MTB1960

290d

Hi newly diagnosed ( with what I’m told Is the best possible NET TO have)

I don’t know that having cancer and best possible are even relatable

GI (stomach)
Ki67 less than 3%
Low grade
0.2 CM

resected 2/22
Put on a wait and see approach
I’ve been nothing but a stomach off knots waiting for the other shoe to drop!

I have so many questions .

Cyanocobalamin

Rectal Cancer

Neuroendocrine (Carcinoid) Tumors

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  • Billzgurl

    288d

    You can ask me some and I will try to answer. Some . Since that number is really low just scans .

    • MTB1960

      288d

      you really think So ? 🥰🥰🥰🥰🥰 Can’t they change to like another stage ( I think it’s called?) and spread ? My doc said the primary was in my stomach how do they know for sure ? I’ve only had an endoscopy ( and the tumor resected) I’m worried when I start the scan the tumor will have recurred or grew back what an awful illness Don’t get me started on the scans ugh I’m soooo claustrophobic

  • bluedragon

    266d

    I have carcinoid cancer of my colorectal area & had to get the tumor resected 3x in a year.. by the 2nd they told me I have to resected my rectum. The fear of the other shoe dropping is quite normal especially with a diagnosis that has cancer in it. I’m really claustrophobic as well & I just close my eyes & try to remember scenes of my favorite movies to occupy my mind, you’ll figure out what works for you ☺️☺️

  • MTB1960

    265d

    Drugs will work for me , or anesthesia . I use to hyperventilate theirs no way I’ll handle and mri Pet scan is like a donut right ? Open both ends . Which scan will they usually do for a stomach net ? I hope and pray it doesn’t spread to my liver …🙏🏼

    • bluedragon

      264d

      mri is the one that’s like a tunnel & ct are the donut thing but they’ll most likely give you medicine for it so don’t get nervous! They usually ask you if you’re claustrophobic~ I used to be & then I got used to it & just play a movie in my head or hum songs! Some places have headphones that play music! It’s most likely a pet scan but the regular ones aren’t always accurate for Carcinoid unless they do a pet scan with gallium I’m praying for you that it didnt

      • MTB1960

        263d

        hi thank you for responding I like this site but not much activity on it Kind of confused you said your praying that it didn’t ( didn’t what ?) My stomach has been in knots most days It’s driving me crazy and I don’t even want to get out of bed . My NET specialist PA said I don’t need scans “yet” I’m getting blood work done this week Do you know what that will show ? Gastrin and b12 and then a comprehensive panel I’m not sure what they’ll find I don’t know if I’m suppose to pray they do find something ( then they diagnose type 1 gastric ) or that they don’t find something I’m just so confused about it all

  • TriptychWitch

    253d

    Hi! Yeah there's not a ton of activity for us NET patients on here so far. I'm hoping as the app gets older and more well known we might see more people with the less common stuff interacting. Ki67 less than 3% is a low number so that is good news! Do you have a specific stage/grade that they gave you? Tumors can grow and change to more severe stages or grades, but NETs tend to be one of the more slow-growing, stable types of tumors in comparison to other cancers. If they have only found one tumor in your stomach, they can tell it's the primary by the type of cells it is composed of. If it spreads and a new tumor starts to grow in another location, its cells will look similar to the primary one, so they will know it's a secondary or metastatic tumor. It's possible the tumor can grow back, but not too common so that's good news too! Typically maintenance scans are done every 6 months, so you probably won't need a scan until August-ish it sounds like. I have usually had MRIs for my scans, but I've done them at least yearly for over half my life now lol. They could do either an MRI or a CT scan for you, depending on what type of images they need and how long/frequent they foresee needing to continue the scans. I do mainly MRI in order to reduce the amount of radiation I'm exposed to over the years. Some places will offer a mild sedative for severely claustrophobic patients so you could ask about that, and even ask around to different imaging providers in your area to find one that does. It's so normal to be conflicted about feelings on whether the docs find something or not. Don't worry, there's no "supposed to" about any of that; you feel how you feel and it's 100% valid. Gastrin and b12 will probably be looking for indicators of whether the tumor has recurred and is active in your stomach. There are also markers in the comprehensive panel that can indicate whether hormones or other chemicals are being produced in your body too much or too little, which can sometimes give clues for whether your organs and processes are working as they should. If certain chemicals are off balance, that gives the docs an idea of where to look for anything that may be suspicious. Having said all that, they do all these tests and scans just to make sure that everything stays stable. In your case it sounds like you have a high likelihood of staying stable! Hope I answered some of your questions for you!

  • MTB1960

    253d

    Hi ✋ thank you for your very very informative response TriptychWitch 🥰 I will def come on more if they are more like us that come on here ! I’m on Facebook to their are several very active groups on there . I’m soaking everything up I can so that I am prepared for anything that comes up I hate surprises and this one was a doozy biggest surprise of my life :( My tumor is now grade 2 ( upgraded by 2nd look at UCSF) no stage w/GI nets Only type ( which I haven’t got that info yet ) ki67 now 5% Still 0.2cm WD , clear margins ( which I’m guessing means nothing with NETs ) because they still come back ( spread thou not sure) Also I have autoimmune Atrophic gastritis ( a reason these stupid tumors form in the first place ) 😖😡 Good to know about the 1 tumor and knowing it’s primary my gi doc was looking for something else when he was doing my endoscopy so hopefully he didn’t miss any other tumors 🙏🏼 I’ve never had a scan at all n it isn’t even recommended which is scary because then I’ll never know if spread is going on !!! Thank you soooo much Mary

  • MTB1960

    253d

    Oh what about an open MRI? Can small NETs be seen?

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