r/neuroendocrinetumors • u/Illustrious_Click743 • 5d ago
23M PNET Grade 1
I am 23M and recently last week experienced some black stools frequently for two days.
Turns out I was bleeding internally. An endoscopy found a stomach ulcer + a bleeding mass 4.7cm protruding from pancreas into duodenum.
CTs and MRIs seem to display multiple lesions spots in the liver which l signal significant metastasis.
Diagnosed with pancreatic NET of grade 1 Ki-67 1% and will probably start on lanreotide soon.
It was pretty devastating to hear last week, especially just from the perspective of mortality and sharing this news with my family. However, I plan to live till 65+ and have decided I will not give up.
Now, I’m more grappling with how much my lifestyle will change. I am pretty healthy and fit, but drank a lot on the weekends socially. I’m afraid most of my friendships will disappear as I most likely can’t/shouldn’t drink again.
I know it sounds superficial and this is probably the least of my issues, but I’m really just trying to process things bit by bit.
I’m feeling a lot more positive given my age and the grade, but am concerned/confused about the amount of liver lesions.
My oncologist said her goal is eventual cure though it may be a long battle. Seeking more professional opinions these coming weeks as well. Located in NYC.
What do you all think?
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u/Key-Pomegranate8330 5d ago
I’m so sorry, that’s a lot to deal with, especially so young. I haven’t been diagnosed yet, and my scans are negative, but I have rising VIP and my doctors keep saying they are pretty sure it’s a pNET as well. I’m a 25 year old woman and it’s been pretty shocking/devastating for me. It sounds like you’re in the right hands and they are confident you can still live a long life. NETs are different than a lot of other cancers- I’ve heard people describe it more as a chronic illness than an aggressive cancer- I’m not saying this to minimize it but to try to provide a hopeful outlook. I think after the initial shock/grief wears off you will feel better. Keep pushing and fighting, you got this!
Also, if you are concerned about the not drinking alcohol, I really enjoy the botanicals (marijuana) infused drinks that are sold at some bars and in stores (if it’s legal in your state and if that’s your thing). Your friends should absolutely understand though.
Best of luck!
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u/Illustrious_Click743 5d ago
I’m sorry to hear this is happening to you as well! Keeping you in my thoughts.
Thank you for the encouragement! I’m feeling more positive these last few days than when I first heard the news!
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u/Key-Pomegranate8330 4d ago
Thank you! And of course!! I think it’s just a lot to process; keep trying to be positive and channel your emotion and energy into action (easier said than done). If you’re in NYC, maybe check out Memorial Sloan-Kettering if you haven’t yet, they have some great cancer programs and I believe they have a NET program!!
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u/pixiepasty 5d ago
...and alcohol-free craft beers are now very drinkable so should keep your social life going!
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u/Illustrious_Click743 5d ago
haha I’ve always wondered why people would drink those, but now I can see a potential reason
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u/Specialist-Gur 4d ago
There are so many good NA options these days.. NA beer and NA amaros are my favorite.
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u/Specialist-Gur 5d ago
Your oncologist said her eventual goal is a cure. I think that's possible. I think you're right to be hopeful.. this field is evolving and there are already a lot of good treatments for stage 4 pNETs grade 1 out there
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u/Mr_A_s_h 3d ago
A Ki-67 of 1% is pretty much the best you can hope for. Even if it's currently metastatic, you have a pretty good chance of going back to a normal life, with the occasional therapy and pet scan.
I had a pnet, finished therapy and got the pnet removed less than a month ago.
I got a ton of tests done on me, but the most important ones were to find out whether the pnet was functioning or non functioning. Functioning pnets require additional medication so that they don't mess up the hormone balance in the body. Non functioning pnets don't.
You should bring it up with your doctor or consult an endocrinologist to find out if it's a functioning or non functioning pnet. You should do this asap, if you haven't done this already, cause some medicines can interfere and give false results for some of these tests.
It's going to be a bit difficult but from what you've shared, you've got a good chance to get back to normal life, albeit without alcohol or smoking or drugs and stuff like that.
I would also recommend avoiding really fatty or greasy or sugary foods till you've got a diagnosis on whether it's a functioning or non functioning tumor.
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u/Mastercone 2d ago
As for the alcohol, you can just change your screen moniker to Teetotaler. Actually, you should still be able to drink. Liver NETs can and will respond with effects like flushing and histamines for a short while when alcohol is detected. The largest reaction comes with red wine but dissipates quickly.
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u/syzygy96 5d ago
Being newly diagnosed is a rough time. I'm only about 18 months post diagnosis, and remember the first couple weeks very well. Just know that you're not alone and it's very likely this isn't as bad as it probably seems right now.
The first bit of advice everyone who has had this gives is to make sure you find an oncologist that specializes in NETs. It's a relatively rare cancer, many oncologists won't see more than one or two cases a year, and the current treatments and approaches are evolving pretty rapidly and differ from many cancers.
Here's a doctor finder on the NET research foundation's site: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Using that, you can find a specialist near you that you should try to talk to.
Having metastatic disease means it's likely you'll never be fully cured, since there are already microscopic cells scattered around your body. It may be possible if all tumors are surgically removable but it's unlikely. That said, there is a lot of movement in this space and new treatments being approved all the time.
However, your ki67 of 1% is as good as it gets, meaning your tumors are very very slow growing. It's probably the car that these have been in you for years. And, with a growth rate like that it's entirely possible to live a basically normal life with the disease being treated more like a chronic condition (think high blood pressure) than the crisis it probably seems right now. I've personally met people who have been living with this for more than 40 years, and numerous who have hit 25+ years.
I would expect your next steps to be finding a specialist, then probably getting a DOTATATE PET scan, which uses a hormone analog with a radioactive element linked to it to bind to tumor cells. It will help your care team get a handle on exactly how many tumors there are and where. Note that this is a scan specific to NETs and is different than the "standard" PET scan most people get, which is radioactive glucose and only highlights cells that are very hungry and fast growing.
As for the bit about alcohol, it's a bit sticky. I've had about 75% of my pancreas removed as a result of my very large tumor, and both my oncologist (who is one of the top experts in the field) and the endocrinologist she referred me to have said that although I should probably cut back or eliminate alcohol because it's just generally not good for you, that there's no specific restriction against it any more than with any other person, even with reduced pancreatic function. Obviously bring this up with your specific team but don't let it worry you too much before you have that talk.
I hope this helps point you in the right direction a bit. I know it's tough but try not to get into too much of a doom spiral - your life is going to change but probably not as much as you think.