I am 75 and have carcinoid tumors NET in lungs

@jhhaas
As my interventional radiologist always says, “With DIPNECH we can walk not run..” It’s so slow to change, it’s good to watch and wait. 😊

@californiazebra Zebra, did you have DNA markers done, and if so, by what category of medicine? Endocrinologist?

@californiazebra Yes! Perfect! But I would still rather catch it early, which is why I like the scans every six months. I hate to think of a growing for a year without me, knowing. Especially because by the time they discovered mine, incidentally, one of the tumors in my right middle lobe showed some malignancy. I don’t like seeing that word, but it stays in my head now. Not like I sit around, worrying about it. But I would rather confront an issue early than wait till it was a bigger problem. But I like your doctors take on it. ! 😁

@nannybb
When I was diagnosed with breast cancer the first time, the breast surgeon ordered the genetic testing. She only tested for BRCA. Then my son had to test at 35 and much more extensive testing was done thru color.com. I did that testing as well because they also do pharmacogenetic testing and I have so many adverse reactions to meds I wanted to know why. It turns out a lot of the liver enzymes needed to properly metabolize drugs are messed up in me explaining why meds become toxic, do damage and are not effective. I think the current price is around $250? That testing is also what discovered my CHEK2 mutation. They test for about 30 cancer genes. Im not sure it would help identify any NETs risk though.

@nannybb
I’m aware of male breast cancer because I knew a young man who died from it. And my son inherited the BRCA2 mutation from me so he is now at risk for male breast cancer among other cancers. CHEK2 as well.

Yes, definitely. I wasn’t comfortable driving till about eight weeks, but I do think the worst of the pain was the first two or three weeks. I started paying attention and realized every so many days that I was feeling better that I was a couple days before. So that was helpful to at least know that it gets better. I still have some numbness under my ribs, and I had robotic surgery so I think maybe it’s worse if they have to open you up. Someone told me it takes the body a full year to completely heal, so that made me a little easier on myself. I kept thinking what’s wrong with Me that I was still feeling pain. Took close to three months before I was comfortable wearing a bra again, though! Ugh. Lol

@nannybb thanks, yes, always a relief. I have my follow up video appointment tomorrow with my surgeons PA. At my last visit six months ago they wanted to put me on CT scan yearly instead of twice a year, but I asked to continue with the six months. We’ll see what happens tomorrow. So sorry you have that history in your family, you should be diligent on staying on top of it. It often travels to Gastro system, but from what I understand, it’s more likely to happen when the biopsies show they are “atypical“ nets rather than “typical“. Mine were typical, thankfully, so my doctor says I’m very fortunate and I agree. But I also know that on occasion, it can still go other places so always good to be vigilant. Best wishes!

@californiazebra Z, I thought BRCA1 and BRCA2 were for carinoid tumor detection. Are they specific to breast cancer?

@californiazebra So sorry to hear. But now you know, and you and your son can be watchful. I have been working on AI for most of the afternoon and am amazed at how many things I have had are related to my lung cancer. My having PCOS being one major curse. So many things doctors were unaware of back then. I'm seriously going to get a good oncologist and genetic doctor on board. I'm tired of being tired and in pain. I feel so bad for people battling much worse than I am. Especially children.

@jhhaas I would feel more comfortable with scans closer together. Hope that gets a thumbs up from your doctor. As far as the gastric, all the siblings in my family, including myself, had to have part of their intestinal track removed due to diverticulitis. I'm trying to find a good doctor to do a colonoscopy. Unitedhealthcare is denying access to some doctors here in Oregon. I thought it couldn't get any worse. I pay the highest premiums for the best care (?) I do wish I was back in Florida at times. I loved all of my doctors there. You have an excellent attitude. That's more than half of getting well faster most times.