Difficult Diagnosis

Hello @cazms5 and welcome to the Pancreatic Cancer support group on Mayo Connect. I can understand how frustrating it can be to live as you say, "in limbo." It sounds as if your husband has had multiple scans, of different types, as well as a biopsy with no clear-cut diagnosis.

In order to clarify a bit more, perhaps you can provide some more information, as you are comfortable doing so. For example, was this mass found because your husband was having symptoms? Is he able to eat without problems? Has he lost weight? In addition to scans and biopsies, doctors also can run blood tests to check for pancreatic functioning. Have these tests come back normal? Is his medical team part of well-known cancer center of excellence?

I would like to invite some other members of this group to comment and discuss this with you such as @markymarkfl @gardenlady1116 and @jk77. If you would like to learn more from those who have a diagnosis of pancreatic cancer, here is a link to a discussion group that might put you in touch with more members.

--Pancreatic Cancer Group, Introduce Yourself and Connect with Others
https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/?commentsorder=newest#chv4-comment-stream-header
What plans does your husband's medical team have in place for follow-up at this time?

In most cases a CA 19-9 blood test would be used as a secondary diagnostic tool ... was this done?

@cazms5, this sounds extremely frustrating. You and your husband needs answers. Have you considered getting a second opinion? What has his current team suggested as next steps?

Pancreatic Cancer can be difficult to diagnose and obtaining a biopsy by fine needle aspirate takes a skilled GI specialist to ensure adequate sampling is made from a difficult target to access. Regional Medical Centers and Hospitals do not have the specialization as they are not high-volume centers for pancreatic cancers and do not do these procedures frequently. It is best to go to a large Comprehensive Cancer Center or NCI designated Center of Excellence where you will find a pancreas program or hepatobiliary department. In these facilities you will find a GI specialist with considerable experience in obtaining biopsies of the pancreas.

It was mentioned that CA19-9 be used as a secondary diagnostic test. This biomarker is not used as a diagnostic test nor is it recommended because of false negatives and positives. The reasons are that not all pancreatic cancers secrete CA19-9 and in 10% of the population with the PDAC form of pancreatic cancer, it is not secreted. CA19-9 is also secreted in other benign conditions of the GI tract as well as secreted in inflammatory conditions. A biopsy to obtain cells for microscopic examination and immunohistochemical staining is the accepted method in diagnosing pancreatic cancer.

CENTERS OF EXCELLENCE
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
https://pancan.org/research/precision-promise/locations/
https://www.cancer.gov/research/infrastructure/cancer-centers/find

It could be difficult at times. Some cancers have a lot of stromal cells (cells surrounding the adenocarcinoma cells) and might be more difficult to diagnose. The question is, if your doctors think it might not be a cancer what else could it possibly be? If the suspicion is high and you are a candidate for surgery. you could go directly to surgery without a biopsy, but to proceed with chemotherapy, a diagnosis by biopsy is required for chemotherapy treatment. This might be where you are with this. Ask! Since this seems like a difficult case, see where your doctor recommends you to go, don't waste time. Get to one of the major cancer centers ASAP. Self advocacy is ESSENTIAL!!!!! Many of us have been in the same situation. Because I have had previous cancers, I knew to seek out a higher level of care and where to go in my area but nobody told me to do it. I knew it was the right thing I should do. So glad it did! I never would have gotten top quality of care in my own community, including treatment with Lynparza. Many good doctors, like mine are just not up on the treatment of pancreatic cancer. You want the "leading edge"
I have been to Memorial Sloan Kettering Cancer Center, NY NY
https://www.mskcc.org/cancer-care/types/pancreatic/pancreatic-expert
Other top places
Dana Farber Cancer, Boston Massachusetts
https://www.dana-farber.org/cancer-care/types/pancreatic-cancer
Johns Hopkins University, Baltimore Maryland
https://www.hopkinsmedicine.org/kimmel-cancer-center/cancers-we-treat/pancreatic-cancer
MD Anderson, Houston Texas
https://www.mdanderson.org/cancer-types/pancreatic-cancer.html
Mayo Clinic, Rochester Minnesota
https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/care-at-mayo-clinic/mac-20355431
You will likely get the best care at the main cancer care center, go there first and then follow up at one of the regional centers afterwards if the distance is an issue.

I advise downloading your own records for the patient portals onto a lap top or other electronic device, you will be able to send records directly to the provider you would like to see. If you don't know how to do this, ask someone to help you. Look for an attending physician rather than associate physician. This will help you to get to a top provider. Pancreatic cancer is a difficult disease to treat but you deserve to get the best care you possibly can. Good luck and let all of us know what happens. We might be able to help you along the way.

Yes, he recently had a CA 19-9 blood test and his result was 34.

We just had a second opinion from Roswell Park Cancer Center. They were in agreement with our current medical team as far as the treatment we have received. If we were to go to Roswell, the first thing they would do is another EUS biopsy. My husband’s current team have scheduled him for a CAT scan to see if he still has fluid in his abdomen and the nodule by his liver. If they are still present, they will biopsy the fluid/nodule to see if that will tell them anything. Their next step beyond that will be another EUS biopsy performed by a different gastroenterologist. According to the list I looked at, we are currently at a center for excellence. I don’t know whether or not it will be beneficial to switch to a major cancer center.

Thank you for your welcome and comments. My husband’s mass was found because he was having symptoms, primarily weight loss and low energy. He has never had jaundice or stomach pains. Most of his issues are digestive…belching, occasional diarrhea, no appetite. He is now taking Creon which has been helpful in controlling the diarrhea. Even though he still eats very little, he has recently managed to gain five pounds. This feels like a huge victory! He has an upcoming CAT scan and possible biopsy of the fluid in his abdomen, if it is still there as shown in a previous scan. We did get a second opinion from Roswell Park Cancer Center and may go there if we require another EUS biopsy to try to obtain a diagnosis.

I appreciate the update, @cazms5. I'm glad to hear that your husband was able to get another opinion. It is also good that Creon has been helpful to him and that he has been able to gain some weight.

How are you doing through this process? I hope that you keep posting any questions of concerns you have as you go through this journey. This group has many great encouragers. Will you continue to provide updates?