Ductal adenocarcinoma, colloid (mucinous) type
Hello!
My mother (61y) was diagnosed with pancreatic cancer after CT.
The cancer is 8cm and has started from the tail. She was also given a biopsy, which described the cancer as “pancreatobiliar ductal adenocarcinoma, colloid (mucinous) type”. Today she visited the doctor and they didn’t offer any hopeful prognosis. She will have heavy chemo for 3 days.
I am very confused about her diagnosis. The doctor said that the type that she has is very aggressive and that metastasis have spread in liver and lymph nodes. From what I’ve gathered from the literature, the colloid type is usually not that aggressive. Am I wrong?
Also, how is it possible that the doctor prognoses only weeks/months to live, if my mother blood tests are in order and she doesn’t have any symptoms other than ascites? She doesn’t have jaundice, weight loss, pain, nausea, fever etc. She is in great health and doesn’t have any siding illnesses.
Thank you for any feedback you can provide about this condition!
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Disclaimer: I have zero medical training...
I don't know anything about the colloid type, but 8cm is a fairly large tumor. If it started from the tail of the pancreas, it might be less likely to block the common bile duct than if it were in the head, which might be one reason to not experience jaundice.
I think the weight loss some people experience is from failure to absorb nutrients when the pancreatic enzymes are blocked or not produced in sufficient quantity to digest food properly. Other symptoms to keep an eye out for are new-onset diabetes, and changes in stool/urine color.
With that said, the doctor's prognosis might be very far from accurate. The standard answer at this point is to get into a pancreas specialist's office (*) as soon as possible for second opinions and treatment. There are people living for several years with various flavors of Stage-4 PC on the right treatments.
(*) Find the specialist at a nationally recognized center of pancreatic cancer excellence. One list here:
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
Other good resources:
https://pancan.org/
https://letswinpc.org/
https://lustgarten.org/
You'll want to get two basic types of genetic tests done as soon as possible: "Germline" (to identify DNA mutations passed down from your ancestors) and "Somatic" (to identify mutations caused by environmental factors). Both of these can be used to help select the best treatment. "Invitae" is one example of a germline test, and Guardant is one example of a somatic test.
Wishing you (and your mom) the best. Whatever you do, do it soon!
Thank you so much for your thorough response and good thoughts! I was not aware of the genetic tests and we will definitely ask about them from the doctor. We are located in Estonia.
My mother receives Folfirinox treatment and it’s her second day. Right now she is doing well and is optimistic about the future.
Maybe the doctor just wanted to prepare her and my dad for the worse. It is actually not detected that there are lesions in the liver and the lymph-nodes, the doctor guesses it from her experiences.
My rock-hard dad has been in such a shock since the last doctor appointment, he tears up in the evenings and says there’s no hope, because this is what the doctor said. My heart hurts so much when I see him like that.
However, I personally try to concentrate on my mother’s condition rather than the diagnosis. I know the prospects aren’t great, but my mother is such a strong and healthy woman and she might surprise us all, including the experienced doctor. Maybe I am in denial, but it hurts less, if I stay hopeful!
@capricorn24 , You are very welcome, and I wish the best for your mom. I was on Folfirinox for 6 months (12 cycles) with a 2cm PDAC (pancreatic ductal adenocarcinoma) in the head of my pancreas. I remained stable (no spread or increase in tumor size) the entire time until my Whipple surgery, but Folfirinox did not kill the tumor either.
Unfortunately for me, they didn't remove enough pancreas tissue during the surgery, so the tumor came back rather quickly and spread before we started treatment for the recurrence.
I'm now on chemotherapy with "GAC" (Gemcitabine + Abraxane + Cisplatin) which also has not reduced the tumors, but again, I have been stable for the last 6 months and my cancer marker (CA19-9) numbers have gone down a lot more than they did on Folfirinox.
I have not really experienced any "cancer" side effects since having the bile duct stent inserted two years ago (removed along with gall bladder and half my pancreas during the Whipple surgery one year ago); the only thing I'm experiencing (at age 60) from the chemo is 3-4 days of fatigue after each chemo treatment, along with some peripheral neuropathy. Things can change rapidly, but there is a lot of reason to have hope!!!
For your mom's treatment, the only thing I can suggest beyond the genetic tests is to ask the doctors what their plan is for the next steps: How long will they spend waiting to see if the Folfirinox is working, how often will they run tests (and which tests -- MRI/CT, CA19-9, etc), and what is their next step if the Folfirinox is not working. I don't know if my genetic makeup (ATM mutation) is the reason I'm getting a better response to GAC than I got from Folfirinox, but it's good to do your homework, be your own advocate, and push for the doctors to always be thinking ahead rather than just driving on cruise-control.
Thank you again for your advice and for sharing your personal experience! You have been through so much, but it is truly a positive sign, if you remain stable and have found treatment that works best for you.
Things can chance rapidly, that’s true. A blood test that was taken three weeks ago didn’t show any markers (CA19) yet, but this week her markers had gone up (1800 and 200, if I remember correctly).
There may be so many new treatment options developed specifically for pancreas cancer available soon as well, so let’s stay positive and hopeful!
I am not a medical professional, but the blood work work numbers are important for assessment. CA-19 is usually accurate. Any number over 34/37 (depending on test manufacturer, if I recall) is positive for pancreatic cancer (although other infections and cancers other things could cause this), but the trending reflects.
Ascites is, in many cases, indicative of spread to liver, omemtum and other areas - this could explain the prognosis.
Regardless, she needs to be seen by a pancreatic cancer center of excellence - immediately.
Today is the 4th day after chemo. My mother is doing really well and she is gaining more energy day by day.
The ascites is also decreasing. When she went to the hospital, she had 3 litres taken out within 24h. Right now there’s approximately 400ml of fluid coming out within 12h, but the amounts have been decreasing 100ml per day. Also, she said that the fluid is not so watery anymore, it’s more foggy, mixed with some blood.
Does anybody have any similar experiences? Does that mean that chemo is working?
Also, my mother had another CT yesterday. She will see her doctor on the 15th, when the second chemo starts, so there’s a bit of waiting. She is afraid that the cancer has spread so much that the doctor will say that there’ no point for chemo. I have been telling her that they will definitely continue chemo, as long as her blood tests are fine. Is there anything else I can tell her, so that she would feel reassured?
capricorn24,
Are you reviewing online resources for information? There us a lot. An example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4521252/#:~:text=Under%20normal%20conditions%2C%20peritoneal%20fluid%20is%20clear%20to%20pale%20yellow.&text=Bloody%20ascites%20is%20a%20characteristic,is%20often%20associated%20with%20cirrhosis.
Does your medical system gave an online portal where you can review test results, blood test results, assessments, etc?
Thank you! I have been trying to keep up with online resources. However, I don’t know for sure, what type of ascites we’re dealing with. Cirrhotic ascites is the most common, but I have read that pancreatic cancer can cause ascites at any stage, especially when it’s in the tail?
We can access the results online. We did it at first, but now my mother is too scared and says she doesn’t want to know the results.
The fluid can be tested for cancer cells. Tests have likely been done to see the characteristics of the fluid so your medical team should be able to give you that information
Thanks! Just wrote it down as another question for the doctor.
I know it’s a long shot, but I am hoping that maybe the ascites is not that malignant, if it’s caused by the dysfunctioning pancreas tail, not by the liver...