Surgery Follow-up and pathology report

I had stage one cancer, and it was by Direct Tumor Extension: Ampulla of Vater or sphincter of Oddi, Duodenal wall,

The Whipple surgery removes all of those parts & more. In my case the removal of that sphincter valve was very important and stopped my pancreatic cancer progression.

I was very lucky because all of that was discovered very early if you recall my story, my Ampulla valve closed up for a couple of months giving me symptoms “no liver or pancreatic drainage for at least two months. I was the fellow getting eaten by big Red ants! My first ERCP caused all drainage and my symptoms were gone!

Surgery then confirmed no more progression into the pancreas stopped that movement. I need to know chemo and I’ve luckily been good since.!

silver182 I do remember your story as it is somewhat similar to mine. Only in mine the tumor was in the head of the pancreas and as it grew it blocked off first the pancreatic duct and severe symptoms from not digesting fats occurred last December. Minor one about a year ago. I was eventually placed on pancreatic enzyme replacement (creon). Repeated requests to check my pancreas was ignored. I went into the hospital May 30th for another issue and my bilirubin was supper high and that was because the tumor had grown enough to block the bile duct and I was jaundice. That is when my tumor was found and a stint was placed in my bile duct that permitted drainage from my liver similar in outcome to your drain. For unknown reason I had no being eaten by ants symptom. Maybe I did not go long enough with my bile duct blocked.

Thank you for the info on the medical terms for the bile duct at the duodenum.

Hope you stay cancer free going forward.

@happyjack, have you had an appointment with the oncologist in the meantime? What did you learn?

Colleen Young, I am still waiting for a call to schedule an appointment with an Oncologist who is supposed to be one of the best if not the best in my hometown. Right now it seems that they are concerned about me fully recovering from my surgery and I have home health and home PT that come out once a week.

My surgeon had advised me that there is Chemo available that would not make me sick or make me feel bad. I cannot understand why then they are waiting for my full recovery and have PT trying to get me stronger if not to survive the Chemo. I have read about people going into the hospital from the side effects of Chemo and having to stop the treatments because they are so ill. Sounds to me like this easy Chemo is just a lie to keep me going forward with treatment.

As I understand it the Chemo is not supper effective anyway. That is why I had the surgery first instead of having Chemo and Radiation treatments on my tumor before the surgery. Seems to me that Chemo at best will slow down the growth and, in some cases, (not many) will reduce the size of the tumor. It will not it seems to me kill the cancer inside me like the treatments for breast cancer did for my sister. When she had surgery after chemo and radiation the lab report was negative for any live cancer cells. All that remained was dead cancer cells.
Just waiting to see the oncologist and see what he has to say.

Thank you for the follow up. Best of luck to all with your fight against cancer.

Hi
I am from the uk and have my first oncology appointment tomorrow. I think the plan would be to start the chemo next week, 6 weeks after surgery to give you time to recover. I’m not sure what treatment will be offered but like you , I have read the nasty effects of both and can only try and feel positive that it won’t be too debilitating and that it will be worthwhile.. fingers crossed 🤞

suzanna61, that is pretty much my expectation also. My appointment is today (20th) in few hours. My surgeon said something about an easy chemo. As I said I think that is a lie to get me to continue with the harsh chemo. I am going to try my best to slow things down as my health is poor and I am not looking to hurt myself any more than I already have. I am going to push for more testing and imaging as my last was a CT scan the first part of June. My concern is that the cancer has spread and is growing in other places.

I did the Whipple surgery fast as I could with the hope to catch the cancer early. I think the surgeon knew my cancer was already at least in stage 3 as my tumor was 5 cm. I am still trying to recover from the surgery with home health and home PT coming out to my house every week. I hope that will give me more time before the doctor wants to hurt me with chemo. And will do the cancer tumor marker and imaging test.

Good luck with your fight with cancer.

The appointment went well, I think. The oncologist brought up testing before I did. His take on it was the 9 lymph nodes that had cancer cells indicated the cancer had already spread. I have a PET scan on the 30th and they took blood to check for cancer markers. And he wants the surgeon to put a port in for chemo. He said he will go easy so as not to hut me. That diarrhea would be the only side effect. I am still on a stool softener a day, so I have room to stop that. And if it is another lie and the chemo makes me really sick I can just stop.

suzanna61 let us know how your appointment went.

I have good news. The PET scan showed no evidence of disease. Blood tests came back good with my CA 19-9 being just barely above the normal range. I had a port put in yesterday and will start what I have been told was mild Chemo next week. Or at least someone is supposed to contact me next week about it. I was told the only side effect would be diarrhea. We will see if that is true or not. I even had a few times I felt pretty good. But there were still many more times I was feeling pretty bad.

Such good news, @happyjack. How are you doing on chemo? How often do you have it?

I was scheduled for 21 days on and 7 days off. Oral meds were 3 500mg tablets of Capecitabine twice a day and IV Gemzar once a week for the 3 weeks and skip the off week. I did a search of those meds on this site and found that they were said to be a milder chemo than others with low side effects. But this was not the case for me. Saturday morning, I had red tingling hands. I was told this could happen and put lotion on them. They worsened as the day went on and Saturday evening the bottom of my feet started to be a little sore. I put lotion on my feet. Sunday morning things were a lot worse and neuropathy pain started. The soreness in my feet became so bad I could barely walk, and the neuropathy pain increased to a brutal level. I called the on-call doctor and advised him of what was going on and he had me stop the oral mads. He said it usually takes 2-3 weeks for Hand-Foot Syndrome to develop and for mine to happen with in 24-48 hours was indication that I needed to stop the Capecitabine. He said my symptoms could get worse and there was nothing he could do. I was not able to sleep at all Sunday night. Monday, I called my doctors nurse's direct number and left a message about the HFS and Neuropathy pain. I advised them to cancel all my scheduled appointments. Not what I signed up for. I didn't even have any diarrhea. I had just the opposite with a bit more constipation. The symptoms I had Saturday were not bad enough that I would have continued with the treatments. But after the brutal pain on Sunday, treatments are no longer an option I want continue. I gradually improved and today was the first day I could take my dog to the dog part. My feet are still a little bit sore, and I last had a little neuropathy pain last night. I will have to see if it occurs again tonight. I am starting feel better and can exercise again. I hope I will be able to continue to improve.

Thank you for checking on me and all the best to everyone dealing with cancer.