify you as high(er)-risk for pancreatic cancer and increase the attention to and screening of your issue.

Hi @mindybigham, any update? What did you learn about the CT scan findings?

Thank you for asking and I appreciate everyone who gave feedback to my question. Unfortunately I’m still at a loss of knowing and nervous especially now after I finally saw my primary care doctor for follow up on the MRI results last Wednesday and he said he did not like what he saw (regarding MRI of pancreas) and wants me to get a biopsy asap. Problem is my appointment with pancreas specialist isn’t until Nov 9th and I asked my Dr if he could do anything to get me in sooner and he said just to call them and ask to be notified of any cancellations so I did that and they put me on a list but the person who I spoke to also suggested calling the office everyday and ask if any cancellations so that’s what I’m doing but my concern still is even if I get in sooner it will only be a consult visit and they will have to schedule the biopsy and I just hope it doesn’t take long to get that done but regardless all I can do is wait and see which is the hardest part. I did get a copy of the scans and MRI images on a cd and I’m trying to figure out how to upload them to google drive so I can send them to the pancreas specialist as well as the urologist because I also have a complex cyst on my kidney that I want second opinion about as well. It has been classified as a Bosniak 2F and recommended monitoring it with another CT scan in 6 months. I have microcytic anemia that they say is due to an iron deficiency so I’m taking iron pills. Several of my bloodwork results have come back as abnormal some being too high and others too low and when I’ve researched those they mainly all come back to the abnormal red blood cells due to anemia but there are others I’m not clear about so don’t know if there is a need for concern but I’ve not had any tests for cancer markers or anything like that that I know of. I’m not a dr obviously so I’m only guessing based off information I’ve read online about various tests etc.

@mindybigham , Due to the long time before your consult with the pancreatic specialist, it would be good to have more data before you see him/her.

Can you ask the primary care doc or the pancreas specialist if they can order some of the relevant tests now?

You could definitely have CA19-9 results back in a few days from a simple blood draw. In fact, you could have 2 or 3 CA19-9 tests between now and November 9, to see if there's an upward trend -- much more important than just a single data point.

You could get the Invitae (germline/hereditary) DNA test back in about 3 weeks, and that would tell you if you inherited any mutations that increase your chance of cancer (pancreatic or other). I think it's a reasonable price ($250?) for self-pay if insurance doesn't cover it.

You might consider the Galleri test from Grail for approximately $1K if affordable. You can get that w/o a prescription after a phone call with a counselor at Grail. Results within about 3 weeks. Definite possibility of false negatives, but a positive would be both a useful data point and a good justification to speed up your specialist appointments.

The Guardant 360 test is intended for people with already known cancers at Stage 3-4, but can also identify cancer cells and mutations in general. Their report also documents microsatellite instability and tumor mutational burden, which are of interest to doctors seeking to targeted therapies to treat you with. (That's why it's not considered a first-line test and why it's not very affordable. If you can get it ordered by a doctor, it's about a $5000 self-pay. Insurance wouldn't likely cover it unless you've already been diagnosed with cancer.)

My referral to a gastroenterologist happened real quick after my liver enzymes refused to come down. His referral to get me an MRI was pretty quick (which you've already had). From there, it was pretty quick to get his referral for my EUS/ERCP/biopsy from a good specialist. You don't want an amateur doing that, but that was separate from any oncology visits for me. The positive result got me a PET scan, oncology consult, surgical consult, chemo port placement, and first treatment within about 5 weeks.

I don't know if your first biopsy would be just via EUS/ERCP or a laparascopic/open abdominal procedure.

If you're not completely locked into this set of doctors, or if they could recommend faster alternatives with some travel, that might be worth considering.

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Regarding your CD images: Did they mention whether images could be uploaded via AmbraHealth or LifeImage? Those are two common portals used by a lot of providers, and it may give them more detailed data (the full DICOM setof images) than you'd be able to upload via Google drive.

I had a biopsy done within three days of the CT scan showing the tumor, my doctor got me an expedited appointment. Seems like a long time to wait. Since my bilirubin was elevated due to blockage of the bile duct by the tumor, it took almost 3 weeks to come down to the point where chemo could be started. You can check with your primary care provider on some alternatives and see if there is anyone who can see you sooner. The CA 19-9 and CEA tests should be covered by insurance without difficulty and you will need to have some imaging of the chest to look for any evidence of spread outside the pancreas. Chest CT is typical.