Has anyone had surgery of the tumor located on the vein of pancreas

Hi @pat125, I moved your question to the Pancreatic Cancer support group where you'll get responses from others who had pancreatic cancer located in the head of the pancreas with vein involvement like @wjk @cubgirl1960 @mamarina and others.

I think you'll be particularly interested in hearing from @stageivsurvivor, who helps so many in the group with their vast knowledge and experience. Read more of their story here: https://connect.mayoclinic.org/comment/868035/

Pat, are you scheduled for surgery? Is it an option for you?

Hi Colleen,

Thanks for your message.
For not surgery is not an option since the tumor is located on the vein.
But I had Oncosil treatment last month and hopefully it will help to shrink the tumor.

I had involvement of a vein, I had six months of chemotherapy and then was able to have surgery when the tumor shrank. Recovery from surgery has been a slow process. New techniques of radiation are also promising

Which vein? During my surgery, my margins were tight on portal vein. Surgeon bisected portal vein. Pick a good surgeon with vein experience and see what she or he says. Depending on type of involvement dictates pre treatment and success of surgery/surgery option.

I did. After 6 rounds of chemo and the 3 week radiation treatment (higher intensity) my tumor shrunk by 80% and was dead. The surgeon, Dr Kendrick just peeled it off. And he did it laparoscopically The University of Michigan wouldn’t touch it. I spent 5 nights in the hospital. I had no issues with feeding tubes or infections others have had. I am not diabetic.
It’s been 10 months I am working on digestion. It seems to be different for everyone. Some people do better than others. I am guessing it depends a lot on what they find during surgery and what has to be removed. I had lots of diarrhea couldn’t drink any fluids really without diarrhea. Need to stick to chicken and rice very small meals every 2-3 hours. I take Imodium AD to help with the dumping syndrome you get when you don’t stick to the small meals and not drinking fluids with meals. It’s much better if you wait 30 minutes after eating to drink fluids. Or drink 30 minutes before. I drink coffee most mornings now with my egg and cheese sandwiches I and it’s fine. I bring snacks in my car. Have been eating Happy Tot baby food lol as a snack cause it’s easy to bring everywhere.
Get lots of exercise, very important. I walk over a mile daily and ride my horse a few times a week. We are back to jumping fences. 🙂
Best of luck to you!

I had portal vein resection performed as part of my Whipple procedure. Although imaging revealed the tumor was in close proximity and the need to operate sooner than later, it wasn’t until I was opened and the gross anatomical examination being performed that the true extent was none. The tumor was in contact with the portal vein and post surgical pathology confirmed vascular wall invasion.

On my surgical team of three were two highly experienced surgeons-one having done 1500 at that point in his career and the other several hundred. In addition, both had expertise in liver transplantation which requires vascular surgery skills. Hence the reason why the Whipple continued with portal vein resection. Had there not been anyone present with vascular surgery skills, the likelihood of the surgery being cancelled was significant.

The invasion of the portal vein was the source of stage IV spread detected a week after surgery. Aggressive treatment with Folfirinox of 24 cycles and another 22 of 5-FU/Leucovorin led to being declared cured and exceeding 11 years as a stage IV survivor and thriver.

Thanks nvan22.
Sending you blessings and hope you will be on the mend side soon.

Where did you have your Whipple performed at? Hooded they detect the spread after surgery? Where did you have the post surgery chemo done at?

My Whipple with portal vein resection was performed at Weill Cornell/NY Presbyterian Hospital. For some context, the initial scan done as the diagnostic work-up that found the mass occurred on Monday, June 11, 2012. An EUS and ERCP followed on 6/14 and 6/15 respectively. On the early afternoon of Friday 6/15 I got word that I was eligible for the Whipple (or so it was believed). Surgery was planned for the following morning but at my request was rescheduled for Monday 6/18.

Surgery was on 6/18. During the first week of recovery, it was thought my stomach or intestine was slow in waking up. I had no urge to have a bowel movement and the team would not let me have solid food until I had one. I explained that was probably going to be hard to do as I was eating very little in the week that the diagnostic work-up was occurring. To make sure, a CT was ordered on 7/25 to see if a bowel blockage was an issue. It was not, however what the radiologist noted different in comparing the the initial scan is that the beginnings of metastatic disease was now evident in the liver. It got their from the tumor in the head in contact with the portal vein and a pathology examination of the surgical sample showed the tumor invaded the vascular wall. So the portal vein served as a pipeline in seeding several lobes of the liver with metastatic cells.

CT, MRI and PET all have limits to sensitivity of detection. Back in 2012, it was between 0.4 to 0.5 cm for a CT or MRI to detect metastatic disease. In the 14 days between scans, the metastatic disease grew rapidly. Pancreatic Acinar Cell Carcinomas are highly aggressive and fast growing. My profession was cancer and immunology research and the doubling time of metastatic cells is quite impressive in their speed at which they double. So the metastatic spread was already present in the liver but too small to be detected on 6/11/2012 and there was no justification to do a scan only 8 days later. That is how I ended up having the Whipple performed and being stage IV. When I was opened on the OR table and a gross anatomical exam made by the surgeons of which there were three in attendance, the metastatic spread was still micrometastatic and not detectable by the naked eye at that point.

My post surgery chemo was also done at Weill Cornell. Although I had two large medical centers 3 miles equidistant to my home, I was aiming for consistency in treatment. Neither was an NCI Comprehensive Cancer Center with a designation of Center of Excellence in Cancer Treatment. And also unlike Well Cornell, neither had a high-volume pancreas program, oncologists whose sub-specialty was pancreatic cancer and essentially no experience in treating pancreatic cancer patients.

My life was on the line and why I endured a 4”20” round trip train and subway commute every day not just for my chemo appointment every 15th day, but to go to work in the research lab where I was involved with cancer and immunology research. I advocated for more aggressive treatment with Folfirinox. Thankfully the head of solid tumor oncology who was my oncologist agreed. So instead of doing 12 cycles of Folfirinox, I did 24. Because there was concern with permanent neuropathy, he administered Folfirinox in cycles of six followed by six cycles of just 5-FU/Leucovorin. The intent was to give my body the opportunity to recover from the oxaliplatin. I had the original version of FFX that is 20 higher concentration in oxaliplatin and irinotecan then todays, (m)FFX. I got the full dose according to my body mass. I did 46 cycles of chemo in total.

Why did I advocate for going beyond standard of care? The term NED is defined as no evidence of disease detected using conventional imaging such as CT, MRI or PET. They all have a limitation in sensitivity. So minimal residual disease (MRD) can exist in the body and remain undetected. If one’s immune system is strong, all is good. But if the immune system weekends or is challenged, any MRD can result in progression. And with the statistics showing 80% going on to progression usually within 2 years of surgery, I was not interested in buying time. I was focused on long-term survival and cure if possible although no one through that was possible being stage IV and with a highly aggressive form of the disease.

I was 55 at the time, no co-morbidities, never smoked, rarely consumed alcohol, ate a healthy non-fat, low fat diet. No sugar, red meat or processed foods. And I did strenuous bike riding logging 100-200 miles a week at times. I had faced adversity before and perseverance was a quality I was known for. It was do or die and so I did. And in 11 years, several oncologists and surgical oncologists consider me cured and there is increasing reports of late stage patients that went through Folfirinox and became long-term survivors.