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Found PNET on tail of pancreas but told it’s nonfunctional
My husband has been battling pancreatitis like pain for over 2 years his symptoms have progressively gotten worse . He has substernal upper stomach pain, diarrhea, severe nausea ,sweating ,blurred vision, confusion , indigestion, belching, flushing of skin but Hopkins found an Neuro endocrine tumor in the tail of his pancreas and they insists it’s a nonfunctional PNET and that it’s referred pancreatitis pain. I can tell you as his wife and as a nurse his pain is not normal . we go for lab work tomorrow to test for insulinoma or somastinoma but they are convinced that’s not the problem but they have no recommendations for his pain and symptoms. has anyone had a difficult time getting answers ?
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@maggieflorida, so I am curious to clarify was your husbands lesions
1. mm or cm?
2. what kind of imaging found it?
3. What hospital are you having the surgery at?
To this day I am so perplexed why Dr. Vege at Mayo Clinic told me and my husband that his tumor is not big enough to cause him pain(they read it was .7cm, Hopkins read it to be 1.4cm telling us they won’t do anything till it’s 2cm) When I continue to read they can cause pain(that’s how Maria Menuno found hers from pain and a MRI) how does he know that it’s sized base on whether a tumor can cause pain or not every person is different and every tumor and location is different. I just think it’s ridiculous he says this can’t cause pain. My husband is laying on the floor every night after he eats in pain and then soon after is running to the bathroom with diarrhea. This is just not normal and we can’t find a physician who wants to help him they just make him feel like he is crazy and making this all up! As a nurse I have never been more disappointed in the healthcare system.
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3 Reactions@maggieflorida , I had an open surgery for PNET (February 2023)and hysterectomy, so my recovery was longer than usual. It is important to go into surgery physically fit! And also walks immediately after. My surgery was 9 hrs and I was walking 300 ft the next morning. As far as diet - I was on a liquid diet for the week in the hospital, then started soft foods ( kind of like babies 🙂 ). I don't eat raw vegetables, no tomatoes, watermelon, hard cheeses. I still eat often in small portions. No fatty food and alcohol! Include lots of protein - cottage cheese, yogurt, soft cheeses ( mozarella, cream cheese), fish ( sardines are a good source), no fried or processed foods. Contact me if I can be of help! We got this!💜🦓
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3 ReactionsHello @lully2505,
I see that you posted that you would be having surgery on Oct. 13. I was just wondering how you are doing. Can you post an update when it's convenient for you?
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1 ReactionHello!!
Thank you for your kindness! Yes, I had surgery at the Mayo Clinic Jacksonville on October 13th. I spent 6 days in the hospital and I cannot say enough good things about this place. My first 2 nights were really difficult, more because of the pain caused by the gas they pump you with for a laparoscopic procedure. I mean, that pain was everywhere, I have NEVER felt gas pains in my shoulders, but this was insane. Hot compresses and literally being burped like a baby really helped. I also learned if I karate chopped myself on the shoulders it helped tremendously, lol. I looked crazy, but it works so whatever 😀
I was up and walking on the same day, with the help of a walker. It was very difficult to get up by myself. The nursing staff was great but my husband stayed with me 24/7 so most of the time he was the one helping me. Because they removed part of my pancreas, I could not eat anything the first 3 days, I was on IV and water only. The pain was bad, but manageable. I had issues when I started eating again. I threw up the first thing I tried to eat. I felt weak, dizzy and nauseous. They checked my blood sugar regularly and at first it was all over the place, but then it stabilized. I had high bp and flushing for a few days, again because of the body getting used to food again.
When I came home, the first night was very hard. I was not able to lay flat or even on the sides so I had to sleep on a recliner. After about 1 week I was able to sleep on the bed.
It's been a bit less than one month, I have my follow up on Monday, 11/13. However, my pathology report was remarkable, all margins were clear, no lymph node involvement so I should be cancer free (fingers crossed). My glucose and BP are back to normal. I just feel really exhausted by 3 pm and I feel full really fast but for the most part, I am able to eat whatever I want. I am still walking and started lifting light weights to get some strength back. The fatigue is no joke.
Overall, it was not as bad as I thought it would be, but it was definitely not easy. I do not regret the surgery at all, especially if we can confirm I am cured. I am sure I will need scans regularly, I hope to God this never comes back.
Sorry for the long post. If anyone is about to go through the same surgery and has questions, please do not hesitate to reach out. I was terrified before going in and I am so very grateful everything went well.
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7 Reactions@tinerobison, clearly your husband is in pain. Have you consulted with pain management specialists in palliative care to get effective pain management for your husband? This must be so hard for him, but also for you to see him suffer.
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2 ReactionsI heard the same thing. That I have pancreatitis but I feel like crap. I have stomach pains that are intermittent. I have flushing. They said it was perimenopause and menopause. Well, I know what those hot flashes feel like. Flushing feels totally different and no one believes it is functional. I am in this body and I feel like I know what is happening more than them. Just saying.
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3 ReactionsHello @jenniferrasigade and welcome to the NETs support on Mayo Connect. I am sorry to hear about your pain and flushing. I see that you have pancreatitis. Since you posted in the NETs group, I'm wondering if you have been diagnosed with NETs as well?
I look forward to hearing from you again as you share your health journey.
I appreciate the update, @lully2505. It sounds as if you had a successful surgery as well as a positive experience at Mayo.
I hope your November 13 follow-up went well and that your strength is increasing. I would enjoy getting an update from you when it's convenient.
Hello @tinerobison,
As it has been a while since you last posted, I'm wondering how your husband is doing. I hope his pain is being better controlled now. Has he had some pain relief?
When it's convenient for you, please post an update.
I was diagnosed with a PNET in 11/2022. It is a well differentiated tumor of 1.3 cm in the pancreatic neck and a BD-IPMN on the tail. I will have a distal pancreatectomy at the beginning of the year. I’m waiting so that I can give my kids a worry free Xmas. My girls are my life. Hopefully, this will be curative. My surgeon and tumor board decided to take the tumor because of a 9 mm lesion that appeared on my liver. My oncologist believes it’s nothing but my surgeon says we need to biopsy and get rid of it. So here I am.
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