Pancreatic Cancer Group: Introduce yourself and connect with others

Several weeks ago, my husband and I (we are both members of this blog) saw a post by a member whose husband of 45 years, went for the whipple procedure, only to have it canceled because of spread. Now, we are in the same position. After being diagnosed as stage 2 in early March, having gone thru 6 months of chemo and 6 weeks of radiation, the whipple was scheduled for Dec. 9. An hour and a half after the surgery started, I received a call from the OR that they were not doing the whipple because of 3 small spots on the stomach lining. Surgery still lasted for 5 hours for removal of gall bladder and rerouting of the bile duct etc., but the tumor was left behind. Needless to say, we are devasted after all these months of positive hopefullness. We, too, are married 45 years, so the story resonated with us. Is there a chance we could connect with that posting again, since we can't find it now. We are coming to Mayo Clinic in January for a 2nd opinion. Up until now, we have been going to Froedtert in MKE., Wis.

When there is a history of pancreatic or the same type of a cancer within blood relatives, there is a stronger probability of a genetic component involved. This inherited component is referred to as a germline mutation. The test involves using a small vial of blood, saliva or swabbing of the inner cheek surface for cells and takes 2-3 weeks to obtain the results.

To get tested is a simple process of contacting a geneticist which large medical centers will have. A meeting will be set up along with a genetics counselor to construct a pedigree chart of what members of the family currently have or succumbed to cancers. You should be tested because you have two direct blood relatives (assuming you Father and Grandfather were from the same side of the family…maternal or paternal). As a result of two family members having had the disease, testing is covered by private health insurance as well as Medicare.

Your situation sounds similar to mine. All the females in my family happened to develop breast cancer with one also having had colon and endometrial cancer during her life time. Both my Mother and maternal Grandmother passed from breast cancer and when a daughter of the sister of my Grandmother developed breast cancer, that got testing started on that side of the family. Testing identified offspring carrying the BRCA2 mutation.

Testing on my maternal side was not done as the test was not yet available when they developed their breast cancers. When I was diagnosed with pancreatic cancer in 2012, I mentioned the family cancer history to my oncologist and of the known BRCA2 mutation on another branch of the family tree, he had me tested. I was found to have the BRCA2 gene and immediately contacted my Brother who got tested and also carries the BRCA2 mutation.

Knowing this, my Brother immediately met with a physician who devised an annual screening protocol that is designed to detect if cancer develops at an early time point when it is more easily and successfully treated. Genetic testing is important to find out if one is a carrier so that surveillance can start immediately.

I have BRCA 1 as does my sister, 2 years younger than myself. Looking for information on screening protocols and also insurance coverage for screening. I see that the options seem to be endoscopic sonogram and MRCP as well as testing for CA 19-9 and there are trials on the optimal screening protocols.

Hi, can you tell me where I can post questions about IPMNs and EPI and dilated common and pancreatic ducts? I have not been diagnosed with pancreatic cancer but I am concerned especially since I did have uterine cancer 17 years ago. Thank you

Several weeks ago, my husband and I (we are both members of this blog) saw a post by a member whose husband of 45 years, went for the whipple procedure, only to have it canceled because of spread. Now, we are in the same position. After being diagnosed as stage 2 in early March, having gone thru 6 months of chemo and 6 weeks of radiation, the whipple was scheduled for Dec. 9. An hour and a half after the surgery started, I received a call from the OR that they were not doing the whipple because of 3 small spots on the stomach lining. Surgery still lasted for 5 hours for removal of gall bladder and rerouting of the bile duct etc., but the tumor was left behind. Needless to say, we are devasted after all these months of positive hopefullness. We, too, are married 45 years, so the story resonated with us. Is there a chance we could connect with that posting again, since we can't find it now. We are coming to Mayo Clinic in January for a 2nd opinion. Up until now, we have been going to Froedtert in MKE., Wis.

I was diagnosed with squamous cell carcinoma on the base of my tongue but during a CT an incidental find on my pancreas which is a 4.5cm tumour on the tail. I'm still waiting for biopsy results but it is looking like cancer apparently. Really worried as now my treatment for the throat will probably be put on hold so I guess it will keep growing. My worst fear is that the pancreas is not curable as they can't tell me that yet....

Hi!
I’m Barbara. I was diagnosed in Nov 2021 with IPMN cysts all through the main pancreatic duct. I had total pancreatectomy on 11/11/21. At the time Dr said pre-cancerous but 3/27 lymph nodes were cancerous.
I started chemo in Jan 2022 after a PET scan showed cancer had metastasized to several small places on bottom of both lungs.
Chemo dropped my tumor markers and scans showed clear except for a suspicious place in the surgical bed.
I stopped chemo in April and was feeling good until about July when I had increased stomach pain. Dr went back and scrutinized scans and decided I needed to be back on chemo. I started back 4 weeks ago. Stomach pain is better but this week I saw Oncology Radiologist for possible treatments after chemo. After a lot of questions and finding out I was having mild early morning headaches and nausea she ordered MRI of brain. This showed up 3 lesions with one on frontal lobe a little larger and edema.
I am now taking a steroid for swelling and start radiation on my brain tomorrow for 10 days. I’m feeling anxious but thankful for Drs questions to find out so quick and be able to get right into treatment.

Hi Barbara, how are you doing? How is radiation going?