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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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🙂 Thanks for your rsponses, I appreciate them but once again life got overwhelming and I haven't been checking in here.I had a wedge resection surgery in May on the left lower and it was stage 2 so I'm glad I got in, I got referred to Gandara at Davis in April and he'd recommended molecular testing on both after biopsy or surgery( i think that was the term) to compare what I now call Thing1 on the right and Thing 2 on the left but after Thing1 in 1/24 I'd landed at an Oncology office that after all this time just last month kind of "broke up " with me using the "it's not you ,it's us" method saying they are radiation oncology and I don't need radiation and they can't order that kind of testing so they were referring me back to Davis and that was a month ago and I'm just frustrated and overwhelmed. I'm feeling pretty good overall , my ribs started hurting with a poking feeling but I have read that is normal and it's only in the 5th month after surgery, I asked onc about odds etc and she said they'd cover it at next appt, but now I don't have one so I still have questions and like I told surgeon no matter how cute he is I would rather not just have him take pieces of my lungs out yearly until there is nothing left lol.
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!
@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/.
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 ReactionsCan tell me l was diagnosed with Neurocarcinod cancer tumor cancer 2023. They have grown slightly, in my right lung, plus adding in the bronchiectasis found last scan. Friday, My oncologist wrote following patient for
Neuroendocrine carcinoma? Is that another term for from neurocarcinod cancer? No lymph nodes.
I have a new bronchiectosis, a tube condition that gets clogged with mucous and probably a few baby carcinoid causing such conjestio , coughing. It is near the opening to my airways to my heart.
They can always do a needle through your side ribs.
Either way they would put you on preventative medication. Good luck!
I hope that it goes well for you, it sounds like you are in good hands. I can totally relate to that worry every day feeling, mine grew 2 mm in a month and every day that has passed since that PET scan I can't help but wonder how much that is a day. Much Love & Light to you, I hope to hear it just showed up and wasn't growing fast but your mind is eased.
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1 ReactionYeah, I had the robotic bronchoscopy last time around and as far as things I have been through not so bad! I have pretty good lung capacity as it is but if it's positive would prefer another route mainly because of all of the lung based viruses etc. out there in the wild running amok if that makes sense! They said pulmonologist wouldn't be comfortable doing biopsy close to aorta so I'm hoping he can do it with needle or something rather than remove more lung and going through that again.
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1 ReactionI had a robotic bronchoscopy last year but for some reason they only biopsied the right side and upper lobe plus about half of middle and some lymph nodes were taken out and lung was stage 1 adenocarcinoma. For some reason I'd feel "safer" doing that again!
No it’s not in a difficult area. Lower Right Lung. She feels that why put me under for 30 to 45 minutes for an ION biopsy when it should be removed given my history and age. She feels optimistic that it will be malignant.