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@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16 Don't quit before the miracle....

I'm late to the party, but my congratulations are still BIG! What a heckuva time you had!

I'm always envious when surgery is an option for someone. It offers such a measurable outcome. For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck.

Hello. I had a 1.2 cm round nodule in my RLL discovered in 2006. Had annual scans for 5 years and then forgot about it. Fast forward to 2020 (early) and that nodule had grown to the size of a lime. Upon reviewing my past surveillance scans I found that it had indeed been growing very slowly, but growing. No alarms were set off. Also the SUV uptake wasn't high but wasn't nothing at 1.8 My message is to not forget about it if you go the surveillance route. I ended up with 3 nodes involved and staged 3. Had a RLL VATs, chemo and radiation. Turned out to be Large cell NET (rare for LC) so the stats were scarce. They treated it as if it was small cell. I feel lucky to have had surgery because if it was known to be large cell protocol for surgery is sketchy. I would have it removed. I wish I had in 2006 (was given the option but doc suggesr a PET scan instead). Suffice it to say I was not a happy camper and made them very aware of that fact. Best of luck. Probably ok to go either way...if you keep cognizant it is there.

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These are tough decisions! It is important whatever you decide you are comfortable with it... wishing you the best as you decide.

NYC Guy, You are in the small nodule, unreliable PET result zone. Now you have two choices: a CT scan 2 to 3 months from now to evaluate change in size and or shape, or surgery to obtain a biopsy. Depending on where the nodule is, anatomically, the surgeon may remove the entire lower lobe. I have no suggestion for how you might choose. Stay the course. Tom

I have just been diagnosed with Pulmonary Fibrosis was looking for a support group?

Unfortunately a PET sucks at seeing early cancers. AIS and MIA lung cancers normally show way less than an SUV of 2 . I'd continue to follow the doctor's advise. Continued good luck to you. AIS and MIA Lung cancers have a 100% 5 year survival. AIS. Has a 100% 10 year survival if treated.

I had a small, slow-growing nodule in my lower right lobe that didn't show any uptake on the PET. Because of its location, it couldn't be biopsied without surgery. I had a lobectomy and the noduleturned out to be an adenocarcinoma. My decision to go with the surgery was influenced by my having had two prior non-lung cancers and this thing could have been a metastasis, although the docs all agreed that it was most likely a primary lung cancer due to its appearance on the CTs.

Pet scan came back with:: right lower lobe/lung base nodule with no appreciable uptake may represent an adenocarcinoma spectrum nodule. Notably, metabolic activity of small pulmonary lesions in this region may not be well evaluated due to diaphragmatic motion artifacts. I asked what the Dr said and they said they still advise removal and biopsy. Does this sound right from this indication above off my PET?

Great news

I'm glad to hear this good update! Your chylothorax was quite the adventure!

Just want to send support, Anthony. I'm new here, not diagnosed (yet?) with rescan in early July. I'm slowing finding my way around the site and trying to read and respond some to new-er posts.... please keep us updated on how you're doing....

my LRLL. Aside from my well-documented challenge with a chylothorax, I've been feeling great. Normal activity results in no SOB and aside from the occasional twinge, there is no pain. I can walk stairs without SOB as well. Iin fact, I try to take the stairs (in lieu of the elevator) whenever I can. Yard work (including mowing) is no more difficult than before this experience. I've had one scan since, which was good. Next scan is in June, hopefully with the same results! I hope this helps anyone who is facing the same challenges we all are in this group.

just want to send support, NYC! I'm new here and in a similar position. Rescan in early July.....

I personally would not delay with a rescan or a separate biopsy. Even though not 100% odds are high of it being malignant. Stage 1a lung cancer stops at 10 mm your at 9 now. While it's not known how fast it's growing, every day you wait is a day closer to 1b. While that's still very wet early it's not 1a. 1a systemic (chemotherapy, immunotherapy, targeted treatment) are not even offered. While because of your history they would most likely recommend it if you were 1b. This is the very reason they no longer wait for 10 mm to do a biopsy and now do it at 8 mm Good luck to you. ROSE may come back benign.

NYC Guy, Welcome here. The metastatic concern level increases markedly when pulmonary nodules change size or shape. At this juncture, one's only choice is how to biopsy. Your doctors are suggesting a surgical biopsy but there is another alternative--a needle biopsy. This avoids surgery and a 9mm nodule provides a large enough target to obtain a valid tissue sample for the pathologist's histological (microscope) examination. The PET scan may help you choose because if the scan shows high standard uptake value (SUV) results, malignancy can be presumed. But sometimes small nodules don't give reliable results. Here is information about the PET scan and SUV. If the PET scan does not validate malignancy, I'd explore a needle biopsy before agreeing to surgery. Stay the course. Tom

Hi, I had a 6MM incidental find lung nodule, monitored yearly with no growth. On the 3rd year this past February it was 9MM. Pulmonologist said biopsy or remove. I made appt to follow up but visited a specialist from NYU meantime to get second opinion. This DR said biopsy or remove. I am 47, i was a more then 20-year smoker and my father had lung cancer in his 40's. My father had a lobectomy and survived; he is now 80 years old. The second DR told me He advises removing instead of biopsy since its growing it should be removed anyway. I scheduled the removal in April, I have a PET scan scheduled this week. Can someone weigh in on this please, DR said he would remove it and test it while i am in operating room, if it came back as cancer, he would remove more i guess to clean it out and then close me up. If not, cancer, then just close me up.

I do plan on sticking around, Lou! I'm a big fan of patient health forums. I learned so much initially about my two autoimmune conditions and then joined other related and unrelated sites to give back at a later point. As I said, I'm not actually diagnosed with lung cancer (yet) though local onc believes I have it. Hoping July scan offers clarity - So whether as a patient or caregiver, given family cancer and deaths, I'm passionate about any kind of cancer. This includes lung cancer forums more recently though long-term when it comes to my employment.....

You're very welcome. Knowledge is a blessing to us who suffer from this terrible disease. I hope you'll stick around and get to know more of the good folks here. Lou

Those were very informative and helpful articles, edive. Amazing on the rates of cure when LC is caught early. Thanks for sending these links! I appreciated the information you sent too, Lou... I looked at both areas this morning - thanks!

Welcome, Bob! I'm new here too and awaiting my 3rd scan in July so we're in somewhat similar "waiting patterns." I can't imagine how you're feeling today with your scan Monday. I find I'm wound tighter the week or so before a scan and then until I have results then it's a deep exhale. Wishing you the best with the scan Monday! Hope you get results, a call from your provider and then direction timely - that waiting is a different kind of hard.

Thanks so much, Karen and edive! I'll definitely keep you posted. I'll check out these links later today, edive - thank you!

https://pubs.rsna.org/doi/10.1148/radiol.231988