How far do you push your doctors?

Posted by onedayatatime66 @onedayatatime66, 1 day ago

I had a CT Scan in 8/24 and it showed multiple ground glass nodules all between 2-3mm. There was no mention in the Radiologist report about any GGN in the upper lobes and I was placed on oncology protocol surveillance. On 4/29/25 I had a second scan that showed, in addition to the above GGNs: “Persistent 11 mm groundglass nodule in posterior segment of right upper lobe, which could represent an adenocarcinoma spectrum lesion.” My Pulmonologist stated “recommend 6 month follow-up.” When I expressed my concern and asked if he is going to recommend a PET or biopsy and remove, he stated that wasn’t protocol but he would bring this to the tumor team. I reminded him that I have the ATM gene mutation and am a former smoker. I’m taking no chances on a misdiagnosis; my best friend died within 8 months at 56 because they were misdiagnosed. Anyone go through this and would you seek a second opinion? I also have bladder cancer and my ovaries & fallopian tubes are being removed next month.

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GGNs will not show up on a CT scan unless they are part solid as their molecular activity is very slow and PET scans lol for high activity readings.

If you are not comfortable waiting six months I would push for a 3-4 month follow up.

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Good Morning- Wow! You have a lot going on! Is your oncologist for your lungs the same oncologist for your bladder cancer? Have they connected the two? When mine LUL adenocarcinoma was first seen it was 8mm and spiculated. (That hospital never even told me they saw it- it was found in a CT after a car accident) 9 years later I had moved to a new city here in AZ, and I was setting up a new primary physician. Because of my smoking history and the calcium levels in my blood, he aggressively urged me to get a lung screening. It came back that the nodule had grown to 2 cm. (Slow growing actually- for having it 9 years). He ordered a PET Scan, which I told him to send to Mayo Clinic to do. I said “If there is cancer, that’s where I’m going for treatment”. It barely lit up, but that was enough for them to want to do a bronchoscopy, but could only check lymph nodes because of where it was located. The decision was made to take it out. I had VATS surgery. I was 58 then. Do you have a Mayo clinic or a Cancer center you are going to? I would check if ALL of your doctors are talking to each other and collaborating on your care. In my first case I even asked the first hospital to send all results to my primary and it never happened. I could have caught it even earlier had I known. We have to be our own advocates, secretaries, schedulers, etc. because sometimes important issues or tests may get lost between offices and hospitals. With Mayo, I have no worries of that because they have an entire team working on your care. I pray that You get the care you need, and I’m sorry you are going through this! I also worked in law enforcement, not as a deputy but as a Supervisor of Records/Warrants and Sex Offender compliance. All the paperwork is essential, because one missing piece, or poorly written report or warrant can change an entire outcome. My point being, it’s up to you to be the “Supervisor of your case”. Push, Push, Push! If they are not willing, get a second opinion, maybe even a third if needed. God Bless YOU! I pray you get the care you need, and have a terrific outcome! 🙏🙏🙏

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The 2-3mm nodules are pretty small. I'm not even sure if they could biopsy them. The "Persistent 11 mm groundglass nodule" could probably be biopsied but since they say it is persistent makes me believe that it has been around for awhile on your scans and isn't growing?

So right now they are watching and waiting for growth. Biopsies are not without risks. They are trying to spare you as much lung tissue as possible.

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I went through watch and wait on a small spot for a year. Was ok with it. Had a biopsy at Mayo FL. and then surgery to remove a small area of lung. The spot was 11 mm and was a typical neuroendocrine carcinoid. No malignant tissue around it. No other treatment required. Went back for a follow up scan a year later and the report cited a new suspicious area. I waited for a call from the Dr because I had been going there once a year for 12 yrs due to other lung issues. After two weeks no one had contacted me.
I called and discovered the Dr I had been seeing is no longer there and the results were setting in limbo. The appt desk was very apologetic, arranged for me to see a different Dr within 4 days. I have some more tests/scans to schedule. Bottom line, be your own advocate and be willing to ask for the whys and reasoning behind drs decisions on follow up.

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