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clorey
@clorey

Posts: 8
Joined: Aug 15, 2018

Neuroendocrine tumour in Pancreas

Posted by @clorey, Wed, Aug 15 3:36pm

I had a number of tests done lately to find out what this pain I am having is about. I went to a cancer Dr. and she told me that the chances of this tumour ever becoming cancer is less than 1%. Is this true? The tumour is in the head of my pancreas and has not changed in 11 years. Just need some reassurance as I still have so much pain in my chest and stomach thanks very much

REPLY

Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your doctor tell you the type of pancreatic NET tumor that you have? There are different types as this article from the National Cancer Institute explains: https://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq

Insulinomas are usually benign (not cancer). So I wonder if that is the kind you have. Do you know?

@clorey, I am a volunteer mentor on Connect and I am glad to see you here, but not for the reason you have visited. I have had chronic pancreatitis since 2006 as a result of pancreas divisum and numerous acute attacks damaging my pancreas. In Dec. of 2013, I went to MUSC, SC'c medical University hospital in Charleston to have a celiac plexus block performed to hopefully alleviate my pain. When the Dr. got to my pancreas he discovered a tumor that was rather large and by the time my surgeon got me on her table it had essentially caused the tail of my pancreas to become "mush". There was no removing the tumor and I had a distal pancreatectomy. They sliced and diced it and made over a hundred slides and there was no cancer. So, just from my experience, my doctor wanted it removed immediately because there was a concern that it could be cancerous. I do believe my tumor was contributing to my pain level, but removing it, did not alleviate my pain and the surgery alone required about a year to recover from as they had to go back due to a serious infection and then to repair a large hernia as my ab muscles had been bisected. I still have pain along the triple incision line and from a lot of scar tissue as well as my pancreas. That is a very long winded way to say that I would suspect that the tumor is contributing to your pain, but may not be the only source. If you do not already have a diagnosis of pancreatitis and your physician is confident in performing a scan regularly, and you can be at peace with that plan, I would delay surgery inside or on the pancreas as I would suspect greater pain afterwards. Of course if that is the only thing causing you pain, along with the mental uncertainty, you may want to ask if you Dr. sees you in less pain after removal.
I hope that is somewhat helpful and I will be happy to answer any questions. Where are you being seen for the tumor? If you wanted it removed, where would that surgery take place? I drive about 4 hrs each way to get to a "high volume" center as I don't want anyone practicing on me and many localities do not have surgeons and GI's who do a large number of pancreatic procedures.
Blessings, Gary

@colleenyoung

Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your doctor tell you the type of pancreatic NET tumor that you have? There are different types as this article from the National Cancer Institute explains: https://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq

Insulinomas are usually benign (not cancer). So I wonder if that is the kind you have. Do you know?

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Thanks so, so much for your reply. The tumour is an endocrine tumour like Aretha Franklin had (which really scares me). I will check out the site you have listed for me about tumours. I am really scared about this as the pain is really bad sometimes. My Dr. has had me on Lanzaprazole, Baclofen and now Lyrica. I have only been on Lyrica for one week now, so I don't really know if it is helping me. This Dr. is just an Md, but she sent me to a surgeon who did an ultrasound, cat scan and endoscopy and found nothing wrong except I have a hiatal hernia and this tumour which I found out about 11 years ago. Do you think maybe the hernia is causing my pain? I am overweight and I am 77 years old. Getting old is the pitts. Please write back to me and thanks again. Clorey

@colleenyoung

Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your doctor tell you the type of pancreatic NET tumor that you have? There are different types as this article from the National Cancer Institute explains: https://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq

Insulinomas are usually benign (not cancer). So I wonder if that is the kind you have. Do you know?

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@clorey

It is understandable that you would be concerned with this kind of tumor. I have neuroendocrine tumors (NET) as well. I advise you to see a doctor who specialized in NETs. Here is a website where you can find where NET specialists are located all over the world, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/ If there is none close to you, it would be good to travel in order to get a consultation.

If you see a specialist and he agrees with your other doctors, that is great. But it sounds as if you need another opinion in order to put your mind at ease.

Will you let me know how you are doing and whether or not you get your questions answered?

Teresa

@colleenyoung

Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your doctor tell you the type of pancreatic NET tumor that you have? There are different types as this article from the National Cancer Institute explains: https://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq

Insulinomas are usually benign (not cancer). So I wonder if that is the kind you have. Do you know?

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Thanks for this info. I will keep you posted as to my progress. First I am going to ask my Dr. to send me back to the Gastroenterologist I have seen many times before to see what he has to say. I see there is a special blood test that can be done. I will let you know. Thanks again.

@colleenyoung

Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your doctor tell you the type of pancreatic NET tumor that you have? There are different types as this article from the National Cancer Institute explains: https://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq

Insulinomas are usually benign (not cancer). So I wonder if that is the kind you have. Do you know?

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Thanks so much for this info. I did have a blood test done that came back negative for cancer. I am going to go to this website and read what they say about NET tumours. I know mine is an neuroendocrine tumour and the cancer Dr. said that there is less than 1% chance of it ever becoming cancer. I am relieved but still have the pain. I will get back to you when I find out more. Thanks again Colleen.

Wow, thanks so much for this very detailed reply. I am so very sorry to read about what you have gone through. I don't believe the Drs. want to remove my tumour. I had a special blood test done recently to see if it is cancer and it came back negative. I have a throbbing pain in that area constantly and wonder if it is scar tissue from having my gall bladder removed many years ago. I just don't know what to think at this point. The pain starts at the centre of my chest sometimes. I think maybe the Lyrica is helping with this pain. It is too soon yet to know for sure. I am going to ask my Dr. to send me back to the Gastroenterologist that found the tumour in the first place to see what he thinks. He did send me to another specialist who put me out and took a sample of the tumour, but the hospital lost it. That was a few years ago. This pain comes and goes and has nothing to do with food etc. I just don't know what else to do at this point. I have a hard time breathing sometimes, the pain is so bad. I will keep in touch with you and if I have any other questions, I will ask you. Thanks again Gary. Your input is very much appreciated. Clorey

@colleenyoung

Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your doctor tell you the type of pancreatic NET tumor that you have? There are different types as this article from the National Cancer Institute explains: https://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq

Insulinomas are usually benign (not cancer). So I wonder if that is the kind you have. Do you know?

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Hello @clorey

As I mentioned in my other post, I believe you would be better served by seeing a NET specialist. Regular GI doctors, and most doctors in general, have an extremely limited understanding of NETs. In reading about Aretha Franklin's doctor, she saw a NET specialist who was mentioned on the website that I sent you, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Yes, please keep in touch and let me know what you find out. The choice of doctors when you have NETs is one of the most important decisions you will make.

Teresa

Hello @clorey

You mentioned having a blood test for cancer. Do you know the name of the test? Please be aware that the blood work to diagnose NETs is not the same as more typical cancers. A NET specialist can get you the right labs and can consult with your doctor in your local area about follow up.

Teresa

@hopeful33250

Hello @clorey

You mentioned having a blood test for cancer. Do you know the name of the test? Please be aware that the blood work to diagnose NETs is not the same as more typical cancers. A NET specialist can get you the right labs and can consult with your doctor in your local area about follow up.

Teresa

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I don't know it at the moment, but I will find out and let you know. The test was supposed to show if this tumour is cancer. It isn't.

@clorey

But what kind of cancer did it test for? There are a number of blood tests that you should have for NETs. As I said before the blood tests for NET are different than the regular cancer blood work.

If you have a patient portal where you can read the lab/x-ray reports, I encourage you to take a look at that.

Teresa

@hopeful33250

@clorey

But what kind of cancer did it test for? There are a number of blood tests that you should have for NETs. As I said before the blood tests for NET are different than the regular cancer blood work.

If you have a patient portal where you can read the lab/x-ray reports, I encourage you to take a look at that.

Teresa

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Thx so much. I will get back to you. I have to go out now.

@clorey

Thx so much. I will get back to you. I have to go out now.

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Hello @clorey

I was thinking about you and wondering how you are doing.

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