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

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 9 3:09pm
In reply to @c2pricorn66 "Day 1 NBM. On PCA pump for pain, Drain. Catheter. Day 2 Surgeon said he can..." + (show)
@c2pricorn66

Day 1 NBM. On PCA pump for pain, Drain. Catheter.
Day 2 Surgeon said he can have soft diet. He developed fever, Blood Culture collected, CXR He is eating lots of fruits.
Day 3 Still on PCA, drain. Minimal abdo cramps. Pain 6/10 around abdo, key holes and drainage sites. Still having trouble walking due to pain.
Hopefully today D4 is different and better. I'll keep updating as day n weeks n months go by. Hope this help others to have ideas of the progress

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I do hope that today is a better day, @c2pricorn66. Would love to have an update when it's convenient for you.

REPLY
Turkey | @tomrennie | Sep 8 9:09pm
In reply to @terryrandy5 "The only cure is removal of the primary tumor before it spreads. A Whipple surgery is..." + (show)
@terryrandy5

The only cure is removal of the primary tumor before it spreads. A Whipple surgery is an option and I would recommend Johns Hopkins and be sure you are going to a NET specialist.

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Fortunately, I never had surgery. Just chemo.

REPLY
vmchow | @vmchow | Sep 8 8:13pm
In reply to @c2pricorn66 "Thanks 🙏 the size is around 19 X 16 mm" + (show)
@c2pricorn66

Thanks 🙏 the size is around 19 X 16 mm

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It sounds like you made the right decision. But it's a courageous decision and i wish you all the best.

REPLY
c2pricorn66 | @c2pricorn66 | Sep 8 6:29pm
In reply to @vmchow "The surgery is tough, but after the third day things get much better. Please get him..." + (show)
@vmchow

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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Thanks 🙏 the size is around 19 X 16 mm

REPLY
1 reply
c2pricorn66 | @c2pricorn66 | Sep 8 4:36pm
In reply to @hopeful33250 "This sounds good, @c2pricorn66. Is he receiving pain meds through an IV? When will he start..." + (show)
@hopeful33250

This sounds good, @c2pricorn66. Is he receiving pain meds through an IV? When will he start soft foods?

Jump to this post

Day 1 NBM. On PCA pump for pain, Drain. Catheter.
Day 2 Surgeon said he can have soft diet. He developed fever, Blood Culture collected, CXR He is eating lots of fruits.
Day 3 Still on PCA, drain. Minimal abdo cramps. Pain 6/10 around abdo, key holes and drainage sites. Still having trouble walking due to pain.
Hopefully today D4 is different and better. I'll keep updating as day n weeks n months go by. Hope this help others to have ideas of the progress

REPLY
1 reply
terryrandy5 | @terryrandy5 | Sep 8 8:07am

The only cure is removal of the primary tumor before it spreads. A Whipple surgery is an option and I would recommend Johns Hopkins and be sure you are going to a NET specialist.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 7 5:29pm
In reply to @c2pricorn66 "Hello @Hopeful33250. We were told he is staying for 4 nights. Plan was changed as operation..." + (show)
@c2pricorn66

Hello @hopeful33250. We were told he is staying for 4 nights.
Plan was changed as operation went well, he didn't have to go to ICU instead he went to the ward.Hes got a drain. Last night he suffered from severe abdominal cramp 🥲 surgeon said it's normal post and it will go away 🤔

Jump to this post

This sounds good, @c2pricorn66. Is he receiving pain meds through an IV? When will he start soft foods?

REPLY
1 reply
c2pricorn66 | @c2pricorn66 | Sep 7 3:38pm
In reply to @hopeful33250 "I'm so glad to hear of his successful surgery, @c2pricorn66! I hope that all goes well..." + (show)
@hopeful33250

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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Hello @hopeful33250. We were told he is staying for 4 nights.
Plan was changed as operation went well, he didn't have to go to ICU instead he went to the ward.Hes got a drain. Last night he suffered from severe abdominal cramp 🥲 surgeon said it's normal post and it will go away 🤔

REPLY
1 reply
ricki8 | @ricki8 | Sep 6 1:52pm

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!

REPLY
RM | @mmerry | Sep 6 1:30pm
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 💝

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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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