IPMN 2 cm mass head of pancreas caught EARLY.......
Greetings! I'm new to this group and so far have been reading so much before feeling it was time to share. I did comment on another member's post, but thought I would officially share my story.
In August, I spent most of the month either in the ER or hospital (two admissions) following RNY gastric bypass on July 13, '22. Complication of critical potassium depletion caused by years of being on HCTZ (diuretic) that literally kicks out your potassium. (IV potassium – 10 bags total-burns going in and caustic to the veins). Also developed a burning fireball-type pain in my upper abdomen, which prompted the ER physician to order a CT Abdomen on August 10, '22. Did not reveal an ulcer (endoscopy did confirm a marginal ulcer in the new pouch). The CT results brought with it a bonus – an incidental finding – I am the proud new owner of a 2 cm enhancing cystic mass in the head of my pancreas! This led to consulting with the Pancreas surgeon at Mayo Clinic Florida (also my employer -Radiology) I am scheduled for Whipple procedure on November 7 and am so optimistic because of this being caught so early. My prayer is that any 'wicked' looking cells that may be hiding/lurking that don't show on an MRI – will be totally eradicated and I can go on to live the rest of my life in good health. Of course, my emotions are a roller coaster, going from total Faith in God -turning it over to Him – then playing it over and over again in my mind. I guess we are all guilty of this; it is so hard not to dwell on the "what if's" and related doubts and fears.
Wondering if anyone else had a pre-malignant mass eradicated after a Whipple procedure. I hear and read about the post-op course and become fearful. Then, I realize it is different for every person as we are all so unique in anatomy and whatever mass or disease being experienced. Would love to hear from anyone who has experienced (what I felt like was a 'miracle') having this caught EARLY and then went on to the Whipple. I'm preparing myself and trying to build my core strength and am determined to get past this and have minimal/no complications.
Looking forward to comments and discussions.
~Victoria from Florida
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Welcome @victoriadukes. You're so right that everyone is different. I'm sure you've witnessed this in your work, but now it's time to internalize what that means for you personally. There is much reason for hope and trust. The IPMN was caught early, you're in good hands at Mayo Clinic, you have faith and support, and you're strong from what I read between the lines of your post.
I'm tagging fellow members @susan2018 @jdjabara @stageivsurvivor @ileneb into this discussion, who have had Whipple surgery, some of whom had surgery because of a pre-malignant IPMN. The can share tips and thoughts about what they wished they had known before surgery to help prepare.
Victoria, as you prepare for surgery in a month's time, what questions are running through your mind?
Thank you for your reply! Yes, I am very grateful it was caught so early and also for the knowledge that I couldn't have a better surgeon than Dr. John Stauffer.
I do have a gazillion 'what if's" running through this roller coaster of a mind right now. I briefly met with the surgeon in consultation, then we went on and scheduled with his nurse. No time to process all of this when we scheduled. I do believe I was too stunned to speak, then to know exactly how to tell my husband. I am still trying to absorb that I have surgery in one month. I fear there will be little wicked 'c' cells hiding and lurking; that I will wake up and soon be told I have "C". I cannot speak or write the C word.
I would appreciate any and all encouragement and comments regarding others' experiences with this intense surgery. Since I had a gastric bypass just very recently (July 13, 22) I cannot help but wonder if this will make it more difficult or put me at risk for complications, since my stomach has already been re-arranged. My bypass went very smoothly, until after a month when I noted significant physical weakening, growing worse every day. Two ER visits and two admissions….severe weakness and Rescue had to transport me twice – could not walk. Turns out, my potassium was being depleted by long-term use of a diuretic, HCTZ. A very observant hospitalist informed me it should have been noticed before clearance for RNY bypass. My two hospitalizations after bypass were a nightmare, 10 IV bags of Potassium which is very caustic to the veins- now, with all labs they have to use my hands. My veins are shot. So – of course I dread the upcoming IVs…having to use ultrasound to find my veins just for labs and especially for IVs. I have fear there will be complications. I trust God with all of my heart, but being human and with it being ME……like you said – I am now internalizing what it means for me personally. I do have hope and trust. Now I need to stop thinking and just live for the moment.
Thank you Colleen, for reaching out. It means a lot:)
Oh, I apologize for the repetition in my second reply here. I had already shared most of that. So sorry.
My thoughts are with you. It sounds like your ductile knows and understands your situation. You are in good hands !! I will pray that the Whipple is a success and you are well soon
Sincerely Susan M
@victoriadukes Hi Victoria: What bypass did you have? And before Whipple – what is your prep? Chemo/ radiation or anything? Can you eat everything? Or are you on a restricted diet?
I too am looking at a Whipple, but yours is earlier. Please keep us posted and good luck!
Greetings, all —
@victoriadukes Our family is in a similar situation (incidental finding, etc), so I will be following this conversation closely. My husband is scheduled for surgery with Dr. Stauffer on 10/26. I guess my biggest question (at the moment) is what, if anything can we do to prepare ahead of time? Like should we be ordering bandages or wound care products? Once he is released from the hospital, will he be able to sit on a toilet without assistance/booster seat thing (we learned this lesson the hard way after one of our kids had ACL surgery)? I could go on, but I will refrain for now — I am so grateful for any information anyone has to share. Thank you, all!!
I do know that the hospital staff provides any needed bandages, etc. at the time of discharge, which has been my experience. Most likely, the open incision site will be left uncovered, to promote healing. If you have the mayo clinic portal app, Dr. Stauffer's nurse, Catrina, will be happy to answer any concerns or questions you may have. I wrote through the patient portal just yesterday and received very timely answer the same afternoon. Any and all questions will be answered during your husband's hospital stay; the staff is so awesome and truly- the needs of the patient come first! I just had surgery in July, and all of my concerns and questions were answered upon my discharge. I hope this helps. My best to you and your husband during this journey.
Hi! I had the RNY gastric bypass July 13, 22. As far as the Whipple – this was a complete surprise and I am still processing it. All of this will be answered upon pre-operative evaluation. I have not been instructed on chemo or radiation at this point, as the mass was caught super early. I follow the eating plan based on guidelines from the bypass. After Whipple surgery, eating is restricted for a while, but – again, all of these questions will be answered as your surgery date approaches. Hope this helps. My best to you!!!
Hi Victoria, thanks for sharing this with us. Your tumor was close mesenteric veins?
I did not have whipple, but had a positive outcome and am still cancer free 4 years later. https://newsnetwork.mayoclinic.org/discussion/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/
I also caught it early and went through roughly 3 months of chemo, 45 days of radiation and then, surgery. My tumor never shrank and that seems to be the end goal with this type of treatment. However, my tumor was dead when they removed it.
My takeaway from my whole pancreas journey is that each of us needs to let God show us the path that He wants us to walk on to healing and you will know in your heart of hearts when you are on that path.