Having preventative surgery 3/4/2025: Have IPMN, not cancer

Cyrus

Thank you for supporting my decision to go with MSK. I have Dr. Kingham as my surgeon.
I wonder if you have a recommendation for a good endocrinologist in the area. I would appreciate any insight into MSK and surgical nuances.

God bless and speed recovery.

Adele

Cyrus
Did you have a full pancreatic removal with multiple organs?

If so can you share your experience.

Thank you
Adele

Cyrus , I just reread your entire comment over again. You had a Whipple procedure. That is more modified version of surgery.

Any other insights re: MSK would be helpful.

Thank you in advance
Adele

What is the purpose of such surgery if you don't currently have cancer? Have you learned that you're at very high risk of pancreatic cancer? That level surgery often leaves people with forever issues. If you don't currently have medical issues in that region of your body, I'm not so sure I'd bring them about myself. I'd recommend a second and even a third opinion before moving forward. I speak as one who has had the Whipple surgery.

I don't have much to add--I had a "simple" Whipple procedure in Sept /23 and am doing well. That said, I wish you well, too. There will be unpleasant situations and experiences on this road. Take care of what you can influence, be kind to yourself and find joy where it arises.

There's the saying that pain and fear are like velcro; joy and happiness like teflon. We're programmed (for survival) to pay attention to what could do us harm. We can also chose to spend a little more time with the joy and happiness that is also part of the journey. Don't skip over them!

"Pessimism is the analysis of the situation; optimism is the orientation of the spirit." - Anon

All the best.

I hear you and felt the same way. However, I have had 3 opinions, MSK, Columbia Presbyterian and Mayo Clinic . All concurred because of my risk factors . This would take away the risk of one of the most deadly cancers. However, I am fine and very active now and must deal with the situations that will arise from this type of surgery which is doable compared to the alternative.
Thank you for your concern.

Thank you so much for your kind and thoughtful note. Your words of support and encouragement truly mean a lot to me and have brought me comfort during this time. I deeply appreciate your kindness and warmth.”
Regards

Hi,
What an ordeal you are facing! However, it sounds like you have researched it thoroughly and have found it appropriate for you. That's great! God made you and he can fix you and has chosen this particular way to do so.
Say your prayers and leave everything up to God. He's very good at surgeries and healing. I'll say a prayer for you also.
PML

Hello Adele,
Not sure I understand how a standard Whipple procedure is "a modified version" but in my case Dr Soares just informed me Tuesday that in addition to gall bladder removal, partial stomach and partial pancreas removal and re wired digestive tract that he had to remove 7 of my 42 lymph nodes because they were cancerous. Which makes me Stage III.

Like I said before Dr Soares did a fantastic job of performing the the surgery: picture perfect!

Unlike my hospital roommate who at 36 years old, after Whipple, had to return to the hospital twice in extreme pain due to leaking rewired digestive connections that became infected. His surgeon had to open him up again because of the pus in his body cavities.

I was in the hospital over a month because I could not keep down solid foods without puking and was on a TPN nutrition bag for awhile: he came back twice on the same floor and finally was my roommate again 2 days before my discharge. So it was my stomach's inability to quickly recover after surgery and NOT the problems of messy surgery.

So... my insight post surgery is to go VERY slow with the liquid diet and don't over hydrate with a lot of liquids (you feel like you could drink tons of water, milkshakes ect) Once solid foods are introduced: only eat small portion (like I had a full breakfast eggs turkey sausage and later for lunch meatloaf mashed potatoes) and then puked it all up by 6PM and had to go BACK to nose tube and stomach pump.

Slow is better...still working with nutritionist to sort out my new post surgery diet to gain strength for 3 more months of chemo.
Best of luck and let me know if I can help with any more questions!!!
Cyrus

Hello
I had the standard Whipple to remove my small tumor and rewire my stomach and digestive tract.

Whipple is a partial removal of nearby stomach and pancreas tissue and of course gall bladder.

Partial is bad enough so as long as the existing cancer is removed I will wait to see when and where it might come back.
Hope that help!
Cyrus