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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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Hello @judybre and welcome to the Pancreatic Cancer support group on Mayo Connect. I appreciate you adding your experience to this discussion group. I especially appreciate your comment, "It has been a process but doing well." Recovery from any kind of surgery certainly is a process and not always as quick as we would like.
As this is your first post, could you share, as you are comfortable doing so, a bit about your history with pancreatic cancer. For example, how long ago were you diagnosed? Have you had any treatments, besides the surgery at Mayo, Jacksonville? And most importantly, how are you feeling now?
I strongly concur with @robee. Get a second opinion or even a third. Dr Doug Evans is probably the most noted surgeon in the country and known to be very open, honest, and willing to provide a second opinion. He is not “knife happy” and will explain options.
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1 ReactionHello!
I was lucky too!
My doc called it Divine Intervention. After having White stool, I went to my GP, had a CT scan where a small cyst was found. Because of family history, he monitored for a year. When the cyst which was on main duct grew, I had a Whipple. That was 5/13/22
It was just starting on the path to cancer (mild dysplasia)
It took over a year to start feeling myself, but not sure if it’s surgery or age (72) but I have to pace myself.
Will keep you in my thoughts and prayers!!
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4 ReactionsGood evening, Weezi!
Have you made contact with your primary care physician, asking for the best way to contact high risk family members, to make sure they are followed up regularly, and offered testing or screenings when new developments have been made or age restrictions have been reached?
Please reach out to any family members you can locate on your own or through heritage websites such as ancestry.com. The more people made aware of it existing in their lineage the more possibility of catching it early.
@jasonlabine9999, welcome. Do you have pancreatic cancer in the family?
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1 Reaction@victoriadukes
I'm sorry you are going through this and understand your anxiety completely. Just a suggestion in regard to your "shot" veins and since you may need to continue with potassium infusions. You could request that a CVC (central venous catheter) line or a port-a-cath be placed for continous infusions and blood draws. This would spare your arm and hand veins significant trauma.
Let us know how you are after your procedure. Sending you a big hug today.
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2 ReactionsDear Victoria,
My prayers for you so that everything goes well. I was diagnosed just at the beginning too and had Whipple operation. I had chemo first for 6 months and i followed advice to keep exercising and being fit for the operation. Yes, it was a long operation and I also had my spleen removed. I stayed in the hospital 2 months because of fluid in my back. It was hard to take so many painkillers. What I find it harder is that after it took me 6 months to start feeling better and been able to move around much. The hardest thing I find is how to deal using the Creon enzymes which is hard to know the amount that is suitable for a particular food. Life gets better. Spent a lot of time having different nutritionist but that just told me that I was eating well. Eating is hard for me, bloating and nausea and dizziness.
It has been now 2 years since Ive been diagnosed, CT scan show no changes but my cancer markers are getting a bit high. So now we are on monthly check up. I follow now a gp who practices alternative medicine but also chinese medicine, have a naturopath because I take antibiotic everyday and I was lucky to find that in New Zealand there is a company which makes probiotic that I can take everyday and is compatible with Phenoxymethylpenicillin.
Injection B12 every 3 months, multi vitamins everyday, iron infusion once a year.
Have courage, you are younger than me, I suppose, you will make it. God is always with us. I practice Heartfulness meditation everyday and that is my guidance and lessens my worries.
God bless you and hope you have a very good and humane surgeon. By the way i am from down under Australia. Sorry for any mistakes and is late at night.
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6 Reactions@victoriadukes, checking in. How are you doing?