Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you for allowing me into the group. The following is my latest results from a MRCP I had done

PANCREAS: Multiple cystic lesions are redemonstrated. There are 2 dominant lesions in the head measuring 2.0 x 1.7 cm and 2.2 x 1.4 cm, These both show demonstratable communication with the main pancreatic duct. There numerous additional smaller cystic lesions that appear stable. No mass or ductal dilatation.

I'm waiting for input from my doctor as to what should be done next. Has anyone had a similar experience and can tell me what to ask my doctor. Needless to say, I'm very anxious about this.

Hello from Canada. I was diagnosed with stage 3 pancreatic cancer (head of pancreas and spread to multiple lymph nodes) in Jan 2021, had Whipple surgery in Feb 2021 and started chemo in April 2021. (12 folfirinox treatments). I am approaching my 2nd anniversary of diagnosis. I am now on insulin and take creon to aid digestion. My symptoms included changes in urine and stool colour, rapid weight loss and jaundice. Recovery has been slow and I continue to have challenges but am grateful to be alive! In my opinion, all of my issues are a
small price to pay for still being here!

krf,

A wonderful story of success beating this horrible disease - it is so refreshing to hear!

I was diagnosed November 16, 2022 when I developed jaundice. I had a stent, ERCP, and, biopsy confirming the xray finding. The procedure set me back 10 days with my strength and energy, and I am struggling with weight loss. Better since my oncologist started treating me with pancreatic enzymes. I was diagnoses with a borderline resect able pancreatic cancer. I had BRCA 1 and two previous cancers 2001 breast and 2005 ovarian. My previous chemo treatments I did very well, however my first treatment with Folfurinox was really rough, I was hospitalized for two days afterwards. I am struggling with fatigue and my blood pressure has been low since the treatment. I will be trying to build myself up again with nutrition and increasing physical activity as much as I can. I feel discouraged.

It's not an easy journey. I just finished my sixth Folferinox treatment and it is very strong stuff, as my doctor keeps reminding me. Seems everyone reacts differently, and I have found that some side effects vary from treatment to treatment. I have had side effects such as diarrhea, GERD, fatigue, and nausea. My doctor has related that many folks have much stronger side effects and require hospitalization. He says that I have tolerated it well. It's very difficult not to be discouraged, but you are not alone. Best wishes to feel better.

You have overcome so much in the past two decades. Take each day as it comes. We are all fighting with you. We can do this. Stay strong.

Thanks!

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.

Had every side effect except puking. My eyes felt like someone was stabbing them.they throbbed all day and I couldn’t go out into the light. Neuropathy on toes and fingers that lasts a long time and slight hebe palpitations .

Here’s the kicker-it didn’t work!
They tried another regime that didn’t work and now I am no longer at the curative stage but palliative with starting with a small tumor near my spleen. It’s now too big for surgery and they believed it has spread to liver when I kept telling that I wanted to stop and do radiation
Wish I was stronger with my treatment.

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.