Pancreatic Cancer Group: Introduce yourself and connect with others

Absolutely!

That's wonderful, @toesz. I'm glad that you have an appointment on the 16th. I'm sure you will get some helpful information and guidance at Mayo Clinic.

Will you post again and let me know you are doing?

Thanks for the kind sentiments and informative replies. I reviewed the Center of Excellence and the first choice was the Mayo Clinic in Rochester, only about 90 miles from me! I've contacted Mayo and have a phone consult with them on Monday, the 16th.
Thanks again, Toesz

I might also recommend an opinion from Dr Doug Evans in Milwaukee. He is widely known in this field and may do a virtual second opinion.

Hello @toesz and welcome to Mayo Connect. You are wise to be looking for a trustworthy place to go for a second opinion. As @jeeplewis mentioned in his post, Mayo Clinic would be a good place for a second opinion. Here is a link for information on obtaining an appointment at Mayo Clinic, http://mayocl.in/1mtmR63.

If for any reason, you cannot be seen at Mayo Clinic, I would suggest being seen at a Pancreatic Center of Excellence. Here is a website that will provide you with information about the location of these Centers, https://pancan.org/facing-pancreatic-cancer/patient-services/contact-us/

I wish you well as you seek more information and a second opinion. Will you continue to post as you continue this process?

I’m sorry to hear of the diagnosis & wish you the best. Mayo Clinic in Rochester, MN is the first place that comes to mind for a second opinion.

Hello All,
I've recently been advised that I have a 5cm mass in my pancreas tail, diagnosed as Adenocarcinoma, high-grade. The surgeon highly suggested a second opinion as to whether surgery was even an option, (given my overall health). Problem is, I really don't know where to turn to find a second opinion that checks the boxes for me, namely insurance, Medicare and Part A and Medigap, location, SW Wisconsin. Any trustworthy websites folks can recommend that I can use to filter for a pancreatic specialist and second opinion. thanks for any insight....Toesz

Immunotherapy is not an approved treatment at this point for us. Clinical trials have shown limited success. Some of them involve pairing immunotherapy with chemo. Many things are in trial.

If he has KRAS mutations, there are trials that are oral meds that only target these . Targeted therapies do not attempt to kill all of the cells so the side effects are much much more tolerable than standard of care chemo.

By now he should have had tumor and genetic testing to provide groundwork for research into clinical trials.

This could be an option until he is stronger.

Thanks for your response. We started out at University of Penn in Phila. After we were told that they didn't think this was Cancer, we went to a Surgeon at Jefferson in Phila. so I feel like we are dealing with very reputable hospitals. Pre-Surgery his Ca19-9 results were as follows :
April 2024 639
June 2024 1720
Early July 2024 1886 ( All of this and we were still told they did not think it was Cancer )

July 2024 1887 ( This is when we went to Jefferson , Pre-surgery )
July 19,2024 403 ( Post Surgery - Unfortunately, they did not get clean Margins but did not know this until after the Pathology Report came back )

September 2024 632
October 2024 859

He has had no treatment at all due to the Drain.

Hello @suelannon
My first question after reading your post would be is your husband going to a pancreatic center of excellence? If you list your city and state, other members will be able to recommend medical centers and sometimes even drs you might want to get a 2nd opinion from. If husband is too weak to attend in person, a video call might be a possibility.
I had distal with spleen removed in 2022 and had a drain which I’m going to go out on a limb and say that a drain from abdominal area seems pretty standard procedure after surgery. I had a pancreatic duct leak after surgery which led to a GI bleed since those are acidic (digestive) juices. I was bleeding quite a bit into my drainage bag so I got a stent put in after not eating for 3-4 weeks (I did have a TPN nutrient bag). Not giving your body any foods to digest helps to stop the leak until a stent can be put in. After 6 weeks I had an ultrasound ERCP done to assess leaking and I was all good, so the stent was removed. If the leaking hadn’t stopped then a metal stent would have replaced that initial plastic stent. I also got pneumonia after my surgery since I wasn’t able to walk around much after my surgery; not fun. I also got pancreatitis and then Covid (all this with 1.5 months after my surgery). I did lose 50 pounds from time I got started getting my symptoms since I had extreme nausea and some of that weight was lost after surgery and while on the no food diet before stent insertion. I gained almost all weight back now! Did any drs run a CA19-9 blood test otherwise known as a “tumor marker?