I am 75 and have carcinoid tumors NET in lungs

I’m glad you found someone who understands nets. That’s actually the reason I went to memorial Sloan Kettering for a second opinion, as a world class cancer hospital. My lung tumors were found incidentally when I was having a scan of my heart. So the local cardiologist referred me to a local general pulmonologist, who didn’t seem concerned, but thought maybe it would be wise to do a biopsy. This was all so new to me, and Memorial Sloane Kettering is within easy reach for me, and with one phone call I had an appointment at the end of the week with them. Point of reference, it took me three months to get an appointment with the local pulmonologist. By the time I saw the MSK doctor, he had reviewed my scans and test results and already suspected it was nets, which I had never heard of. He’s very good. So I trust him to monitor it. The thing is with DIPNECH, you can’t remove all the lumps and bumps and tumorlets or you won’t have any lung left. But because the largest one lit up in the PET scan, and there were also two smaller tumors in the same lobe, he deemed it best to remove that lobe, and I’m glad he did. No lymph nodes were involved, it was typical, and he just watches for changes. I just wish I had a local pulmonologist who knew something about nets to ask questions etc. I have a scan coming up in early May so I’ll see how things are going. For sure if there are any changes, I would see someone else. But I think if there were any changes, my MSK doctor would refer me. The problem is finding a lung net specialist. I actually consider my MSK surgeon pretty much a net specialist, but his specialty in the field is oncology/surgery. There are more specialists for GI nets from what I understand.

@rogo
Are your scans with contrast ?
I was provided with the same information

@jhhaas
Are there thoracic oncologist at MSK who specializes in
Pulmonary Neuroendocrine Cancer?

@nannybb Just had a liver debulking with him and was discharged yesterday. Dr Pegna is a top rated oncologist who specializes in Nets. I am lucky to have him in my own town. I changed to Humana insurance from Providence so I could see him.
As a nurse I think healthcare has gone downhill because of many factors, ----money is the top one... ---We do not need insurance companies to dictate where our monies (collected from us through the years) are being spent or to tell us they will decide who we can see and whether or not we are "covered". I do not believe covid had much to do with this it has been a " slow growing tumor "in our system for a while now. Somewhere along the way we lost control of our voices and gave it over to people trying to find any reason to deny us our benefits.. Thats just my two cents on the political money side of things. I am not on any treatment now I will have follow up in a couple weeks so we can move forward.

@californiazebra I'm sure the idea of taking supplements does not thrill you, but my eye doctor put me on some that I think have helped. I'll list them, but again it may be of no interest to you. I DO have to drink a lot of water with them.
* Nordic ultimate Omega D3 minis
* Hydroeye
I also use an eye lid scrub ( which I know helps me) OCu SOFT Lid Scrub original. I use it in the shower and Oasis eye dropswhen I get out. I can get all of these on Amazon. Lastly, eye patches you warm in the microwave I use at night. The brand I like is Bruder...also Amazon. I'm sure you can 👀 how very dry my eyes really are. Oh, and I drink carrot juice. The end.

Very welcome. After I sent it, I had second thoughts that I may have assumed you WANTED that information. I also realized I had not really commented on how wonderful the medication turned out to be for you. It is rare that a side effect is a good one. On the topic of animals, they can be such a comfort. It sounds like you personally do not own one (?) I would love to get another cat. Mine had to be put to sleep in the midst of Covid. He had cancer under his tongue. It took multiple visits to various vets to get that diagnosis. I kept telling each one I knew it was something to do with his mouth. They all just kept looking at his teeth. I miss him so much. Having something to love is super important. Blessings.

@haelsky my scans are without dye. At the very beginning they used dye. But the past few years no dye. I don’t know why the difference.

@nannybb
Fortunately, I was able to have hypoallergenic dogs so I had 25 and 50 pound poodles and rescued a couple mini-schnauzers that have fun personalities. For 15 years I had 3 dogs at once. The last 3 made it to 16, 16 and 18 in good health. Wow. Have been without for 3 years. Not getting more because of uncertain health and needing friends to walk them (condo no yard) a few times a day post-op, radiation, collapsed lung twice, etc. There are also too many coyotes where I live to safely have small dogs. I just pet other dogs on my daily walks now. Good relationship with squirrels, crows and various small birds that come to my patio daily and call for me to come out with nuts. Crows can make sweet sounds and a few can say hello (yes, they can learn up to 100 words). So cute! Friends and neighbors refer to me as the squirrel and crow whisperer and Snow White. Haha My son is Dr. Doolittle for sure. My son and I have gone to some fun drive thru safari parks and petted lots of wild animals sticking their heads thru the car window. So fun! Back stage private animal encounters at zoos. I wanted to be a veterinarian when I was growing up but being allergic to everything squashed that dream. My condo is full of lifelike wild animal statues because that’s how I enjoyed animals while so allergic. We always find workarounds, right? 😊 It’s so hard to lose our beloved pets, but I hope you can get another cat to love.

@rogo
Was age a factor (I am age 78)
and they were concerned about radiation and dye issues?