Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you. I am 84 and have been told by two different doctors that I am not candidate for the Whipple surgery. May I ask where you had surgery and what doctor performed the procedure?

I had Whipple when I was 85 now 87 doing well. It's not your age but your physical condition. Had my surgery at MSK in NYC with the best, Dr . Drebin . Do more research and go to a large cancer center hospital. Let me know if you need more help. Be strong and stay on top of this problem.

If the neoplasm is diagnosed as malignant, cancers of the pancreas need to be treated at a high volume pancreas program such as those found at a National Cancer Institute Center of Excellence or a National Pancreas Foundation recommended comprehensive cancer center using a multidisplinary team approach. This is not the type of cancer to be treated at a community hospital or medical center. It requires a GI oncologist whose specialty is cancers of the pancreas.

In Camden is Cooper Medical,Center which is affiliated with MD Anderson. The Cancer Institute of NJ/Rutgers Medical School is the only NCI designated Center of Excellence and has a pancreas program. In Philadelphia, Fox Chase Cancer Institute in NE Philadelphia is an NCI Center of Excellence with a very good pancreas program. Thomas Jefferson University Medical Center in Philadelphia is a NPF recommended center with a noted pancreas program.

Make a list of questions for your oncology consult. I had so many tests & different folks to talk with before I found out my stage & "prognosis". I had thought I was stage I until the oncologist told me I was stage IV. On 29 June I will be at 3 years after being given 11 months. My "local" oncologist is great!

@stageivsurvivor Every time some doctor tells us no point in a particular treatment because in his/her opinion, it looks like it has metastasised (every shadow on a scan is a lesion!) and really the treatment will not do much, I look up all your posts - about being our own advocate and to keep fighting.

I learned early on from my days working as a medical technologist what patients told me…you are your own best advocate. If you can’t get through to a physician or unhappy with their answer, cut the losses as they say and move on. My first rule,of thumb is go to a comprehensive medical center in a major city and then look for a clinician-scientist…one who also conducts clinical trials. They are the most knowledgable and best at “thinking outside the box” . Also it is important to be assertive but in a respectful manner. I found that doing my own research and preparing my arguments to defend my position gets the respect of care team members. Years after recovering from stage IV pancreatic cancer, I went back to visit my care team. I’ll never forget what they said….that they respected me for my efforts and having taken a deep interest in my case. They looked at me as one of the members of the team and not just the patient. I never sat in the exam room with that “deer in the headlights look”. I knew my life depending on engaging the care team and showing them I had strong resolve and perseverance.

Hi @valerina30, what a scary time for you. Did you check out the MD Anderson program at Cooper Health in Camden?
https://www.cooperhealth.org/services/md-anderson-cancer-center-cooper

We followed the advise for questions and just finished doing CT angiogram as well as PET and MRI scans yesterday. Met with the surgeon and the scans came back in our meeting. We went from talking about resection and laparoscopy to see if cancer was in abdominal wall to doing a liver biopsy as cancer had already metastasized to several places in my liver. I am not a candidate for resection now, but the hope is that I am one of the 5% that has the gene that responds to chemo.
As mentioned by one of you, yesterday was a tough day. I want to fight but last night was stuck in the “what does the world look like without me in it?”.

My wife will eventually be a widow. I may not ever see grandchildren. In my small , rural school they won’t be able to replace me as teachers are in such short supply.

It is defeatist, I know, and I won’t sit with these thoughts long, but I have to work through all the feelings that go with this diagnosis.
I’m assuming I have to grieve the life I thought I would have as I transition to the life I will have.

Biopsy tomorrow and hopefully getting a port next week.

I have never cried as much as I did yesterday afternoon…with my wife, with my family as we called all of our immediate family.

Your stories help as I am rereading the fact that some of you are much further in life than the statistics would show. Even the doc said each of us is very unique and wouldn’t give me a “how long I have” estimate. She only said without treatment would be 6 months.

I’m sitting here in bed at 4 am and I can’t sleep anymore. Time is the most importantly thing I have left. I want to spend it fighting this and being with my family as much as I can.

Sorry for the ramble.

We followed the advise for questions and just finished doing CT angiogram as well as PET and MRI scans yesterday. Met with the surgeon and the scans came back in our meeting. We went from talking about resection and laparoscopy to see if cancer was in abdominal wall to doing a liver biopsy as cancer had already metastasized to several places in my liver. I am not a candidate for resection now, but the hope is that I am one of the 5% that has the gene that responds to chemo.
As mentioned by one of you, yesterday was a tough day. I want to fight but last night was stuck in the “what does the world look like without me in it?”.

My wife will eventually be a widow. I may not ever see grandchildren. In my small , rural school they won’t be able to replace me as teachers are in such short supply.

It is defeatist, I know, and I won’t sit with these thoughts long, but I have to work through all the feelings that go with this diagnosis.
I’m assuming I have to grieve the life I thought I would have as I transition to the life I will have.

Biopsy tomorrow and hopefully getting a port next week.

I have never cried as much as I did yesterday afternoon…with my wife, with my family as we called all of our immediate family.

Your stories help as I am rereading the fact that some of you are much further in life than the statistics would show. Even the doc said each of us is very unique and wouldn’t give me a “how long I have” estimate. She only said without treatment would be 6 months.

I’m sitting here in bed at 4 am and I can’t sleep anymore. Time is the most importantly thing I have left. I want to spend it fighting this and being with my family as much as I can.

Sorry for the ramble.