I am 75 and have carcinoid tumors NET in lungs

@nannybb
The BRCA genes are primarily thought of as breast cancer genes. They also really increase the chance of ovarian cancer so I had my ovaries and tubes removed at the same time as my double mastectomy. BRCA also increases risk for pancreatic cancer and melanoma (my brother had this) so I’m monitored for those too. So far as they know BRCA doesn’t have any connection to NETs.

@nannybb
They can see diverticulosis and diverticulitis on a CT scan but of course you should have your scheduled colonoscopies as well. Whenever I feel diverticulitis starting I immediately go on a clear liquid diet to let things calm down naturally.

@nannybb
What else do you have that is related to lung NETs? I also have PCOS and diverticulitis (many times) and neither have any connection to lung NETs that I know of.

@californiazebra It was a long rabbit hole I went down. Most of it had to do with hormone levels that were never corrected that ended up causing something else because of operations. Like the shots I'm on are hormone related. I asked my doctor if having PCOS would be affected by them. The doctor said no, but AI said yes. Just because you have a total hysterectomy doesn't mean you don't still have the problems that come with PCOS. The shots themselves can mess up your insulin and thyroid levels. I mentioned my mom and grandmother having Paget's disease of the breast. Very rare. Ductal carcinoma is related. I wish I had my mother's medical records.

@nannybb
PCOS is a whole syndrome so even removing my ovaries didn’t fix everything. I don’t see that Paget’s is neuroendocrine, but rarely can be related to another neuro condition. I’ve been using AI a lot and while I have received some great information, I’ve also noticed it’s programmed to be very agreeable with you so it wants to please when you’re looking for ways to connect the dots. It can also contradict itself in the next conversation we have on the same topics. It’s all about how you phrase the question. Just for fun, I just asked AI if toe cramps lead to cancer. It answered while they don’t directly lead to cancer it can be a sign of metastatic cancer in the bones. Again, it helps you find any link. So now everyone with a toe cramp may worry they have terminal cancer. Be careful of the one in a million cases responses.

Like so many of us, you likely have many different medical conditions and are wondering if there is a common link to all of them. Maybe some, but probably not all. I know it’s hard not to worry. Just keep up with your screenings and make sure you’re still enjoying fun stuff in life outside the medical stuff. We don’t want to just survive, but to thrive. ❤️

@californiazebra I am not agreeing with everything AI is giving me. I also know about the fact it can "hallucinate" and "drift off." I was mostly using it to find out about connections between multiple operations and adhesions. That was brought up by my pain specialist when she had to do ultrasound guided nerve block for the second time for my lung pain. Because of a question I asked about genetics, AI went into a connection with my families history of Paget's disease and carcinoid cancer. Since two family members have had this form of cancer, I am striving to keep up to date on it. That is all. At this point in my life, I am not thriving, but my goal is to get back to work. It is not an attitude thing, it is a on-going pain situation. Hopefully the ablation will help, but I don't know how the possibility of adhesions at the staples site might factor in now. I'm not so simple minded to think a toe cramp could signal cancer. And I am not trying to connect all the dots. Just need to get back to work. 💕

@jhhaas
I get chest CT scans every 4-6 months depending on how the last scan looked. When my IR made that statement he was actually referring to ablation not monitoring. His point was that things change slowly unlike an aggressive cancer where a few days delay could be a matter of life and death. My new pulmonologist who has several DIPNECH patients also just told me the obstructions may come and go in their own so he is also in favor of moving slowly to allow them to self-correct. I don’t like invasive procedures so I like to take a conservative approach but not be in denial or negligent. I didn’t think doctors were moving fast enough with my very aggressive breast cancer, but I pull back the reins on this very very slow growing NETs/DIPNECH. You’re on the right track.

@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.

@nannybb
Sorry you’re in pain. Pain and nausea are definitely quality of life spoilers. Don’t think you’re simple minded at all. Just hoping to alleviate worries AI might throw out. I’ve found the people on this site are the half that do their research and like to be informed so they can make good choices. I admire that in people. Hope they can fix you up so you can get back to your life.

I’ve been in the ER for the past few hours. Severe chest, back, jaw and ear pain woke me up early. After 30 minutes my whole body went into the shakes just like it did during my mini-stroke a few months ago so I called 911. Nitroglycerin in the ambulance twice brought the pain way down. Just had a CTA, hourly blood tests, jury is still out. Sure hope I’m going home today. Things to do, places to go, people to see. 😊

@nannybb Ugh - sorry about the gastric stuff! I was diagnosed with celiac at age 64, so I’m always concerned about damage to the intestines also. Without even thinking about gastric nets. Always something, eh? Lol