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Been awhile since I've been here, new nodule growth
Hi , I'm sorry it's been so long and I lost track of this wonderful source. Last year I had an upper right lobectomy and stage 1 adenocarcenoma was found. Surgeon also took half of middle lobe & some lymph nodes. My left lung with 5 or 6 nodules was never biopsied nobody told me that and I had thoughts about it, anyhow in Decemeber CT showed that a 0.8 x 0.8 MM nodule in lower left had grown to 0.9x 1.0 and they said "no need biopsy ,it's too small" but ordered PET (which it took them 3 weeks to get me in to discuss) showed it's now 1.0 x 1.4 CM and some of my cervical lymph nodes had suv of 7 up from 4. She said something about just monitoring it and I felt they were kind of minimizing my concerns (and I'm terrified of losing Medicare) and said but it has grown like 2 mm in a flipping month so she went and talked to Dr and came back over 10 minutes later with new plan to have surgeon remove it, can't biopsy because it's near aorta. I'm really feeling like they hadn't really reviewed the PET scan because I don't think surgery would be recommended just to "humor" me. Anyhow I'm nervous and nobody really has covered odds with multiple nodules for me. Has anyone had a similar experience??!
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When I had a my first lung cancer in 2014 they did a CT guided needle guided biopsy due to the location of my nodule. Perhaps you can ask.
You don’t sound comfortable with your doctors. If not you should definitely find new doctors,,, that’s ridiculous to wait that long for results,
Can you get your medical in a My Chart or something similar? I see all my test results,office visit notes and more as soon as they are released to the doctors.
Some people Don’t want to see and wait on the doctor to discuss.
Posting them to you is required by law now I believe but you can opt out if you.There should be a portal or my chart link through your doctor or hospital.
Where are you being treated?
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2 Reactions@gig666 , Someone from the NETs group (https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/) may be better equip to answer your question about the difference in terminology. I did find this article, referring to a change in approach to naming the cancers. My non-clinical interpretation, I would think they are the same. You may want to check with your oncologist to be sure.
https://netrf.org/for-patients/newly-diagnosed/carcinoid-tumors-renamed-neuroendocrine-tumors/.
I am in Redding California not exactly a hotbed of science lol and I'm always skeptical; I went 7 years starting at 21 having doctors disregard my endless search for a diagnosis of symptoms that turned out to be a stage 3 Astrocytoma because nobody HEARS young cute newly clean & sober females 0_o. I got married and pregnant at 27 and luckily I was in Las Vegas and had culinary union insurance and got the BEST surgeon & a clinical drug trial for that and I'm a 29 year SURVIVOR ! I have every medical portal available even imaging, which is how I even found out about the initial CT results last year that led to right upper lobectomy and had to call and get on people's nerves to be heard then after I got "lucky " and a "new patient " appointment led to a lcsct and slew of tests from doctor who then moved away ( My angel ! I also have a friend who was an ICU& Oncology nurse then a nurse practitioner and now does Eastern Medicine who looks over things and advises me if I don't understand. When I hear from surgeon I am asking about needle biopsy but I'm seriously considering asking for referral to Stanford or Davis!