Pancreatic Cancer Group: Introduce yourself and connect with others

They just can’t really know. One sleeper cell and boom!
Don’t give up!

We hear your frustration. And your fears. The reality is as you said.
The key to fighting this disease is overall health. If he has no co-morbitities it is much easier to fight this. We are working hard to make this a chronic disease and there are long term survivors. But the initial treatments must be spot on, from the beginning, which many of us battling this have learned. Now is the time to get second opinions. Very important.

No lymph nodes were involved. The cancer was contained in the tail. Whipple was performed successfully and the surgeon assured me the cancer had not metastasized. Famous last words!

Did they remove any of your Lymph Nodes and if so, how many had PC ? My Husband had
Surgery in July 2024. Tumor was in Body & Tail of Pancreas. They removed 20 Lymph Nodes and PC was in 14 of the Lymph Nodes.
He had thee same experience with Surgeon coming in and declaring they got it all. He was ecstatic and I was very critical. Knowing that the Lymph Node System is like a Highway with many Exits, how could they know that it was not in any other parts of the body.
The plan was to do Chemo right after the Surgery but he ended up developing a large abscess
in his chest a week after surgery and had to be rushed to the hospital where they inserted Drains. While in the hospital, his lung collapsed. He went home 5 days later and he developed Pneumonia even though he was on very strong antibiotics. They put him on a Third antibiotic. He ended up losing 50 lbs and was extremely weak. Drains ended up being in for 6 Months. After all of this time, we saw the Oncologist and we were told, he was much too weak for any kind of treatment.
The next CT Scan he had, showed multiple nodules in his lungs so we went back in for a Lung Biopsy and sure enough he has PC Cancer all through his lungs. He is now stage 4 .
His CA-19 levels keep going up and in June it was nearly at 11,000.
He decided No more tests or Doctors until September. He wanted to enjoy the Summer with his Family and go fishing and just enjoy Life. He has honestly had a really good Summer so far. He does get pain in his back, his side and his abdomen but it comes and goes and does not stop him from doing anything.
We go back on September 12th for a PET Scan and all of the Blood Work. I am very nervous about this visit but it was so nice to just not think about all of this for a while. He say right now that he does not want any chemo but he could change his mind and I have told him I would support any decision he makes. We are 71 and celebrated our 50th Wedding Anniversary in July. We are each others Best Friend and I can't imagine my Life without him.
After those 6 Months of him being so sick after Surgery, I thought I was going to lose him then. Now that he is doing so well even though he is stage 4, I feel like he will be here for a long time. I wish someone would tell me what I can expect for the future but I always feel like
we are completely in the dark. Up till now, Oncologist has not even suggested Chemo or any other Treatment. I once asked the Oncologist what I should be on the lookout for and she told me nothing, just go home and enjoy each other and help him get stronger.

Thanks 😊 I tried that but I must have clicked on the wrong 3 dots as my 3 options did not include edit.

When you want to edit something you already have put out here, click on the three dots & look for the edit choice. 🙂 Is in an "administrative box saying you want to edit" 🙂 then fix it & click save comment.

After almost 3 years of fighting this disease I noticed theres a point where the physician no longer sees the ability to overcome this as possible. Those are horrible words to hear and I'm very sorry you have to deal with that now. I can see that just as frustrated as we are to fight our disease, so the physician becomes frustrated as well and no longer sees us as a person, but as another failed statistic. It's hard on them too and they can become insensitive. There is the rare case where the physician wants to push for your own good and not for their own case studies and recommends procedures that are not of the typical SOC (standard of care). I heard about histotripsy through this site and when my soon to be oncologist mentioned it as part of her speech at the Pancreatic Walk for Cancer earlier this year; no dr recommended it to me; it was my sister and husband reading up on it that pushed me to do it and,it had positive results. We got the fight in us and we are a cohort pushing through to extend our lives and we can gain this through this online forum by sharing results until a cure is available. Party on Garth!

My current oncologist said now it’s like shuffling chairs on the Titanic.
Boom.
After a few days of hearing that over and over in my head I am now looking for another physician. I refuse to be a number in the lobby cattle call.

Sorry meant to say that my mutation is resistant to cancer. Don’t know how to edit my comment.

So sorry to read this. I am of the same mindset that once your oncologist writes you off they just do the standard protocol. My original diagnosis was promising stage 2 and no Mets with surgery after chemo. Given what I had heard about PC I was thrilled I may have 3-5 years after chemo and surgery. Bad on my part to not inquire as to the possibilities of this not working. Now none of this is an option and my years turned into months. A real gut punch to say the least. I wasn’t even told about my mutation being nonresistant to chemo. I read that online after research. Praying for all those fighting this beast!