Any one with Neuroendocrine tumors getting the shot once a month?

Hi Annie. I don’t recall reading anything about alcohol and cancer but since I don’t ever drink alcohol it’s not something I have researched or paid attention to. Maybe others will comment. Good nutrition in general is important and be sure alcohol isn’t an issue with any meds you take.

Ok thank you I'm not a big drinker at all just now an again I like a glass of wine🤗I eat pretty well to,you hear all these things you should an shouldn't be doing it gets a bit overwhelming.

I know what you mean! I wouldn't take any nutritional advice expect from a dietician. A pharmacist can tell you about drug interactions. But on a purely personal level, I do what I enjoy! I'm 71, diagnosed with a rare breast cancer almost three years ago. My basic life style was healthy, and I decided not to get stricter about anything. People talk about quality of life and for me that is about enjoying my world and the people in it. I take my meds, I see my doctors, and I do what I enjoy whenever possible. I think it is fine to make positive changes, but I am not adding any strict lifestyle regimes (although I do know folks who have benefitted--just a personal approach). I've also found it all easier to manage than initially. Have good vacation!

Thank you yes I don't drink much at all just if I go out for a meal,i have a strict diet as i suffer with acid reflux an bloating don't know if its anything to do with this.Did you ever smoke at all? I'm 44 an I did when I was 18 I had asthma as a child but as I got older its completely gone an I don't get any shortness of breath really,I'm quite active. I go to the gym an overall quite well.Its strange having something that doesn't really give any symptoms although the slightest pain or anything in my chest I overthink as I'm not sure of what to expect with lung nets.

@annie12345
Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother even had the more serious NSCLC in his 40s that smokers get even though he never smoked, was thin, fit and otherwise healthy. Stuff happens. I have also had asthma my whole life but it’s only an issue when I am allergic to something or sick. I still have to take prednisone every time I get sick to calm down my lungs.

It sounds like you’re in pretty good shape. I know what you mean about random pains. I also am in treatment for recurrent breast cancer in addition to the lung NETs and DIPNECH. Anyone with cancer that has a random pain always wonders if that’s the cancer spreading. My lung NETs are painless and after 30+ years of slowly growing have never spread outside my lungs. The greatest concern for me with over 50 nodules is displacing healthy tissue, airway obstruction, etc. which is already the case. Yours will be even more manageable with few nodules and no DIPNECH. Enjoy your life because you’re going to be around for a long, long time! We are lucky to have this rare type of lung cancer and not the common kind.

I talked to one lady who had one typical carcinoid the size of a tennis ball at 70. They removed that lung lobe and at 80 she had never had another issue, just yearly CT scans.

Hi there! I have MEN1 too and the same tumors. You are not alone! Please reach out to me anytime. I am heading up a new neuroendocrine support group at The Seena Magowitz Foundation. Please google when you have time. My story is on their website.

My name is Theresa Valentic.

That's amazing ! I feel very blessed an encouraged by this,The largest nodule in my lung is 2.7 mm,one consultant talked about removing it if it gets bigger which I would prefer,then the last appointment she said maybe chemotherapy which I wouldn't want personally as my mum had cancer of the stomach an had chemo I don't think I could go through it.Then another consultant said ppr if iv got that right? I'm not even sure what that is targeted treatment? but that's in the future if it does get bigger.Im sure DIPNECH has been mentioned on one of my scans ! Gosh it's all so confusing but its definitely multiple lung nodules in both lungs an typical nets.I hope your doing well with the breast cancer side of things you have been through it.Your in my prayers 🙏

@annie12345
My largest was 2.6 cm and they destroyed it with microwave ablation 4 years ago and no regrowth. Surgical removal is the standard treatment but that’s not an option for me due to the number of nodules in all lobes. I will have two more troublesome nodules destroyed with cryoablation in September. I told him I wanted to enjoy my summer first. He said that’s fine because they are slow growing so we can walk not run in my case.

No one has ever mentioned chemo for my lung NETs so definitely get a second opinion from a NETs team before ever going that route. It is not treated the same way as common lung cancer. I like conservative treatment to preserve quality of life.

PRRT (google it) is targeted radiation thru an IV but you need to have somatostatin receptors and I don’t based on my DOTATATE scan. That seems to be more commonly used with GI NETs. Has anyone reading this had PRRT for typical lung NETs? I think it’s a pretty rough treatment.

You’re in my prayers as well.

Thank you its all so new to me all these medical terms😀because I'm in the UK it's hard to know what treatment is available to me without it costing thousands ! I guess its different in the US ? I'm thinking they can't be to worried about this nodule otherwise they surely would be thinking of doing something asap.Yes I got the impression that because I have nodules in both my lungs they couldn't do surgery they did mention it was a possibility but then the last conversation I had they were very vague.😒

@annie12345
That’s hard when cost becomes the driver. Yes, I’m lucky I’ve always had great insurance plans. I do pay a few thousand a year in premiums for more control and freedom to choose any doctor but all my treatments are covered 100%.

He is only ablating the tumors that are causing an issue or might metastasize due to size or unusual behavior. These next two nodules are blocking airways and causing impacted mucus, just behaving suspiciously. He said we need to clean up that area LRL as it’s concerning. I will be asking more specifics. I like details. But since the tumors are so slow growing it’s not a rush, but soon. Ablation is not a pleasant procedure and I have to be awake to hold my breath repeatedly in command. Last time I had a partially collapsed lung afterwards and two months of physical therapy to fix my upper back, neck and shoulder (aggravated pre-existing issues) so it really would have cancelled out all my summer activities and nature walks in lovely weather. I’m glad he’s letting me wait. He wants to do each tumor in a separate procedure so it’s easier on me but I’m hoping for a single procedure for one recovery period. I don’t really want to mess up my fall either. Haha