Thinking of pursuing a second opinion at Mayo Clinic

Posted by t786445 @t786445, Nov 18 11:06am

My wife was diagnosed 6/2024 with a penny sized malignant neoplasm of body of pancreas.

Original Chemo cycle started July 15 and included Folfirinox and after the prescribed cycle a scan was done and the mass essentially was unchanged but no mets detected. This treatment was pretty harsh.

Currently on a chemo treatment of Gemcitabine/abraxane with a 2nd panscan scheduled for 11/25. She is tolerating this treatment better and less side effects.

After the 1st scan results, Cle Clinic Surgeon is reluctant to perform surgical removal at this time due to loc proximity to critical blood vessels.

Radiation is being considered next with possibly a break in the chemo therapy.

Has anyone experienced this path of treatment? Would it be beneficial to pursue the Mayo Clinic for a consultation?Looking for beneficial options and education.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Hello @t786445 and welcome to Mayo Connect. You are wise in seeking another opinion and Mayo Clinic would be a great place to seek a consultation. Here is information concerning obtaining an appointment at any of the three Mayo Clinic locations, http://mayocl.in/1mtmR63.

We have several members of the pancreatic cancer support group who have visited and been treated at Mayo Clinic, including @tjk and @marciak9. If you would like to read about @marciak9, and her journey with pancreatic cancer, here is a link to her Spotlight, https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/lead-with-love-meet-marciak9/

How is your wife feeling now?

REPLY

She is feeling well. Fatigued at times but not all of the time.
Mental disposition is rougher than the physical disposition currently. Complete roller coaster of emotions for us both. This diagnosis came as a lightning bolt for us as she is really healthy and always was except for this cancer. What a lonely disease this is.

REPLY
@t786445

She is feeling well. Fatigued at times but not all of the time.
Mental disposition is rougher than the physical disposition currently. Complete roller coaster of emotions for us both. This diagnosis came as a lightning bolt for us as she is really healthy and always was except for this cancer. What a lonely disease this is.

Jump to this post

Very lonely, indeed. I had a similar path. Diagnosed 8/22, did 2 cycles FOLFIRINOX with tumor progression, switched to Gem/Abrax and tolerated much better. Plus, tumor responded very well! Local surgeon refused surgery due to vascular involvement. Oncologist recommended continuing chemo for 6 rounds then completing 28 days if radiation. Once radiation was complete, I saw Dr Truty at Mayo. He is an absolute expert in PC with vascular involvement. I had surgery 7/23. I would definitely recommend seeking a 2nd opinion for your wife.

REPLY

Many on this thread have travelled a similar journey and are still travelling!!!
Most important to get a second, even third opinion!!
Options like nanoknife are now on the horizon as well as traditional whipple. While the chemo is doing its job it’s time to get out and speak to others.
Where are you located?
Hopefully you can get in to Dr Truty. If that are is difficult, there is Dr Evans in Wisconsin, Dr Abdalla in Atlanta and others.

REPLY

I had Dr. Truty as well. I also had vascular complications with concern about possible celiac and/or common hepatic artery stenosis, with the discussion for possible need of arterial reconstruction. My vascular surgeon was Dr. Bernardo Mendes. The great thing about Mayo and Dr. Truty's team is they work very closely with a select group of doctors that are experienced in PC and the surgery that comes along with it. We met with each of the team before surgery and I must say it helped us a great deal to determine a plan.

REPLY

I appreciate that so I am certain that Dr Truty is very busy. In your opinion what would be our best angle to get in for a consultation by that team?

REPLY
@t786445

I appreciate that so I am certain that Dr Truty is very busy. In your opinion what would be our best angle to get in for a consultation by that team?

Jump to this post

First, you need to have imaging and chart info sent to Mayo. From there, it's a surprisingly quick process for Truty to review and schedule 3 days of appointments and scans and labs. Its all very organized and thorough. Perhaps someone here has contact info for his team readily available. I will look through my stuff and see if I can locate a specific email or phone number for you.

REPLY
@jeffp

I had Dr. Truty as well. I also had vascular complications with concern about possible celiac and/or common hepatic artery stenosis, with the discussion for possible need of arterial reconstruction. My vascular surgeon was Dr. Bernardo Mendes. The great thing about Mayo and Dr. Truty's team is they work very closely with a select group of doctors that are experienced in PC and the surgery that comes along with it. We met with each of the team before surgery and I must say it helped us a great deal to determine a plan.

Jump to this post

I had Dr Truty as well but chose not to have the surgery. Did they remove your stomach pancreas and spleen? How are you doing?

REPLY
@marciak9

I had Dr Truty as well but chose not to have the surgery. Did they remove your stomach pancreas and spleen? How are you doing?

Jump to this post

I had my pancreas, spleen, gall bladder, and duodenum removed. I'm doing ok but still consider myself recovering and learning. My surgery was in June '24. I am still on the feeding tube for most of my nutrition because I have difficulties eating more than one or two small meals in a day. It makes me feel "not well" after eating so I'm trying to get to the bottom of that. I am told each person is different and it can take a year or more before things start working better. More on me here, https://connect.mayoclinic.org/comment/1168048/.

My cancer responded well to the chemo and radiation. I did consider not having the surgery but in my case surgery was the best for long-term survival. But the recovery is hard.

REPLY
@jeffp

I had my pancreas, spleen, gall bladder, and duodenum removed. I'm doing ok but still consider myself recovering and learning. My surgery was in June '24. I am still on the feeding tube for most of my nutrition because I have difficulties eating more than one or two small meals in a day. It makes me feel "not well" after eating so I'm trying to get to the bottom of that. I am told each person is different and it can take a year or more before things start working better. More on me here, https://connect.mayoclinic.org/comment/1168048/.

My cancer responded well to the chemo and radiation. I did consider not having the surgery but in my case surgery was the best for long-term survival. But the recovery is hard.

Jump to this post

I am 62 and have 7 grandchildren. I decided not to have the surgery because I was afraid the cancer would come back and I would be too weak to make it through chemo. I also felt I would be so immunocompromised that I wouldn't be able to spend time with family. Hang in there! It sounds like you are healing well!

REPLY
Please sign in or register to post a reply.