Total Pancreatectomy

Hello @isaall888 and welcome to Mayo Clinic Connect. I am very sorry to read about your sister's diagnosis. How wonderful you are such a great advocate and support for her to join Connect.

You will notice that I have moved your post into an existing discussion on this same topic, which you can find here:
- Total Pancreatectomy: https://connect.mayoclinic.org/discussion/total-pancreatectomy/

I'd like to bring in members @mariouk @kjrita and @luckyone4321 who have been part of this discussion to see if they can offer you some support for your sister.

What was the anticipated recovery time shared with your sister by her surgeon?

My sister laure was diagnosed with pancreatic cancer stage2. She went through chemo then had surgery. They removed pancreas spleen and 2/3 of stomach. Some blood vessels had to be reconstructed since tumor was all around celiac artery and other blood vessel. She is now struggling with the new life. Diabetes type1, uncontrollable sugars, diarrhea as soon as you eat something, throwing up, being tired all the time. It's only been a month since the surgery so we are hopeful it will get better. She started having lots of lower abdominal and back cramping. Anyone experiencing such symptoms. Thank you all of you for sharing your journey. As soon as my sister feels better, i will have her joint the group. I am trying to understand as much as possible so I can help her deal with this struggle. Thank you.

@luckyone4321 I am curious to see how you are going and I do hope you have found a good balance! I am a candidate for the same surgery but I am lucky as i dont have cancer yet and it is a precaution action.

Hey all I am new here and this chat was recommend by the moderator @colleenyoung !

You can find my story here
https://connect.mayoclinic.org/discussion/six-non-invasive-ipmns/
I might be lucky and my main concern atm is the surgery, recovery and life expectancies when one has no pancreas ! I do appreciate it’s not an easy journey, far from it but with the right support , which I am so lucky to have in my wife and daughter (she is only 7) ! I would love to connect and get to know you and be pen friends like the old days !!

@ luckyone4321 I feel yah. It sounds like you got one answer though with your Dexcom stopping the insulin. That's good. I have a G6. I yet haven't made a commitment to an insulin pump...kind of because I was not surrendering to this whole thing either. My A1C went up recently because I didn't want to deal with it. I was doing just enough to get by, so to speak. Now I am getting it under control...one day at a time, right? I am not fond of changing too many things at one time. Then, I don't know what is causing the symptom. You are now in my prayers.

@luckyone4321 - Hello. I am not sure how I missed this post, but I found it this time. My surgery was 10/23/18 - my organs removed I am very much like you in what was removed from my body. I would be happy to talk further and answer questions. It was a very difficult recovery with having the pancreas, duodenum, and glands removed. I too had to adapt to now being type 1 and never was type 2. I also take enzymes. It took time to determine how many to take with each meal and type of food. Fatty food...I increase about +3 pills, but it is variable by the person. I haven't been able to eat some raw veggies because the fiber makes it exceedingly painful digest..not worth it. I can't eat lentils either...I suspect same issue. I stick to mostly cooked veggies I also had an episode with stress yesterday, trying to do things at work as I used to, it caused me to throw up and have what felt like a big knot in my intestine. I decided I have to slow down and be at peace. Here's my story. I was glad I was able to get it out there so I can encourage people. Please let me know if you have any questions. https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

Hi @luckyone4321, how are you doing? I hope you were able to reschedule an appointment with your doctor in the meantime. Did you get your questions answered? Would love to get an update.

Thank you so much. I’m going to look up some disability attorneys right now! I do know some just take the percentage if you win and I feel like that type of attorney may be better than this “free” one that was offered to me through the hospital I had my surgery at. He doesn’t seem to care if I win or lose and he doesn’t communicate with me or ever return my phone calls. So I think it’s time for a new one! I hope you’re doing okay and I’m going to keep you in my prayers! We got this!!!

I went to my doctor appointment today with a full list of questions and concerns and I get there and they tell me he had to do a operation and that they tried to call me to reschedule it but I never had a missed call! And now that doctor can’t get me in until March. I’m wondering if I should look into a different doctor? I was looking forward to maybe getting some answers today but until then I will increase my Creon and see if that helps!

I am a 22 month survivor after Whipple surgery at Jax Mayo. I also am a retired lawyer. When I was actively practicing law I represented a few clients in disability issues. It was my experience that Social Security Disability employees almost always denied a claim on first filing but almost always approved it on re-filing. While you and I are at the moment in remission, we still have many issues from the surgery, chemo and radiation,which are a direct result of the cancer. You might want to consult a social security disability attorney to review your case. In my day, the lawyer did not charge a fee unless he or she was successful in getting the benefit approved.
I hope and pray that you and I both continue in remission. With some adjustments we can continue with our lives.