1. < Neuroendocrine Tumors (NETs)

Just diagnosed with pancreatic NET stage 1

Posted by kt348 @kt348, Oct 17, 2022

I’m a 64 year old woman, I’ve have colon issues for decades among other issues. They found my tumor on a CT scan, I don’t think I have any symptoms because of all my other issues in play. Anyway, I’m devastated! It’s on the tail portion of my pancreas, 1c in size, well sectioned, slow growing. I had biopsy done with scope to confirm cancer. My oncologist surgeon had 2 options, wait 6 months and repeat CT so we had a baseline and check for any changes or surgery to remove it, which the tail of pancreas is removed and also remove spleen, tube running (for temp drainage) out of my nose. 4 immunization shots followed by 2 more. So I opted for waiting the 6 months. I’m so confused and scared it’s going to move to another area. If anyone has had this same issue please message me back with your decision. It’s been a month since I found out and I’m a wreck! Thanks

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

pavlina60 | @pavlina60 | Sep 2, 2023
In reply to @dbamos1945 "Pavlina60: I sympathize with your insomnia… been there! My immediate solution is OTC Spring Valley extra..." + (show)
@dbamos1945

Pavlina60: I sympathize with your insomnia… been there! My immediate solution is OTC Spring Valley extra strength 10mg adult Melatonin sleep support GUMMY!!! It is not logical but I chew 2 and sleep in 1/2 hr!
I hope you try it my friend. Only the best for you!

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Thank you for the suggestion! But I take Warfarin ( blood thinner) and melatonin is not recommended :(. I try to get myself to sleep with a glass of warm almond milk and a spoonfull of honey..

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RM | @mmerry | Sep 3, 2023
In reply to @colleenyoung "Welcome @kt348. Finding out that you have cancer sends one into a tailspin. It's so hard..." + (show)
@colleenyoung

Welcome @kt348. Finding out that you have cancer sends one into a tailspin. It's so hard to make decisions about when and what to do when the answers are clear cut. I can only imagine your fear and devastation.

To help you connect with others, like @sturns @elm60 @dbmenger @musicflowers4u @kaforester3, who also have pancreatice neuroendocrine tumors, I added your discussion to the Neuroendocrine Tumors group as well as the Pancreatic Cancer group.

It sounds like the tumor was found incidentally while getting a CT scan for something else. This helped your team find it early while it is still stage 1. That's good. Given that it is 1cm in size, well sectioned, slow growing, it sounds like you made a good decision with all the information available to you.

Are you being seen by a NETs specialist? Would you feel more comfortable with your decision if you got a second opinion?

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Hi there. I hope you are keeping well. I also have a NET in the tail of my pancreas. It is 1.7 cm. My NET Doctor is telling me it is too risky or hard to do a biopsy in the tail but I see you were able to have one done. Did they ever tell you it was quite risky or does it seem like common practicee? This “risky” comment was feedback from the NET oncologist. What type of doctor is the one who performs the biopsy? Thank you so much .

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2 replies
pavlina60 | @pavlina60 | Sep 4, 2023
In reply to @mmerry "Hi there. I hope you are keeping well. I also have a NET in the tail..." + (show)
@mmerry

Hi there. I hope you are keeping well. I also have a NET in the tail of my pancreas. It is 1.7 cm. My NET Doctor is telling me it is too risky or hard to do a biopsy in the tail but I see you were able to have one done. Did they ever tell you it was quite risky or does it seem like common practicee? This “risky” comment was feedback from the NET oncologist. What type of doctor is the one who performs the biopsy? Thank you so much .

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My biopsy was done by a Gastroenterology doctor. It showed Grade 2 NET. Then I had a Ga Dotatate PET scan and Less than a month later I had surgery by a HPB ( hepatobilliary sutgeon).

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vmchow | @vmchow | Sep 4, 2023
In reply to @mmerry "Hi there. I hope you are keeping well. I also have a NET in the tail..." + (show)
@mmerry

Hi there. I hope you are keeping well. I also have a NET in the tail of my pancreas. It is 1.7 cm. My NET Doctor is telling me it is too risky or hard to do a biopsy in the tail but I see you were able to have one done. Did they ever tell you it was quite risky or does it seem like common practicee? This “risky” comment was feedback from the NET oncologist. What type of doctor is the one who performs the biopsy? Thank you so much .

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An MRI found a 1.7 tumor in the trail of my pancreas. My doctor immediately sent me for a fine needle endoscopic biopsy. Pathology confirmed that the tumor expressed chromogranin. Dota petscan confirmed a PNET. Wait and watch for one year.... No change, but i opted for a distal pancreatomy saving the spleen. Two months post surgery, I'm doing pretty well. I'm 65. I wanted the surgery while i was still relatively fit instead of waiting... I'm happy to chat with you about my experience of your like to contact me, but my case was pretty straight forward and I've been lucky so far. I think people need to hear the good stories as well as the challenging ones. 🙏 This cancer can be treated. And you're not alone on the journey.

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1 reply
ricki8 | @ricki8 | Sep 5, 2023
In reply to @mmerry "I would like to thank you so much for this reply and the link for the..." + (show)
@mmerry

I would like to thank you so much for this reply and the link for the NET specialists. I was diagnosed with a 1.7 cm PNET in the tail of my pancreas in January 2023 incidentally and it appears to be non functioning. I am in Canada and went to the one of best cancer hospitals in Toronto, Canada. They have run many tests and scans including PET scan and CT's but in 8 months I have yet to speak to one doctor. Not one. So I have no one to ask questions of such as "Shouldn't we do a biopsy or is it to risky to biopsy when the NET is in the tail" .
They have put me on the 6 month watch and wait scan approach which I am grateful for but sure would like to have a doc to ask basic questions of. So thanks for this list as I will make my way to one of the Canadian docs on this list.

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Hi @mmerry
I am on the other side of this big country - Vancouver, and with BC Cancer (which is also highly recommended). I was fortunate to get into a 'Clinical Trial' which guarantees a lot of attention from assorted professionals for NETs. My Oncologist told me that mine was slow-growing. Two months after my last PET scan, some symptoms appeared that made me feel I should get checked out at the hospital E.R. They took more tests and found that my multiple liver tumours had grown 20% (in 2 months!). I was given morphine (I could barely walk) and sent home with the same drug.
That got the attention of my Oncologist and she set up a surgical team. My suggestion: be your own advocate, ask a lot of questions and don't be afraid to take charge. This type of cancer is not a 'one size fits all'. I wish you the best 💝

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1 reply
c2pricorn66 | @c2pricorn66 | Sep 6, 2023
In reply to @vmchow "An MRI found a 1.7 tumor in the trail of my pancreas. My doctor immediately sent..." + (show)
@vmchow

An MRI found a 1.7 tumor in the trail of my pancreas. My doctor immediately sent me for a fine needle endoscopic biopsy. Pathology confirmed that the tumor expressed chromogranin. Dota petscan confirmed a PNET. Wait and watch for one year.... No change, but i opted for a distal pancreatomy saving the spleen. Two months post surgery, I'm doing pretty well. I'm 65. I wanted the surgery while i was still relatively fit instead of waiting... I'm happy to chat with you about my experience of your like to contact me, but my case was pretty straight forward and I've been lucky so far. I think people need to hear the good stories as well as the challenging ones. 🙏 This cancer can be treated. And you're not alone on the journey.

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My partner a 63 years old had the same one but it was highly suggested by the endocrinologist to remove the spleen as tumour was a little big tho encapsulated and sitting in the tail and he could possibly come back after 2 months to remove spleen. He just came out of recovery going to ICU as we speak. As I heard he is doing well and everything is good. Looking forward to see him soon

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2023
In reply to @c2pricorn66 "My partner a 63 years old had the same one but it was highly suggested by..." + (show)
@c2pricorn66

My partner a 63 years old had the same one but it was highly suggested by the endocrinologist to remove the spleen as tumour was a little big tho encapsulated and sitting in the tail and he could possibly come back after 2 months to remove spleen. He just came out of recovery going to ICU as we speak. As I heard he is doing well and everything is good. Looking forward to see him soon

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I'm so glad to hear of his successful surgery, @c2pricorn66! I hope that all goes well for him as he continues his recovery.

Do you know yet, how long he will be hospitalized? I hope you will continue to post updates as you can.

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1 reply
vmchow | @vmchow | Sep 6, 2023
In reply to @c2pricorn66 "My partner a 63 years old had the same one but it was highly suggested by..." + (show)
@c2pricorn66

My partner a 63 years old had the same one but it was highly suggested by the endocrinologist to remove the spleen as tumour was a little big tho encapsulated and sitting in the tail and he could possibly come back after 2 months to remove spleen. He just came out of recovery going to ICU as we speak. As I heard he is doing well and everything is good. Looking forward to see him soon

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The surgery is tough, but after the third day things get much better. Please get him up and moving as soon as he can. I walked every two hours, no matter the pain level and it made all the difference. Rest is super important and so is a good protein diet during recovery. But making the effort to move was crucial to my recovery. Best of luck. Sounds like you did the right thing. How big was the tumor?

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1 reply
RM | @mmerry | Sep 6, 2023
In reply to @ricki8 "Hi @mmerry I am on the other side of this big country - Vancouver, and with..." + (show)
@ricki8

Hi @mmerry
I am on the other side of this big country - Vancouver, and with BC Cancer (which is also highly recommended). I was fortunate to get into a 'Clinical Trial' which guarantees a lot of attention from assorted professionals for NETs. My Oncologist told me that mine was slow-growing. Two months after my last PET scan, some symptoms appeared that made me feel I should get checked out at the hospital E.R. They took more tests and found that my multiple liver tumours had grown 20% (in 2 months!). I was given morphine (I could barely walk) and sent home with the same drug.
That got the attention of my Oncologist and she set up a surgical team. My suggestion: be your own advocate, ask a lot of questions and don't be afraid to take charge. This type of cancer is not a 'one size fits all'. I wish you the best 💝

Jump to this post

Thanks so much! I may see if my Ontario doctor will refer me to BC Cancer. I have been at Princess Margaret in Toronto since February with my 1.7 cm PNet and have yet to get an audience with a doctor to ask any questions. Can I ask you the name of the hospital or doctor? Many thanks .

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ricki8 | @ricki8 | Sep 6, 2023

I am in a Clinical Trial (you need a doctor's request for this). Talk to your G.P. who can then look into it for you, unless you have the NETs program free in Ontario. I do think that being in a Clinical Trial puts you into a set of teams who are pro-active. B.C. Cancer has a large multiple-building space with everything you would need outside (a regular hospital). It is also positioned next to Vancouver General Hospital (for surgery). I was given a list of contacts for everything I could think of and more and someone is in touch at least twice a month. A personal Oncologist was assigned to me with a 5 member surgical team (specializing in NETs, incl. a nurse, a physician on call for urgent symptoms, counseling, pharmacy (they call me when needed).
Take care of yourself and your needs. Best of luck!

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