Pancreatic Cancer Group: Introduce yourself and connect with others

Hello:
I am a 54yr old male in SLC, UT. I went to the emergency room in April 2022 for upper abdominal pain. After several scans and tests the doctor felt I had an infected Gallbladder which was removed, but other test results showed a large tumor on the tail of my pancreas. After being released from the hospital I was immediately referred to a much-respected surgeon that thought I had a neuroendocrine tumor. However, after completing a Dotatate PET scan, the tumor did not light up meaning it was not neuroendocrine tumor. Next, I had an endoscopic biopsy. Again, the tumor showed benign and even the GI doctor that completed the procedure personally said to me "It’s not Cancer". I was so happy to hear that, but the original surgeon I was referred to, was still skeptical. He said the only true way to know if the tumor was cancerous was to remove it and send it to the pathologist. I was given the option of removing the tumor or waiting a few months to do another scan to see if the tumor was growing. I decided to wait a few months and when I finally had the second scan, the results showed the tumor had not grown. After further dialogue with my doctor and getting a second opinion, I elected to have the tumor removed on 9/29/2022. During the process of removing the tumor the surgeon hoped to complete the distal pancreatectomy and splenectomy laparoscopically and robotically. Unfortunately, there were some complications during the procedure and they had to stop the laparoscopic procedure and open me up to complete the surgery. When the results came back from the pathologist, my doctor informed that two of nine lymph nodes showed cancer cells and I was now in stage III cancer. I can’t explain the feelings when you hear "stage III pancreatic cancer". I was devastated and hurting for my mother who was at my side when I got the news. Four weeks after my surgery I'm home recovering. I still have a drain tube coming out my back due to excess fluid buildup internally, but I'm also having a difficult time sleeping and I can’t help but think of what's going to happen to me, my family, my job, my home, everything. Like others, I turned to the internet for more information on pancreatic cancer, which is even more depressing. I stumbled across this website, which after reading several posts makes me feel like I'm in the right place to connect with people going through similar challenges.

My name is Phil.
I 69 years old. Diagnosed with Pancreatic Cancer in June of this year. Had a successful Whipple procedure at end of June. Now halfway done with Chemo therapy. Stage III . I keep loosing weight was 245 before surgery at 185 now.

@lanceh For what it's worth I wrote a book about my experiences during the first 6 of 12 infusion sessions. The book includes both "technical" explanations and some "meditations" I had.

The explanations include cancer vs pancreatic cancer, common procedures, glossary of terms, and my own journey during therapy.

The meditations include how I've been "dealing with" my therapy and prognosis so I don't miss the good days by fretting about my situation or speculating on the future - https://www.amazon.com/One-Path-Among-Many-experiences/dp/B0BB665CHZ

I also set up a website to keep family informed that is open to the public - https://www.caringbridge.org/visit/robertkoshinskie

Perhaps you'll find something useful in the book or site.

Best,

Welcome new members!

@mamarina, that sounds like good news that your tumor shrunk enough to make surgery a possibility again. Have you decided to go ahead with surgery?

@johnlair, good for you for persisting when you knew something wasn't right. You've heard the term scanxiety, right? It's a thing to be nervous before your scans. I think even getting them as frequently as quarterly, one never completely relaxes about an upcoming scan. Do you do something kind or enjoyable for yourself after the scan to associate it with something to look forward to?

@stageivsurvivor Thanks for spelling out FDR (First Degree Relative). Like @knolmom and @rexsan20, I was wondering. 🙂

@lanceh, you have had a rocky road. Thank goodness your original surgeon persisted. Hearing you've got stage 3 pancreatic cancer is a gut punch and one can't help but be concerned for the future and family - everything. You have come to the right place to connect with others, survivors like @stageivsurvivor @philv @thebobk @marvinjsturing @nhow234 @aprilg and many more.

@philv, what recommendations has your cancer team offered to help with the weight loss?

For my weight loss
Just try and eat and follow nutritional guidelines.
Fooddoes not tSte good to me and a get full quickly.

@lanceh I, too, had issues with taste and feeling if fullness. Part of the problem is that I have a persistent "bellyache" and foods I can tolerate one day may taste bad a few days later. If I try to force food/drink then I feel worse, occasionally needing pain killers to mitigate chest/back pain. It's kind of like tossing darts at a moving target while blindfolded 😣

Coleen my surgeon ( miami cancer institute ) was very discouraging actually as to a good out come for me. And said they would do it if I was 100% on board with all that could go wrong and a painful recovery. He wouldnt be able to do it laparoscopically and said realistically it might gain me another year and half.. and id have to have surgery nov 3 before too much scar tissue from rads developed ..
as did the other opinion from johns hopkins ..
who said if I got radiation he wouldnt do surgery
Well I did the proton mri guided radiation the last week of Sept.
thank you all for input

Philv
On weight loss not much. Ive talked with a few nutritionists but they really werent much help except drink boost and ensure. I have 2 stents billiary and dueodenal so my food intake is somewhat limited
I take enzyme creon , i hired a nutritionist who evaluated my bloodwork and gave me various supplements
I add whey powder, canned coconut milk endures to smoothies. But I can only ingest small amts at a time so I only maybe drink 8 oz , 4 oz at a time. Im struggling to maintain my pitiful weight

Sorry you're having those problems. Luckily I'm not in any bad pain. I know you never feel like eating if you're in pain.
Stay strong !

Not sure if i mentioned the end of Aug after believing I was borderline resectable which got me thru chemo ( which kicked my butt) my surgeons told me they couldn't do the surgery. That was devastating so got my wits about me got that johns hopkins second opinion , which wasnt favorable but he would try… only if i didnt do rads , then decided on the radiation