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Whipple surgery and pancreatic cancer - info?

Discussion in 'Type 3c (Pancreatic) Diabetes' started by KitSileya, Jun 12, 2017.

  1. KitSileya

    KitSileya Type 2 · Well-Known Member

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    A close family member has just gotten the diagnosis of pancreatic cancer, and will have the Whipple surgery this week if all goes well. I know that there are people here in T3c that have had that surgery, and I would be grateful if you could share your experiences, and if you have advice for those of us who are relatives, that would also be very much appreciated.

    What physical and mental challenges did you have pre- and post-surgery? Is T3c guaranteed after surgery?
     
  2. Pipp

    Pipp Type 2 · Expert
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    Hi @KitSileya
    Just bumping your thread, as I am aware how anxious you must feel for your relative. I hope someone will respond with reassurance for you.
    Sorry I am only able to offer anecdotal info as someone dear to me had the Whipple surgery and is a survivor some six years later. This person now is involved with a 'buddy scheme' for those newly diagnosed with pancreatic cancer at the hospital where they were treated. Perhaps there will be something similar in place where your relative is? Hopefully there will be a specialist support nurse who can provide info for you.
    Diagnosis of diabetes came for my friend around 2 years ago, some 4 years after the surgery and treatment. Currently managed by diet and oral meds. No detriment to active lifestyle, work exercise, or foreign travel.

    Best wishes to your family member for a favourable outcome. Also, make sure you get some support for yourself at this worrying time.
     
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  3. Starburst02

    Starburst02 Type 3c · Member

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    I had Whipple surgery 15 years ago( in the USA). It is a difficult surgery and recovery time varies but is often lengthy. I was fortunate that my tumor was caught early stage. It was diagnosed as adenocarcinoma of the pancreas, the tumor was in situ or totally contained in the pancreas, and surgically removed. There was no involvement in lymph nodes or metastasis. I was not diabetic before surgery, but did develop type 3c diabetes diagnosed around 1-1/2 years after surgery.

    So much depends on the stage the pancreatic cancer is found. That determines the follow up treatments.

    If your relative is able to have the surgery, that is a good thing. It means the doctors believe the pancreatic cancer is curable.

    The most serious challenges after the surgery are in my experience, regaining strength and more specifically getting accustomed to the new digestive system. Finding the foods that work best for you, and adjusting your life to the "new normal" that will develop over months, and years. Your relative will likely need prescription strength pancreatic enzymes (like Creon) for the rest of their life. I have taken them since six months after surgery, and the medication helped me regain and maintain a good quality of life. Eventually, I was able to eat any foods I enjoyed before surgery. It does take time though and it can be a difficult journey.

    I do not know how families of the patient can prepare, other than review information from your medical team, and offer love, support and especially patience to your relative. The path they will be taking is personal and can feel lonely even when surrounded by loved ones. But the strength needed to persevere has to come from within ones self. Love and concern from family and friends can make all the difference just to know someone cares and wants to help, even though sometimes they simply can't change your situation. I think that is often the hardest part for the loved ones of the patient. I was fortunate to have a loving spouse, family and close friends who loved and supported me through my ordeal. I drew a lot of strength from that, and it kept me going in challenging times.

    I hope your relative has a successful surgery, and a quick recovery. If you have more specific questions, I will be glad to try and answer.
     
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  4. KitSileya

    KitSileya Type 2 · Well-Known Member

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    Thank you very much for your replies, @Pipp and @Starburst02 .It especially cheered me to hear that pancreatic cancer can be survived - all the statistics are very disheartening. We hope the cancer was caught early enough - my relative got sick really rapidly because the tumor impinged on the liver and the bile ducts, causing jaundice. We're hoping that doesn't mean the tumor is especially aggressive, but instead grew 'awkwardly' to begin with, if you know what I mean.

    The surgery is tomorrow, so I must admit my heart is in my throat.
     
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  5. KitSileya

    KitSileya Type 2 · Well-Known Member

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    Surgery went well, and my relative is now awake. I guess the aftereffects of surgery are for the future, but I must admit I was sooo scared they'd start surgery, discover the cancer had spread, and just close up and recommend palliative care. Now we have a fighting chance!
     
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  6. Starburst02

    Starburst02 Type 3c · Member

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    Great news. I hoped you would post an update. Your post yesterday about sudden onset of blockage of bile duct etc. is very similar to my experience. I developed sudden unexplained jaundice and had surgery in less than one week after scans found the tumor causing the blockage. Best wishes to your relative for continued good news and a speedy recovery.
     
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  7. Pipp

    Pipp Type 2 · Expert
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    Yes, please do keep us updated @KitSileya .
    Best wishes to your relative, and all supporting the family.
     
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  8. billy3c

    billy3c · Member

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    Hi Kelly, I was diagnosed in January and had a whipples in march, mine turned out to be benign luckily, but I'm still left with diabetes, it's been a challenge, especially with the lack of information. The best advice I can give you is make sure he's referred to the diabetic team at the hospital he's had the surgery. They deal with this type of diabetes all the time
    And your gp has probably never heard of it.
    Best of luck for your relative. Where did he have his surgery? I had mine at the Churchill in oxford, excellent care
     
  9. slaxx

    slaxx · Guest

    Sharing my dad's experience.
    Dad is T2.
    He had Whipple procedure just this March. Pre-malignant tumor in the pancreas. We are very lucky that it was found before it turned fully malignant (thanks to gallbladder stone pains too, of all things, lol)
    Surgery took 7hrs, 5days in the ICU, then 2wks in a regular room because somehow there was still blood in his stomach after iirc 5days, and when he was instructed to get an ultrasound of the abdomen, he had to drink water, and he had to... err... puke everything out right after ultrasound, and what came out was black liquid in larger quantity than the water he had drank. We did get scared, but all trouble was over after that.
    After all that, went home, home rest for a week. The next week, tried to go to office but got tired too quickly so we went home early. It maybe took 2months for things to *look and act* normal, though I did have to clean out his JP hole and the surgery cut everyday for at least a month.
    All in all I'd say it took 4months for him to be almost-completely normal, but until now he complains of a feeling of weakened legs.
    We had to visit our endo every month until July, to adjust his insulin and oral meds. The first 2 months it felt like he had absolutely no diabetes lol. Everything was normal and the endo even removed his insulin, and reduced his meds intake from 3/day to 2/day at lower dosage. But currently, his BG has been up and down. I'm not sure if it's still post-op symptom or lifestyle/meal change. From what I read about T3c, it seems he could be affected, if his BG continues to be uncontrollable...
     
  10. Youngsatheart

    Youngsatheart Type 1 · Newbie

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    Whipple surgery
    I had this 20 years ago and other than the ongoing struggle with diabetes, I am healthy. A1c 6.7. Cutting out grains and eating low carb is the secret for me to keep my blood sugars even and in range. The tumor in my pancreas was an ductal tumor, non cancerous at that point. They have been known to become cancerous. So, I feel blessed. Dealing with diabetes is very difficult. Best wishes for your relative.
     
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